Lesbian, Gay, Bisexual, and Transgender Healthcare

A Clinical Guide to Preventive, Primary, and Specialist Care

Kristen L. Eckstrand Jesse M. Ehrenfeld Editors

123 Lesbian, Gay, Bisexual, and Transgender Healthcare

Kristen L. Eckstrand • Jesse M. Ehrenfeld Editors

Lesbian, Gay, Bisexual, and Transgender Healthcare

A Clinical Guide to Preventive, Primary, and Specialist Care Editors Kristen L. Eckstrand, MD, PhD Jesse M. Ehrenfeld, MD, MPH Program for LGBTI Health Program for LGBTI Health Vanderbilt University Medical Center Vanderbilt University Medical Center Nashville , TN , USA Nashville , TN , USA Department of Psychiatry University of Pittsburgh Pittsburgh, PA, USA

ISBN 978-3-319-19751-7 ISBN 978-3-319-19752-4 (eBook) DOI 10.1007/978-3-319-19752-4

Library of Congress Control Number: 2015959790

Springer Cham Heidelberg New York Dordrecht London © Springer International Publishing Switzerland 2016 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifi cally the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfi lms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specifi c statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made.

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Springer International Publishing AG Switzerland is part of Springer Science+Business Media (www.springer.com) F o r e w o r d

LGBT Health in a Changing World

A decade ago, there were few options for serious study of the health needs of LGBT people. There were no texts in the United States, there was no ofﬁ cial recognition by the federal government, and providers with interest in caring for the needs of LGBT people were most notably found practicing in a handful of health centers mainly located in large cities around the country as well as in private practice. GLMA: Health Professionals Advancing LGBT Equality, formerly the Association of Physicians for Human Rights, held an annual conference that provided some anchoring and sustenance for clinicians interested in caring for the community who there were able to feel as if they had some collegial connections from across the nation. How things have changed! This is now the second text on LGBT health care in the United States, following the publication of the Fenway Guide to LGBT Health by the American College of Physicians in 2008. Healthy People 2020 contained a section on the health disparities experienced by LGBT people in the United States and put them on an agenda for eradication in this second decade of the twenty-ﬁ rst century. The National Institutes of Health commissioned the Institute of Medicine of the National Academy of Sciences to write a report on the state of LGBT health and to delineate a research agenda aimed at learning more about the etiology of and barriers to overcoming disparities in care. This publication “Lesbian, Gay, Bisexual and Transgender Healthcare: A Clinical Guide to Preventative, Primary, and Specialist Care” has become an invaluable resource for anyone wanting to read what is and is not known about the LGBT population and gather ideas for study and education. Changes in federal policies have been legion and coming in rapid sequence with the legalization of same-sex marriage. The Affordable Care Act protects LGBT against discrimination for policies purchased through the marketplace. There are new regulations prohibiting discrimination in nursing home admissions. Perhaps the most important reason to use this readily available text is that care of LGBT people is now seen as a critical offering of many mainstream healthcare providers across the nation. It is not just happening in pockets or large cities, but across the nation and increasingly the world. Despite personal politics, most healthcare providers believe in providing equitable care for all, including LGBT people. This places great importance on the easy availability

v vi Foreword of standards of care on just the topics covered in the chapters of this book. It is important to understand unique clinical needs, but just as important to be able to ask questions to understand one’s identity, behavior, and desires and how to systemize what should be routine screenings and immunizations based on that information. It is important not only to recognize the need to learn about one’s gender identity but also how to appropriately and sensitively approach those who have and may not have had any signifi cant surgery in order to assure that necessary cancer screening is carried out correctly. These are but a few examples of why we need more resources on the healthcare needs of LGBT people. In addition, we have to create programs for care that do outreach to the very diverse people who are L, G, B, and/or T as well as others who may not readily identify as such but who engage behaviors and have desires that warrant exploration by caring and sensitive clinicians who work in inclusive and affi rming care environments holistically providing medical and behavioral health needs optimally in an integrated setting. The challenges ahead are great. Many states which chose not to extend Medicaid are in the South where there is a high incidence of HIV among young MSM, a group which may be a proxy for a larger circle of LGBT people who may still be uninsured. We need to fi nd those who are uninsured, or simply not accessing care, engage them in discussion to help them overcome possible negative experiences with the health care system, work with them on understanding the importance of seeking care, and help them fi nd places where they can receive appropriate care. I end this introduction with the hope that it will not only an introduction to a new resource but an introduction to a new generation of providers who will enlarge the circle of clinicians caring and teaching about caring for LGBT people in the years ahead.

Boston, MA Harvey J. Makadon Pref ace

Individuals identifying as lesbian, gay, bisexual, and transgender (LGBT) experience disparities in access and receiving health care, as exemplifi ed in foundational reports including the Institute of Medicine’s The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding and the National Center for Transgender Equality’s Injustice at Every Turn: A Report of the National Transgender Discrimination Survey . As a result, striking advances have been made over recent years to address disparities in the quality of care and health outcomes of individuals who identify LGBT. These improvements address all aspects of personhood and across the healthcare system from the clinic environment, patient-provider interactions, and quality medical care. The result is improving access to and receipt of quality care by LGBT individuals. The breadth of information available for health care practitioners is exciting; however, synthesizing emerging research and new guidelines into the patient care encounter can be overwhelming to healthcare providers unfamiliar with the health needs of LGBT patients. Furthermore, challenges arise when defi ning what is core clinical knowledge for all practitioners and what is specifi c to different clinical specialties. For example, what information do all healthcare providers need to know to provide quality care for LGBT individuals versus what information do Pediatricians needs to know? Surgeons? Dermatologists? The purpose of this book is to serve as a guide for LGBT preventive and specialty medicine that can be utilized within health professions education from students, residents, and healthcare practitioners. The book begins with core information on providing care to LGBT individuals relevant to all healthcare practitioners. Subsequent chapters address best practices in specialty and subspecialty care, providing depth beyond core clinical concepts. Across chapters are threads of information related to healthcare systems, patient advocacy, and sociopolitical climate as they relate to clinical care. Specifi c attention is paid throughout the text to how we can ensure our healthcare systems are better designed to accommodate the needs of LGBT patients. Each chapter is accompanied by learning objectives linked to the Association of American Medical Colleges’ Professional Competencies to Improve Health Care for People Who Are or May Be LGBT, Gender Nonconforming, and/or Born With DSD . This text is thus aligned with emerging best practices in education and training to facilitate the understanding and acquisition of key concepts.

vii viii Preface

It is our hope that this text will inform quality health care for LGBT patients, ultimately reducing the inequities in health care faced by LGBT individuals and improving the health of LGBT communities.

Nashville, TN, USA Kristen L. Eckstrand Jesse M. Ehrenfeld Acknowledgements

This book would not have been possible without the support of our families, our colleagues, and most importantly our LGBT patients from whom we have learned so much. Special thanks to Irene Eckstrand, Steve Eckstrand, Nathan Eckstrand, and Laurel Eckstrand, Judd Taback, David Ehrenfeld, and Katharine Nicodemus. Additionally, we would like to thank our Vanderbilt Team—Drs. Andre Churchwell, Kim Lomis, Amy Fleming, and Bonnie Miller—for their encouragement in the development of this book and the Vanderbilt Program for LGBTI Health.

Contents

Part I The LGBT Population and Health

1 Understanding the LGBT Communities ...... 3 Derek R. Blechinger 2 Access to Care...... 23 Keisa Fallin-Bennett, Shelly L. Henderson, Giang T. Nguyen, and Abbas Hyderi 3 Culture, Climate, and Advocacy ...... 31 Baligh R. Yehia , Scott N. Grossman , and Daniel Calder 4 Internalized Homophobia, Disclosure, and Health ...... 39 Sarah C. Fogel

Part II The LGBT-Inclusive Clinical Encounter

5 Clinic and Intake Forms ...... 51 Craig A. Sheedy 6 Medical History ...... 65 Carl G. Streed Jr. 7 Utilizing the Electronic Health Record as a Tool for Reducing LGBT Health Disparities: An Institutional Approach ...... 81 Edward J. Callahan , Catherine A. Henderson , Hendry Ton , and Scott MacDonald

Part III LGBT Preventive Health and Screening

8 Primary Care, Prevention, and Coordination of Care ...... 95 Keisa Fallin-Bennett, Shelly L. Henderson, Giang T. Nguyen, and Abbas Hyderi 9 LGBT Parenting ...... 115 Christopher E. Harris 10 Intimate Partner Violence ...... 125 Tulsi Roy

xi xii Contents

Part IV LGBT Health in Specialty Medicine

11 Pediatric and Adolescent LGBT Health ...... 143 Henry H. Ng and Gregory S. Blaschke 12 Geriatric Care and the LGBT Older Adult ...... 169 Michael Clark , Heshie Zinman , and Edwin Bomba 13 Adult Mental Health ...... 201 Christopher M. Palmer and Michael B. Leslie 14 Sexually Transmitted Infections in LGBT Populations ...... 233 Andrew J. Para , Stephen E. Gee , and John A. Davis 15 Dermatology ...... 263 Brian Ginsberg 16 Urologic Issues in LGBT Health ...... 289 Matthew D. Truesdale , Benjamin N. Breyer , and Alan W. Shindel 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT ...... 309 Kristen L. Eckstrand , Jennifer Potter , and E. Kale Edmiston

Part V Transgender Health

18 Interdisciplinary Care for Transgender Patients ...... 339 Christopher A. McIntosh 19 Medical Transition for Transgender Individuals ...... 351 Asa E. Radix 20 Surgical Treatments for the Transgender Population ...... 363 Randi Ettner 21 Facial Feminization Surgery: Review of Facial Analysis and Surgical Procedures ...... 377 Scott R. Chaiet

Part VI Emerging Topics in LGBT Medicine

22 Immigrant and International LGBT Health ...... 391 Samantha J. Gridley and Vishesh Kothary 23 Differences of Sex Development/Intersex Population ...... 405 Matthew A. Malouf and Amy B. Wisniewski 24 Legal and Policy Issues ...... 421 Ignatius Bau and Kellan Baker 25 Common LGBT Sexual Health Questions ...... 441 Keith Loukes Contents xiii

Appendix A: Chapter Learning Objectives in Competency-Based Medical Education ...... 451 Kristen L. Eckstrand

Appendix B: Glossary of Terms ...... 457 Compiled by Carolina Ornelas and Laura Potter

Appendix C: Resource List and Position Statements ...... 465 Compiled by Laura Potter and Carolina Ornelas

Index ...... 473

Contributors

Kellan Baker, M.P.H., M.A. Senior Fellow, LGBT Research and Communications Project, Center for American Progress, Washington , DC , USA Ignatius Bau, J.D. Independent Consultant, San Francisco, CA, USA Keisa Fallin-Bennett , M.D., M.P.H. Department of Family and Community Medicine , University of Kentucky , Lexington , KY , USA Gregory S. Blaschke , M.D., M.P.H. Department of Pediatrics , Oregon Health and Science University, Doembecher Children’s Hospital , Portland , OR , USA Derek R. Blechinger , M.D. Department of Internal Medicine and Preventive Medicine , Kaiser Permanente San Francisco and University of California San Francisco , San Francisco , CA , USA Edwin Bomba , B.A., M.B.A. LGBT Elder Initiative, Philadelphia , PA , USA Benjamin N. Breyer , M.D., M.S. Department of Urology , University of California San Francisco , San Francisco , CA , USA Daniel Calder , M.P.H. Perelman School of Medicine , University of Pennsylvania , Philadelphia , PA , USA Edward J. Callahan , Ph.D. University of California, Davis School of Medicine , Sacramento , CA , USA Scott R. Chaiet , M.D., M.B.A. Division of Otolaryngology—Head and Neck Surgery, Department of Surgery, University of Wisconsin School of Medicine and Public Health, Madison , WI , USA Michael Clark , Dr.N.P., A.P.N.-B.C., D.C.C. Rutgers School of Nursing- Camden , Camden , NJ , USA John A. Davis , M.D., Ph.D. Department of Infectious Diseases , Ohio State University College of Medicine , Columbus , OH , USA Kristen L. Eckstrand , M.D., Ph.D. Vanderbilt Program for LGBTI Health , Vanderbilt University Medical Center , Nashville , TN , USA Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA

xv xvi Contributors

E. Kale Edmiston , Ph.D. Vanderbilt Program for LGBTI Health, Vanderbilt University Medical Center , Nashville , TN , USA Randi Ettner , Ph.D. New Health Foundation Worldwide , Evanston , IL , USA Sarah C. Fogel , Ph.D., R.N., F.A.A.N. School of Nursing , Vanderbilt University , Nashville , TN , USA Stephen E. Gee , M.D. Department of Obstetrics and Gynecology, Ohio State University College of Medicine , Columbus , OH , USA Brian Ginsberg , M.D. The Ronald O. Perelman Department of Dermatology , NYU Langone Medical Center , New York , NY , USA Samantha J. Gridley , A.B. Vanderbilt University School of Medicine , Nashville , TN , USA Scott N. Grossman , M.D. Department of Neurology, NYU Langone Medical Center, New York, NY, USA Christopher E. Harris , M.D. Department of Pediatrics , Cedars Sinai Medical Center , Los Angeles , CA , USA Catherine A. Henderson , B.A. University of California, Davis , Davis , CA , USA Shelly L. Henderson , Ph.D. Department of Family and Community Medicine , University of California Davis , Sacramento , CA , USA Abbas Hyderi , M.D., M.P.H. Department of Family Medicine , University of Illinois at Chicago, Chicago , IL , USA Vishesh Kothary , B.S. Vanderbilt University School of Medicine , Nashville , TN , USA Michael B. Leslie , M.D. Department of Psychiatry , McLean Hospital/ Harvard Medical School , Belmont , MA , USA Keith Loukes , M.D., M.H.Sc., F.C.F.P. Department of Family Medicine, University of Toronto, Toronto, ON, Canada Scott MacDonald , M.D. Department of Primary Care Network and Information Technology, University of California, Davis Health System, Sacramento , CA , USA Harvey J. Makadon , M.D. The National LGBT Health Education Center , The Fenway Institute , Boston , MA , USA Matthew A. Malouf , Ph.D. Connecticut Children’s Medical Center, Hartford Hospital, University of Connecticut Health, Hartford/Farmington, CT, USA Christopher A. McIntosh , M.Sc., M.D., F.R.C.P.C. Centre for Addiction and Mental Health , University of Toronto , Toronto, ON , Canada Henry H. Ng , M.D., M.P.H. Center for Internal Medicine-Pediatrics , The MetroHealth System/Case Western Reserve University School of Medicine, Cleveland , OH , USA Contributors xvii

Giang T. Nguyen , M.D., M.P.H., M.C.S.E. Department of Family Medicine and Community Health and Student Health Service, University of Pennsylvania , Philadelphia , PA , USA Carolina Ornelas , B.A. Department of Human Biology , Stanford University , Stanford , CA , USA Christopher M. Palmer , M.D. Department of Psychiatry , McLean Hospital/ Harvard Medical School , Belmont , MA , USA Andrew J. Para , M.D. Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA Jennifer Potter , M.D. Harvard Medical School , Boston , MA , USA Beth Israel Deaconess Medical Center, Boston, MA, USA The Fenway Institute, Boston, MA, USA Laura Potter , B.A. Lesbian, Gay, Bisexual and Transgender Medical Education Research Group (LGBT MERG), Stanford University, Stanford , CA , USA Asa E. Radix , M.D., M.P.H. Callen-Lorde Community Health Center , New York , NY , USA Tulsi Roy , M.Sc., M.D. University of Chicago Medical Center, Chicago, IL, USA Craig A. Sheedy , M.D. Department of Emergency Medicine , Vanderbilt University Medical Center , Nashville , TN , USA Alan W. Shindel , M.D., M.A.S. Department of Urology , University of California, Davis , Sacramento , CA , USA Carl G. Streed Jr. , M.D. School of Medicine , Johns Hopkins Bayview Medical Center , Baltimore , MD , USA Hendry Ton , M.D. Department of Psychiatry and Behavioral Sciences, University of California, Davis School of Medicine, Davis , Sacramento , CA , USA Matthew D. Truesdale , M.D. Department of Urology , University of California, San Francisco , San Francisco , CA , USA Amy B. Wisniewski , Ph.D. University of Oklahoma Health Sciences Center , Oklahoma City , OK , USA Baligh R. Yehia , M.D., M.P.P., M.Sc. Perelman School of Medicine , University of Pennsylvania , Philadelphia , PA , USA Heshie Zinman , B.A., M.B.A. LGBT Elder Initiative , Philadelphia , PA , USA Part I The LGBT Population and Health

Understanding the LGBT Communities 1

Derek R. Blechinger

Purpose Do You Have Sex with Men, Women or Both? The purpose of this chapter is to provide an overview of the lesbian, gay, bisexual, and transgender Medical practitioners are often ready and willing to (LGBT) communities, persons affected by differ- ask about sex to round out a solid social history. ences in sex development (DSD-affected), and the This dialogue often begins with the question, “Do unique health needs of these populations. you have sex with men, women, or both?” The rote expectation is that patients will report opposite sex partners. But what do you do when the patient says Learning Objectives something less expected, such as “both”? While medical schools across the nation are • Deﬁ ne key sexuality and gender terminology increasingly teaching future physicians to ask this used by and for LGBT patients (KP1 ) important question, a 2011 study published in • Discuss key differences between gender vs. JAMA showed that 132 schools spent a median of sexuality, gender vs. anatomic sex, gender 5 h of teaching lesbian, gay, bisexual and transgen- identity vs. gender expression, transgender vs. der (LGBT)-related content [1 ]. This content was gender non-conforming, and the various sex- broken down into 16 clinically relevant topics and, ual orientations (KP1 ) when asking what was actually taught, only 8 % of • Identify frameworks for approaching the schools reported teaching all 16 topics. For most unique health needs and disparities experi- schools, topics like HIV and STDs topped the list enced by LGBT & DSD-affected patients as “LGBT-speciﬁ c” while important issues such (KP3 , KP4 ) as LGBT adolescent health, transgender hormone • Discuss the impact of minority stress on sex- management, suicide and coming out were left in ual and gender minorities’ health outcomes the proverbial academic dust. (KP3 , ICS3 , SBP4 ) It is noteworthy that providers are being better equipped to ask the question “Do you have sex with men, women, or both?” but the art of medi- D. R. Blechinger , M.D. (*) cine goes well beyond data gathering. It is not Department of Internal Medicine and Preventive enough to simply elicit with whom a patient has Medicine, Kaiser Permanente San Francisco and sex; providers must use this question and others University of California San Francisco , 2425 Geary Blvd , San Francisco , CA 94115 , USA to build therapeutic alliance, reduce risk, and e-mail: [email protected] improve clinical outcomes. Nearly every LGBT

© Springer International Publishing Switzerland 2016 3 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_1 4 D.R. Blechinger patient (97 %) in the U.S. accesses health care at • LGBT youth are more likely to be homeless non-LGBT afﬁ liated medical facilities [2 ], mak- and are two to three times more likely to ing this an important question even in spaces not attempt suicide [16 – 19 ]. speciﬁ c to LGBT healthcare. The Kaiser Family • LGBT elders face barriers to health because of Foundation recently released a report showing isolation and a lack of social services and cul- nearly half of all gay and bisexual men have turally competent providers, often having to never discussed their sexual orientation with a “go back into the closet” [20 ]. physician [3 ]. This has important consequences. • Lesbian women are less likely to get preven- All providers, regardless of specialty, must know tive services for cancer [21 , 22 ]. how to identify LGBT patients, understand their • Lesbian and bisexual women are more likely unique health needs, and know how to be not just to be obese [23 ]. culturally competent, but culturally excellent. It • Gay and bisexual men, while making up only is our hope that, regardless of specialty, this book 4 % of men in the U.S., account for 61 % of new will help you achieve just that—excellence. HIV infections annually, 44 times that of other men [24 ]. • Transgender people experience high rates of vic- An Introduction for the Busy timization, HIV/STDs, mental health issues, sui- Practitioner cide and lower rates of health insurance [25 –29 ] .

The turn of the twenty-ﬁ rst century has been an These and many other disparities have also been auspicious time for advancing lesbian, gay, outlined by the 2011 Institute of Medicine’s Report bisexual, transgender (LGBT) health. This his- “The Health of LGBT People” funded by the NIH. torically stigmatized, highly hidden, diverse, Numerous professional associations including underserved population has a variety of unique the American Medical Association, American health needs and health disparities, many second- Nurses Association, American Academy of ary to discrimination and minority stress [4 – 10 ]. Family Physicians, American Academy of In contrast, individuals affected by differences in Pediatrics, American Psychiatric Association, sex development (DSD) still have not received American Cancer Society, GLMA: Health the publicity and consideration that recent Professionals Advancing LGBT Equality, and decades have afforded the LGBT community others have written position statements in support (the history of DSD-affected persons and health of a variety of LGBT issues (see Appendix C). is discussed in detail in Chap. 23 ). Regardless of Our nation and leading medical associations have specialty or geographic location, we all work heard the call to better serve LGBT people, and with LGBT and DSD-affected patients (whether providers across all medical ﬁ elds are being called they go recognized as such or not). Sexual and to respond. gender minority patients are youth, adults, elderly, rich, middle class, poor, employed, unemployed, disabled, able-bodied, citizens, Terminology for the Busy Practitioner immigrants and of every religious, ethnic and racial background that exists in every corner of Sexuality and gender are at the core of our expe- the world. The health needs of sexual and gender rience as human beings. They are complex and minorities span the entire spectrum of medicine. multidimensional, and do not conform to tradi- Efforts are underway to better serve LGBT tional binaries (ex. masculine versus feminine, patients and address a variety of health dispari- straight versus gay). It is the aim of this chapter ties as highlighted by Healthy People 2020: to make the material approachable for all practitioners. Like many things in medicine, broaden- • LGBT individuals have the highest rates of ing your differential for “gender” and “sexuality” tobacco, alcohol and other drug use [11 – 15 ]. will help you better understand your patients and 1 Understanding the LGBT Communities 5

Table 1.1 LGBT and DSD-affected medical terminology in the clinical encounter Acronym Possible associated identitiesa Examples of usage MSM • Gay man • Pt is a 41 year old MSM presenting w/… • Queer • Pt is a gay man w/hx of… • Homosexual • Pt identifi es as a queer man w/… • Can include bisexual men MSMW • Bisexual man • Pt is a 32 year old MSMW in a primary relationship w/… • Queer • Pt identifi es as a queer man, reports sex with men and women • Can include straight- identifi ed men WSW • Lesbian • Pt is a 89 year old WSW presenting w/… • Gay woman • Pt identifi es as lesbian • Queer • Pt self-identifi es as a queer woman who only has sex with women • Can include bisexual women WSWM • Bisexual woman • Pt is a 20 year old WSWM in a primary relationship w/… • Queer • Pt identifi es as a queer woman, reports sex with women and • Can include straight- transmen identifi ed women MTF • Transgender woman • Pt is a 52 year old MTF transgender woman presenting w/history • Transwoman of… • Genderqueer • Pt identifi es as an MTF woman w/intermittent hx of estrogen use. • May be pre- or post-op • Pt identifi es as genderqueer, assigned male at birth, preferred pronouns “they/them” FTM • Transgender man • Pt is a 24 year old FTM transman • Transman • Pt identifi es as man now s/p top surgery, continuing gender- • Transsexual man affi rming hormones now presenting w/… • May be pre- or post-op • Pt identifi es as trans (FTM, pre-op), interested in pursuing GRS in July GRS • SRS (sex reassignment • Pt is a 29 year old transman s/p GRS 4 years ago continuing on surgery) gender-affi rming hormone therapy • Gender reassignment surgery • Pt identifi es as an MTF woman, now s/p SRS × 1 year continuing (less accurate description) on estrogen therapy • Post-op DSD- • Intersex • Pt is a 35 year old woman assigned female at birth s/p genital affected surgery 2/2 congenital adrenal hyperplasia • Pt identifi es as DSD-affected s/p corrective surgery at birth w/hx of… • Pt is a 19 year old woman w/hx of infertility 2/2 androgen insensitivity syndrome presenting with… a These identities may be associated with a preferred sexual or gender identity, but these are not universal associations. Rather than make assumptions, always let patients self-identify their preferred terminology improve your clinical acumen (see Table 1.1 for Beginner Level examples of how to incorporate terminology into clinical practice). Many practitioners without much experience with sexual and gender minorities have likely already heard the terms “lesbian”, “gay”, “bisex- Helpful Hint ual”, and “transgender”. These four terms are Gender identity, gender expression, and often combined into the acronym “LGBT”. sexuality are not binary concepts—think- While this acronym contains both identifi ers of ing of them as having two ends on a linear sexuality and gender, they are not the same. In spectrum artifi cially limits understanding order to understand the complexities of LGBT of their complexities . healthcare, an understanding of basic terminology is required: 6 D.R. Blechinger

“Gender ”—a highly complex biopsychosocial combinations thereof. The fi rst attempts to concept often reduced to a binary set of identi- quantify sexual orientation were made in the ties and behaviors that are either masculine or Kinsey scale, ranking people as 0 (exclusively feminine, male or female. Gender is multifa- heterosexual) to 6 (exclusively homosexual), cited and can be quite fl uid throughout the or “X” for asexual. More sophisticated, con- lifetime, including concepts such as identity temporary models of sexuality have since and expression. Gender is often confused for been developed, recognizing it’s breadth of biologic sex, however gender is independent natural variation and fl uidity throughout a of anatomy. lifetime. “Gender identity ”—an internalized concept of self as a particular gender, regardless of external appearance. Because gender identity is Helpful Hint internally defi ned, it is separate from a per- At the risk of over-simplifi cation: Gender son’s physical anatomy—male genitalia does is between the ears. Sex is between the not mean one’s gender identity is that of a legs. Sexual orientation refers to attraction man, nor does female genitalia or breasts to either of these things (see Fig. 1.1 ). identify someone as a woman. “Gender expression ”—describes a set of behaviors that have been socially assigned as masculine or feminine. Remember that the simple binary of “male” vs. “female” behavior belies the myriad, complex, often overlapping nature of these behaviors independent of actual gender identity. A person may express a particular gender at any given time without changing their gender identity. “Sex ”—a descriptor of a person’s anatomical state, most often reduced to two phenotypes of male (e.g., penis, scrotum, testicles) vs. female (e.g., breasts, vagina, uterus, ovaries). Medically, we know that there are a multitude of natural variations on anatomical sex not just limited to different shapes and sizes but also presence, absence and extent of differentiation of various structures. Regardless of function, phenotypes incongruent with the male vs. female binary are often identifi ed by medical practitioners as differences of sex development (DSD). Fig. 1.1 The modifi ed gender gingerbread person “Sexual orientation”—a set of sexual attractions, model, which can be used as an aid to explain behaviors and/or romantic feelings for men, gender (image courtesy, J. Ehrenfeld) women or both. Sexual orientation is often reduced to specifi c terms like homosexual vs. “ Lesbian ”— used to describe women who are bisexual vs. heterosexual, however there is a primarily attracted to women. This identifi er of broad spectrum of sexual orientations that can sexual orientation notably describes attraction vs. vary depending on the gender identity of the behavior. Identifying as lesbian implies sexual person and that person’s various attractions, activity with women but does not exclude them which may include attractions to certain sexes, from having attractions or sexual experiences gender identities, gender expressions and with men, and it is important to clarify with your 1 Understanding the LGBT Communities 7 patient not only who they are primarily attracted sexual and gender minorities and the often to, but also whether or not they have sex with overlooked “I”, not all DSD-affected individuals men. “Homosexual woman” is antiquated and identify as intersex, and not all intersex individu- can be depersonalizing for your patient. als identify themselves as part of the “LGBTI” “Gay ”—used to describe both men and community. The experiences and needs of DSD- women who have same-sex attractions. affected individuals are unique and may not fi t Historically, this has been used to refer to men under the wide umbrella cast by “LGBTI” . who are primarily attracted to and sexual with men but can also refer to women who are primarily attracted to and sexual with women. If Intermediate Level you are unsure of whether a woman identifi es as “gay” or “lesbian”, ask how they self-identify. “ MSM ”—men who have sex with men, an epide- “Homosexual” is antiquated and can be deper- miologic term describing a man who has sex with sonalizing for your patient. men regardless of how he self-identifi es. MSM “Bisexual ”—used to describe a person who is includes not only men who identify as gay or attracted to both men and women. This can bisexual, but also men who self-identify as encompass a wide spectrum of individuals who straight but are sexual with men. This term is may have leanings toward a particular gender, or helpful when trying to categorize health risks and equal attraction to all genders, or attraction to behaviors at a population level, though MSM specifi c aspects of various genders. Being in a would be unlikely to refer to themselves as MSM, relationship with a same-sex partner does not but more likely as gay, straight or bisexual. make a bisexual person gay. Being in relationship “ MSMW ”—men who have sex with men and with an opposite-sex partner does not make a women, an epidemiologic term exclusively bisexual person straight. Bisexual people some- describing a man who has sex with both men and times experience a unique type of disownment women. A person does not need to identify as from both the straight and gay communities, bisexual to be categorized as MSMW . rejected for not being “straight enough” or “gay “WSW ”—women who have sex with women, enough.” Others can experience a sense of invis- an epidemiologic term described a woman who ibility (e.g. “bi-invisibility”), feeling lost or has sex with women, regardless of how she self- ignored within the LG(B)T communities. identities. WSW includes not only women who “Differences of sex development”—refers to a identify as lesbian, gay or bisexual, but also those group of phenotypes where there is a variation of who self-identify as straight but are sexual with sex, either chromosomal, hormonal, or anatomi- women. This is a useful epidemiologic term, espe- cal, such that one’s sex is not congruent with cially when trying to categorize health risks and society’s male versus female anatomical binary. behaviors at a population level, though WSW This term does not defi ne a person’s identity, would be unlikely to refer to themselves as WSW, rather someone is affected by differences in sex but more likely as lesbian, gay, straight or bisexual. development (DSD-affected). Prior terms for this “ WSWM”—women who have sex with women group have, and still, include “differences of sex and men, an epidemiologic term exclusively development” or “intersex”, and their usage describing a woman who has sex with both men depends on the patient or medical society using and women. A person does not need to identify as them. The latter term is considered antiquated by bisexual to be categorized as WSWM . some, but still in use by many, including the addi- “ Cis-gender ”—a person whose anatomical tion of the “I” to LGBT to form LGBTI. For fur- birth sex is congruent with their gender identity. ther detail, see Chap. 23 . The majority of humans would be considered cis- “ LGBTI”—aforementioned acronym “LGBT” gendered, though many may not have given much with the addition of “intersex”. While the inten- thought to this identifi cation given society’s des- tion of this acronym is to be inclusive of all ignation of cis-gender as default, or “normal”. 8 D.R. Blechinger

“Transgender ”—a person whose anatomical allies who don’t ascribe to being “normal”. birth sex is incongruent with their gender identity. Historically a term used to denigrate LGBT indi- Transgender people often exhibit cross- gender viduals, this term has been reclaimed in the behavior at an early age. If their designated sex is twenty-fi rst century as a term of empowerment. female, their gender identity is male (often shorted Some LGBT individuals, especially those of older to “trans man” or “female to male” or “FTM”). generations, fi nd this word to be hate speech and Conversely, if their birth sex is designated male, too painful or disturbing to use. Self- identifying their gender identity is female (often shorted to as queer has become more common in younger “trans woman” or “male to female” or “MTF”). generations of sexual and gender minorities. Note that using the word “trans-” prior to a patient’s “ Pansexual”—an individual who has a diverse identifi er as a man or a woman can be perceived as set of attractions to a variety of anatomies, gender belittling and should only be used if the patient expressions and gender identities. While at fi rst identifi es that way. For more detail, see Part V. glance similar to bisexuality, the self-designation as pansexual is an intentional rejection of the gender binary and encompasses the whole spec- Helpful Hint trum of sexuality and genders. When considering cis- vs. trans-gender, think back to organic chemistry and recall cis- vs. trans-isomerism (on the same side Helpful Hint vs. on the other side!). During the clinical encounter, refl ect the terminology used by your patient. If you are uncertain about terms or preferred pro- “Genital reassignment surgery ”—often short- nouns, ask. ened GRS , an intervention that surgically changes the genital anatomy of an individual to better fi t their gender identity with society’s corresponding anatomic expectations. “Sex reassignment “ Drag”—a type of cross-gender expression, surgery” (SRS) refers to surgeries affecting geni- often done as performance art. The art of drag has tals as well as secondary sex characteristics. For received national attention via the television show more detail, see Chap. 20 . “RuPaul’s Drag Race”. Men who perform as “ Transsexual ”—in the past, this term referred women are called drag queens and women who to a transgender person after sexual reassignment perform as men are called drag kings. A transman surgery. Notably, this is an adjective and not a is not a drag king and similarly a transwoman is noun. For example, a MTF transwoman who is not a drag queen. Drag is a performative act of now post-op would be medically described as a gender expression, not a gender identity. transsexual woman, as opposed to a transsexual. “ Genderqueer ”—an umbrella term that When used as a noun, the word “transsexual ” is encompasses a wide range of genders. This term often perceived as a highly medical term and is can include those who feel like they fi t outside of considered pejorative by patients who would oth- a gender binary of male vs. female, as well as erwise identify as their gender. individuals who consider themselves to have multiple genders or no gender at all. Genderqueer subverts the simple distinction between cis- Advanced Level gender vs. transgender people, as well as blurring the distinctions between gender identity and gen- “ Queer ”—an umbrella term that encompasses a der expression. A person who identifi es as gen- wide range of sexualities and genders that are out- derqueer may use gender neutral pronouns such side the societal “norm”. This may include les- as “they”, “them”, “their” or fl uidly change bian, gay, bisexual, transgender individuals and between “she/her” or “he/him”. 1 Understanding the LGBT Communities 9

“Trans* ”—the addition of the asterisk (*) to trans (ex. trans*) is meant to be inclusive of gen- Helpful Hint der queer and gender non-conforming individu- Try to avoid gendered or heteronormative als that don’t think of themselves as on a cis- or language during the clinical encounter. For transgender binary (ex. FTM transman versus example, try using “partner” instead of MTF transwoman). Trans* can be used to boyfriend, girlfriend, husband, wife, or describe any person not identifying as a cis-man spouse. Remember that your clinic forms or cis-woman, encompassing the entirety of non- can make this mistake before the patient cis gender identities and expressions. even meets you. “Gender dysphoria ”—the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-5) [30 ] designation for individuals who experience clinically signifi cant distress “ Coming out”—an act by which a sexual or associated with their gender associated with their gender minority discloses their identity to gender identity for 6 months or greater. Gender another person. Coming out to family and other dysphoria replaces “gender identity disorder” as loved ones are often particularly formative an attempt to better characterize the experiences experiences for LGBT people ranging from proof gender nonconforming individuals. Notably, foundly affi rming to violent rejection. When the DSM-5 has an additional diagnostic code for asking a LGBT patient when they came out, you individuals who have already transitioned and are are asking them the fi rst time they disclosed continuing medical treatment (e.g. ongoing hor- their identity as a sexual or gender minority. mone therapy, supportive counseling, surgeries) However, all LGBT people are constantly hav- to ensure treatment access (and insurance covering to come out in large and small ways through- age) without terming their gender or anatomic out their life time—every time they meet a new sex status as “disordered”. Gender dysphoria has person, start a new job, join a new church, and been intentionally separated from chapters even when deciding to hold hands with their including paraphilic and sexual dysfunction dis- loved one while walking in a park. As a result of orders to help address the stigma produced by our heteronormativity, LGBT people are often in a previous attempts at medically coding transgen- constant state of vigilance around the words der, intersex and genderqueer individuals. For they use, their body language and the gender more detail, see Chap. 13 . pronouns they use about themselves or their “ Heteronormativity ”—a subjective world view loved ones lest they come out unintentionally. that heterosexuality is normal and measuring any This hypervigilance can be a signifi cant source variations in human sexuality from the heterosex- of stress and likely contributes to a number of ual “norm”. Heteronormativity is similar in con- LGBT health disparities. For more detail, see cept to “ethnocentric”, as pertaining to sexuality. Chap. 4 . It is a term that addresses the concept of heterosexual privilege, or the advantages in social, political, and economic arenas granted to heterosexuals Exercise: Refl ections on LGBT that are acquired by default given their status as a Terminology valued, preferred sexual orientation in society. Exclusive recognition of heterosexuality and con- Now that you understand some of the basic stant depictions of heterosexual acts in public, differences between sexuality and gender, let’s dive media and graduate medical education are main- deeper. Take the term “lesbian”, for example. stays of heteronormativity, contributing to LGBT Notice that this word describes not only sexual discrimination and stigma. See Fig. 1.2 . orientation but also gender identity. For someone 10 D.R. Blechinger

Fig. 1.2 A diagram showing the relationships between sexual and heterosexual assign a sex to the individual sexual orientation and assigned sex. Some prefer to use (image courtesy J. Ehrenfeld) the terms androphilia and gynephilia, because homo- to identify as a lesbian, they most likely have a needs and stratify risks for each and every patient gender identity that is female and a sexual attrac- we serve. tion to women. This distinction is subtle but Deconstructing LGBT terminology can be important. For example, a transgender woman diffi cult even for experienced LGBT health care whose gender identity is female and their attrac- providers. Continuing to struggle with the con- tion is to other women makes them perceived as tent and asking questions is a sign of a healthy, “straight” by some if only their birth sex is being curious, well-intentioned practitioner. When considered. This, however, would not be honoring approaching this material at an advanced level, it the person’s autonomy in self-determining their is also helpful to recognize your own place of gender and their sexuality. Remember that anat- privilege, whatever it may be, regarding sexuality omy does not equal gender identity, making ana- and gender. Privilege, as mentioned above in the tomic sex irrelevant. A transwoman attracted to defi nition of “heteronormativity”, is a set of other women would most likely self-identify as a unearned social, political and economic advan- lesbian. A transman attracted to other men would tages obtained by virtue of a person’s identity most likely self-identify as gay. Ultimately, every being valued by society. While the focus of this patient has the right to self-identify and it is up to chapter is on sexuality and gender, certainly race, us as medical professionals to learn to ask ques- age, religious affi liations, economic status, mentions that help us understand the unique health tal health, class, profession and other factors 1 Understanding the LGBT Communities 11 come with their own set of privileges and interact Table 1.2 LGBT demographics with sexual and gender identity in a variety of U.S. population ways. Below are some starting places accompa- estimate (%) nied by a hypothetical refl ection to help consider LGBT 3.8 sexuality and gender privilege: LGB 3.5 LG 1.7 • Perhaps you are straight, and you’ve never B 1.8 had to decide whether or not to tell your fam- T 0.3 ily, friends, employer, or government offi cials Lesbian women 1.1 (of women) your sexual orientation for fear of rejection, Gay men 2.2 (of men) discrimination or violence. Bisexual women 2.2 (of women) • Perhaps you are a gay man who has never had Bisexual men 1.4 (of men) to grapple with the idea of being attracted to Have engaged in same-sex 8.2 sexual behavior both sexes and not fully belonging to either the Acknowledge some same-sex 11 gay community or the straight community. sexual attraction • Perhaps you are a cis-gendered lesbian who has never considered what it would be like to have a penis instead of a vagina. rich or very poor. Lesbian women can be African • Perhaps you are a transwoman who, while American. Bisexual men can be Muslim. feeling you have body parts incongruent with Transwomen can be found in rural communities. your gender, have never had your genitals sur- Gay men can be elderly. DSD-affected people gically altered without your consent as a child. can be Southeast Asian immigrants. Bisexual • Perhaps you are bisexual, and have not consid- women can be disabled. Notably, the vast major- ered your increased potential to marry in every ity of LGBT children are born and raised by cis- state in America and improved possibility of gendered, heterosexual parents. This limits the having children without reproductive assis- vertical transmission of culture and histories tance if paired with an opposite sex partner. from older to newer generations enjoyed by other cultures. The shared experiences of stigma, dis- These refl ections are by no means meant to crimination and having to come out as a sexual or shame or discourage practitioners of various gender minority is what ties this complex, some- walks of life, but rather begin the exploration of times highly hidden demographic together. how one fi ts (or does not fi t) in various communi- Same-sex couples are found in 99 % of counties ties and gain greater insight into the experiences across America [ 31]. Regardless of specialty or of those different from you. Being a gay man practice location, all providers care for sexual does not automatically provide insight into the and gender minority patients. See Fig. 1.3 . experiences of a transwoman. Nor does being a transgender person provide someone with special knowledge of the bisexual community. Regardless Helpful Hint of our sexuality, gender or sex, we all should Same-sex couples are found in 99 % of objectively assess our own privileges and limita- U.S. counties. You have sexual and gender tions without guilt and continue to be curious minority patients. about ourselves and others .

LGBT Demographics (Table 1.2) There have been many attempts over the decades to estimate the number of LGBT people Sexual and gender minorities are a unique demo- in the U.S. Alfred Kinsey, famed for his work in graphic as they cut across all other demograph- sexuality and the development of the “ Kinsey ics. LGBT & DSD-affected people can be very Scale”, noted in his research that 10 % of men 12 D.R. Blechinger

Fig. 1.3 Percentage of households with same-sex couples 2010 (adapted from the U.S. Census Bureau) between 16 and 55 engaged in same-sex behav- ple) [32 ]. Gates’ review of state and national sur- ior exclusively for 3+ years. This led to the veys also delineated identity from behavior and popularization of the “10 %” estimate for LGB attraction, fi nding 8.2 % of Americans have same- prevalence. Since then, lower estimates have been sex sexual behavior and 11 % of Americans have made by the National Epidemiological Survey on same-sex sexual attraction. Alcohol and Related Conditions (2004–2005), the National Survey of Family Growth (2006–2008), the General Social Survey (2008), the California Demographics by Sexual Orientation Health Interview Survey (2009), and the National Survey of Sexual Health and Behavior (2009). In 2014, the CDC released its fi rst National Health Challenges in successfully integrating the data Interview Survey on sexual orientation and health. can be found in differing survey methodology, The study which interviewed more than 33,500 consistent ways of asking about sexual orienta- people ages 18–64 found that approximately 96 % tion vs. attraction vs. behavior, and changes in of Americans described themselves as straight, who is included as a sexual or gender minority. 1.6 % gay, or lesbian, 0.7 % said they were bisex- More contemporary data analysis utilizing popu- ual, and just over 1 % identifi ed as “something lation-based data by the Williams Institute at the else.” This equates to approximately 1.4 million UCLA School of Law has become the current lesbian women and 2.5 million gay men. standard, estimating 3.5 % of adults in the U.S. Interestingly, gay men make up a greater percent identify as LGB (over 8 million people) and 0.3 % of MSM than bisexual men (2.2 % vs. 1.4 %), in Americans identify as transgender (700,000 peo- contrast to the trend noted in WSW. Notably, 1 Understanding the LGBT Communities 13 bisexual people make up the majority subgroup transgender, as the repeal of “Don’t Ask, Don’t within the LGBT community but are often subject Tell” in 2011 only applied to the LGB portion of to “bi-invisibility” given their perception as either the LGBT communities, leaving the “T” unad- gay when with a same- sex partner or straight dressed. The military still offi cially forbids openly when with an opposite-sex partner. transgender people from serving, but the results of the National Transgender Discrimination Survey showed us that 20 % of trans people had served in Demographics by Gender Identity the military—two times that of the general population [ 35]. This discriminatory policy continues to Population estimates for transgender individuals be under pressure for change by civil rights advo- remains elusive, largely because population sur- cates, and may hopefully see change even by the veys such as the Decennial Census or American time of publishing this text. Community Survey do not directly ask about gender identity. Attempts at estimating the prevalence of transgender have instead focused on Differences of Sex Development/ transsexualism, given at least the raw prevalence Intersex data from sex reassignment surgery (SRS) clinics throughout Europe from decades ago. A re- There is a remarkable lack of epidemiologic data analysis by Olyslager and Conway [33 ] using when it comes to DSD-affected people. While mathematical modeling from those earlier reports sometimes lumped with transgender people, DSD- found a most likely prevalence to be between affected experiences and health care needs as 1:1000 and 1:2000. Using more recent incidence detailed by the clinical guidelines published by the data and alternative estimation methods, they Intersex Society of North America that are differ- found that the rate is at least 1:500 (0.2 %), and ent from those of transgender people [36 ]. Most possibly even higher. Their results were pre- often, DSD-affected individuals have intersected sented at the WPATH 20th International with the medical fi eld at birth, perhaps experienc- Symposium in Chicago, but not adopted by the ing unnecessary procedures, diagnostic testing or APA. Incidentally, more contemporary research- unwanted surgeries. The Intersex Society of North ers working with population data have found America has endorsed the review of medical liter- similar rates. By averaging the data from the ature ranging from 1955 to 1998 by Anne Fausto- Massachusetts and California surveys, Gates [34 ] Sterling et al. [37 ] that found the total number of estimates the number of Americans who identify people with bodies different from standard male or as transgender to be 0.3 %—nearly 700,000 female anatomy was 1:100 births and people transgender U.S. citizens. receiving corrective genital surgery was 1–2 per Transgender people can be found throughout 1000 births. Complete gonadal dysgenesis is esti- America, from places both urban and rural and par- mated to happen in 1:150,000 a nd hypospadias in ticipating in society in every way imaginable. 1:770. Klinefelter (XXY) was found to be 1:1000, Increased trans visibility in the media include androgen insensitivity syndrome 1:130,000, and remarkable individuals such as Isis King (America ’ s congenital adrenal hyperplasia in 1:13,000 births. Next Top Model ), Thomas Beatie (transman who For more detail, see Chap. 23 . publically came out as pregnant in 2008), Laverne Cox (Orange is the New Black ), Chaz Bono ( Becoming Chaz), Dr. Marci Bowers (pioneer and Youth fi rst transwoman GRS surgeon) and the brilliant and inspiring Janet Mock (author and staff editor at While it is probably true that rates of sexual and People Magazine). Kristin Beck, the fi rst openly gender minorities are very similar in youth as in transgender Navy SEAL, told her story in her auto- adult LGBT populations, efforts are underway to biography Warrior Princess in 2013. Notably, she better describe this highly vulnerable population. retired from the military prior to coming out as Estimates from the CDC’s Youth Risk Behavior 14 D.R. Blechinger

Survey conducted from 2001 to 2009 in nine immigrants. The National Transgender states that assessed sexual identity found 1.0–2.6 % Discrimination Survey [29 ] found that, of 6450 identifi ed as gay or lesbian and 2.9–5.2 % identi- transgender and gender non-conforming study fi ed as bisexual. Students unsure of their sexual participants, 4 % identifi ed as undocumented identity ranged from 1.3 to 4.7 % [38 ]. non-citizens .

L G B T P a r e n t s History Highlights of LGBT Communities (Table 1.3 ) Using U.S. Census 2010 data and Gallup Daily Tracking Survey data, Gates [ 34 ] estimates that Over the decades, the “LGBT” community of the 650,000 same-sex couples in the U.S., 19 alphabet has seen changes, additions, subtrac- % of same-sex households have children under tions and positioning of the various letters in age 18 and 37 % of LGBT adults have had a attempts to continue to describe this diverse set child. Gates also estimates that nearly half of of sexual and gender minorities. Indeed, it is LGBT women and a fi fth of LGBT men are rais- entirely impossible to capture everyone that ing children. Notably, the U.S. regions with the exists outside of the cis-gendered, 100 % hetero- highest rates of same-sex childrearing are in the sexual experience. Together, sexual and gender Midwest, the Mountain West and the South. In minorities are brought together by a shared support of transgender estimates in this analysis, experience of discrimination and “otherness”. National Transgender Discrimination Survey And while LGBT people are together a commu- data shows 38 % of transgender respondents self- nity, they have separate needs. Each of the LGBT identifi ed as parents [35 ]. letters comes with its own unique set of histories—together a community, but with separate needs. The following are highlights of historical Immigrants information you may fi nd useful in better understanding each letter of the LGBT alphabet and Confi dently estimating the number of docu- establishing rapport. mented and undocumented LGBT immigrants in the U.S is a daunting but not impossible task. In a report by the UCLA Law School’s Williams Gay and Lesbian Institute, Gates [34 ] does so by using same-sex couple data gathered by Gates and Konnoth [39 ], The medicalization and cultural defi nitions of Pew Research Hispanic Center data, Gallup “homosexuality”, “sexual inverts” and “gays” did Daily Tracking Survey and the U.S. Census not come until the nineteenth and twentieth cen- Bureau’s 2011 American Community Survey: turies, from the work of historical fi gures such as Sigmund Freud to Alfred Kinsey. However, • 267,000 LGBT undocumented adult immi- evidence of same-sex behavior dates back grants (2.7 % of undocumented adults) throughout ancient history across cultures. A key – 71 % are Hispanic, 15 % are Asian or component to understanding sexual minorities Pacifi c Islander in the twenty-fi rst century is the not-so-distant • 637,000 LGBT documented adult immigrants past medicalization and criminalization of (2.4 % of documented adults) consensual same-sex behaviors and relation- – 30 % are Hispanic, 35 % are Asian or ships. Homosexuality as a mental illness wasn’t Pacifi c Islander. removed from the American Psychiatric Association’s Diagnostic and Statistical Manual Certainly, it is even more diffi cult to estimate (DSM) until 1973. Prior to that, aversion therapy the number of transgender individuals who are using chemicals, mechanical violence and electricity 1 Understanding the LGBT Communities 15

Table 1.3 Highlights of LGBT history 630 BC: Greek lyric poet Sappho born on the island of Lesbos, famous for her lesbian-themed poetry 326 BC: Alexander the Great is fi rst bisexual to conquer most of the known Western world 1786: Pennsylvania repeals death penalty for sodomy 1895: Irish author and playwright Oscar Wilde convicted and imprisoned for gross indecency for same-sex behavior 1937: Pink triangle is used in Nazi concentration camps to identify gay men 1948: Alfred Kinsey publishes the Kinsey Scale 1948: Alfred Kinsey brings a transgender girl to Dr. Harry Benjamin, who uses estrogen for the fi rst time as treatment for MTF transgender patients 1952: Dr. Harry Benjamin’s fi rst SRS patient Christine Jorgensen makes front page of New York Daily News as fi rst American to undergo SRS 1962: Notable author and bisexual African American publishes his novel “Another Country” 1966: Dr. Harry Benjamin fi rst uses the term transsexual 1968: University of Minnesota begins “Bi Alliance” group 1969: Stonewall Riots, an uprising against police harassment of LGBT people at Stonewall Inn, NYC; basis of annual Pride Festival celebrations across the country (June 27th) 1973: American Psychiatric Association removes homosexuality from the DSM-II 1978: San Francisco city supervisor Harvey Milk assassinated 1978: Rainbow fl ag is crafted as a symbol for LGBT pride 1980: First set of Harry Benjamin Standards produced for transgender patient providers 1981: First documented case of AIDS by the CDC 1990: U.S. census includes same-sex household data. 1993: Intersex Society of North America founded 1993: “Don’t Ask, Don’t Tell” signed into law banning LGBT people from serving openly in the military 1993: Transman Brandon Teena was raped and murdered, became subject of fi lm “Boys Don’t Cry” 1994: Olympic gold swimmer Greg Louganis comes out 1996: “Defense of Marriage Act” (DOMA) enacted into law non-recognition of same-sex marriages for federal purposes 1998: Matthew Shepard, a gay student at University of Wyoming, was tortured and murdered 2001: Netherlands fi rst country to legalize same-sex marriage 2002: U.S. Dept of Health and Human Services publishes Healthy People 2010, identifying sexual minorities as having disparate health concerns 2003: Remaining state sodomy laws in U.S. struck down by Supreme Court 2004: Massachusetts fi rst state to issue marriage licenses to same-sex couples 2004: American Academy of Pediatrics reports on the state of LGBT youth health disparities 2007: Janice Langbehn denied access to her dying partner Lisa Pond by Jackson Memorial Hospital despite power of attorney paperwork, Pond passed away without her partner or three young children 2010: Healthy People 2020 includes addressing LGB and T health disparities as a special topic for national public health goals 2010: Hospital visitation rights for same-sex couples established by presidential order to DHHS 2011: Directed by the National Institutes of Health, the Institute of Medicine releases consensus report on LGBT health, demographics, data collection and research recommendations 2011: Repeal of “Don’t Ask, Don’t Tell”, allowing LGB service members to serve openly 2011: “Bisexual Invisibility: Impacts and Regulations” released by San Francisco’s Human Rights Commission 2012: California law bans reparative therapy, the discounted pseudoscientifi c practice of converting sexual minorities to heterosexual lifestyles 2013: DSM-5 eliminates the stigmatizing designation “gender identity disorder” in favor of “gender dysphoria”, highlighting only those distressed by their gender identity 2013: DOMA (Section 3 barring same-sex marriage recognition) repealed, ruled unconstitutional by the Supreme Court 2014: by July, 19 U.S. states have marriage equality laws 2015: Supreme Court rules in favor of marriage equality, making same-sex marriage legal across the U.S. 16 D.R. Blechinger were used on sexual minorities in unsuccessful immune defi ciency (GRID) until HIV was fur- efforts to change their orientation [40 ]. Despite ther understood. During this time, thousands of widespread renouncement of this pseudoscien- gay and bi men died, entire swaths of men cut tifi c, barbaric practice, it continues in many parts from the fabric of the LGBT communities. of the U.S. The end of the twentieth century saw Important work by Levine [41 , 42 ] and other increased political efforts to decriminalize same- scholars pointed out the sense of individual and sex behavior, but it wasn’t until 2003 when the communal trauma experienced by the LGBT remaining state sodomy laws in the U.S. were communities through this ongoing epidemic. struck down by the Supreme Court. It is in this Government inaction under the Reagan adminis- context—a society that considers the way a tration led to incredible losses and the subsequent whole community of people fi nd sex, love and community-based responses to the HIV epi- relationships to be diseased and criminal—that demic. Lesbian women came to the aid of their gay and bi men and women were forced to build dying friends abandoned in hospitals, sometimes community. fi lling the role of family and even nurses [43 ]. Urban centers were optimal places for both AIDS service organizations (ASOs) across the the sheer numbers and anonymity required for country sprang up and into action. Led by LGBT sexual and gender minorities to congregate and activists, ASOs pressed the government and bio- cultivate culture. Many LGBT communities medical industries to respond to the AIDS crisis. across the nation today center around bar culture, Many of these ASOs continue to advocate for as these were the fi rst places where sexual and HIV prevention and care services throughout the gender minorities could fi nd each other. Gay bars nation and created an infrastructure from which were only marginally safe, however, as they often LGBT health efforts could emerge. Advances in were raided by police and others. An historic HIV antiretroviral therapies, post-exposure pro- moment for LGBT rights occurred on June 27th, phylaxis (PEP), and pre-exposure prophylaxis 1969 at the Stonewall Inn, a gay bar in New York (PrEP) have changed the landscape of HIV treat- City. During a police raid, Stonewall patrons as ment and prevention, but in 2010, the CDC well as their neighbors stood up to the police and reports MSM accounting for two-thirds of new rioted. The 1970s became a prolifi c time for HIV infections in the U.S., an increase of 12 % LGBT civil rights and organizations, with from 2008. Kaiser Family Foundation research Stonewall now a rallying cry for LGBT civil shows that gay and bisexual men see HIV as the rights and the basis for annual Pride Festival cel- top health issue facing their community, but most ebrations across the country. are not personally worried about getting infected Bar culture provided a space for the develop- and are not testing regularly [3 ]. The HIV epi- ment of the LGBT communities. Unfortunately, demic persists. Notably, the LGBT communities relying on institutions that promote alcohol, have shown a remarkable amount of resilience in tobacco and sometimes other drug use has likely the face of a modern-day plague, as well as played a strong role in the health disparities seen enduring centuries of criminalization and medi- in LGBT patients. Perhaps the most defi ning calization of their identities. event for the LGBT community was the HIV epi- LGBT communities are unique in that mem- demic. It is beyond the scope of this chapter to bers of the community are most often not born to review in detail the deep and multilayered impact LGBT parents. In most groups (ex. race, ethnici- HIV has had on the LGBT communities. But to ties, religious groups, etc.) history and culture are better understand LGBT patients it is important passed from grandparents to parents to children to have a basic understanding of how it has rav- both explicitly and implicitly. When considering aged the LGBT community, further stigmatized the histories being brought to the table by your sexual and gender minorities and left many with patients, it is important to realize that LGBT peo- complicated relationships to medical care. ple that lived through the beginning of the HIV In 1981, the fi rst cases of AIDS were diag- epidemic have often profound, intimate under- nosed in gay men, mistakenly called gay-related standing of HIV and its impact on their lives. 1 Understanding the LGBT Communities 17

It is not hard to imagine how devastating an epi- bisexual people who marry a same-sex partner— demic like HIV has been to a community of peo- they are often perceived as gay because of the ple that relies on prior generations outside of gender of their primary partner. An example of their biological family to pass on history and cul- bi-invisibility can be seen in our own fi eld. If ture to new generations. Those born in 1982 and researchers do studies on sexual minorities, it’s onward have never known a world without HIV often on gay men and women. . If bisexual people and may not have the same personal or historical get included, they tend to get lumped into “MSM” relationship with HIV as important or even rele- or “WSW”, and sometimes their own unique vant to their lives—an example of the importance health needs as bisexual people get lost in the and power of vertical transmission of histories to milieu. Both epidemiologically and socially, we subsequent generations. are taught to think in binaries, and having a range between and outside of exclusively heterosexual and exclusively homosexual requires additional Bisexual thoughtfulness that sometimes is lacking, often due to limitations of survey data. While present in nearly every important LGBT Since the turn of the century, there has been moment in history, bisexual people have often increased attention to bisexual people as having been either overlooked or excluded as participants unique health disparities and needs from gay men in the LGBT histories. Interestingly, bisexual peo- and women. The sense of otherness from both ple actually are the majority population within the straight and gay communities seems to contribute LGBT community [44 ] but have a markedly to many of the health disparities seen in both decreased visibility. Despite their majority, a chal- bisexual men and women, often at greater rates lenge often faced by bisexual people is the sense than those experienced by their gay and lesbian that they belong to both the straight and gay com- peers [ 45 – 49 ]. Bisexual people have developed munities but often feel excluded based on their their own Bi Pride fl ag, their own organizations, otherness from both straight and gay communi- and continue to fi ght bi-invisibility both in the ties. When participating in straight culture, their straight and LGBT communities. same-sex attractions place them in the same stigmatized category as gay people, and may be perceived as simply gay. When participating in gay Transgender culture, bisexual people may be perceived as “not gay enough” or “going through a phase” (a par- While included in “LGBT”, transgender and gen- ticularly hurtful but all-too common opinion of der non-conforming individuals have histories lesbian and gay people). Throughout the history and experiences unique from sexual minorities. of the LGBT communities, they have experienced Transgender people may identify as lesbian, gay, a phenomenon called “bi-invisibility”. bisexual or otherwise and thus share in the experiences of LGB people. However, trans individuals can also be straight. Gender identity is not Helpful Hint sexual orientation and comes with its own unique To avoid bi-invisibility, don’t forget the set of histories that transect other histories. “B” in LGBT as a healthy, normal aspect of Ultimately, transgender history is marked by human sexuality. Indeed, bisexuals make experiences in the context of their gendered “oth- up the majority subgroup of the LGBT erness”, and often saw both legal and medical communities! advances well after those achieved by sexual minorities. In regards to the HIV epidemic, it wasn’t until well into the 1990s that transgender Bi-invisibility can be noted when a bisexual individuals were even included as risk popula- person marries an opposite-sex partner and is tions at the federal level [ 25 ]. This trend of lag- subsequently seen as straight. The same is true of ging behind LGB rights and medical inclusion 18 D.R. Blechinger has continued and is often a source of contention the use of the word “tranny” and “You’ve Got within LGBT advocacy organizations and She-mail” has shown how diffi cult it has been for between LGBT civil rights activists. the LGBT communities to come together and While transgender people have been involved move forward on such divisive issues. Like the in all of the LGB history such as the Stonewall term “queer”, both of these terms have been used riots, there are other individuals and events spe- as derrogatory hate language and as terms of cifi c to the transgender experience. Dr. Harry affection between different people, and their Benjamin is a widely known fi gure in transgender ongoing use has been challenged. Overall, trans- history as the fi rst to use cross-gender hormone gender patients continue to have complicated therapy in the U.S. in the late 1940s. Christine relationships with social and medical institutions Jorgensen was his fi rst patient to undergo GRS and of all types. Whether seeking out gender affi rm- received national attention. Dr. Benjamin went on ing hormone therapy, GRS or just basic primary to write “The Transsexual Phenomenon” in 1966. care services, transgender patients continue to His namesake was attached to the fi rst international experience discrimination and violence even in association of transgender care professionals their doctor’s offi ce [ 50 ]. (Harry Benjamin International Gender Dysphoria Association) and their set of clinical standards for transgender health were dubbed the Harry LGBT in the Twenty-First Century Benjamin Standards of Care. This organization is now the World Professional Association for Federally, there have been great strides toward rec- Transgender Health (WPATH) and continues to set ognizing the rights of LGBT citizens since the turn standards for transgender care. of the century. Through the Affordable Care Act in In addition to Sylvia Rivera and other trans 2010, new legal protections against discrimination activists’ participation in the Stonewall Riots of based on sexual orientation and gender identity 1969, trans women also took a stand against were unrolled. Studies have shown LGBT individ- police harassment and discrimination in the less- uals have lower rates of health coverage, an impor- well- known Compton Cafeteria Riots in 1966 tant contributor to health disparities that will in part [49 ]. It wasn’t until 1978 that the fi rst state law be addressed by expanded coverage through the was passed allowing transsexual individuals to ACA. In 2010, the Presidential Memorandum on change their birth certifi cate to their new name Hospital Visitation made it illegal to prevent same- and designated sex. The turn of the twenty-fi rst sex partners from visiting their loved ones in the century saw the formation of important trans hospital. This came after the heart-wrenching story agencies such as the Sylvia Rivera Law project from Miami, Florida that drew national attention (2002) and the National Center for Transgender when Janice Langbehn was denied access to her Equality (2003). And while Minneapolis was the dying partner Marie Pond even after providing fi rst city to pass transgender civil rights protec- power of attorney documentation. Marie died tions, it wasn’t until 2012 that the Equal while Janice was barred from the hospital. With the Employment Opportunity Commission (EEOC) repeal of “Don’t Ask, Don’t Tell” in 2011, our LGB stated that it was a violation of the Civil Rights military members and veterans are not only being Act to discriminate against transgender recognized but provided the protections and bene- Americans. Growing pains even in the LGBT fi ts they’ve earned during their service. communities over trans inclusion and language The Department of Health and Human Services can be seen in RuPaul’s Drag Race, a popular TV under the leadership of Secretary Kathleen Sebelius show about drag queens competing for the crown has been actively working since 2010 to improve of “America’s Next Drag Superstar”. Despite the the health of LGBT Americans as shown in their show’s revolutionary exposure of Americans via 2013 annual report highlighting various efforts mass media to gay men, drag performance art, encompassing LGBT youth, adults and elderly in and gender identities and expression outside of arenas like anti-bullying, v iolence, homelessness, the mainstream “norm”, heated controversy over suicide and health workforce cultural competency. 1 Understanding the LGBT Communities 19

In the summer of 2013, the Defense of Marriage Better Understanding” [ 51 ] is a superb road- Act (DOMA) was struck down by the Supreme map for more deeply understanding the health Court, validating relationships across the country needs of LGBT patients. They propose a life- in a both profoundly personal, social, and legal course framework for healthcare researchers and way. In 2015, the Supreme Court ruled same-sex providers. Issues of mental health, physical marriage a constitutional right, making marriage health, risk/protective factors, health services equality the law of the land. and contextual inﬂ uences are considered in three life stages: childhood/adolescence, adulthood and later adulthood. Understanding LGBT Health The life-course framework proposed by the 2011 IOM report is included below (Table 1.4 ) The Institute of Medicine’s 2011 report “The for your reference as you prepare to continue on Health of Lesbian, Gay, Bisexual and to other chapters and more deeply explore the Transgender People: Building a Foundation for unique health needs of the LGBT communities.

Table 1.4 Life-course framework Childhood • The burden of HIV falls disproportionately on young men, particularly young black men, who have and sex with men adolescence • LGB youth are at increased risk for suicidal ideation and attempts as well as depression. Small studies suggest the same may be true for transgender youth • Rates of smoking, alcohol consumption, and substance use may be higher among LGB than heterosexual youth. Almost no research has examined substance use among transgender youth • The homeless youth population comprises a disproportionate number of LGB youth. Some research suggests that young transgender women are also at signifi cant risk for homelessness • LGBT youth report experiencing elevated levels of violence, victimization, and harassment compared with heterosexual and non-gender-variant youth • Families and schools appear to be two possible focal points for intervention research Early and • As a group, LGB adults appear to experience more mood and anxiety disorders, more depression, middle and an elevated risk for suicidal ideation and attempts compared with heterosexual adults. adulthood Research based on smaller convenience samples suggests that elevated rates of suicidal ideation and attempts as well as depression exist among transgender adults; however, little research has examined the prevalence of mood and anxiety disorders in this population • Lesbian women and bisexual women may use preventive health services less frequently than heterosexual women • Lesbian women and bisexual women may be at greater risk of obesity and have higher rates of breast cancer than heterosexual women • HIV/AIDS continues to exact a severe toll on men who have sex with men, with black and Latino men being disproportionately affected • LGBT people are frequently the targets of stigma, discrimination, and violence because of their sexual- and gender-minority status • LGB adults may have higher rates of smoking, alcohol use, and substance use than heterosexual adults. Most research in this area has been conducted among women, with much less being known about gay and bisexual men. Limited research among transgender adults indicates that substance use is a concern for this population • Gay men and lesbian women are less likely to be parents than their heterosexual peers, although children of gay and lesbian parents are well adjusted and developmentally similar to children of heterosexual parents Later • Limited research suggests that transgender elders may experience negative health outcomes as a adulthood result of long-term hormone use • HIV/AIDS impacts not only younger but also older LGBT individuals. However, few HIV prevention programs target older adults, a cohort that also has been deeply affected by the losses infl icted by AIDS • There is some evidence that LGBT elders exhibit crisis competence (a concept refl ecting resilience and perceived hardiness within older LGBT populations) • LGBT elders experience stigma, discrimination, and violence across the life course • LGBT elders are less likely to have children than heterosexual elders and are less likely to receive care from adult children 20 D.R. Blechinger

The previous sections highlight the history of among young men who have sex with men. 2007. the LGBT communities, including the legal, Club drug use in Los Angeles among young men who have sex with men. Subst Use Misuse. 2007;42: social, cultural, and economic barriers they face. 1723–43. A common language to discuss LGBT and DSD- 10. Cochran S, Mays V. Physical health complaints affected patients and their experiences has been among lesbian women, gay men, and bisexual and outlined. The concept of minority stress has been homosexually experienced heterosexual individuals: results from the California Quality of Life Survey. introduced and how these factors contribute to Am J Public Health. 2007;97:2048–55. LGBT health disparities. In the following chap- 11. Lee GL, Griffi n GK, Melvin CL. Tobacco use among ters, we will further explore these disparities and sexual minorities in the USA: 1987 to May 2007: a how to improve the health and well-being of your systematic review. Tob Control. 2009;18:275–82. 12. Xavier J, Honnold J, Bradford J. The health, health- sexual and gender minority patients. It is our related needs, and lifecourse experiences of transgen- hope that this text will not only help you achieve der Virginians. Virginia HIV Community Planning clinical excellence, but will excite you to seek out Committee and Virginia Department of Health. opportunities to serve these unique, diverse, resil- Richmond, VA: Virginia Department of Health; 2007. Available from: http://www.vdh.virginia.gov/epide- ient communities. miology/DiseasePrevention/documents/pdf/ THISFINALREPORTVol1.pdf . 13. Hughes TL. Chapter 9: Alcohol use and alcohol- References related problems among lesbian women and gay men. Annu Rev Nurs Res. 2005;23:283–325. 14. Lyons T, Chandra G, Goldstein J. Stimulant use and 1. Obedin-Maliver J, et al. Lesbian, gay, bisexual, and HIV risk behavior: the infl uence of peer support. transgender-related content in undergraduate medical AIDS Educ Prev. 2006;18(5):461–73. education. JAMA. 2011;306(9):971–7. 15. Mansergh G, Colfax GN, Marks G, et al. The circuit 2. Ng H, Sudano J. Health centers in the United States. party men’s health survey: fi ndings and implications Presented at American Public Health Association for gay and bisexual men. Am J Public Health. meeting, 2012. 2001;91(6):953–8. 3. Kaiser Family Foundation. HIV/AIDS in the lives of 16. Garofalo R, Wolf RC, Wissow LS, et al. Sexual orien- gay and bisexual men in the United States. 2014. tation and risk of suicide attempts among a represen- http://kff.org/hivaids/report/hivaids-in-the-lives-of- tative sample of youth. Arch Pediatr Adolesc Med. gay-and-bisexual-men-in-the-united-states/ . 1999;153(5):487–93. Accessed Sept 2014. 17. Conron KJ, Mimiaga MJ, Landers SJ. A population- 4. Cochran S, Keenan C, Schober C, Mays V. Estimates based study of sexual orientation identity and gender of alcohol use and clinical treatment needs among differences in adult health. Am J Public Health. homosexually active men and women in the U.S. pop- 2010;100(10):1953–60. ulation. J Consult Clin Psychol. 2000;68:1062–71. 18. Kruks G. Gay and lesbian homeless/street youth: 5. Gilman S, Cochran S, Mayx V, Hughes M, Ostrow D, special issues and concerns. J Adolesc Health. 2010; Kessler R. Risk of psychiatric disorders among indi- 12(7):515–8. viduals reporting same-sex sexual partners in the 19. Van Leeuwen JM, Boyle S, Salomonsen-Sautel S, National Comorbidity Survey. Am J Public Health. et al. Lesbian, gay, and bisexual homeless youth: an 2001;91:933–9. eight-city public health perspective. Child Welfare. 6. Mays V, Yancey A, Cochran S, Weber M, Fielding 2006;85(2):151–70. J. Heterogeneity of health disparities among African 20. Cahill S, South K, Spade J. Outing age: public policy American, Hispanic and Asian American women: issues affecting gay, lesbian, bisexual and transgender unrecognized infl uences of sexual orientation. Am elders. Washington, DC: National Gay and Lesbian J Public Health. 2002;92:632–9. Task Force; 2009. 7. Drabble L, Trocki K. Alcohol consumption, alcohol- 21. Buchmueller T, Carpenter CS. Disparities in health related problems, and other substance use among lesbian insurance coverage, access, and outcomes for indi- and bisexual women. J Lesbian Stud. 2005;9:19–30. viduals in same-sex versus different-sex relation- 8. Hughes T, Wilsnack S, Szalacha L, Johnson T, ships, 2000–2007. Am J Public Health. 2010;100(3): Bostwick W, Seymour R, et al. Age and racial/ethnic 489–95. differences in drinking and drinking-related problems 22. Dilley JA, Simmons KW, Boysun MJ, et al. in a community sample of lesbian women. J Stud Demonstrating the importance and feasibility of Alcohol. 2006;67:579–90. including sexual orientation in public health surveys: 9. Kripke M, Weiss G, Ramirez M, Dorey F, Ritt-Olson health disparities in the Pacifi c Northwest. Am A, Iverson E, Ford W. Club drug use in Los Angeles J Public Health. 2010;100(3):460–7. 1 Understanding the LGBT Communities 21

23. Struble CB, Lindley LL, Montgomery K, et al. of DSD in childhood. Intersex Society of North Overweight and obesity in lesbian and bisexual col- America. 2006. lege women. J Am Coll Health. 2010;59(1):51–6. 37. Fausto-Sterling A, et al. How sexually dimorphic are 24. Centers for Disease Control and Prevention (CDC). we? Review and synthesis. Am J Hum Biol. HIV and AIDS among gay and bisexual men. Atlanta: 2000;12:151–66. CDC; Sept 2010. Available from: http://www.cdc.gov/ 38. Centers for Disease Control and Prevention. Sexual nchhstp/newsroom/docs/2012/CDC-MSM-0612-508. identity, sex of sexual contacts, and health risk behav- pdf . iors among students in grades 9–12 in selected sites— 25. Herbst JH, Jacobs ED, Finlayson TJ, et al. Estimating youth risk behavior surveillance, United States, HIV prevalence and risk behaviors of transgender per- 2001–2009. MMWR Surveill Summ. 2011;60(7):1– sons in the United States: a systematic review. AIDS 133. Early Release. Behav. 2008;12:1–17. 39. Gates G, Konnoth C. Same-sex couples and immigra- 26. Whitbeck LB, Chen X, Hoyt DR, et al. Mental disor- tion in the United States. Los Angeles, CA: Williams der, subsistence strategies, and victimization among Institute, UCLA School of Law; 2012. gay, lesbian, and bisexual homeless and runaway ado- 40. Feldman M. Aversion therapy for sexual deviations: a lescents. J Sex Res. 2004;41(4):329–42. critical review. Psychol Bull. 1966;65:65–79. 27. Diaz RM, Ayala G, Bein E, et al. The impact of 41. Levine M. The impact of AIDS on the homosexual homophobia, poverty, and racism on the mental health clone community in New York City. Paper presented at of gay and bisexual Latino men: fi ndings from three 5th international conference on AIDS, Montreal, 1989. US cities. Am J Public Health. 2001;91(6):141–6. 42. Levine MP, et al. In changing times: gay men and les- 28. Kenagy GP. Transgender health: fi ndings from two bian women encounter HIV/AIDS. Chicago, IL: needs assessment studies in Philadelphia. Health Soc University of Chicago Press; 1997. Work. 2005;30(1):19–26. 43. Hereck G. AIDS and stigma. Am Behav Sci. 1999;42: 29. National Gay and Lesbian Taskforce. National trans- 1106–16. gender discrimination survey: preliminary fi ndings. 44. Herbenick D, Reece M, Schick V, Sanders SA, Dodge Washington, DC: National Gay and Lesbian B, Fortenberry JD. Sexual behavior in the United Taskforce; Nov 2009. Available from: http://www. States: results from a national probability sample of thetaskforce.org/downloads/reports/fact_sheets/ men and women aged 14–94. J Sex Med. 2010;7 transsurvey_prelim_fi ndings.pdf . Suppl 5:255–65. 30. American Psychiatric Association. Diagnostic and 45. Koh AS. Use of preventive health behaviors by les- statistical manual of mental disorders. 5th ed. bian, bisexual and heterosexual women: question- Washington, DC: American Psychiatric Publishing; naire survey. West J Med. 2000;172(6):379–84. 2013. 46. 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Paper presented at access to and use of health care: a population-based WPATH 20th international symposium, Chicago, study of lesbian, bisexual and heterosexual women. USA, 2007. Arch Fam Med. 2000;9(10):1043–51. 34. Gates G. LGBT adult immigrants in the United States. 50. Grant J, Mottet L, Tanis J, Herman J, Harrison J, Los Angeles, CA: Williams Institute at UCLA Law Keisling M. National Transgender Discrimination School; 2013. Survey: fi ndings of a study by the National Center for 35. Grant J, et al. Injustice at every turn: a report of Transgender Equality and the National Gay and the national transgender discrimination survey. Lesbian Task Force. National Center for Transgender Washington, DC: National Gay and Lesbian Task Equality; 2010. Force and National Center for Transgender 51. Institute of Medicine. The health of lesbian, gay, Equality; 2011. bisexual, and transgender people: building a founda- 36. Consortium on the Management of Disorders of Sex tion for better understanding. Washington, DC: Development. Clinical guidelines for the management National Academies Press; 2011. Access to Care 2 Keisa Fallin-Bennett , Shelly L. Henderson , Giang T. Nguyen , and Abbas Hyderi

Purpose Learning Objectives

The purpose of this chapter is to review access to • List the barriers that could cause diffi culties in health care for LGBT persons, specifi cally the communication between LGBT patients and barriers to care faced by LGBT patients, as well providers and identify facilitators to overcome as how providers can establish a medical home these barriers (ICS2 , ICS3 , PPD1 ). with LGBT patients and assess their identity as • Describe how social and medical institutions part of patient-centered care. contribute to health care access disparities for LGBT patients (KP4 , ICS3 ). • Discuss the role of training of health care providers in health care access issues for LGBT patients (Pr3 , Pr4 ). • Identify at least three opportunities to support K. Fallin-Bennett , M.D., M.P.H. (*) a patient-centered medical home or patient- Department of Family and Community Medicine , centered practice to facilitate access for LGBT University of Kentucky, 2195 Harrodsburg Road, Ste. 125 , Lexington , KY 40504 , USA patients ( Pr3 , PPD1 ) . e-mail: [email protected] S. L. Henderson , Ph.D. Department of Family and Community Medicine , Barriers to Care University of California Davis , 4860 Y Street, Suite 2300 , Sacramento, CA 95817 , USA Many LGBT patients may avoid or delay access- e-mail: [email protected] ing healthcare. Though historically few studies G. T. Nguyen , M.D., M.P.H., M.S.C.E. on health care access have included questions on Department of Family Medicine & Community Health and Student Health Service, University of sexual identity, sexual behavior, or gender iden- Pennsylvania, 3535 Market Street, Suite 100 , tity, studies mainly on cervical cancer screening Philadelphia , PA 19104 , USA offer some evidence. In one large, national sur- e-mail: [email protected] vey conducted in the mid 1990s, lesbian women A. Hyderi , M.D., M.P.H. were less likely to report routine Pap tests despite Department of Family Medicine , University of having higher risk sexual practices [1 ]. In a similar Illinois at Chicago, M/C 785, 1819 Polk Street , Chicago , IL 60657 , USA sample of adolescents and young adults, women e-mail: [email protected] who identifi ed in a sexual orientation category

© Springer International Publishing Switzerland 2016 23 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_2 24 K. Fallin-Bennett et al. other than completely heterosexual were signifi - Stigma and discrimination also play a role. cantly less likely to have had a Pap test in their There is substantial evidence that LGBT patients lifetimes and in the last year [2 ]. A smaller study perceive discrimination in the health care envi- examined reasons for lack of screening and found ronment [8 , 9]. In the National Transgender that fear of discrimination, low knowledge about Discrimination survey, 28 % of transgender and screening, and lower likelihood to have disclosed gender nonconforming respondents reported sexual orientation were signifi cantly related to postponing or avoiding acute care and 33 % did not receiving routine Pap tests [3 ]. the same for preventive care, with discrimination The reasons behind delay in or avoidance of and disrespect most commonly cited as causes care are not completely understood but are likely [ 7 ]. Kitts et al. [ 10 ] surveyed 464 resident and multifactorial. Studies consistently demonstrate attending physicians and found that the majority lower proportions of health insurance coverage of physicians did not routinely discuss sexual ori- among sexual minority women (SMW), likely entation, attractions, or gender identity with sex- related to the fact that women in general earn less ually active adolescents, even in the setting of than men and have a higher tendency to be cov- depression or suicidal ideation. Nearly half did ered under a male partner’s insurance [4 ] As not know the association between LGBT identity, insurance coverage for domestic partners grows those questioning their identity, and suicide [10 ]. in popularity and the Affordable Care Act takes Lack of health care provider training corre- effect (also see Chap. 24), SMW may make gains lates with patient experiences. Providers may in insurance coverage; however, current trends in knowingly create an unwelcoming environment income have not relieved the gender gap [5 ], on the basis of upholding religious or cultural leaving households without men at a disadvan- beliefs. Perhaps more commonly, they can tage in terms of health care access. It is widely unknowingly express stigma or discriminate even accepted that transgender people have even less with the best of intentions. They may lack aware- access to health insurance. Several studies sup- ness of sexual minority health issues or lack port this disparity, including one conducted in training in terminology and patient communica- San Francisco (N = 515) in which 52 % of male- tion. Even recent studies have found that provid- to-female (MTF) and 41 % of female-to-male ers feel unprepared to give quality care for LGBT (FTM) persons lacked insurance [ 6 ]. The patients. In the Kitts [ 10] study, only 44 % of National Transgender Discrimination Survey in physicians agreed that they had the skills needed Health Care found that 19 % of respondents were to address sexual orientation with patients and uninsured, higher than the national rate of 15 % 75 % agreed that sexual orientation should be at the time. Rates were even higher in ethnic covered more often during training. The results minorities and MTFs [7 ]. Although the ACA of a 2010 GLMA–American Medical Association eliminates the barrier of coverage denial for Collaborative Survey on Physician Experiences transgender patents based on a “pre-existing con- Caring for LGBT Patients (Survey on Physician dition,” the degree to which medical care for Experiences) reveal the lack of current physician transgender-related diagnoses are covered by training on LGBT issues and LGBT discrimina- insurance is variable, leaving trans patients per- tion in health care settings. Almost 40 % of phy- sonally responsible for a signifi cant proportion of sicians participating in the survey reported they their medical bills. had no formal training in medical school, residency or from continuing medical education on LGBT health issues, while 50 % reported receiv- Helpful Hint ing fewer than 5 hours of training on LGBT Sexual minority women and transgender health. Of those who received some training in patients are at higher risk of not having health LGBT health, most found that the training was insurance. Transgender-related care such as “not very” or “not at all” useful in preparing them hormone therapy and surgery is not covered to care for LGBT patients. Fifteen percent had under many plans. witnessed discriminatory care for LGBT patients and nearly 20 % had witnessed disrespect toward 2 Access to Care 25 the partner of an LGBT patient. 5 % of physicians therefore report more experiences with LGBT in this survey said they referred an LGBT patient patients [17 ]. Nonetheless, additional small stud- to another provider because they felt uncomfortable ies evaluating specifi c LGBT health training cur- treating them [11 ]. ricula have demonstrated some positive outcomes [18 – 20 ]. Only a few curricular innovations in LGBT health during residency exist in the litera- Helpful Hint ture (e.g. [21 , 22 ]) Anecdotally, many more med- Discomfort discussing sexuality and gen- ical schools, residency programs, and other der exists for both providers and patients. health professional training programs have added Providers may not receive training and are LGBT health curricular content in recent years. often not prepared to ask about and respond These programs, however, have rarely been eval- to these issues. Learning and practicing uated or published, so little is known about the communication regarding sexuality facili- quantity and quality of training needed to improve tates these encounters and then builds trust knowledge and skills, much less about specifi c that can help patients be more open in their topics or modalities that are effective in achieving communication as well. learning and practice outcomes.

Research on the extent and quality of LGBT Helpful Hint health training for medical trainees has focused Having a reputation for respect and open primarily on undergraduate medical education communication with all patients will help [12 – 15]. In a large recent survey assessing LGBT LGBT patients fi nd and trust you as a curriculum in undergraduate medical education, provider. Deans from a majority of existing medical schools reported a median of 5 hours of time devoted to LGBT training overall, and a median of 2 hours during clinical years. When asked about the content, 26 % said the content was Finding a Medical Home “poor” or “very poor” [13 ]. The only recent study of LGBT health inclusion in residency found Despite the importance put on having a personal similar results among Family Medicine residency medical home, in most health systems it is up to directors. 16 % had no content and the majority the patient to fi nd one. Many patients stay with a had 1–5 hours, but only a minority of directors primary care provider or practice that they rated the curriculum as “adequate.” In addition, already feel is their medical home, but those who 11 % had major concerns or would not rank a need a new primary care provider ( PCP ) or want transgender applicant, revealing a residency cli- to switch doctors or practices face obstacles. Due mate that might not promote diversity [16 ]. to primary care physician/provider shortages in Some medical schools have begun to integrate many regions of the country [23 ], the number of LGBT health in their curriculum with associated providers not accepting public insurance, and increases in knowledge and more positive atti- limitations on practice choice as a cost control tudes. Sanchez et al. [17 ], for example, found that imposed by insurance companies, many PCP’s students having more interactions with LGBT no longer accept new patients or have very long patients were more likely to ask about sexual ori- waits for a new patient appointment [24 ]. entation, hold more positive attitudes toward Finding a PCP who is knowledgeable about LGBT issues, and demonstrate objective LGBT LGBT issues and welcoming to this diverse health knowledge. In this cross-sectional study, clientele can be even more challenging. GLMA: students with more positive attitudes might have Healthcare Professionals Advancing LGBT been more likely to ask about orientation and Equality , a national LGBT advocacy organization 26 K. Fallin-Bennett et al. for health professionals, suggests a number of strategies employed by practices successful at Helpful Hint providing LGBT patients with competent care in Health professional schools are beginning a patient-centered environment. These strategies to teach LGBT Health. One repository of include featuring LGBT persons and families in peer-reviewed LGBT health education the materials available in the waiting room or resources for students is shared through exam rooms and posting non-discrimination poli- the Association of American Medical cies including sexual orientation and gender Colleges LGBT/DSD Affected Patient identity prominently in public areas. GLMA also Care Project of MedEdPORTAL: https:// recommends actions compatible with the wel- www.mededportal.org/ coming displays, including having gender-neutral restrooms and registration forms inclusive of diverse genders and relationships [25 , 26 ]. These To add yourself to the GLMA Provider Directory types of practices are perceived as important to or access the GLMA Guidelines for Care of LGBT patients in choosing and staying in a practice patients, go to : http://www.glma.org/ [9 , 27 ]. The GLMA guidelines are available through a URL in the helpful hints [26 ]. GLMA also operates a national list of providers who Assessing Identity (Table 2.1 ) have identifi ed themselves as LGBT-affi rming [ 28]. Providers can designate themselves as allies One of the challenges for the PCP attempting to (non-LGBT persons who are supportive of the be welcoming to LGBT patients is that of identi- community) if desired and are only asked for fying who they are. Historically, sexual orienta- name, specialty, and some form of offi ce contact tion and gender identity were almost universally information. The GLMA provider directory is guarded due to high levels of societal stigma and free—both for providers to list themselves and discrimination. Health care providers often for patients to access. Most non-LGBT patients adopted the practice of specifi cally not docu- are unaware of this resource, so it provides a par- menting patient identifi cation as a confi dentiality ticularly helpful and powerful method for provid- issue [32 ]. Unfortunately, that stigma and dis- ers in more conservative communities to let crimination also translated into providers not LGBT patients know of them without overt assessing sexual or gender identity at all. As advertising or symbols. The listing can be noted in the section on provider training above accessed by interested patients through the pri- (under “Barriers to Care”), health professionals vacy of their own computers and thus avoid any generally are not trained to assess identity. Often sense of being “outed” by actively asking about training consists of learning to ask in a sexual welcoming providers, while providers can use history, “Have you had sex with women, men or this list in cases where more overt signs of LGBT both?,” a question which is helpful in assessing solidarity might not be as well received by the behavior but incomplete. It also reveals little community at large. Nevertheless, most LGBT about a person’s identifi cation, can lead to erro- patients who have a trusted PCP fi nd that person neous assumptions when used to ascertain iden- through word-of-mouth and through scanning the tity, and is not always appropriate for the clinical safety and competency of the practice environ- situation. ment, as well as implicitly or explicitly assessing A fundamental principle of assessing sexual the attitudes and competency of the individual identity is the recognition that attraction, behav- provider [29 – 31]. The best thing that a provider ior and identity are not the same. (See Chap. 1 for can do to become a medical home for LGBT more details on the defi nitions and differences. patients is to be respectful, patient-centered, and See Chaps. 5 and 7 on intake for details and elec- competent with regard to the care of all patients. tronic health records). Behavior can be assessed 2 Access to Care 27

Table 2.1 Model questions for a primary care interview in a fairly straightforward manner as part of a Note that the following questions are not meant to be sexual history when such a history is appropriate. exhaustive. Some would be used in different situations Sexual identity, while clearly related to inherent than others. They are examples that you could use or attractions and behavior, is a more complex social adapt for the appropriate time in the clinical interview. You would often consider prefacing many of these construct that can change over time and with a questions with a normalizing remark, such as, “In order change in environment. In a patient-centered to better understand all the things that affect my approach, the patient’s self-identifi cation as patients health, I ask about …” (identity, sexual history, straight, gay, lesbian, bisexual, queer, question- exposure to violence, etc.). Reminders about confi dentiality are also helpful. Remember that the ing, asexual, something else, or no identifi cation most important elements of the clinical interview with at all, should be respected regardless of whether all patients are to avoid assumptions, ask open ended that identifi cation seems to the provider to match questions fi rst, and always demonstrate respect for the attractions or behaviors of the patient. Open- patient and the truth of the patient’s own experience ended questions are the most patient-centered Directly assessing identity • How do you defi ne your gender? way to ascertain patient sexual orientation while • What pronouns do you use for yourself, for example deriving accurate information [ 26 , 33 ]. Because she/her, he/him, or something different? identity can be a sensitive issue for some patients, • How do you defi ne your sexual orientation? it is common that patients might need several vis- • Do you feel attracted to men, women, both, or neither? its with a provider in order to feel comfortable Taking a social history discussing identity [34 , 35 ]. Nevertheless, we • Who have you brought with you to the visit? agree with the fi nding of the Institute of Medicine • Do you have a signifi cant other? Board of Select Populations that best practice for • Are you in a relationship? • Can you tell me a little about your partner or holistic, patient-centered care dictates that the signifi cant other? provider know enough about the patient to under- • What do you call your partner? stand how the patient identifi es, and that commu- • Tell me about who makes up the people you nication to that effect should occur within a few consider your family? • Who are the people that you turn to for support? preventive or chronic care visits or as needed • Are there people in your life who are not during acute visits when it might relate directly to supportive? behavioral risks or mental health concerns [32 ]. Taking a sexual history A number of sample questions for ascertaining • Do you have any concerns or questions about your sexuality, sexual orientation, or sexual desires? identity in an open-ended manner appear in • Can you describe the sexual aspect of your life with the box above. It is recommended that health your partner(s)? professionals and students practice these ques- • Have you had any sexual contact with others in the tions in simulated patient visits or professional last year, (meaning, have you had any contact that involves the mouth, vagina, penis or anus)? trainings in order to become more comfortable • When was the last time you were sexually active? using them. Curriculum guidelines for medical • Have you had any sexual contact in your lifetime? student education and residency education from • Can you tell whom you are attracted to? the Association of American Medical Colleges • How many partners do you have now? (how many partners have you had in your lifetime?) (AAMC) and the American Academy of Family • Have your sexual partners been men, women, or Physicians (AAFP), respectively, detail these and both? other recommendations [36 , 37 ]. • What kind of sexual activities are a part of your Assessing gender identity can be just as chal- relationship? • What kind of sexual activities are a part of your sex lenging. As noted in Chap. 1, people may iden- life with partners that you are not involved with tify as transgender as an umbrella concept of not romantically? identifying as a single, clear gender all of the • Do you use sex toys or other items as part of your time. Patients may use the term transgender to sex life? • In what ways do you practice safer sex? mean that their sense of gender does not exactly match the sex of their birth, or that they have 28 K. Fallin-Bennett et al. already taken steps to live in a gender different Similarly, it is important to remember that LGBT than the sex assigned at birth. Others identify as persons may have multiple other identities that bigender, transsexual, genderqueer, or even reject infl uence their feelings about gender or orienta- the notion of gender entirely [38 , 39 ]. The word tion, as well as the labels they use for themselves. used academically for the majority of people It is vital that the PCP and the medical home as a whose gender identity matches their sex assigned whole view patients in the multiple cultural at birth, “cisgender,” is not generally used by contexts in which they exist, where culture ranges the people it describes (in contrast to the words from race/ethnicity to age to occupation to “heterosexual” or “straight,” which are widely neighborhood. understood and used in casual language). Given the variety of gender identities, the changing landscape of gender identity terms, and a particular lack of provider training in this area, it is espe- Helpful Hint A patient-centered approach is key. Not cially crucial to approach gender identity in an every visit is appropriate for discussions of open-ended manner. Cisgender people might be sexual and gender identity, but practice in confused about being asked for a gender identity ascertaining identity and responding to dis- that they perceive as evident, so asking for gender closures is important for trust-building that identifi cation requires practice and fi nesse. Using allow patients to receive tailored care and multiple options for gender on registration forms work in collaboration to improve their own (as noted in Chaps. X and Y on intake and EHR), health. is a particularly good way to have some transgender- spectrum patients identify in a more comfortable way while simultaneously training other patients and staff to be comfortable with such questions. In addition to identity terminol- Helpful Hint ogy, transgender persons may also have particu- Terms to avoid lar preferences in terms of referring to body composition that providers should be aware of. • Sexual preference (use the term sexual Questions to use during a primary care interview orientation or sexual identity instead) are listed above and body specifi c terminology is • Homosexual (use the words gay or les- covered in Chap. 18 [26 , 32 ]. bian instead; use the words the patients It is also important to emphasize again that use to describe themselves) sexual orientation does not indicate or predict • Transvestite (use transgender or the gender identity, and vice-versa. Several studies words the patients use for themselves) on the sexual identity of transgender persons fi nd a large diversity of identifi cations spanning straight, gay, lesbian, bisexual, and other identities [38 , 39 ]. A gender transition for someone Portions adapted from: 1. Policy Brief: How to already in a relationship may also complicate Gather Data on Sexual Identity and Gender Identity sexual identity identifi cation terms and how to in Clinical Settings. The Fenway Institute. 2012. communicate those to others. Ultimately, it is Available via: http://thefenwayinstitute.org/ important for patients to be able to identify both documents/Policy_Brief_HowtoGather…_ sexual and gender identities for themselves, even v3_01.09.12.pdf AND 2. Guidelines for Care of when that includes nontraditional labels or no Lesbian, Gay, Bisexual and Transgender Patients. labels at all. It is also to be expected that these GLMA. 2006. Available via: http://glma.org/_ identity labels could change over time and does data/n_0001/resources/live/GLMA%20guide- not indicate instability in mental health [39 – 42 ]. lines%202006%20FINAL.pdf 2 Access to Care 29

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• Understand the importance of using organization Purpose change models to promote LGBT inclusion and climate change (IPC1, Pr4) The purpose of this chapter is to examine the • Understand the impact of culture and climate impact of LGBT health-related institutional on establishing a safe learning environment climate, culture, and advocacy on patient care for students and trainees within health-care and health education. This chapter will also provide institutions (Pr4) practical suggestions for improving institutional climate.

Growing National Recognition Learning Objectives of the Unique Health Needs of LGBT Populations After reading this chapter, learners will be able to: Over the past decade, progress has been made • Identify at least three national resources for towards understanding the health needs of LGBT improving culture and climate in academic populations. Federal bodies, including the medicine (SBP1, SBP3) Department of Health and Human Services and • Discuss the current barriers to an inclusive cli- the Agency for Healthcare Research and Quality, mate for LGBT students, staff, and faculty (Pr4) have released guidance and reports addressing • Discuss at least three speciﬁ c tools for improving health disparities in the LGBT community. In culture and climate within an academic insti- addition, several non-governmental organiza- tution (IPC1, Pr4) tions, including the Human Rights Campaign and GLMA : Health Professionals Advancing LGBT B. R. Yehia , M.D., M.P.P., M.Sc. (*) Equality, have developed resources for improv- D. Calder , M.P.H. ing the climate for LGBT patients and trainees in Perelman School of Medicine , University of healthcare settings. Several of these reports and Pennsylvania, Philadelphia , PA , USA resources are reviewed below. e-mail: [email protected]; [email protected]

S. N. Grossman , M.D. Institute of Medicine (IOM)/National Academy Department of Neurology , NYU Langone Medical Center , New York , NY , USA of Medicine (NAM) The IOM/NAM is one of e-mail: [email protected] America’s premier professional organizations with

© Springer International Publishing Switzerland 2016 31 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_3 32 B.R. Yehia et al. the purpose of providing national advice on matters small populations; and (4) development of a of science, medicine, and public health. In 2011, comprehensive research training program to raise the National Institutes of Health (NIH) asked the awareness of LGBT health among researchers. IOM/NAM Committee of Lesbian, Gay, Bisexual and Transgender Health Issues to assess the current Healthy People 2020 Healthy People is a state of knowledge about the health of LGBT peo- federally- funded initiative with the goal of ple and to “identify research gaps and formulate a providing science-based national objectives for research agenda that could guide NIH in enhancing improving the health of all Americans. The and focusing its research in this area.” program aims to attain high-quality health status In response to the NIH request, the IOM/NAM for all citizens, create social and physician envi- produced the report “The Health of Lesbian, Gay, ronments that promote good health, and achieve Bisexual, and Transgender People: Building a health equity and eliminate disparities. Healthy Foundation for Better Understanding.” This People 2020 included an LGBT Health compo- broad document takes several approaches in its nent with the goal of improving “the health, study and emphasizes four conceptual frame- safety, and well-being of lesbian, gay, bisexual works: the life-course framework, the minority and transgender individuals.” The program notes stress model, intersectionality, and social ecol- that LGBT individuals face many health-related ogy . It also stresses the importance of historical disparities linked to societal stigma, discrimina- context for understanding the health status of tion, and denial of civil and human rights. To LGBT individuals in the current period. begin addressing these issues, Healthy People The report acknowledges that the LGBT com- 2020 established the following objective: increase munity is diverse and its members have commen- the number of population-based data systems surately diverse health needs. It identifi es the used to monitor Healthy People 2020 objectives many challenges to conducting LGBT research that include in their core a standardized set of including establishment of the defi nitions of sex- questions that identify LGBT populations. ual orientation and gender identity, the fear of disclosure on the part of LGBT individuals, and Agency for Healthcare Research and Quality the problems associated with attracting research (AHRQ) The AHRQ National Healthcare Dispari- participation in a relatively small population. ties Report is an annual report that tracks “prevail- Moreover, the report addresses “health status ing disparities in health care delivery as it relates to over the life course” of LGBT people as divided racial factors and socioeconomic factors in priority into three stages: childhood/adolescence, early/ populations”. In 2011, for the fi rst time, the National middle adulthood, and later adulthood . Within Healthcare Disparities Report added a section on each stage, the committee evaluated mental LGBT populations, with an emphasis on transgen- health, physical health, risks and protective fac- der individuals. The Report highlighted disparities tors, health services and contextual infl uences. LGBT individuals experience in access to health The IOM/NAM report concludes with specifi c care, postponement of health care, and discrimina- recommendations on implementing a research tion by medical providers. agenda to advance knowledge and understanding of LGBT health. These recommendations include: The Human Rights Campaign (HRC) The HRC (1) collection of data on sexual orientation and Health Equity Index (HEI) is a valuable resource gender identity in federally-funded surveys and for healthcare organizations seeking to provide electronic health records; (2) development and equitable, inclusive care to LGBT Americans. standardization of sexual orientation and gender HRC developed this resource to be used by hos- identity measures to facilitate comparison and pitals and clinics to ensure they provide LGBT combination of data across large studies; (3) sup- patient-centered care in compliance with legal, port for methodological research aimed at devel- Centers for Medicare and Medicaid Services oping new methods for conducting research within (CMS), and Joint Commission requirements; 3 Culture, Climate, and Advocacy 33 improve quality and safety; enhance patient satis- by health care providers and institutions. The faction ratings; and receive benchmark assess- Report provides succinct and informed recom- ment of their performance with regard to the mendations on how to foster a welcoming physi- HRC HEI Core Four criteria: patient non- cal environment, add or change intake and health discrimination policies; equal visitation policies; history forms, improve provider–patient commu- employment non-discrimination policies; and nication, and increase staff’s knowledge to meet training in LGBT patient-centered care. The HEI the needs of LGBT patients. report is released annually and offers individuals and prospective patients the opportunity to learn American Medical Association (AMA) LGBT about facilities and their performance relative to Advisory Committee The AMA is the largest others within specifi c geographic areas . association of physicians in the United States. The AMA’s LGBT Advisory Committee works The Joint Commission (TJC) The Joint Commission to improve the health of LGBT persons through is an independent not-for-profi t organization that policy and advocacy. In addition, the committee accredits and certifi es more than 20,000 health care provides access to a wide variety of LGBT organizations and programs in the United States. In resources relating to the clinical care of LGBT 2011, TJC published a fi eld guide titled “Advancing populations, how to create an LGBT-friendly Effective Communication, Cultural Competence medical practice, enhancing communication with and Patient- and Family-Centered Care for the LGBT patients, understanding LGBT health dis- LGBT Community.” This guide explicitly aims to parities, and increasing awareness of LGBT improve the effectiveness of patient-provider com- health issues. munication for LGBT individuals and cites the general neglect of LGBT-related communications tools Association of American Medical Colleges from offi cial authorities. It is divided into fi ve con- (AAMC) The AAMC, which represents accred- tent-driven chapters and several appendices with ited U.S. and Canadian medical schools, recently resources for health care agencies. The fi ve chapters released guidelines for training physicians to care are: Leadership, Provision of Care, Workforce, Data for people who are LGBT, gender nonconform- Collection and Use and Patient, Family and ing, or born with differences of sex development. Community Engagement. Each chapter contains The report identifi es 30 competencies that physi- information on both the driving forces underlying cians must master. These competencies fall under the need for change in LGBT health as well as prac- eight domains of care critical to training physi- tical tools for improving performance within that cians, including patient care, knowledge for content area. The guide also includes ‘recommended practice, practice-based learning and improve- issues to address’ and ‘practice examples’ for each ment, interpersonal and communication skills, of the topics. The appendices to the document professionalism, systems- based practice, inter- include checklists to be used by organizations to professional collaboration, and personal and pro- ensure that they have taken all TJC-supported steps fessional development. to optimize the environment and provision of care for LGBT patients. The Fenway Institute The Fenway Institute is an interdisciplinary center for research, training, GLMA: Health Professionals Advancing LGBT education and policy development whose mission Equality GLMA is a leading association of targets access to quality, culturally competent LGBT healthcare professionals. In their report medical and mental health care for LGBT people Guidelines for Care of Lesbian, Gay, Bisexual, and those affected by AIDS. The Fenway Institute is and Transgender Patients , GLMA recognizes well known for several signature initiatives, includ- that many LGBT individuals avoid or delay care ing its clinical program, Fenway Health, which and receive inappropriate or inferior care because fi rst began caring for Boston-area gay men and of perceived or real judgment and discrimination lesbians in 1971. In 1980, Fenway fi rst began its 34 B.R. Yehia et al. program in research and community education— crimination and hostility. Relatedly, data from the this effort has grown to include the Center for National Center for Transgender Equality indi- Population Research in LGBT Health and active cates that 19 % of the approximately 6000 gender participation in HIV Vaccine Trials. The National non-conforming individuals sampled reported that Center for LGBT Health Education at Fenway they had been refused medical care due to their provides education, resources and consultation to gender expression and 50 % had to teach their health care organizations on issues related to medical providers about transgender care. In addi- LGBT health. Moreover, The Fenway Guide to tion, 28 % of surveyed individuals reported that Lesbian, Gay, Bisexual, and Transgender Health they had postponed medical care when they were is the fi rst American medical textbook dedicated sick or injured out of fear of discrimination. to LGBT health and remains an invaluable refer- If the climate and culture of a health care set- ence for healthcare professionals. First published ting is unwelcoming towards the LGBT commu- in 2008, it has since been updated to refl ect nity, optimal patient care isn’t possible. Therefore, evidence-based changes in care guidelines. The providers and staff should ensure that LGBT Fenway Guide is broadly delineated into six sections: patients feel welcomed and understood during Understanding LGBT Populations, The Life their healthcare experience. Creating a welcom- Continuum, Health Promotion and Disease ing environment can include (1) have “sexual Prevention, Transgender and Intersex Health, orientation” and “gender identity and expres- Patient Communication and the Offi ce Environment sion” in patient’s bill of rights and non-discrimi- and Legal Issues and the LGBT Community. nation policy; (2) develop or adopt a policy ensuring equal visitation; (3) post rainbow fl ags, pink triangles, or other LGBT-friendly symbols Impact of Culture and Climate or stickers in the waiting room and providers on Patient Care and Health offi ce; (4) exhibit posters showing racially and Education ethnically diverse same-sex couples or transgender people; (5) make available LGBT health Institutional culture and climate are key elements resources such a brochures and pamphlets; and for providing a safe environment for inclusive and (6) train staff and providers on how to communi- equitable patient care. In addition, culture and cli- cate with and welcome LGBT patients. mate are important for establishing a welcoming learning environment for LGBT trainees. Health Education

Patient Care Establishing welcoming environments benefi ts not only LGBT patients and communities, but LGBT patients face particular challenges in health also individual trainees. care settings. They struggle with being open about In a 2008 diversity survey of 261 medical, their sexuality and gender identity due to the fear physician assistant, and physical therapy students of judgment and discrimination. In a Lambda at one academic medical school, 90 % of respon- Legal Study, 73 % of transgender patients and 29 dents found education value in a diverse faculty % of LGB patients believed medical personnel and student body. In addition, students endorsed would treat them differently if they disclosed their the value of a diverse and inclusive climate and its LGBT status. As a result, LGBT patients either role in a medical school’s educational and clinical avoid seeing a provider or do not divulge their care missions. However, despite these beliefs, one sexual orientation and/or gender identity, which quarter of respondents reported witnessing other further contribute to LGBT health disparities. students or residents make disparaging remarks or Compared to their heterosexual counterparts, exhibit offensive behaviors toward LGBT groups. LGBT individuals are more likely to delay or not In 2013, the AAMC sends a questionnaire to all seek medical care, in part due to the fear of dis- second year medical students in the United States 3 Culture, Climate, and Advocacy 35 to better understand student satisfaction, empathy, (4) explicit faculty role models and mentors for and well-being. In addition, for the fi rst time, LGBT trainees; (5) written, broadly distributed the questionnaire included a question on sexual policies condemning discrimination against LGBT orientation. In total, 3466 students responded persons with effective reporting and enforcement (18 % response rate), with 5.9 % identifying as mechanisms; and (6) practical institutional mea- LGB. Compared to their counterparts, LGB stu- sures to address homophobia and heterosexism . dents reported higher stress levels, less social support, increased fi nancial concerns, and greater levels of social isolation. Use of Organizational Change Prior research indicates that LGB medical stu- Models to Promote LGBT Inclusion dents and residents experience signifi cant chal- and Climate Change lenges during training, and that the safety of the learning environment impacts both decisions Organizational change models guide the transi- about identity disclosure and future career paths. tion of an institution from its present to a desired Residents use the presence of identifi able sup- future state, helping them address why change ports, curricula inclusive of LGBT health issues, should occur, how it should happen, and what and effective non-discrimination policies to assess actions and resources are required to produce the the professional and personal risks during training. intended outcomes. These models have been Institutions with an emphasis on respect and used effectively to increased access to care and diversity are likely to enhance the experiences of improve self-effi cacy among racial/ethnic minor- LGBT trainees. Creating a welcoming and inclu- ities. More recently, the use of organizational sive learning environment may include: (1) clini- change models had been applied to the promo- cal and simulated patient problems that include tion of LGBT inclusion and climate change. LGBT identity as a normal part of the human The Eckstrand, Lunn, and Yehia Organizational range; (2) enhanced medical school and residency Change Model of LGBT Inclusion (Fig. 3.1) high- curricula in sexuality; (3) institution-sponsored lights elements necessary for initiating LGBT support groups that recognize and allow the organization change (LGBT organization priority stresses of being LGBT during medical training; and resources, organization champions, depth of

Fig. 3.1 Organizational change model of LGBT inclusion (source: K. Eckstrand) 36 B.R. Yehia et al.

LGBT mission, value continuous learning, value Table 3.1 Improving climate for students, faculty, and LGBT equality and inclusion) and processes to staff accelerate the change process (values in action, Action Description leveraging resources, change management, infor- Identify advocates Having advocates both mation exchange, relationship building, measur- within an institution and in the community is a key ing and reporting disparities) (Fig. 3.1 ). element of fostering a safe Through the use of this and similar models, and welcoming health organizations can initiate and sustain environment for LGBT meaningful organizational climate and culture trainees, faculty, and staff change to improve the health and healthcare of Celebrate LGBT The LGBT community holidays has several prominent the LGBT communities. dates on the calendar that could be celebrated. Such dates include National Practical Tools for Improving Coming Out Day, National Trans Day of Culture and Climate Remembrance, and Pride Create an outlist One important way to The fi rst steps towards improving i nstitutional foster positive institutional climate and culture are often to create practical climate is through the tools that can be used by trainees and faculty. creation and maintenance of an “outlist.” Outlists Tables 3.1 and 3.2 contain several suggestions are resources composed of and resources that can be used to improve institu- out LGBT-identifi ed tional climate. This is not an exhaustive list but individuals within an merely a series of suggestions to be deployed institution who volunteer to have their name and within individual institutions. position posted online and are willing to serve as a resource for students Conclusions Implement a SafeZone The SafeZone program workshop was developed to enhance and maintain Institutional climate and culture contribute in environments in essential ways to the experience of LGBT patients workplaces, schools and and trainees. Although much has been written in other social settings that recent years regarding the improving environment are culturally competent and supportive to LGBT for LGBT people within the healthcare space, there individuals, as well as clearly remains room for further development in straight identifi ed people this area. Institutions and individuals aiming to who care about diversity, maximize their commitment to diversity now equality and inclusion Create a LGBT group LGBT student, faculty, have a broad array of practical tools to employ and/or staff groups can in their efforts. As has been discussed, LGBT bring together members of patients still face many barriers to equitable care the community and allies. and inclusive healthcare environments. With fur- The group can serve as support for LGBT ther efforts on the part of both private and govern- individuals and increase mental actors, our healthcare system can transform visibility to better serve LGBT patients and their families. (continued) 3 Culture, Climate, and Advocacy 37

Table 3.1 (continued) Table 3.2 Improving climate for patients Action Description Action Description Recruit LGBT students, Developing targeted Include “sexual In any written policies faculty, and staff LGBT outreach materials orientation” and prohibiting non- and recruiting at LGBT “gender identity discrimination against events and organizations and expression” in patients, include sexual can attract a greater patient’s bill of orientation and gender number of LGBT rights and identity and expression as a individuals to the nondiscrimination personal characteristic not to institution and improve policy be discriminated again. This climate and visibility will protect LGBT patients Include “sexual An explicit policy against and make them feel orientation” and “gender LGBT discrimination welcomed and understood at identity and expression” protects LGBT students, the institution in nondiscrimination faculty, and staff. It also Develop or adopt a The visitation policy should policies sends a clear message that policy ensuring allow the patient to designate LGBT individuals should equal visitation visitors, including, but not feel welcomed and limited to, a spouse, domestic comfortable at the partner (including a same-sex institution partner), children (regardless of legal recognition), other family member or friend Create a welcoming Post rainbow ﬂ ags, pink atmosphere triangles, or other LGBT- friendly symbols or stickers. Exhibit posters showing racially and ethnically diverse same-sex couples or transgender people Display LGBT There are many brochures and health materials posters with LGBT health material. Make these available to inform LGBT patients about their particular health needs. These materials will also send a message to LGBT patients that the institution cares for their health Communicate with Listen to patients and how LGBT patients with they describe their own understanding and sexual orientation, partner(s) compassion and relationship(s), and reﬂ ect their choice of language. Ask nonjudgmental questions about sexual practices and behaviors, and respect the gender identity of a patient by using the patient’s preferred pronouns (e.g., he/ him/his, she/her) Stay informed about Seek information and stay up LGBT health issues to date on LGBT health topics. Be prepared with appropriate information and referrals for LGBT patients 38 B.R. Yehia et al.

Resources 8. Krehely J. How to close the LGBT health disparities gap. Washington, DC: Center for American Progress; 2009. 9. National Healthcare Disparities Report: 2011. US 1. Advancing effective communication, cultural com- Department of Health and Human Resources. Agency petence and patient- and family-centered care for for Healthcare Research and Quality; 2011. the LGBT community. The Joint Commission; 10. Risdon C, Cook D, Willms D. Gay and lesbian phy- 2011. sicians in training: a qualitative study. CMAJ. 2. Dhaliwal JS, Crane LA, Valley MA, Lowenstein 2000;162(3):331–4. SR. Perspectives on the diversity climate at a US med- 11. Robb N. Fear of ostracism still silences some gay ical school: the need for a broader deﬁ nition of diver- MDs, students. CMAJ. 1996;155(7):972–7. sity. BMC Res Notes. 2013;6:154. 12. Snowdon S. Equal and respectful care for LGBT 3. The Fenway Institute: About. http://thefenwayinstitute. patients. The importance of providing an inclusive envi- org/about/. ronment cannot be underestimated. Healthc Exec. 4. Healthy People 2020. Lesbian, gay, bisexual, and trans- 2013;28(6):52, 54–5. gender health. http://www.healthypeople.gov/2020/ 13. The health of lesbian, gay, bisexual, and transgen- topicsobjectives2020/overview.aspx?topicid=25 . der people: building a foundation for better under- 5. Human Rights Campaign Healthcare Equality Index. standing. Institute of Medicine (US) Committee on www.hrc.org/hei . Lesbian, Gay, Bisexual, and Transgender Health 6. Gay and Lesbian Medical Association (GLMA). Issues and Research Gaps and Opportunities. www.glma.org . Washington, DC: National Academies Press; 2011. 7. Grant JM, Mottit LA, Tanis J. Injustice at every turn: a 14. When health care isn’t caring: Lambda Legal’s survey report of the national transgender discrimination sur- of discrimination against LGBT people and people vey. 2011. with HIV. New York: Lambda Legal; 2010. Internalized Homophobia, Disclosure, and Health 4

Sarah C. Fogel

Purpose Internalized Homophobia vs. Internalized Heterosexism The purpose of this chapter is to identify personal and community characteristics that may impact Homophobia is a c onstruct that represents nega- the provision of, or access to, healthcare for tive feelings about LGBT people, ranging from a LGBT patients. general lack of understanding, to fear and loath- ing or hate [ 1]. Homophobia will be referred to as inclusive of biphobia and transphobia (equiva- Learning Objectives lent constructs applied to bisexual and transgender persons, respectively) when discussed in this This chapter will prepare you to: chapter. It is important to note that, all too frequently, bisexuals and transgender people are • Differentiate between homophobia and inter- overlooked in the literature and in the minds of nalized homophobia (ICS3 ) many straight, lesbian and gay people, including • Identify at least three ways that heterosexism healthcare providers. This chapter is to be read may affect your daily practice and the health with the acknowledgment of all of the popula- of LGBT people (Pr3 , SBP4 ). tions represented in the LGBT acronym (lesbian, • Identify at least two opportunities and two gay, bisexual, transgender, queer/questioning and barriers to disclosure of sexual orientation and intersex). It is also important to note that many gender identity in your practice ( ICS1 , ICS4 , people who identify as part of this population do PLBI1 ). not label themselves with any of these descrip- • Develop an environment that will elicit dis- tors. Perhaps the most important thing healthcare closure of sexual orientation and gender iden- providers can do is to invite patients to tell you tity in a safe and appropriate manner (PBLI2 , who they are and to acknowledge what they have Pr4 , ICS3 , ICS4 ) . told you. Although homophobia has been, and continues to be, a major issue for the health and well- being S. C. Fogel , Ph.D., R.N., F.A.A.N. (*) of LGBT people, a more current phenomenon School of Nursing , Vanderbilt University , that may be replacing outright homophobia is 307 Godchaux Hall, 221 21st Avenue South , Nashville , TN 37240 , USA that of heterosexism (see Table 4.1 ). Heterosexism e-mail: [email protected] is an “ideological system that denies, denigrates,

Table 4.1 Examples of heterosexism and microaggressions Heterosexism Microaggressions • Assuming that all of your patients are heterosexual • Asking someone if they are a woman or a man and that everyone has or is interested in having (male or female) an opposite-sex partner • Endorsing heteronormative culture or language • Assuming that all children have opposite- sex parents • Referring to bisexual people as confused • Assuming all sexually active women need birth control • Assuming that all LGBT are the same; telling • Using language that presumes heterosexuality in others, such someone that they are not a typical lesbian as husband or wife, instead of gender neutral language such • Assuming that all LGBQ people want to as partner engage in sex with anyone if bisexual or with • Using forms that allow for acknowledgment of only anyone of the same gender if lesbian, gay or marital status as opposed to relationship status queer and stigmatizes any nonheterosexual form of physical self harm. The effects of internalized behavior, identity, relationship, or community” heterosexism, with its more deceptive presenta- [2 ]. One difference between homophobia and tion, are not as evident to LGBT people or to their heterosexism is demonstrated through the use of healthcare providers. Heterosexism is so thor- legal terms; qualifi cation of actions based on oughly entrenched in daily life that it effects homophobia are hate crimes while heterosexism everyone, LGBT or straight, and without con- results in crimes of omission [3 ]. Heterosexism, scious effort. Internalized homophobia may be as heteronormativity and gender normativity per- insidious as heterosexism. meate society and most cultures in an insidious manner that is not unlike institutionalized racism [2 ], and more recently microaggression [ 4– 6]. Shavers et al. [7 ] describe institutionalized rac- Helpful Hint ism as discrimination through long-standing poli- Although internalized heterosexism has yet cies, practices, structures, and regulations. to be considered by many healthcare pro- Microaggression, too, has its origins in racism, viders or LGBT people, it has likely but applies just as easily to matters of sexual impacted the way LGBT people view the orientation and gender identity/expression. world and how others, including healthcare Microaggressions are verbal, behavioral or envi- providers, perceive them. ronmental demonstrations of prejudice and discrimination that may appear to be harmless on the surface (see Table 4.1 ) [ 5 , 8 ]. There is no seemingly overt intention of harm with institu- Relevance to Health tionalized racism, microaggressions or with the most common forms of heterosexism. However, There is a strong association between health the results are frequently similar and harm is ulti- access and outcomes for any group of people mately perpetrated. who experience a perception of stigma and mar- This chapter will discuss the resulting disparities ginalization [10 , 11 ]. There is an extensive litera- of access and provision of healthcare to LGBT ture that supports negative health outcomes in the people when homophobia, biphobia, transphobia presence of fear [12 ]. There are also several and/or heterosexism becomes internalized. policy-impacting documents (i.e. Healthy People Internalized homophobia, or self- stigmatization, [HP] 2010, LGBT Companion Document, HP incorporates society’s negative views into the 2020 and the 2011 IOM report) that substantiate self-concept and results in negative feelings the problems associated with lack of healthcare about one’s own non-heterosexual identity [ 9 ]. access and of poor health outcomes in LGBT Not uncommonly, this internalization contributes populations. Fear among LGBT people, and to health issues including emotional, mental and among healthcare providers, results from what is 4 Internalized Homophobia, Disclosure, and Health 41 not known, or from past experiences among pro- knowledge, information and medicine that can viders and LGBT people (either their own or that fi x myriad problems. Fear may also be a result of of others) that continue to reinforce negative the tendency of healthcare providers to universal- reactions. This frequently develops a circular pat- ize human health and to minimize sexual and tern of fear for the LGBT patient; lack of access gender differences, thus creating a feeling of because of avoidance that results in poorer health invisibility among LGBT people. outcomes that leads back to increased fear and Fear is also a valid emotion for providers. It vulnerability. Fear on the part of the provider has can be intimidating to be expected to know every- consequences that also impact the LGBT patient, thing while faced with an unfamiliar clinical as the patient is dependent on care from that pro- problem. Likewise, there can be a fear of mis- vider. The provider may restrict his or her practice guided diagnoses and treatment if not familiar from accepting LGBT patients to reduce their with particular health risks facing LGBT people, own experience of fear or of being uncomfort- leading to potential accusations of clinical able, but that perpetuates the cycle of fear and misjudgment. increases lack of access for an entire population of people. Helpful Hint LGBT people are at a higher risk for sev- Fear and Hate eral diseases related to not only sexual behaviors, but other health sequellae No one likes to think of h ealthcare providers as related to obesity, higher rates of drinking harbingers of hate, but unless there is adequate alcohol and smoking, nulliparity as dis- screening of all involved personnel (in the offi ce, cussed in other chapters. hospital, surgical area…), the potential is there. If we examine the word hate and include its syn- onyms (animosity, revulsion, disgust, abhorrence and dislike), it is easier to imagine it entering our practices. The potential for hate to have an impact Implicit Bias on practice, just like heterosexism, may be insidious. Impact on practice will be more thoroughly There is a growing body of evidence examining discussed later in this chapter in the section on and measuring implicit bias, also known as Disclosure in the Healthcare Environment . unconscious bias, among healthcare providers. Fear, on the other hand, is the primary emo- This type of bias is, like heterosexism and micro- tion experienced by most people when they aggression, somewhat hidden and insidious. approach an unknown situation. Some people These are the biases that we do not like to may experience excitement and a feeling of acknowledge, but are there affecting our attitudes empowerment from the unknown, but many and behaviors in the clinic and other health experience fear. It is not uncommon for anyone, healthcare settings (see Fig. 4.1 ). Again, this phe- regardless of sexual or gender identity, to have a nomenon grows out of studying racism and other fear of healthcare providers. This fear is from culturally-based prejudices [13 ]. It is also appli- what is not known; are we going to be told that cable to the care of LGBT people, as any charac- we have an incurable disease, that the family teristic in someone else that triggers a negative curse of diabetes has fi nally gotten us or that we reaction in a healthcare provider (consciously or are overweight or obese and then be subject to not) has the potential to negatively impact patient that fear turning into shame? Healthcare provid- care. Blair, Steiner and Havranek [ 14 ] have pro- ers are in a position of power and authority over vided a “roadmap” for future research on implicit patients; it is assumed that we have the talent, bias by identifying three goals. These goals are to 42 S.C. Fogel

of sexual orientation or gender identity” ([15 ], ¶ 4). This document summarizes Acts, rules and provisions developed over the past several years to safeguard human rights for all Americans. The policies include:

• The Affordable Care Act • The Centers for Medicare & Medicaid Services (CMS) rules (requiring all hospitals that participate in Medicare and Medicaid) to respect the rights of all patients to choose who may visit them, and that same-sex couples have the same rights as other couples for naming a representative who can make informed care decisions on a patient’s behalf if incapacitated. CMS has also clarifi ed that individual states have the fl exibility to extend rights for long-term care under Medicaid to LGBT couples and to protect the couple’s home. This is federal law for married couples Fig. 4.1 Impact of implicit bias on patient care • Strengthened internal policies at the USDHHS to help ensure that LGBT individuals have equal access to HHS programs and employ- “determine the degree of implicit bias with regard ment opportunities to the full range of social groups for which disparities exist”, to understand “the relations The Better Health and Well-being document between implicit bias and clinical outcomes” and also provides a listing of increased resources and to test interventions to reduce effects of implicit plans for increasing knowledge related to health bias on processes of care and clinical outcomes. disparities in the LGBT population. Meanwhile, providers must recognize and con- The Affordable Care Act (ACA) is considered a sider their own triggers and not ignore them so triumph by many LGBT people and communities. that they are not unconsciously compromising Although it has been criticized by many, acknowl- care. Other potential defl ectors include consider- edgment of LGBT people, health disparities and ing the patient’s perspective, challenging the rec- consideration, for the fi rst time on this level, gave ognizable cues to bias and reaffi rming egalitarian many people a feeling of arrival or acceptance by goals as a provider. the federal government. Some of the easily identifi ed benefi ts of the ACA include the ability to be insured without having a recognized domestic partner, a job or a pre-existing condition. Research Current Policy indicates that LGBT people have higher rates of being uninsured because of the inability to have The Presidential Memorandum on Hospital coverage by their partner’s plan in many places, Visitation was developed to help improve the higher rates of unemployment and higher rates of lives of LGBT people by ensuring “the rights of chronic disease, including HIV/AIDS, than the hospital patients to designate visitors regardless general public [16 , 17 ]. 4 Internalized Homophobia, Disclosure, and Health 43

Beyond Sexual Orientation options that support transsexual bodies and trans- and the into Confl agration gender identities. of Sex and Gender Gender Typical/Atypical Many LGBT people We live and practice in a binary world. Kinsey’s present characteristics that do, or do not, align work in the 1940s was the fi rst time the comfort with their biologic sex. Among lesbian women, of the binary was openly challenged. Since then, for example, many lesbian females are com- the concept of the scaling of sexual orientation pletely comfortable in their female bodies. These has been pretty much accepted with many schol- women will present anywhere from very femi- ars, and the general public, recognizing that nine to androgynous to even quite masculine in attraction is more complicated than simply hor- their appearance. The term lesbian female may mones [18 ]. With the exception of individuals seem to contain redundancy, but there are many affected by differences in sex development lesbian women who do not identify with the (DSD-affected)/intersex people, gender has also female or feminine parts of their anatomy (or existed in the binary (either/or female or male). similarly, females may not identify with the term This is currently being challenged in the same lesbian). The same is true for gay men. People way that heterosexuality was in the 1940s. Sex who identify as gender atypical or gender non- and gender were largely considered to be the conforming do not necessarily consider them- same, but today we know that sex is biologic and selves transgender. that one of the main theories on gender proposes that gender is socially constructed [19 , 20 ]. This section will dissect gender without compounding it with sexual orientation. Please note that any Helpful Hint sexual orientation may be integrated within any Using visual cues and assessment in the gender identifi cation. LGBT population may lead to assumptions and not be as trustworthy as asking and lis- Gender Normativity Just as heteronormativity tening. Always “listen to your patient”, affects LGBT people, gender normativity affects understand their chosen terminology, and people who do not identify with a specifi c gender replicate this in all settings. or people who identify as a gender not congruent with their physical body. This effect is evident in language (pronoun use), history and intake forms (relevant to identifi cation other than male or Disclosure in the Healthcare female), health examinations and treatment Environment needed and received (e.g., does your patient who presents as a male need a gynecological exam Disclosure is a behavior or action that informs a and hormones because he still has a uterus and healthcare provider of the sexual and/or gender ovaries?) and relationships with healthcare pro- identity of an LGBT person. This section will providers (providers are used to interacting with the vide language and other options that will allow pro- binary on all levels). More recently, how do the viders to elicit this type of sensitive information. It differences in the sexes and the reactions to medi- will also explain how internalized homophobia, cations play out in prescribing for transgender heteronormativity and gender normativity may pre- people? Scientists are just beginning to recognize vent disclosure, thus limiting providers’ ability to potential biological differences necessary in provide appropriate care and support. medication prescribing for male and female patients [ 21]. This becomes even more compli- Why? Although disclosure of sexual orientation cated and important when we expand the binary is possibly crucial for providing population- structure of sex and gender to include other based healthcare , the development of patient/ 44 S.C. Fogel provider relationships and meeting the objectives provider reactions stem from homophobia and of Healthy People 2020, little is known about the include: (a) ignoring the disclosure [27 ]; (b) dis- phenomenon. It is, therefore, important to exam- missal, “There is always the chance that doctors ine both facilitators and barriers to disclosure. will treat us differently, you know, dismiss us, be less concerned…” ([27 ], p. 223); (c) intrusion or Facilitators Facilitators of disclosure consist of: invasion of privacy [28 ]; (d) curiosity and anxiety (a) positive healthcare provider behaviors includ- [28 ]; (e) stereotyping; and (f) shock, pity, fear, and ing inclusive language in health histories, being embarrassment [29 ]. Homophobia is one of the supportive, showing respect, and calm acknowl- primary barriers that lesbian women and gay men edgment of identity; (b) a welcoming clinical cite when hesitating to access healthcare [26 , 30 ]. environment including reading material of inter- Although negative HCP reactions, or the fear of est to LGBT people in the waiting area and exam negativity, may or may not affect the medical rooms, affi rming posters or artwork and cultur- treatment of the patient, both the fear and actual ally aware offi ce staff; and (c) healthcare pro- experience of mistreatment may indeed impact the vider knowledge of LGBT health issues [22 , 23 ]. healthcare experience in a negative way and result Similar, but considered to be predictors of disclo- in the avoidance of care in the future. sure of sexual orientation are healthcare provider familiarity with the LGBT community and cer- Potential and Actual Consequences to Disclosure tain personal characteristics or demographic The distinction between potential and actual con- characteristics of LGBT people. However, the sequences is the same as the distinction between LGBT community is extremely diverse so what fear of and actual experiences of negative health- may be a facilitator to one culture or group may care provider reactions—that is, what may hap- be a barrier to another [24 ]. Providers must be pen and what has happened. Negative aware and familiar with their communities. consequences to disclosure have included: (a) inappropriate behavior (e.g., referral to a mental Barriers Although there has been little attention health provider, voyeuristic curiosity) [30 ]; (b) focused on facilitators of disclosure, barriers to rejection [31 ]; (c) rough physical handling [ 32 ]; disclosure have been examined more extensively. (d) misdiagnosis and inappropriate healthcare Four distinct sets of problems related to disclo- teaching [ 33]; and (e) breached confi dence [22 , sure in the healthcare environment have emerged, 27]. Negative consequences to disclosure set up along with the realization of internalized barriers to future disclosure and healthcare homophobia [25 ]. Many barriers to the act of dis- access. Fear of mistreatment and lack of trust closure are subsumed within these problem areas. with disclosure are, perhaps, the most damaging The four main problem areas encompass negative barriers as they impede good relationships in the healthcare provider (HCP) reactions to disclo- healthcare setting. Impedance of good relation- sure, potential and actual consequences to disclo- ships may decrease healthcare satisfaction and sure, cultural and political infl uences that have impact outcomes such as increased cost, hindered healthcare access for LGBT people, and decreased access and advanced stages of disease consequences of nondisclosure. The ensuing sec- upon diagnosis [34 ]. tions will present each of these barriers related to the major problem areas. Cultural and Political Infl uences That Have Hindered Healthcare Access Perhaps the most Negative HCP Reactions to Disclosure Fear of, devastating infl uence of the twentieth century and actual negative reactions from healthcare pro- on LGBT healthcare was acceptance of the viders continue to be a part of the disclosing expe- practice of diagnosing homosexuality as a treat- rience for lesbian women and gay men [26 ]. able mental illness. Even though the American Barriers that emerge from negative healthcare Psychiatric Association removed homosexuality 4 Internalized Homophobia, Disclosure, and Health 45 from the diagnostic criteria in 1973, the infl u- Your Motives as a Provider It is well- ence of that earlier era on politics and American documented that culturally competent care for culture has persisted into the twenty-fi rst century. LGBT patients includes an examination of the Stevens [35 ] addressed the problem of hetero- motives of the practitioner, and in some cases the sexist structure in healthcare as a macrolevel, or, environment, for eliciting personal information. a delivery system problem. Heterosexism, het- Curiosity is never a reason to engage in the type of eronormativity and gender normativity represent dialogue that would prompt disclosure of gender systems level infl uences that maintain individual or sexual identity. Curiosity is frequently trans- prejudice and homophobia/bi/transphobia as the lated as voyeurism and further interpreted as fear- individual level prejudices. Political and societal provoking and as a threat [ 36]. However, if you are environments contribute to heterosexist structur- providing primary care and risk assessments for an ing. Heterosexist structuring implies an assump- LGBT patient and trying to establish a medical tion that all people are heterosexual and that home, knowing personal characteristics of your delivery of healthcare centers around typical gen- patient is important not only for physical and men- der roles. This practice results in LGBT people tal health, but also to identify social support feeling “invisible, uninformed, and alienated from mechanisms and primary relationships in the case the health care process” [35 ]. Heterosexism has of an emergency. This is also appropriate in the been a major issue in healthcare and continues to tertiary care setting to ensure proper treatment of a be a major barrier to disclosure. patient’s family of choice and appropriate informed consent and advance directives. Consequences of Nondisclosure Because LGBT people are at risk for several health-related problems based on identity and behavior, it is impera- Helpful Hint tive that healthcare providers be able to identify Always be able to explain to a patient why people in this higher risk group for preventive you are asking for confi dential information . and primary healthcare. Consequences to nondisclosure include: assumptions of heterosexuality (therefore, potential risks may be overlooked); invisibility of self and sources of support such as Healthcare Advantages a partner or other chosen family; irrelevant and Disadvantages healthcare teaching; insensitive questioning; sexism; improper treatment; and misdiagnosis [ 10 , The advantages and disadvantages of healthcare 34 ]. Each of these consequences impacts prac- provider’s being aware of a person’s sexual and tice, resulting in less than optimal and potentially gender orientation are numerous. The American dangerous healthcare. Medical Association (AMA), indicated that com- In summary, few facilitators of, and several bar- petent care can be best provided with the knowl- riers to disclosure have been identifi ed. Barriers to edge of the patient’s sexual orientation [37 ]. Yet, disclosure, and therefore barriers to appropriate there still remains pervasive fear and ill effects of healthcare, are heterosexism, homophobia and that disclosure. The disadvantages include failure discrimination, misinformation about health risks to screen, diagnose and treat. There are also related to sexual and life-style behaviors, invisi- disadvantages to the partnership/relationship bility in the healthcare environment, fear and past between the provider and the patient when an experiences of healthcare providers and of LGBT important aspect of a person’s life is withheld. As people. These barriers, as well as facilitators, discussed earlier (in the section facilitators and may impact disclosure of LGBT people differ- barriers), there are negative consequences ently. Constant surveillance of these phenomena socially, emotionally and physically when health- impacting practice is warranted. impacting information is withheld. 46 S.C. Fogel

Conversely, when sexual orientation and/or gender identity is known, the relationship and Helpful Hint environment deemed safe by the LGBT patient Being prepared to make informed and and problems or stressors identiﬁ ed, appropriate appropriate referrals will contribute to a care can be provided and issues addressed at an trusting relationship with LGBT clients. earlier stage of disease, thereby, improving health outcomes. These include improved physical, mental and emotional health.

Summary Physical and Social Responsibility Homophobia and heterosexism continue to As healthcare providers, it is our duty to provide impact the health and well-being of LGBT a safe environment for all patients. Although people. Health consequences are sometimes there is a right to refuse a patient care based on compounded by the internalization of these phe- availability or other reasons outlined in the codes nomena by LGBT people making the develop- of ethics for respective healthcare disciplines, ment of positive healthcare relationships diffi cult. there is never a right to discriminate or participate Several studies and articles have indicated that in discriminatory practices toward any patient. the impact of the relationship with healthcare By virtue of the power relationships within medi- providers, the healthcare environment, and other cal or other healthcare practices, the responsibil- access issues that support disclosure, play a vital ity of a safe and welcoming environment, role in health-seeking behaviors [24 , 29 , 31 , 37 – including other offi ce personnel, becomes that of 42 ]. LGBT people who have positive relation- the offi ce management and care providers. There ships with healthcare providers seek to actively are innumerable resources available to assist with participate in health promoting behaviors. The creating this environment (see Chaps. 3 and 7 ). A establishment of a relationship of trust between few suggestions include: demonstration of all healthcare providers and patients promotes favor- kinds of diversity (posters of different ethnicities, able healthcare outcomes and is increasingly types of families, groups of friends, etc.); an important for many regulatory, fi nancial and per- assortment of reading material that includes more sonal reasons. than family journals and bible stories; intake forms that provide an opportunity to identify more than two genders or marital status (relation- References ship status is an alternative) with options for married or partnered, single, etc. (this will also 1. Sears JT, Williams WL, editors. Overcoming hetero- provide insight into support systems and sexual sexism and homophobia: strategies that work. 1st ed. New York: Columbia University Press; 1997. practices of heterosexual people); history forms 2. Herek GM. The context of anti-gay violence: notes on that ask about sexual practices other than the cultural and psychological heterosexism. J Interpers assumption of heterosexuality; language used by Violence. 1990;5:316–33. staff and providers that does not make assump- 3. Herek GM, Cogan JC, Gillis JR, Glunt EK. Correlates of internalized homophobia in a community sample of tions about gender or relationships. Providing an lesbians and gay men. J Gay Lesbian Med Assoc. opportunity to disclose information will yield 1998;2(1):17–26. much better results than having patients walk in 4. Balsam KF, Molina Y, Beadnell B, Simoni J, Walters and walls go up around their identity or sexual K. Measuring multiple minority stress: the LGBT People of Color Microaggressions Scale. Cultur practices (see Helpful Hint box for references Divers Ethnic Minor Psychol. 2011;17(2):163–74. and resources). As for social responsibility, being doi: 10.1037/a0023244 . aware of appropriate referrals and resources for 5. Sue DW, Capodilupo CM, Torino GC, Bucceri JM, LGBT patients is also important. Holder AM, Nadal KL, Esquilin M. Racial micro- 4 Internalized Homophobia, Disclosure, and Health 47

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advisory-committee/ama-policy-regarding-sexual- 40. Simkin RJ. Lesbians face unique health care prob- orientation.shtml . Accessed 27 Jan 2014. lems. Can Med Assoc J. 1991;145:1620–3. 38. Cole SW, Kemeny ME, Taylor SE, Visscher BR. Elevated 41. Taylor B. ‘Coming out’ as a life transition: homosex- health risk among gay men who conceal their homo- ual identity formation and its implication for health sexual identity. Health Psychol. 1996;15:243–51. care practice. J Adv Nurs. 1999;30:520–5. 39. Dardick L, Grady KE. Openness between gay persons 42. Trippet SE, Bain J. Reasons American lesbians fail to and health professionals. Ann Intern Med. 1980; seek traditional health care. Health Care Women Int. 93:115–9. 1992;13:145. Part II The LGBT-Inclusive Clinical Encounter Clinic and Intake Forms 5 Craig A. Sheedy

The delivery of healthcare is a complex Purpose process that involves determining patient needs, planning and providing care, and coordinating The purpose of this chapter is to advise on ways to therapy and additional services. Within this procreate an inclusive and welcome clinic environ- cess, the environment surrounding a clinical ment for members of the lesbian, gay, bisexual, encounter is an integral component of any health- and transgender (LGBT) community. care visit, and can be a signiﬁ cant factor in overall patient satisfaction [1 ]. Creating an inclusive and welcoming environment for LGBT patients Learning Objectives takes thought and effort by healthcare providers and organizations. Furthermore, having a well- • Discuss the importance of creating a safe and planned clinical environment can lay the founda- welcoming environment for LGBT patients in tion for developing a successful therapeutic the healthcare setting (KP4 , PBLI1 , SBP5 ). relationship between a provider and the LGBT • Describe at least three strategies for improv- patient. The clinical environment can be broken ing components of the structural and interper- down into three broad categories as described by sonal environments based on the needs of Wilkerson: the physical, systemic, and interper- LGBT patients (PBLI1 , SBP5 , ICS3 , ICS4 ). sonal environments [ 2 ]. Special attention should • Identify at least three strategies for staff train- be given to each of these areas in order to improve ing and patient engagement to support a safe on care provided to members of the LGBT and welcoming medical home (PBLI2 , Pr4 , community. ICS3 , ICS4 ). • Discuss opportunities to connect and provide outreach to members of the LGBT community Physical Environment: Create (SBP4 ). a Welcome Space

The ﬁ rst impression an LGBT patient has regarding a visit with a healthcare provider is of C. A. Sheedy , M.D. (*) the clinic space itself. The structural compo- Department of Emergency Medicine , Vanderbilt nents that affect a patient’s experience include University Medical Center , 1313 21st Ave. S., 703 Oxford House, Nashville, TN 37232 , USA welcoming décor, the physical facilities, and e-mail: [email protected] patient ﬂ ow.

Décor and Materials Helpful Hint Given the historic marginalization of the LGBT LGBT-inclusivity can be enhanced by post- community, LGBT patients often search an offi ce ing materials refl ective of LGBT lives, for signs that the provider is friendly towards such as a rainbow fl ag, poster of same-sex LGBT individuals [1 – 3]. A clinic that primarily couple, or LGBT health brochures in the serves the LGBT community will include many clinic waiting room . relevant LGBT materials, but even clinics with a diverse patient population can show that they are LGBT-friendly by including even a few elements. Gender-Inclusive Restrooms Once a specifi c sign or material suggesting the establishment is LGBT friendly has been identi- Another aspect of the physical space to consider fi ed, patients are likely to feel more comfortable is the available restrooms. Transgender and other with the clinic environment. Many different people not conforming to gender stereotypes options are available for inclusion in the clinic have been harassed for entering the “wrong” space, and examples include: bathroom when only dichotomous “Men” and “Women” options are available [ 6 ]. Offering at • Post a rainbow fl ag sticker, the Human Rights least one labeled unisex, gender-inclusive rest- Campaign (HRC) logo, or other similarly room is a way to help create a safer and more identifi able symbol of the LGBT community comfortable atmosphere for patients [2 , 3 ] in the waiting area [1 , 2 ]. (Fig. 5.3). In addition, such a restroom also better • Include posters that show diverse same-sex serves parents caring for opposite sex children, couples or transgender people, or posters from and disabled persons with opposite sex caregiv- non-profi t LGBT or HIV/AIDS organizations ers [ 5 ]. It should be noted that while offering a [1 , 4 ]. unisex restroom can be an important signal of • Include brochures discussing LGBT health acceptance, patients should still be allowed to use concerns such as mental health, hormone ther- restrooms with respect to their gender identity, apy, substance use, safe sex, and cancer aware- and not be required to use the unisex restroom. ness. These can be posted in the waiting area, but also consider posting in the exam room where they are available in privacy from other Patient Flow patients (Fig. 5.1 , see “Resources” section at the end of this chapter for more information) Patient fl ow is defi ned as the systematic process [ 1 , 3 ]. of caring for patients, starting from the time they • Wear a rainbow pin on the healthcare provid- enter the medical facility to the time when they er’s white coat (Fig. 5.2 ). check out. It includes both medical and adminis- • Include LGBT specifi c media such as national trative functions. Flow can be one of the most dif- or local magazines or newsletters. fi cult components of the physical environment to • Acknowledge relevant days of observance [5 ]: successfully address for LGBT patients [2 ]. It is – National LGBT Health Awareness Week complicated by the number of individual points (Last week of March) of contact the patient has with members of the – LGBT History Month (October) healthcare team, support staff, and other patients, – National Coming Out Day (October 11th) especially in public areas such as the waiting – National Transgender Day of Remembrance room. Communication about sexual orientation (November 20th) or gender identity can be challenging for LGBT – World AIDS day (December 1st). patients because of a fear of discrimination by 5 Clinic and Intake Forms 53

Fig. 5.1 Brochures that include LGBT health topics placed in the clinic waiting area

Fig. 5.2 A rainbow caduceus and rainbow button which may be worn on a healthcare provider’s white coat or ID badge

providers, staff or other patients, a misunder- patients have described situations where other standing of the reason for the clinic visit, or an patients or staff have stared at them uncomfort- outright denial of care. For example, transgender ably or began laughing at their appearance [2 ]. 54 C.A. Sheedy

Fig. 5.3 Sign for a gender-inclusive restroom

LGBT individuals have described being asked questions that forced them to out themselves as Systemic Environment being LGBT in front of other patients or staff who did not need such information. Similarly, In addition to structural environment, elements of HIV-positive patients have been put in situations the clinic system and operations as a whole are during which their HIV-status was disclosed to crucial to the patient experience. Considerations individuals who did not need access to such that fall into this realm include the mission state- information [2 ]. ment, operational policies, and patient intake Many of these problematic situations occur in forms. Careful attention to these elements will the waiting area. Providers commenting on this serve as a foundation, allowing the healthcare topic have recognized that poor patient fl ow is a organization to address the unique needs of the problem, but have experienced diffi culty address- LGBT population. ing many such problems. In an ideal patient setting, patient fl ow supporting LGBT patients should include a special focus on the following: Comprehensive Mission Statement, Non-discrimination and Visitation • Maintaining privacy at all steps of the patient– Policies provider interaction [1 , 3 , 7 ]. • Avoid collecting sensitive information in pub- Mission Statement lic areas. As a starting point, the healthcare facility should • Provide staff sensitivity training as discussed have a mission statement that assures the organi- later in this chapter [1 , 4 , 7 ]. zation’s commitment to respect individual diver- • Make adjustments to the physical space and sity, which is inclusive of LGBT persons [ 2, 4, 5 ]. include LGBT décor and materials as This mission statement will serve as a founda- described above—this will let LGBT patients tion for specifi c policies that will ensure the know that you are attempting to create a cul- equal and fair treatment of all patients. Most turally relevant space . important amongst such policies are patient and 5 Clinic and Intake Forms 55 employee non-discrimination and visitation pol- have inclusive visitation, healthcare proxy, or icies, which are premier on the list for creating a next-of-kin policies, the results of which are dev- safe clinical environment according to the astating for patients. Healthcare Equality Index.

Non-discrimination Policy Assure Confi dentiality A comprehensive non-discrimination policy needs to be carefully drafted and implemented. Patient information is protected by the Health This policy should explicitly state that equal care Insurance Portability and Accountability Act of will be given to all patients regardless of age, 1996. When a patient chooses to disclose being race, sex, ethnicity, physical ability or attributes, LGBT, this information should be treated as sen- religion, socioeconomic status, sexual orienta- sitive and confi dential. Furthermore, it is essen- tion, and gender identity/expression [1 , 3 , 4 ]. tial to assure patients of this confi dentiality so The Joint Commission mandates that all hospi- they are comfortable disclosing personal infor- tals prohibit discrimination on the basis of per- mation that is pertinent to their health, knowing sonal characteristics, which includes sexual that it is protected [ 1 , 7]. This should include orientation and gender identity or expression [ 3 ]. information contained in the medical record, on Furthermore, many states and some cities simi- all documents, and conversations with a larly have made discrimination on the basis of provider. sexual orientation or gender identity or expres- Healthcare facilities should develop and dis- sion illegal. The non-discrimination policy tribute a written confi dentiality statement. The should be posted in an easily visible location key components of such a policy should include (including print material and on the facility the information covered, which offi ce personnel website) for all staff and patients to view, helping has access to the medical record, how test results to demonstrate a dedicated commitment to serve are kept confi dential, the policy on sharing infor- all patients with high quality and equitable care. mation with insurance companies, and any specifi c instances where confi dentiality is not Sample Non-discrimination Policy possible [1 ]. The policy should be provided to Our hospital does not discriminate against indi- every patient in writing, and all staff must agree viduals on the basis of their sexual orientation, to this statement. gender identity, or gender expression in our provision of care to patients, employment, hiring practices, programs, or hospital activities. Helpful Hint Visitation Policy Special consideration should be given to The healthcare facility/hospital should develop a creating policies for non-discrimination, written policy to outline visitation rights and pro- visitation, and patient confi dentiality, to help cedures. Each patient should be granted the right foster trust during the clinical encounter . to receive visitors as designated by the patient, including a spouse, domestic partner, family member, or friend [3 , 4 ]. The importance of this originated following the Langbehn vs. Jackson Intake Forms Memorial Hospital case where, even with proper legal documentation, Lisa Pond’s partner and Similar to the structural environment, fi lling out children were denied medical information and an int ake form is also one of the earliest impres- kept in the waiting room for eight hours while she sions that a patient will have concerning a health- lay dying (see Lambda Legal’s Report). Despite a care practice [1 , 7 ]. Intake forms are often presidential mandate, many hospitals still do not described as “unfriendly” by members of the 56 C.A. Sheedy

LGBT community [2 , 8 ]. Therefore, intake forms viduals, and also offers a sign of acceptance to should be modifi ed to have more inclusive that person [1 , 6 ]. This can include options for choices so that they are applicable to a diverse Female-to-Male (FTM)/Transgender Male, patient population [3 , 4 ]. Whenever possible it is Male-to-Female (MTF)/Transgender Female, best to use open-ended questions, and in many gender queer, or Additional Gender Category. cases it is preferred to offer a blank space for the patient to fi ll in an answer instead of check boxes Sexual Orientation that only offer a limited number of responses [1 , 3 ]. Incorrect assumptions about a patient’s sexual In addition, the intake form should explain why orientation can interfere with establishing trust the information is being collected, and should be and lead to inappropriate care [1 , 3 , 7 ]. The intake tailored to the needs of each facility’s patient form should offer a wide range of choices to sig- population [2 ]. Certain questions can be internal acceptance, including: bisexual, gay, hetero- preted as unnecessary or intrusive when the sexual/straight, lesbian, queer, and an option for patient does not understand how the information unsure/do not know. It may be preferred to offer will be used by the health practitioner. a fi ll in the blank answer as opposed to a check Intake forms are also a component of patient box since many individuals prefer not to conform fl ow. To better protect patient privacy, consider to a specifi c label. It is important not to use the having an option for online completion of the term “other”, as this term suggests that a patient’s intake form before coming to a scheduled identity is not worth listing or not part of the appointment. This allows the patient to complete LGBT community. such forms in a private setting which can help to minimize any concerns of private information Relationship Status being discovered by other individuals in the wait- Intake forms should use the term “ relationship ing area. status ” in the place of “marital status,” as this is more refl ective of the spectrum of possibilities [ 1 , 3 , 7]. Also as a general rule, intake forms should employ use of the word “partner” in place of the Helpful Hint word “spouse.” Ensure that staff is trained to Intake forms should have LGBT inclusive know how to respond to the possible options. choices. Whenever possible use a blank Possibilities can include: single, partnered, mar- space for the patient to fi ll in an answer to ried, domestic partnership, separated, divorced, allow for self-identifi cation… life is a spec- involved with multiple partners, and open or trum and no one should be excluded! polyamorous relationships.

Living Environment Asking about the living environment may help Additional speciﬁ c recommendations for provide information about social needs and LGBT sensitive intake forms are included below. potential stressors. Particular topics may include Please also see Table 5.1 for sample intake form if the patient lives alone, with a roommate, with questions. guardian(s) or family, with a signiﬁ cant other, and whether there are children or dependents in Gender Identity the household. Understanding a patient’s gender identity will help the provider to avoid making assumptions, Parent/Guardian will allow the provider to use the correct pronoun On intake forms for children, it is preferred to to address the patient, and will help guide the have labels for “ parent/guardian ” instead of list- healthcare visit. Adding transgender options to ing “Mother” and “Father.” These terms are the male/female selection on the intake from will inclusive of same-sex parents who may or may help to better collect information on such indi- not be the biological parents [7 ]. 5 Clinic and Intake Forms 57

Table 5.1 Sample intake form questions 58 C.A. Sheedy

Hormone Therapy LGBT community, especially gay and bisexual Knowing whether a transgender patient is cur- men, are at increased risk for contracting these rently or has ever been on hormone therapy is an vaccine preventable diseases [1 , 8 ]. Universal important piece of information when considering vaccination for hepatitis A and B is recom- the overall health of such a patient [7 , 8 ]. This mended, as well as vaccination for HPV for indi- should be included on the intake form for clinics viduals younger than 27 years old. that serve a high volume of LGBT patients. Asking whether the patient has questions regarding hormone therapy will allow the healthcare Interpersonal Environment provider to consider this topic and be able to discuss it during the provider interview. The interpersonal environment includes the interactions that occur between people, namely the Safer Sex Techniques LGBT patient and those involved in providing The intake form should inquire as to whether the care. These interactions are additional factors patient would like more information about safer that affect how healthcare providers and patients sex techniques , and can include asking whether interact, build trust, and feel safe as coming out information is requested for techniques with as LGBT. men, women, or both [ 1 , 7 ]. This can serve as a starting point for a meaningful patient–provider conversation that may otherwise get overlooked Staff Sensitivity Training during a busy clinical interaction. Training should be provided to ensure that both HIV Testing/Status nursing and support staff are comfortable com- Given the increased prevalence of HIV within the municating with LGBT patients and follow LGBT population, it is recommended to ask if the offi ce standards of respect [1 , 2 , 4 , 5 ]. Ideally, patient has been tested for HIV, and the date of the staff would include individuals who are openly most recent test if known [1 , 7 ]. This should include lesbian, gay, bisexual or transgender. Such indi- asking if the result of the test was positive or nega- viduals are an incredible asset and will provide tive. For a positive result, ask if the patient is cur- fi rst-hand knowledge about serving the LGBT rently being treated or followed for HIV infection. public, and will help LBGT individuals to feel represented in their care. For those less familiar History of Transmissible Infections with LGBT topics, guidelines should be created Inquiring about a history of additional sexually to guide patient interactions. This can help transmitted infections ( STIs ) or other transmissible reduce anxiety that staff may possibly have in infections can potentially help the provider with risk regards to interacting with LGBT patients when stratifi cation, and can also identify those with spe- they do not have familiarity with such a popula- cifi c infections beyond HIV that can cause chronic tion. Training should be periodic to address staff disease and pose a risk of transmission to partners [1 , changes and keep staff up-to-date [1 ]. Particular 3 , 7 ]. Infections to ask about include: bacterial vagi- areas of focus for staff training are presented by nosis, chlamydia, gonorrhea, herpes, human papil- GLMA: Health Professionals Advancing LGBT lomavirus (HPV), syphilis, hepatitis A, B, or C virus. Equality, and include using appropriate language, being aware of relevant LGBT health Vaccinations issues, overcoming personal discriminatory Ask whether the patient has received vaccination beliefs, and having knowledge of additional for hepatitis A, B and HPV. Members of the LGBT resources [1 ]. 5 Clinic and Intake Forms 59

ignorance or lack of exposure to LGBT issues Helpful Hint [ 1 , 8 ]. Some may also have religious beliefs that Staff sensitivity training should be they feel require them to denounce members of provided, with focus on the following this community. However, all employees must topics: understand that discrimination against LGBT • Using appropriate language when patients and coworkers is unethical and equally addressing LGBT patients unacceptable as any other type of discrimination. • Being aware of relevant LGBT health Employers will need to make it clear that dis- issues crimination will not be tolerated in the work- • Overcoming personal discriminatory place. Further training or individual counseling beliefs may be necessary to overcome these potential • Having knowledge of additional LGBT barriers to providing safe and equitable care. resources Knowledge of Healthcare Resources The fi nal piece of sensitivity training should Language include knowledge of additional healthcare Staff must learn the appropriate language to use resources available to LGBT community mem- when addressing or referring to patients or sig- bers, when available. Your practice should have nifi cant others. This is particularly relevant to a way to provide referral to LGBT-identifi ed or transgender individuals, and includes such topics friendly providers outside of your practice [1 , 7 ]. as using their chosen name and referring to them To facilitate this goal, consider developing a ref- by their chosen pronoun [ 6 , 7]. When communi- erence list containing LGBT-friendly commu- cating with patients, staff is advised to follow the nity resources and organizations as an aid for patients’ lead [1 ] (see Chap. 1 ). It is therefore staff referral. important to pay attention to how patients describe themselves, their partners, specifi c body parts, etc. If there is any doubt, you can also ask The Clinical Interview the patient what they prefer. It is better to be curious and to try to learn about your patient, than to When interviewing a member of the LGBT com- not ask due to worry about causing offense. munity, as with any patient encounter, the healthcare provider should approach the interview with LGBT Health Issues empathy, open-mindedness, and without passing Sensitivity training should include a basic under- judgment. LGBT individuals are more likely to standing of the most commonly encountered con- have had traumatic past experiences with doctors cerns in the area of LGBT health [1 , 3 , 8 ]. Such and healthcare providers causing anxiety or mis- topics include the impact of discrimination and trust [1 , 6 ]. The provider’s reaction as surprise or violence, the prevalence of depression and men- discomfort when learning a patient is LGBT will tal health issues, substance abuse, and safer sex likely alienate these patients and result in lower practices. The topics addressed should be tailored quality or inappropriate care [2 ]. Therefore, it is to the needs of each individual healthcare prac- particularly important to develop rapport and tice to best suit the needs of its population. trust, which may take longer and require additional sensitivity from the provider [1 ]. To Potential Obstacles achieve this goal, advanced thought and prepara- One of the keys to staff training is that individuals tion is helpful. must able to identify and overcome any personal During the interview it is best to ask open- discriminatory beliefs about LGBT people. Some ended questions and avoid making assumptions employees may have pre-existing prejudices or [3 , 1 ]. Whenever possible, explain why the ques- negative feelings about LGBT patients due to tions you are asking are necessary. In addition to 60 C.A. Sheedy

LGBT status, the provider must also be aware of tion or provider should create a reporting system additional barriers caused by differences in socio- where patients or employees can voice their con- economic status, culture, race/ethnicity, religion, cerns or suggestions for improvement, either as age, physical ability, and geography [1 , 7 ]. Do not an online or via paper system [ 5 ]. The patient make assumptions about literacy, language capac- should have the option to submit a report anony- ity, and comfort with direct communication. mously if desired. However, if the patient pro- Becoming skilled in the area of taking a medical vides his or her contact information this will history takes awareness and constant reﬁ nement. allow an administrator to contact to the patient to Here we offer only a brief overview, but this topic provide feedback on how the complaint or con- will be addressed in greater detail in Chap. 6 . cern was addressed and the process improved. It is good practice to have one individual in the workplace serve as a point of contact for evaluat- Reporting Discrimination ing and responding to patient co mplaints.

The ultimate goal is to eliminate discrimination from the healthcare system, not just for the LGBT Patient Satisfaction Surveys population but for all individuals. However, when discrimination or disrespectful behavior does occur Routine requests for feedback can be i mple- there must be an organized process for both patients mented via survey. A conﬁ dential or anony- and staff to report an event, and it must be accessi- mous patient satisfaction survey is a great ble and easy to utilize [ 3 , 7 ]. The organization is method to assess how patients are served by then tasked with completing a thorough and timely your practice. The survey content should evaluation of such instances of discrimination or address the patient’s overall experience with disrespectful behavior. The goal is to address and services, which services were used, if all their prevent recurrence of such situations, through addi- needs are being met, and additional suggestions tional staff training or changes in policy. for improvement [ 3 ]. Surveys can be conducted by mail, phone, or in person.

Request Feedback for Improvement

After implementing new changes to better serve the Helpful Hint LGBT population, healthcare providers should then Request feedback from LGBT patients engage patients to discuss whether the changes, avail- about staff responsiveness and whether able services, and programs are meeting the needs of their needs are being addressed in your LGBT patients [ 3, 7]. Being ﬂ exible and making practice. adjustments is critical since the needs and demographics of patients, families, and the LGBT community is continually changing. By actively engaging members of the LGBT community, the healthcare Additional Considerations: Ways provider will be better situated to understand and to Promote and Connect respond to experiences and healthcare needs. One way to let patients know that your practice is LGBT friendly before they even walk in the door Addressing Patient Concerns is to conduct patient outreach and marketing in LGBT venues, websites, and media. There are Every healthcare organization should have a many organizations on both the national and method for patients and employees to ﬁ le and local level that are involved in connecting LGBT resolve concerns and complaints. Each organiza- members to healthcare services. 5 Clinic and Intake Forms 61

The Referral Network can help improve the health of the community by reaching people outside of traditional healthcare As a starting point, consider listing your practice settings [4 ]. Topics can include any of the health- in a provider referral program. For example, the care topics discussed in this text, such as: non-proﬁ t organization GLMA: Health • Support for the psy chosocial and mental Professionals Advancing LGBT Equality main- health needs of LGBT youth. tains a national provider directory of culturally- • Aging and end of life concerns of LGBT competent physicians, therapists, nurses, dentists, seniors. and other providers ( www.glma.org ) [ 1 ]. This • Programs for transgender patients, such as on online directory allows patients to search by loca- the process of transition. tion for providers that are self-identiﬁ ed as serv- • Education and counseling on HIV/AIDS. ing members of the LGBT community. This • Presentation from well-known LGBT com- service is free to join. Within your local organiza- munity members offering personal thoughts tion, advertise your LGBT-focused services and on healthcare issues. make them publicly available on any electronic/ online materials.

Evaluating Success: The Healthcare Community Outreach: Organizations Equality Index and Media Consider participating in the Healthcare Equality The role of LGBT community as a source of sup- Index (HEI) [5 ]. The HEI, organized by the port cannot be understated for most LGBT indi- Human Rights Campaign, was established as a viduals. A history of social stigma and resource for healthcare organizations that desire discrimination has strengthened the sense of to provide exceptional care to LGBT individuals cohesiveness within the LGBT community. ( www.hrc.org). The HEI is an online survey that Similarly, the link between this community and allows healthcare organizations to assess their the HIV/AIDS epidemic means that healthcare policies and practices with respect to LGBT already holds a prominent role without this group patient-centered care as outlined by The Joint [8 ]. This has created a culture where individuals Commission requirements [3 ]. In addition, it pro- may feel more accepted and have more support vides additional support to such healthcare from their community than from their family of facilities through supplemental training and origin or religious affi liation. resources. Finally, it also allows organizations to Most cities offer local organizations for the receive public recognition for their commitment LGBT community. Finding a local community to equality and LGBT health. center would be a great place to advertise or meet members of the community [3 ]. To fi nd a local LGBT community center near to your hospital or Resources practice, try searching at the following address: http://www.lgbtcenters.org. Similarly, advertise- Brochures ment in local media such as a newspaper or magazine would also be a great way to start connecting American Cancer Society with the LGBT environment [2 ]. • Cancer Facts for Gay and Bisexual Me n For those providers really wanting to engage the • Cancer Facts for Lesbians and Bisexual LGBT community, offering educational outreach Women programs is ideal [3 ]. An educational series could • Tobacco and the LGBT community be arranged at one of the local community centers. Free brochures and be ordered by phone: The additional benefi t of such programs is that they 800-ACS-2345. 62 C.A. Sheedy

They can also be viewed online: GLMA : Health Professionals Advancing http://www.cancer.org/healthy/ﬁ ndcancerearly/ LGBT Equality —Association of lesbian, gay, menshealth/cancer-facts-for-gay-and-bisexual- bisexual and transgender healthcare profes- men sionals working towards LGBT healthcare http://www.cancer.org/healthy/findcancerearly/ equality. Maintains a national LGBT provider womenshealth/cancer-facts-for-lesbians-and- directory. bisexual-women www.glma.org

American College Health Association Human Rights Campaign —Healthcare Equality Index (HEI); an online survey for healthcare orga- • Man to Man: Tips for Healthy Living for Men nizations to assess their policies and practices with Who Have Sex with Men respect to LGBT patient- centered care. • Women to Women: Tips for Healthy Living www.hrc.org for Women Who Have Sex with Women These can be located at http://www.acha.org/ Lambda Legal —Nonprofi t legal organization Topics/lgbtq.cfm pursuing full recognition of the civil rights of lesbians, gay men, bisexuals, transgender people Centers for Disease Control and those with HIV. and Prevention http://www.lambdalegal.org/ Fact sheets can be found by searching the Centers for Disease Control and Prevention ( CDC ) web- The Joint Commission —Health care accredita- site at http://www.cdc.gov tion and certifi cation organization, including standards for patient-centered care and specifi c Safe Schools Coalition considerations for the LGBT community. Provides online links and ordering information http://www.jointcommission.org for brochures from many different LGBT-friendly organizations. The Penn Program for LGBT Health http://www.safeschoolscoalition.org/RG- brochures. http://www.pennmedicine.org/lgbt/ html Vanderbilt Program for LGBTI Health https://medschool.vanderbilt.edu/LGBTI Helpful Internet Resources

Center Link —LGBT community center directory. References http://www.lgbtcenters.org 1. GLMA: Health professionals advancing LGBT equality. Centers for Disease Control and Prevention Guidelines for care of lesbian, gay, bisexual, and transgen- ( CDC ) —General information is available on der patients. 2006. http://www.glma.org/_data/n_0001/ many topics speciﬁ c to the LGBT population resources/live/Welcoming%20Environment.pdf . 2. Wilkerson JM, Rybicki S, Barber C. Results of a quali- including mental health, cancer screening, sub- tative assessment of LGBT inclusive healthcare in the stance abuse, HIV, STIs, and also recommenda- twin cities. Minneapolis, MN: Rainbow Health tions for preventative health. Initiative; 2009. http://www.cdc.gov 3. The Joint Commission: advancing effective communication, cultural competence, and patient- and family- centered care for the lesbian, gay, bisexual, Gay, lesbian, Bisexual, and Transgender Health and transgender (LGBT) community: a ﬁ eld guide. Access Project—Community based program offer- Oak Brook, IL; October 2011. LGBTFieldGuide.pdf. ing training and materials to help providers learn 4. Gay and Lesbian Medical Association: healthy people 2010: companion document of lesbian, gay, bisexual, about the health needs of LGBT populations. and transgender (LGBT) health. April 2011. http:// www.glbthealth.org 5 Clinic and Intake Forms 63

www.glma.org/_data/n_0001/resources/live/ 7. Kaiser Permanente. Provider’s handbook on cultur- HealthyCompanionDoc3.pdf . ally competent care: LGBT population. 2004. http:// 5. Snowdon S. Recommendations for enhancing the cli- kphci.org/downloads/KP.PHandbook.LGBT.2nd. mate for LGBT students and employees in health pro- 2004.pdf . fessional schools: a GLMA white paper. Washington, 8. Dean L, Meyer IH, Robinson K, et al. Lesbian, gay, DC: GLMA; 2013. bisexual, and transgender health: ﬁ ndings and con- 6. Feldman J, Bockting W. Transgender health. Minn cerns. J Gay Lesbian Med Assoc. 2000;4(3): Med. 2003;86(7):25–32. 101–51. Medical History 6 Carl G. Streed Jr.

of patients with diverse sexual orientations, Purpose gender identities, and sex and gender histories (PC3 , PC4 , PC5 , PC6 ) . The purpose of this chapter is to provide guidance on completing a thorough, competent, and culturally appropriate health history with details (Re)Building the Therapeutic specifi c to the care of LGBT individuals and Relationship communities. To provide complete and appropriate care for patients requires an open dialogue built on trust. Learning Objectives However, health care providers have an uphill climb to creating such a trusting relationship with • Identify at least three ways that the medical their LGBT patients. A 2010 report by Lambda history can create and foster the patient–pro- Legal1 and a 2011 report by the National Center vider relationship with LGBT patients ( PC1 , for Transgender Equality2 outline where the health PBLI1 , ICS2 ) care professions have failed to maintain the trust • Discuss ways that language can be used in the and confi dence of those it is meant to treat [ 1 , 2 ]. medical history to avoid assumptions about a Appropriately titled “When Health Care Isn’t patient’s sexual orientation, gender identity, or Caring” and “Injustice at Every Turn,” respectively, relationship to other individuals ( KP1 , ICS1 , the surveys highlight the discrimination LGBT3 ICS2 ). • Identify at least fi ve strategies to engage in an open dialogue with patients to address 1 Lambda Legal (Lambda Legal Defense and Education sensitive issues in the medical history (ICS1 , Fund) is an American civil rights organization that focuses Pr1 , PC1 ) on lesbian, gay, bisexual, and transgender(LGBT) com- • Identify at least three opportunities to adapt munities as well as people living with HIV/AIDS (PWAs) through impact, societal education, and public policy health messages and counseling efforts to work. address high-risk behaviors to meet the needs 2 The National Center for Transgender Equality (NCTE) is a social justice organization dedicated to advancing C. G. Streed Jr. , M.D. (*) the equality of transgender people through advocacy, School of Medicine , Johns Hopkins Bayview collaboration and empowerment. Medical Center , Baltimore , MD , USA 3 Patients affected by differences in sex development were e-mail: [email protected] not explicitly included in this survey.

© Springer International Publishing Switzerland 2016 65 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_6 66 C.G. Streed Jr. patients have experienced from the health care between LGBT and gender non-conforming establishment: patients and the health professions. • Nearly 8 % of LGB individuals, over 25 % of It is beyond the scope of this chapter to transgender and gender-nonconforming indi- provide strategies to connect patients with the viduals, and 19 % of people living with HIV health care system. However, successful and pos- reported that they had been denied needed itive interactions between LGBT patients and health care outright. health care providers in which providers have • Approximately 50 % of transgender respon- awareness of and demonstrated commitment to dents reported having to teach their health the needs of LGBT patients will attract new and care providers about transgender care. loyal patients, reduce their risk of complaints and • Over 10 % of LGB individuals and over 20 % negative publicity, and achieve higher patient sat- of transgender and gender-nonconforming isfaction scores while improving the health out- respondents reported being subjected to harsh comes [5 – 7 ]; such LGBT competent care is in or abusive language from a health care alignment with Centers for Medicare & Medicaid professional. Services and The Joint Commission Requirements • Approximately 11 % of LGBT individuals [ 8 ]. Chapter 5 of this text addresses the impor- and almost 36 % of people living with HIV tance of the pre-encounter experience and pro- reported that health professionals refused to vide guidance for how to create welcoming touch them or used excessive precautions. reception areas, train staff to be LGBT friendly • More than 12 % of LGB individuals, over 20 % and competent, and provide examples of intake of transgender and gender- nonconforming forms that are LGBT inclusive [9 – 11 ]. individuals, and over 25 % of people living with HIV reported being blamed for their health status. Interviewing Techniques; One Size • Almost 8 % of transgender and gender- Does Not Fit All (Table 6.1) nonconforming individuals reported experiencing physically rough or abusive treatment Assuming the clinic s taff and intake process are from a health care professional. culturally competent and appropriately matched to the patient, it then falls to the health care pro- Not surprisingly, LGBT individuals report a vider to ensure adequate and complete care for high degree of anticipation and belief that they the LGBT patient. For any of their patients, will face discrimination when seeking health health care providers should be aware of how care, and such concerns are a barrier to seeking personal bias can affect the patient–provider rela- care. Overall, 9 % of LGB individuals are con- tionship. Heterosexist attitudes and homophobic cerned about being refused health services when beliefs inculcated by the majority culture inﬂ u- they need them and 20 % of people living with ence interactions between patients and providers HIV and over half of transgender and gender- from either’s perspective; heterosexist bias nonconforming respondents share this same con- affects how providers communicate and internal- cern [1 , 2 ]. As LGBT individuals are less likely ized homophobia may prevent patients from to seek health care, there are fewer opportunities disclosing their sexual orientation and/or gender to offer care, conduct screenings, provide educa- identity in even the most welcoming of clinics. tion, and other health promotions [3 ]. In addition Though it may seem unnecessary to mention, to effectively scaring LGBT patients away from greeting the patient and whomever may be seeking health care, nearly two-thirds of trans- accompanying them sets the tone for the entire gender patients who have been refused care on clinical encounter. First, the gender identity or the basis of their transgender identity report a sexual orientation of the patient should never be lifetime suicide attempt [4 ]. There is obviously assumed based on name or outward appearances signiﬁ cant room for improving the relationship or even name in the medical chart; transgender 6 Medical History 67

Table 6.1 Interviewing techniques Use preferred name This should be addressed on intake and noted in all future visits Do not assume gender Do not refer to the patient as “Mr. Smith” or “Ms. Smith” Use the patient’s preferred full name or preferred ﬁ rst name Be aware of pronouns If the patient notes that they are not single, do not assume the gender of their signiﬁ cant other Avoid “girlfriend,” “boyfriend,” “wife,” and “husband” unless the patient uses these terms Do not make assumptions Do not say, “and is this your sister [brother/mother/father]?” about relationships Say, “and who has joined you today?” and allow the companion to identify themselves and their relationship to the patient

patients may still be in the process of aligning effi ciently direct the visit and ensure the explicit their legal name with their gender identity. It is needs of the patient are addressed. As always, therefore important that until the patient’s pre- open-ended questioning is paramount and allow- ferred gender pronoun or preferred name is ing adequate time for patients to answer ques- known, they should be addressed by their pre- tions will foster a more trusting relationship; ferred full name, not as “Mr. Smith” or “Ms. interrupting a patient, especially one who may Smith.” Secondly, never presume to know the have experienced dismissive behavior from a relationship of anyone accompanying the patient; health care provider in the past, will damage a too often are signifi cant others mistaken for budding patient–provider relationship . Table 6.2 “brother” “sister” or “friend.” Making an assump- shows a sample fl ow of questions you might con- tion, no matter how benign and unintentional, can sider using when interviewing patients. signal to the patient that the health care provider After expertly eliciting the patient’s chief con- is at best not trained to manage LGBT patients cern and elaborating on the history of present ill- and at worst intolerant or hostile. If the provider ness, it is important to collect a thorough history, unintentionally makes an assumption, providing especially with fi rst-time patients; this will build an immediate apology often corrects the faux pas rapport and lay the groundwork for a productive and can allow the provider and the patient to set patient–provider relationship for future visits. As the encounter on the right path. is already explained in other texts and during the After greetings, introductions, and establish- typical health care provider training, it is impor- ing rapport, the clinical encounter can transition tant to collect data regarding the past medical and to eliciting the chief concern of the patient. surgical history, mental health history, current Providing undivided attention and exhibiting medications, allergies, family medical history, interest with non-verbal cues will signal engage- and social history including data about education, ment, and maintaining an appropriate level of eye employment, family structure, substance use/ contact will allow the patient to feel more wel- abuse, sexual history, and other items a s may be come; too often have LGBT patients been dis- relevant to patient care and/or building rapport. missed by providers who looked at the patient with a degree of disgust or judgment or never looked them in the eye . Past Medical and Surgical History

Though LGBT patients have many of the same Completing a Thorough health concerns as the general population, there and Competent History are particular issues of medical and surgical health that are distinct and should be considered As with any clinical encounter for the seasoned when collecting the past medical and surgical health care provider, determining the patient’s history. Here, we will speciﬁ cally make mention agenda will allow both provider and patient to of issues related to cardiovascular disease, cancer, 68 C.G. Streed Jr.

Table 6.2 Completing a thorough and competent history

STEP 1: PUT PATIENT AT EASE “I am going to ask you a few questions about your sexual health and sexual practices. I understand that these questions are very personal, but they are important for your overall health.” “Just so you know, I ask these questions to all of my adult patients, regardless of age, gender, or marital status. These questions are as important as the questions about other areas of your physical and mental health. Like the rest of our visits, this information is kept in strict confidence. Do you have any questions before we get started?”

PART 2: PARTNERS Are you currently sexually active?

NO YES Have you ever been sexually active?

NO YES

How many sexual partners have you had in the past 6 months?

When you have sex, do you do so with men, women, or both?

If both, how many male/female sexual partners have you had in the past 6 months?

Has anyone ever forced themselves on you sexually, or touched sexually you in an unwanted way?

PART 3: IDENTITY

Are you attracted to men, women, or both?

How do you identify your sexual orientation?

Are there any concerns you would like to discuss related to your sexuality, sexual orientation, or gender?

PART 4: PRACTICES / PROTECTION

When having sex, do you have vaginal, anal, and/or oral sex?

Do you use condoms/latex dams when having vaginal, anal, and/or oral sex? How often?

NO or YES, SOMETIMES YES, ALWAYS

Do you and your partner(s) use any other protection against STI’s?

NO, or YES, SOMETIMES YES, ALWAYS

Could you tell me the reason why not? What kind of protection do you use? How often?

For MSM, assess: For WSW, assess: - history and vaccination against Hep A and B - use, frequency, sharing, and cleaning of sex toys - history and results of anal pap smear - frequency and protection with digital/vaginal sex - use of alcohol/drugs during sex - history of sex with men

(continued) 6 Medical History 69

Table 6.2 (continued)

PART 5: PAST HISTORY OF STIS

Have you ever been diagnosed with an STI?

NO YES When were you diagnosed?

How were you treated?

Have you ever been tested for HIV or other STIs?

Would you like to be tested?

Has your current or any former partners ever been diagnosed or treated for an STI?

NO YES

Were you tested for the same STI?

PART 6: PREGNANCY PREVENTION

Are you currently trying to conceive / father a child?

NO YES

Are you concerned about getting pregnant or getting your partner pregnant?

NO YES

Are you using contraception or practicing any form of birth control?

Do you need any information on birth control?

PART 7: SEXUAL FUNCTION

Do you have any concerns about sexual function?

Do you have pain with intercourse? Problems with erection, ejaculation, or orgasm?

PART 8: COMPLETING HISTORY

“What other concerns or questions regarding your sexual health or sexual practices would you like to discuss?”

Thank the patient for being open and honest and praise any protective practices.

Express concern regarding high-risk practices, if necessary.

Risk Reduction for MSM: Risk Reduction for WSW: - consistent use of condoms with oral/anal sex - latex barriers minimize transfer of bodily fluids - avoid excessive substance use - lubricants to reduce tearing, abrasions - counseling on HIV post-exposure prophylaxis - clean sex toys with 1/10th bleach/water solution 70 C.G. Streed Jr.

Table 6.3 Cardiovascular risk factors in LGBT Table 6.4 Risk factors associated with breast cancer populations Tobacco use Tobacco use Alcohol abuse Alcohol abuse Obesity Diabetes Nulliparity Hypertension Hyperlipidemia Obesity Cancer (Table 6.4 ) Sedentary lifestyle LGBT patients have multiple risk factors that Testosterone replacement/therapy potentially place them at higher risk of having Bilateral oophorectomy cancer at some point in their life time. There has Anti-retroviral therapy been a long standing debate as to the possible increased risk for breast cancer among lesbian obesity, and surgical interventions as they are women as compared to heterosexual women, but pertinent to the medical history, while Chap. 8 the data remains limiting. While the relative risk will discuss screening and preventive health for breast cancer is still being determined, there related to these concerns. is enough evidence to suggest that lesbian women have a higher prevalence of risk factors associ- Cardiovascular Disease (Table 6.3 ) ated with breast cancer, including nulliparity, There continues to be a signiﬁ cant burden of alcohol use/abuse, tobacco use/abuse, and obesity cardiovascular disease within the general pop- [ 18 – 20]. This limited data stresses the impor- ulation, but limited research has demonstrated tance of asking about these risk factors as well as that patients infected with HIV, lesbian women, sexual orientation when collecting the social and transgender patients taking masculinizing history during the patient interview. hormones are at increased risk. One prospec- Similar to risk for cervical cancer, HPV infec- tive observational study of male and female tion in men who practice receptive anal inter- participants noted a possible association course has long been known to cause anal cancer between antiretroviral treatment and cardio- [ 21 – 23 ]. There is research to suggest that a vascular events such as myocardial infarction majority, as high as three-quarters, of men who [12 ]. A review of cardiovascular health within have sex with men are positive for HPV [24 – 26 ]. the Los Angeles County Health Survey demon- Unlike cervical cancer prevalence, which peaks strated a higher rate of heart disease diagnosis during the third decade of life in women, anal among lesbian women as compared to hetero- HPV infection is steady throughout the life of sexual women; bisexual women also had an men who have sex with men [ 26 ]. This data elevated risk of heart disease compared to het- highlights the need for anal cancer screening, erosexual women [13 ]. For transgender men, which can be performed with cytology [ 25 ]; research suggests increased risks following guidelines for routine screening and testing do bilateral oophorectomy [14 , 15] and, several not exist but study recommendations suggest studies have found that transgender patients screening HIV- negative men every 2–3 years and receiving hormone treatment had positive and HIV-positive men annually [27 , 28]. As men who negative changes in certain risk factors for car- have sex with men are at higher risk for infection diovascular disease [16 ]. However, the quality with HPV types 6, 11, 16, and 18 and associated of the data has limited meta-analyses attempt- conditions, including genital warts and anal can- ing to draw more robust conclusions from the cer, the US Advisory Committee on Immunization data [17 ]. Practices (ACIP) recommends routine vaccina- It is therefore important to consider these tion against HPV with the quadrivalent vaccine issues when collecting information from your (HPV4) and vaccination for patients through the patients. age of 26 years who have not been vaccinated 6 Medical History 71

Table 6.5 Patients who should be vaccinated against bisexual women are more likely to be overweight HPV or obese when compared to heterosexual women Patients ≤26 years of age regardless of GI/SO [ 41– 43 ]. Causation for this association remains unclear, but theories include minority stress, family rejection, and a rejection of societal stan- previously or who have not completed the three- dards of beauty [ 44 ]. dose series [ 29]; regardless of gender identity There is also evidence that obese individuals and/or sexual orientation, vaccination against may have worse HIV outcomes [45 , 46 ]. Research HPV should be offered to patients 9–26 years of has found that obese versus normal weight age (Table 6.5 ). patients (based on BMI < 25 kg/m 2 ) had smaller Unfortunately, data is limited on cancer increases in CD4 counts after initiating HAART; among the transgender population. Case-reports lower CD4 counts may now be another adverse do make note of breast cancer among transgender consequence of obesity. women receiving feminizing hormones [30 – 32 ] By recognizing obesity as a disease to be and transgender men receiving masculinizing addressed during a patient visit, it is possible to hormones and undergone chest surgery [33 , 34 ], reduce the risk of developing chronic diseases ovarian cancer in transgender men on testoster- associated with being overweight or obese, includ- one [ 35 , 36 ], prostate cancer among transgender ing cardiovascular disease, diabetes mellitus women receiving feminizing hormones [37 , 38 ], type II, colon cancer, and sleep disorders. and prolactinomas in transgender women receiving estrogen replacement therapy [ 39 ].4 These Surgical Interventions reports stresses the importance of collecting The anatomy of the patient presenting to the information on prior medical and surgical treat- clinic can direct the interview and infl uence the ments to more fully assess potential risks experi- eventual physical exam and guide risk-reduction enced by transgender patients. screening (see Chap. 8). For those reasons, it is It is worth stressing that the Surveillance important to enquire, when appropriate, about Epidemiology and End Results database of the any prior surgeries, from mundane fractures to National Cancer Institute, the most comprehen- gender-affi rming procedures such as colpectomy, sive source of cancer statistics in the US, does not vaginoplasty, phalloplasty, mastectomy, and include sexual orientation or gender identity in other procedures to feminize or masculinize a the demographics data; this is another missed patient. The interview should always be non- opportunity to estimate the incidence and preva- judgmental and the provider should aim to edu- lence of cancer in the LGBT population. cate the patient as to the need for such information to be gathered. Obesity For transgender patients who have undergone The American Medical Association (AMA) gender-affi rming procedures, there are specifi c offi cially recognizes obesity as a disease entity issues primary care providers and gynecologists that should be addressed as such [ 40]. There is should understand. According to WPATH, male- an obesity endemic in the US and the Western to-female patients who have had vaginoplasty world that does not leave LGBT populations should be counseled on the need for vaginal dila- unaffected. The most research available relates tion or penetrative intercourse to maintain vagi- to obesity in lesbian women and bisexual nal depth and width [47 ]. Further, due to the women, demonstrating that lesbian women and surgical shortening of the urethra, male-to-female patients experience urinary tract infections more frequently, and may suffer from function disor- 4 Causality should not be inferred from these case reports ders as a result of damage to the autonomic nerve and there is a signifi cant need to perform studies that determine prevalence of these conditions and risk/protection supply of the bladder fl oor during surgery [48 , 49 ]. associated with these therapies. As most female-to-male patients do not undergo 72 C.G. Streed Jr. colpectomy, preventive care must be tailored to remedies is a standard part of care. However, it is anatomy and not gender. Similarly, patients important to ask specifi cally about medications, receiving masculinizing hormones can experi- hormones, and injectables (e.g. silicone) not ence atrophic changes of the vaginal lining which obtained from a health care provider. Transgender can lead to pruritus; such issues require sensitiv- patients may obtain hormone therapies and/or ity on the part of the health care provider as injectables either from other providers, internet patients with a male gender identity and mascu- pharmacies, or street vendors. Understanding the line gender expression may experience emotional substances patients have used will guide pre- discomfort or pain regarding their female geni- scription practices and recommendations. tals [50 ]. It is worth noting that despite surgical Some transgender patients may already have complications, patients rarely regret having been using hormones; they may have had them undergone gender affi rming procedures; the best prescribed by a physician (and may be seeking a predictor of overall outcomes of gender affi rming new physician for whatever reason), or they may procedures is the quality of surgical results [51 ]. have obtained hormones through overseas, “street,” For a more complete discussion of hormone or internet sources, without any prior physician treatment and gender affi rming procedures and evaluation [59 , 60 ]. In this latter instance, the complications, please see section “5”, Chaps. WPATH provides recommendations for health care 18 – 21 . providers to continue the medical treatment of patients who have independently initiated hormone therapy, regardless of the patient’s ability or desire Mental Health History to receive recommended gender-related psychiatric/psychological evaluation. Health care providers Research continues to fi nd an increased risk for may provide treatment based upon the principle of depression, anxiety, and suicide/suicidal behav- harm reduction; when patients have demonstrated ior among LGBT patients [ 52 – 56 ]. Much of this their determination to continue using medications is a result of the stigma, or minority stress, expe- without oversight, then it is usually advisable to rienced every day by LGBT individuals in fam- assume their medical care and prescribe appropri- ily, work, school, and social environments; ate hormones. Denying them care will only result explicit discrimination and harassment based on in their continued independent treatment, possibly gender identity and/or sexual orientation have to their detriment. been demonstrated to be factors in stress, anxiety, Electronic medical records are facilitating depression, and mental illness [9 , 57 , 58 ]. more rapid medication reconciliation across As with all patients, the primary care provider regional health systems [61 ]. should screen for mental illness. Depression remains a common affl iction, and providers should ask about persistent depressed mood, Allergies anhedonia, and suicidal ideation, and treat or refer those with clinical depression. Referral for Obtaining information about a patient’s allergic mental illness should be to a mental health pro- and adverse reactions to medications, common vider with an understanding of LGBT care issues. environmental allergens (e.g. pet dander, mold, For further details on mental health in the tobaccos smoke, et cetera), and other allergens LGBT population, please see Chap. 13 . (e.g. components of vaccines and other injectables) is standard of care. Understanding the allergy profi les of patients, particularly transgender Current Medications patients, can alter the selection of hormones and other injectable therapies (e.g. cosmetic fi llers Enquiring about prescription medications , over- such as silicone) [62 ]. Details regarding cosmesis the-counter medications, supplements, and home can be found in Chaps. 15 , 20 , and 21 . 6 Medical History 73

Family Medical History the US are over 60 % more likely to smoke tobacco products as compared to the rest of the To fully understand the potential risk factors of a population [68 ]. Similarly, LGBT individuals are patient, it is necessary to outline or diagram the more likely to consume alcohol and more likely age and health, or age and cause of death, of each to become dependent [42 , 64 , 69 , 70 ]. Not sur- immediate relative including parents, grandpar- prisingly, recreational drugs were used at higher ents, siblings, children, and grandchildren; if rates among LGBT patients [70 – 73 ]. Given the there is a particular pattern either on the mater- unique stressors that factor into substance use nal or paternal side, it is worth enquiring about and abuse, interventions have been tailored spe- aunts and uncles and cousins as well. Collecting cifi cally for lesbian and gay communities [74 ]. the family medical history is standard of care. See the webpage of the National LGBT However, as more governments, local and Tobacco Control Network for a list of smoking national, recognize the rights of same-sex cou- cessation programs, referrals, and research. ples to adopt, it will become increasingly important to educate adoptive parents of the need to Socioeconomic Status: Education, obtain the medical records of their children’s bio- Employment, Income logical parents [63 ]. Socioeconomic factors are becoming recognized as signifi cant determinants of health and health care outcomes. Arguably the more signifi cant Social History factors include education, employment, and income as each factor contributes to a patient’s What has typically been described as the “Social location within society, access to resources, and History” during the clinic encounter includes a ability to overcome adverse situations. A com- range of information such as behavioral risk fac- plete social history will include information tors, environmental and societal factors that about a patient’s level of education, employment affect health, and support systems available to a status, and source(s) of income allowing the patient. The order in and depth to which this health professional to better understand the information is collected can be left to provider resources available to their patient and where preference but here we address Substance Use/ they may need additional support. Abuse , Socioeconomic Status , Support Systems , The level of education, or educational attain- Sexual History , and Violence/Abuse . ment, of a patient can be a fair surrogate of the resources available to a patient as well as their Substance Use/Abuse support systems and possibilities for employ- Enquiring about tobacco use, alcohol consump- ment. Though the world economy no longer can tion, and the use of other illicit substances is guarantee employment for those furthering their standard of care as there is substantial data high- education, it remains that those with high school/ lighting the health risks associated with each. secondary school degrees are generally better off While there is a growing body of research that than those without, those with college/university has focused on substance use among LGB degrees are generally better off than those patients (T to a lesser extent), an even larger body without, and so forth. However, LGBT individ- of research comparing heterosexual and non- uals are less likely to have high school diplomas, heterosexual populations suggests that substance bachelor’s degrees, and advanced degrees use is a problem for LGBT patients [ 10 ]. compared to their heterosexual peers [79 ]. Numerous studies have shown that lesbian Knowing a patient’s educational attainment and women and bisexual women have higher rates of aspirations of such can allow the health provider past and current tobacco use [41 , 64 , 65 ]; the to provide encouragement and possibly offer same has been found to be true of gay and bisex- connections to resources (e.g. GED programs, ual men [65 –67 ]. Overall, LGBT individuals in skills training) [75 ]. 74 C.G. Streed Jr.

Employment often provides many benefi ts Table 6.6 The 6 P’s of a complete sexual health history including a support network, income, and health Partners insurance. As a result, employment status greatly Practices affects patient health outcomes as a result of Protection from STIs access to economic and social resources. However, Past history of STIs it is worth noting that lesbian, gay, bisexual and Prevention of/planning for pregnancy especially transgender patients face signifi cant Pleasure workplace and employment discrimination, making it important to enquire about employment status and appropriate to ask about workplace works age and pass away. Further, as they age stressors as they relate to the visit presentation and require higher levels of care, LGBT individu- [76 – 78 ]. als have, in order to protect themselves, been In addition to gainful employment, it impor- forced to go back into the closet when they enter tant to ask about other sources of income (e.g. rehabilitation, long-term care, or nursing home disability benefi ts, commercial sex work, barter- facilities [83 – 87]. It is therefore important to rec- ing). Understanding the full extent of patients’ ognize the anxiety many LGBT individuals may economic resources can encourage an already have when discussing any therapy plans that prudent health provider to choose wisely to limit involve these services. the burden of health care costs upon the patient as well as be mindful of possible social/institutional Sexual Health History (Table 6.6 ) resources available to the patient [79 , 80 ]. When caring for LGBT patients, it is important to separate identity from behavior. As Chap. 1 Support Systems clearly delineate’s, a patient’s sexual identity The social network of a patient can be the source and/or gender identity cannot be used to assume of signifi cant frustrations as well as support. their sexual behaviors and the disease risks they When thinking of social networks, many imme- may encounter when engaging in sexual behav- diately look to biological family members to be ior. Therefore, taking the time to complete a thor- the most signifi cant sources of support. While ough and non-judgmental sexual health history this may be true for many patients, it is important has the potential to both build the patient–pro- to recognize that due to homophobia, transpho- vider relationship as the provider demonstrates a bia, and intolerance of gender non-conforming willingness to better understand the patient and identities or non-heteronormative social roles, be a powerful risk-reduction method as various many LGBT individuals have been rejected by behaviors are uncovered that could lead to preg- their families [81 ]. Consequently, recognizing nancy, sexually transmitted illnesses, or trauma that a patient may not be closely connected to while pursuing sexual satisfaction and intimacy. their family of birth can provide opportunities to While there are many entrées to the sexual enquire about other social networks (e.g. friends, health history, it is paramount to remain non- work colleagues, et cetera) who serve as surro- judgmental when opening the topic and explor- gate family or family of choice. ing a patient’s history. Establishing the purpose It is important to determine the support systems of this line of inquiry will go far in building rap- available to a patient in order to recommend the port with the patient and making them, and the best therapies and treatment options available; provider, comfortable in discussing sensitive research has demonstrated that patients with information. robust support systems have better healthcare The CDC provides some of the more concise outcomes [82 ]. This could not be truer than when recommendations for completing the sexual it comes to elder care. Due to the high prevalence health history and focuses on 5Ps: partners, of rejection by family, many elder LGBT patients practices, protection from STIs, past history of fi nd themselves isolated as their other social net- STIs, and prevention of/planning for pregnancy. 6 Medical History 75

It is important to add a 6th P, Pleasure, to have a complete sexual health history. These are just Helpful Hint guidelines, and the interview should be tailored If a patient has been sexually active in the to each patient’s specifi c presentation and needs. past, but is not currently active, it is still However, these are a good starting point to the important to take a sexual history as this sexual health history. may be an opportunity to explore the reasons why they are no longer sexually active (e.g. prior trauma, fear of transmitting or Helpful Hint receiving STIs, et cetera). An asexual individual is someone who does not experience sexual attraction, and, unlike celibacy, which people choose, asexuality is an intrinsic part of who asex- 2. Practices ual individuals are; just as it is important to If a patient has had more than one sex understand the sexuality of some individu- partner in the past 12 months or has had sex als as an intrinsic quality, it is important to with a partner who has other sex partners, recognize asexuality is an intrinsic quality you may want to explore further his or her for others. And just as sexually active indi- sexual practices and methods of protection viduals have emotional needs, so do asex- (e.g. condoms, barriers, PrEP). This is where ual individuals; a person who is asexual it is critically important to enquire about may experience attraction to others, but behavior and to not make any assumptions they don’t feel they need to act that attrac- based on identity. Asking about other sex tion out sexually. practices will guide the assessment of patient risk, risk-reduction strategies, the determination of necessary testing, and the identifi - cation of anatomical sites from which to 1. Partners collect specimens for STI testing. Put To begin to assess the risk of contracting an bluntly, interview questions should aim to STI, it is important to determine the number answer who is putting what, where, when, and gender of the patient’s sex partners. As a and how. recurring theme through this text, never make 3. Protection from STIs assumptions about the patient’s sexual orien- It is necessary to determine the appropriate tation. If only one sex partner is reported over level of risk-reduction counseling for each the last 12 months, be certain to inquire about patient; risk-reduction counseling for a patient the length of the relationship. Also, ask about in a monogamous relationship will be differ- the partner’s risk factors, such as current or ent from a patient who is a commercial sex past sex partners or drug use; it is not uncom- worker or in an open-relationship. And even if mon for the patient to not know their sexual a patient is in a monogamous relationship for partner’s risks, but remains important to ask over 12 months, it is still worth providing test- as this can direct prevention and treatment. If ing services if the patient is interested. more than one sex partner is reported in the However, in other situations, you may need to last 12 months, again be certain to explore for explore the subjects of abstinence, monog- more specifi c risk factors, such as condom amy, condom use, the patient’s perception of use/non-use, prophylaxis (e.g. PrEP), and their own risk and their partner’s risk, and the partner risk factors. issue of testing for STIs. 76 C.G. Streed Jr.

4. Past history of STIs with praise, it is appropriate to specifi cally A history of prior STIs can increase a address concerns regarding high-risk practices. patient’s current risk for an STI. Therefore, it Expressing concern may help the patient accept a is essential to ask about prior diagnoses, when counseling referral, if one is recommended . they occurred, how often, and courses of treatment. Violence/Abuse 5. Prevention of/planning for pregnancy As with other areas of LGBT health, there is not At this point in the interview, it should be much data on intimate partner violence. The possible to determine whether or not the CDC has recently begun to address this informa- patient is at risk of becoming pregnant or of tion gap with the National Intimate Partner and fathering a child. If so, fi rst determine if a Sexual Violence Survey Overview of 2010 pregnancy is desired. If not, then provide Findings on Victimization by Sexual Orientation counseling on contraception methods for both [90 ]. The report indicates that individuals who the patient and their partner(s). self-identify as LGB have an equal or higher prevalence of experiencing intimate partner violence, sexual violence, and stalking as compared Helpful Hint to self-identifi ed heterosexuals. Bisexual women If biology allows and the patient is not are disproportionately impacted; they experience planning to not have a child, they are plan- a signifi cantly higher lifetime prevalence of rape, ning to have a child. physical violence, and/or stalking by an intimate partner, and rape and sexual violence other than rape by any abuser, when compared to both les- 6. Pleasure bian and heterosexual women. Though this text is not intended to be an Consequently, it is necessary to screen for exhaustive review of s exual behavior and inti- intimate partner violence in order to provide macy for LGBT individuals, it is important to referrals for individuals affected by abuse to cul- recognize the importance of pleasure in sexual turally appropriate services. Consider initiating intimacy and well-being and the need to the interview with a question such as “Does your include it in a complete sexual health history partner ever hit, kick, hurt, or threaten you?” or [88 , 89 ] . “Do you feel safe at home?” rather than asking if a patient has concerns about domestic violence or abuse. When providing referrals to other professionals, verify with the patient the level of disclo- Helpful Hint sure of sexual orientation and/or gender identity As often occurs, by the end of the inter- that is appropriate. A detailed discussion of intimate view, the patient may have come up with partner violence can be found in Chap. 10 . information or questions that they were not ready to discuss earlier. Allow the patient to circle back to prior topics if they feel Laying the Groundwork for Future comfortable doing so. Encounters

Given the extensive history of discrimination and At this point, thank the patient for being open abuse by the health care community, ensuring a and honest as it is often diffi cult to discuss such positive health care encounter will begin to address culturally/socially sensitive information. Further, the health disparities experienced by the LGBT offer praise for any protective practices including community. To that end, it is also important to be those that offer a reduction of risk if not elimina- open to feedback from LGBT patients; often they tion of risk. After reinforcing positive behavior are in a position to educate their providers and 6 Medical History 77 have had to do so in the past. Aside from offering transgender (LGBT) community: a fi eld guide. Oak a positive health care encounter, public advertising Brook, IL. Oct. 2011. Available at: http://www. jointcommission.org/assets/1/18/LGBTFieldGuide.pdf . and community engagement will provide a posi- 9. GLMA. 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Edward J. Callahan , Catherine A. Henderson , Hendry Ton , and Scott MacDonald

Learning Objectives Introduction

• Describe the role of electronic health records Electronic health records (EHRs) can provide an in providing care for LGBT patients (ICS3 , invaluable benefi t to the provision of modern IPC1 ). medical care. In order to ensure EHRs best • Discuss the importance of confi dentiality for accommodate lesbian, gay, bisexual, transgender, LGBT patients (ICS2 , Pr2 ) (LGBT) patients, often there must be a change in • Identify at least two strategies for effec- institutional culture. To date, a handful of medi- tively documenting sexual orientation and cal centers have implemented fully inclusive gender identity in electronic health records EHR workfl ows. In this chapter, we will fi rst (ICS3 , Pr2 ) address who must be invited into the challenge of changing institutional culture, describe the use of key informant interviews for inviting institutional leaders to become allies, and the determination of educational needs not only for providers but for all levels of personnel in the institution. We E. J. Callahan , Ph.D. (*) University of California, Davis School of Medicine , will further describe the process of developing Sherman Building, Suite 3900, 2300 Stockton Blvd , support for all LGBT learners, staff, and faculty, Sacramento , CA 95817 , USA while working to make it safe for LGBT patients e-mail: [email protected] to self-identity in clinical care. We will describe C. A. Henderson , B.A. our process for caring for the sexual minority University of California, Davis , Davis , CA, USA patient by identifying non-heterosexual and non- e-mail: [email protected] cis gender patients through discussion or demo- H. Ton , M.D. graphic sexual orientation and gender identity Department of Psychiatry and Behavioral Sciences , University of California, Davis School of Medicine , (SO/GI) questions, and creating additional pro- 2230 Stockton Blvd , Sacramento , CA 95817 , USA tections for those who self-disclose minority SO/ e-mail: [email protected] GI status, while identifying key early targets for S. MacDonald , M.D. improving care of LGBT patients. This chapter Department of Primary Care Network and describes how the University of California, Davis Information Technology , University of California, Health System became the fi rst academic health Davis Health System , 2825 J St #300 , Sacramento , CA 95816 , USA center in the nation to introduce SO/GI in the e-mail: [email protected] EHR [1 ], while keeping a clear eye on the work

© Springer International Publishing Switzerland 2016 81 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_7 82 E.J. Callahan et al. that still remains to ensure improvement of qual- to understand how those stigmas impact health ity of care for LGBT patients. and healthcare delivery, it is critical to acknowl- In our institution, cultural change to enhance edge two related phenomena: unconscious bias quality of care for LGBT patients is becoming [3 , 4 ] and the infl uence of unconscious bias on more widely, if not universally, accepted. Such clinical decision making [5 , 6 ]. cultural change challenges entrenched uncon- Unconscious bias or implicit bias is docu- scious bias, which makes change diffi cult. For mented by the presence of behavioral indices of that reason, it is highly unlikely that an institu- bias despite the individual’s stated belief that tion can push hard for change during a set they hold little or no bias in the area [ 3 ]. To even period of time and fully accomplish it; the more begin to deal with unconscious bias against likely scenario is one of ongoing consciousness LGBT populations on the institutional level, it is raising and skill development in a continuous fi rst necessary that leaders of the institution rec- quality improvement effort. Dealing with all ognize that the IOM report [7 ] identifi es unneces- these concerns is critical if we are to ask our sary and unfair health disparities which in turn patients to share their SO/GI demographics in indicate personal and social ethical obligations to the EHR. reduce those health disparities [8 ].

Creating Institutional Change Catalyzing Change at the University in the Face of Unconscious Bias of California, Davis Heath System (UCDHS) The Institute of Medicine (IOM) acknowledged in 2003 that “Indirect evidence indicates that To begin to prepare UCDHS for the change of bias, stereotyping, prejudice, and clinical uncer- collecting SO/GI in the EHR, we selected several tainty on the part of healthcare providers may be overlapping engagement/communication strate- contributory factors to racial and ethnic health- gies. Examples of different messaging strategies care disparities. Prejudice may stem from con- are presented below to illustrate the array of com- scious bias, while stereotyping and biases may be munication efforts employed: elevator talking conscious or unconscious, even among the well points, key informant interviews, senior leader- intentioned.” This 2002 IOM report “Inequality ship meetings and internal public relations. in Medicine” [2 ] fails to mention health dispari- These efforts were preparatory to roll out of ties associated with sexual orientation or gender extensive provider training which was developed identity, reminding us how recently awareness of concurrently. LGBT health disparities has emerged. The underlying mechanisms for LGBT health disparities Elevator Talking Points The initial announce- are virtually identical to those underlying racial ment of the charge of the Task Force for Inclusion or ethnic minority health disparities: cultural of Sexual Orientation and Gender Identity in the stigma around the minority population resulting Electronic Health Record triggered concerns in development of conscious and unconscious from both clinicians and administrators that they bias, which in turn inﬂ uences the process and were neither trained in how to discuss SO/GI, nor quality of life for the population as well as the comfortable in doing so [2 ]. For the Task Force, quality and process of care. Recognizing cul- this response was a systemic invitation to edu- tural stigma is critically important if we seek to cate members of the healthcare delivery system understand the roots of health disparities and and administration that serious LGBT health dis- redesign and improve quality of clinical care parities exist, that gathering these sensitive demo- delivery. Social stigma accurately predicts which graphic data from patients was feasible, and that groups will experience health disparities. In order systematically gathering SO/GI demographics 7 Utilizing the Electronic Health Record as a Tool for Reducing LGBT Health Disparities… 83

Table 7.1 Elevator talking points on collecting sexual orientation and gender identity demographics in the electronic health record (I) After going unnoticed for many years, staggering health disparities have been identiﬁ ed for people who have non-heterosexual sexual orientation (individuals who are lesbian, gay, and bisexual) or different gender identities (individuals who are transgender). Henceforth we refer to them collectively with the acronym LGBT (II) These health disparities appear to be rooted in multiple interacting factors, including stigma and efforts to avoid that stigma by hiding one’s sexual orientation from others (a) Members of these populations have learned to avoid rejection and mistreatment by hiding their identity and becoming invisible. During encounters with healthcare professionals they often withhold information (e.g., risky same-sex sexual activity) or change aspects of their personal lives (e.g., discuss their same-sex partners as if they were opposite-sex partners) (b) Healthcare professionals and systems that hold negative attitudes or stereotypes regarding sexual minorities provide care that is ineffective, insensitive, discriminatory or even abusive. As a result, many patients who have experienced this kind of treatment or know others who have experienced it postpone seeking medical care, especially for nonurgent conditions (c) Nondisclosure of sexual orientation or gender identity and postponement of care reinforces the perceptions held by some healthcare providers that sexual minorities are too infrequently encountered in clinical practice to be worth learning about or accommodating their unique needs (d) Sexual minority individuals are at increased risk of stigmatization, discrimination and violence throughout their lifespan. These experiences, especially when they occur early in life, lead to the adoption of maladaptive coping behaviors (e.g., smoking, substance misuse, or early engagement in sexual behavior) that reduce stress immediately but which are ultimately associated with increased morbidity and mortality (III) Since the Stonewall riots in 1969, LGBT people in the US and industrialized western countries, but increasingly around the world as well, have rejected hiding their identity as a way to cope, discovering the power of claiming their identities instead (IV) With the onset of the internet and emergence of role models, LGBT children are discovering and announcing or questioning their sexual orientation and gender identity earlier. Nevertheless, discrimination and bullying for being different are still strong and families are not well prepared to support and nurture their children as they come out (a) There is a need to prepare healthcare providers to work with families through these developmental challenges (b) For LGBT children and youth whose families are unsupportive, healthcare providers need skills and attitudes to provide care to children and families that is supportive of both their conﬁ dentiality needs yet supportive of their developmental stage (V) LGBT people who are health providers have also been largely invisible and unaccounted for. Many federal and institutional surveys (for example, the American Association of Medical Colleges) do not yet acknowledge sexual minority identities: there is only very recent AAMC documentation of the existence of LGBT people in medicine as medical students, and not yet as applicants, residents or as faculty. We do not know whether LGBT people are admitted to medical schools at rates commensurate with their credentials, and we are only recently getting a sense of what their experience is like during medical school, while remaining largely unaware of their experience in residency, in practice or on faculty (VI) If we are to reduce health disparities for LGBT populations, we need their healthcare providers to know who they are. We can start that with building these demographics into the electronic health record (EHR) (VII) This also means that medical schools need to teach how sexual orientation and gender identity impact a person’s development and life course, not just to which sexually transmitted infections they are vulnerable

could facilitate improvement of quality of care Key Informant Interviews In order to prepare for for LGBT patients. To work toward this outcome, the rollout of LGBT health disparity information, the Task Force developed Elevator Talking Points we felt it was critical that Health System leader- to use when appropriate to “sell” the need for SO/ ship be systematically educated on the importance GI in the EHR (see Table 7.1 ). of reducing LGBT health disparities and invited 84 E.J. Callahan et al. to participate as allies in the process of changing problems your unit may have experienced in pro- the institutional culture. In order to invite leader- viding care for LGBT patients. We would like to ship to participate in this cultural shift, we began hear about your observations on how we might conducting key informant interviews (Table 7.2 ), best educate our providers and staff. In order to modeled on such interviews conducted to support develop our training as well as possible to meet implementation of the National Culturally and the training needs and interests of your depart- Linguistically Appropriate Services Standards [9 ]. ment, I would like to ask you some questions.” In the key informant interview, we began by pre- Table 7.2 provides the questions we developed senting the rationale for the discussion, “I would for this effort. Members of the Task Force then like to explore the potential of providing training met with over 30 individual leaders to discuss to help our health system provide quality care to these questions and experiences of LGBT patients lesbian, gay, bisexual, transgender, those with in the care of their department. Each interview differences of sex development, and queer or resulted in gathering data from the organizational questioning patients. As a key leader in the leader as well as sharing LGBT patient experi- Health System, we would like to speak to you to ences. After these discussions, each leader was understand what you know about LGBT health invited to consider having a talk presented to disparities, and whether you are aware of any their staff about care for LGBT patients. Virtually

Table 7.2 Key informant interview for SO/GI inclusion in EHR taskforce Introduction Please introduce yourself, thank the participant for spending time to speak with you, and describe the purpose of the interview to the participant Example introduction script: “I would like to explore the potential of providing a training to help our health system provide quality care to patients who are lesbian, gay, bisexual, or transgender. You were identiﬁ ed as an important person to speak with because [please describe reason why participant was chosen]. In order to customize the training as much as possible to the needs and interests of your particular department, I would like to ask you some questions” Interview questions 1. Do you know what LGBT stands for? 2. What is your opinion of the quality of care given to LGBT patients? 3. Please describe what you think your department needs to enhance service to this community? 4. Do you see a role for training in your department in improving LGBT health care? Please elaborate 5. Do you recall past trainings on LGBT issues? What was the quality and how was it received? 6. Have there been times when an LGBT patient has been uncomfortable in the way they or a family member was treated? 7. It has been our experience that some providers are very open and engaged with the topic and others are very resistant. How might the current people in your department respond to an LGBT training? 8. What challenges might we encounter in scheduling and conducting a training of this sort? Do you have thoughts on how we might address these challenges? 9. Are there approaches or strategies that we should include in order to make the training as effective as possible while also conveying respect for the people in your department? 10. Getting more to the nuts and bolts: Do you have suggestions on when and in what forum the training should be held? What types of formats—e.g., discussion, small groups, lectures—would be well received in your department? 11. Before we end, is there anyone else that I should speak with or involve in this effort? 12. Would you support our doing this training in your department? 13. Would you be comfortable in collaborating in this training? 7 Utilizing the Electronic Health Record as a Tool for Reducing LGBT Health Disparities… 85

Fig. 7.1 Three staff show their ID badges with rainbow decals signaling their provision of a safe space for LGBT people. Photo credit: Kevin Ulrich, UC Davis Health System, copyright 2014 UC Regents. Used with permission

all who were interviewed were willing to step was introduced and its progress and plans were forward as collaborators to help make this pro- announced at different points using that medium. cess successful . Announcements of National Coming Out Day and other celebrations of diversity appeared there Senior Leadership Meetings LGBT health issues as well. A recent Insider pictured faculty and were also raised at upper level leadership meet- staff with rainbow stickers placed on their Health ings to further promote systemic awareness. System identifi cation badges, signaling their Initial discussions about the project and its commitment to providing a safe space for LGBT purpose were met primarily with silence, partic- patients, learners and colleagues (Fig. 7.1 ). The ularly among male leaders. Presenting the infor- stickers are worn not just by LGBT faculty and mation in the context of humor helped people staff, but by all who care to signal their support become more comfortable with the issue. For for LGBT people; in fact, the majority of fl ag example, an LGBT staff support group was decal wearers to date are heterosexual and cis formed in May 2011, choosing to name itself gender. As efforts began to generate changes in GLEE (Gay and Lesbian Employees and climate, the Task Force focused on developing Everyone who cares). Talking about GLEE was a and providing education about LGBT health dis- welcome addition. GLEE members joked that parities in preparation for asking SO/GI ques- they could not sing or dance and no one needed to tions in the EHR. fear that they would be subjected to that. Humor helped break the traditional silence around sexual orientation and gender identity, opening the way Using Education to Prepare for increased comfort discussing LGBT health for Culture Change and the need to improve quality of care for LGBT patients. Multiple levels of education are needed to prepare a Health System to seriously commit to Internal Public Relations A strategy was devel- reducing health disparities. Since the IOM report oped early to announce the efforts of the Task [7 ] was published so recently, many people are Force using The Insider , an intranet leadership not aware of the serious nature of the health dis- column that appears whenever an employee logs parities facing LGBT populations. Education is onto a Health System computer. The Task Force necessary for leadership, faculty, staff, medical 86 E.J. Callahan et al. students, as well as other health provider trainees over the terms (See Table 7.3 ). While gender- within the health system. Two types of education queer and pansexual are unusual terms for the are important: factual information on the existence medical community, they are terms that many of LGBT health disparities and consciousness younger patients use to identify themselves [10 ]. raising efforts aimed at overcoming stigma The provider needs to be comfortable exploring associated with minority SO/GI. Signifi cant these and other terms used by patients. With efforts to raise awareness of LGBT health dispari- definitions of populations of diverse sexual ties, and the importance of collecting this informa- orientations and gender identities, it is critical to tion, were implemented over a course of several explore strategies to further educate leadership years. The disparities discussed are equivalent to and clinicians about common health disparities those discussed elsewhere in this book. Central in experienced by LGBT populations. This became the conversations, were concerns about interfacing particularly clear with the 2011 publication of the with patients around these topics. results of a survey of Medical Education Deans in JAMA which revealed that most medical schools had poor to non-existent curricula on Will Patients Accept Being Asked? LGBT health [11 ].

One challenge the Task Force faced was how to best ask the SO/GI questions: Which words ought Patient Survey to be used? How should questions be sequenced? Which populations were critical to capture? After 3 years of atmosphere and curriculum build- While the IOM report [7 ] delineated serious ing, we felt ready to launch the questionnaire in demonstrated health disparities for lesbian, gay the electronic health record in the fourth year. To and bisexual populations, data sources on trans- better inform our planning and decision making, gender health were weaker in terms of sample we sought consultation from LGBT patients as sizes, yet the health problems of trans patients well as heterosexual and cis gender patients about appeared even more profound. Also problematic how they would feel about being asked their SO/ is the virtual absence of systematic data on those GI. This survey effort was done as a quality with differences of sex development (intersex) improvement effort rather than as a research proj- and queer and questioning populations in the ect. Responses of 200 heterosexual and cis gender IOM report [1 ]. This de facto exclusion occurred patients were compared with responses from 100 because data exploring the health of these patients lesbian, gay and bisexual (LGB) patients (no are not robust; while their existence as sub- transgender, queer or intersex patients responded populations is often not clear to researchers, it is to this survey). All participants were adults aged very clear to those with these other identities that 21–68 who received medical care in Northern face a health workforce not skilled in their care. California settings and identifi ed their own SO/GI Health information on these populations is as part of the survey. Fewer than 20 % of LGB unclear because data is not ordinarily gathered patients felt that they should not be asked their on them and their health status as populations SO/GI. Similar percentages of heterosex- remain unknown. ual patients concurred stating, “It is no one’s Providers are also challenged with how to business what our sexual orientation is” and “I understand and value the terms the patient uses to don’t like anything about this idea, I think this is a self-describe their sexual orientation and/or gender private matter” At the other end of the spectrum, identity. To aid our providers in understanding the plurality of patients in both heterosexual and some of these less common terms, we developed LGB groups were positive about this discussion a set of defi nitions for these terms that pop-up taking place. A bisexual person stated: “A per- when a user allows the computer cursor to hover son’s sexual identity is an important part of their 7 Utilizing the Electronic Health Record as a Tool for Reducing LGBT Health Disparities… 87 lifestyle and health; sharing it might be helpful for Asking the Question their health”. A gay man added, “A doctor should in the Electronic Health Record have the most information possible to offer proper care and preventive strategies.” Heterosexuals Institutional support, such as training in cultural concurred, “Your personal doctor should know all awareness and education in LGBT health dispari- about you as a patient, to be able to serve your ties, can improve patient experience. At present, needs as best possible.” Another heterosexual however, few health providers are well versed in patient stated, “Doctors may be more sensitive to discussing issues around sexual orientation, a patient’s feelings and concerns having this while even fewer are prepared to meet the unique information.” Among heterosexual patients, the healthcare needs of transgender patients [ 12 ]. largest group was neutral on the idea. For gay and Until recently, many LGBT people lacked basic lesbian patients, virtually half were positive about access to healthcare. For transgender patients, this information being collected. there has been little awareness of the need for pap Although not scientifi cally determined, there smears and breast exams for trans men or pros- was some indication that people would prefer to tate exams for trans women. The lack of capacity have this information gathered in person by their to track healthcare delivery and outcomes for physician but also found it acceptable to fi ll out a LGBT patients has prevented programmatic form at the physician’s offi ce or online in their efforts to improve quality of care to date. The own time. Very few, either heterosexual or LGB, ability to track health interventions undertaken were supportive of having this information dis- and their results is necessary to improve quality cussed over the phone. of care for all populations. A bisexual individual added depth to the con- That inability to identify and track LGBT patients versation by stating, “Only once the political and can be addressed with the incorporation of SO/GI social environment has become more educated demographics in the EHR. Gathering that infor- and homosexual fears have been lifted, would I mation requires conversations between patients ever admit my sexual orientation.” Both hetero- and providers which in turn requires creating an sexual and LGB patients supported the idea of a environment in which patients feel safe disclos- physician directory in which providers declared ing their SO/GI. Coming “out” to LGBT-welcoming themselves to be LGBT-supportive, although one providers can reduce anxiety and allow for more gay man said that he would distrust such a self- honest, direct conversations about health. Patients description. Two thirds of LGB people stated a are more likely to seek care when they need it if the preference for a label for providers saying that environment is made safe for them. they were LGBT-friendly or LGBT-welcoming, Knowing patients’ SO/GI is crucial for under- while less than half of heterosexual patients standing where health disparities are occurring wanted physicians to make such statements. The and learning how to prevent or intervene around bulk of respondents were supportive of trying to those disparities. SO/GI EHR data can allow the improve LGBT healthcare, with one heterosexual systematic comparison of the epidemiology of saying, “Everyone deserves the best care possible. health problems and health outcomes of LGBT Opening up a secure dialogue channel will encour- patients with the outcomes of heterosexual, cis age those with a specifi c orientation to come for- gender patients, giving us a measure of how well ward and share their information without fear.” A providers are meeting standards of care for LGBT lesbian added, “I think it’s absolutely crucial that patients. Health disparities will be made more all human beings and all communities get the visible, and harder to ignore, so that we can work health care they need.” A bisexual patient added, to reduce them. EHR data can prove invaluable “I hope new developments occur such as this one when researching better care utilization for proposed; they are desperately needed.” LGBT populations, giving us direct feedback 88 E.J. Callahan et al. about the effectiveness of interventions. Having term. For example, differences of sex development SO/GI data in the EHR can unlock the informa- is defi ned as having genetic, hormonal or anatomic tion we need to start providing high quality development outside traditional bounds of male or LGBT healthcare. female. If one selects differences of sex development, under comments they are asked to identify any associated medical condition. Launching SO/GI in the Electronic Health Record Options on Where and How One With reassurance that most patients could appre- Provides Data ciate why these questions were being asked, and an overall favorable response toward launching While members of the Task Force were immedi- the gathering of SO/GI data, the Task Force ately drawn to the idea of physicians gathering moved into the fi nal build. To complete the build, SO/GI as we launched this effort, it became clear the Task Force needed to address what questions that building in fl exibility to the data collection should be asked and in what order. A literature would be a valuable strategy . First, one cannot review was done to explore what common terms mandate that all patients share their SO/GI demo- had been used in prior research. We sought con- graphics. Some have had such negative experi- sultation from clinical settings such as Fenway ences with healthcare providers in the past that Health [13 ] and the University of California, San they will withhold that information. Second, Francisco Center for Excellence in Transgender among those who share their SO/GI data, some Health [ 14]. These explorations led to both con- will not be comfortable with that information in sensus on questions to use in determining SO/GI the EHR. Employees can still be fi red for their as well as recognition that it was critical to allow sexual orientation in 29 states and for their gender patients to use their own terms to describe them- identity or expression in 31 states [15 ]. Individuals selves. For example, it is common in some who anticipate moving to such states may not be African American male circles to use the term willing to have that data shared in the future. Third, same gender loving to self-describe. While this some individuals will only be comfortable sharing was not included as a prompt, the questions may this information with their provider. This needs to be revised in the future to include such a prompt. be respected, but to optimize care delivery for In addition, the youngest Task Force members LGBT patients it is critical to use that information (both LGBT and allies) were consulted carefully, to prompt prevention efforts and to monitor the asking that they share their preferred terms. timely delivery of early diagnostic tests, i.e. resid- The younger Task Force members reported that ual breast tissue examination and pap smear for it was critical that we capture self-descriptors such female to male (FTM) trans patients who retain a as pansexual (someone who is attracted to other cervix, and digital examination of the prostate for people regardless of their gender identity or gender all male to female (MTF) patients. Fourth, we built expression) and genderqueer [10 ]. The term gen- a mechanism for declaring SO/GI from home by derqueer is often used by younger individuals. It way of the patient portal into the EHR (called sometimes indicates a person not subscribing to a MyChart). Thus, the patient can provide these data male–female gender binary, and sometimes indi- from home, or the provider can enter the informa- cates that the person does not see her/himself as tion after a discussion with the patient. If a patient heterosexual. This lack of specifi city in meaning declares SO/GI from home, we recommend that requires providers to ask follow up questions to the provider review that data at the next visit to understand what their patient means by the term. personalize the sharing. Our demographics allow The terms selected are presented in Table 7.3 . sharing of marital status for LGBT individuals as In the electronic record, defi nitions of terms are well as identifying a partner if not married, both provided. These prompts provide a defi nition when for advance directives and sharing health a provider lets their cursor hover over a particular information. 7 Utilizing the Electronic Health Record as a Tool for Reducing LGBT Health Disparities… 89

Table 7.3 Cursor hover popups of SO/GI defi nitions Cursor hover popups for provider’s Smartform Gender identity How a person experiences/describes their own gender Intersex Having genetic, hormonal, or anatomic development outside traditional bounds of male or female; under comments, identify any associated medical condition(s). May be selected along with M or F Trans FtM Assigned female sex at birth, now identifi es as male Trans MtF Assigned male sex at birth, now identifi es as female Sexual orientation Categories describe exclusive or predominant attraction Straight/heterosexual A man attracted to women, or a woman attracted to men Gay/homosexual A man attracted to men Gay/lesbian A woman attracted to women Bisexual A man or woman attracted to both men and women Questioning A person unsure of, questioning, or testing sexual orientation or gender identity Queer A person identifying as non-heterosexual or as outside the male–female gender binary; younger generation claiming previously derogatory word/identity as positive Other A person experiencing an alternate sexual orientation; please ask for further specifi cation Pansexual A person attracted to others regardless of their gender or gender expression Cursor hover popups for MyChart questionnaire Gender identity How you experience/describe your own gender Intersex At birth, you had genetic, hormonal or anatomic development outside traditional bounds of male or female; under comments, please describe any associated medical condition(s). This may be selected along with M or F Trans FtM You were assigned female sex at birth; now identify as a man Trans MtF You were assigned male sex at birth; now identify as a woman Sexual orientation Select term which best describes your exclusive or predominant attraction Straight/heterosexual As a man, you are attracted to women, or as a woman, you are attracted to men Gay/homosexual As a man, you are attracted to other men Gay/lesbian As a woman, you are attracted to other women Bisexual You are attracted to others of your gender as well as others of a different gender Questioning You are exploring, unsure of, or testing your sexual orientation or gender identity Queer You identify as non-heterosexual or as being outside the male–female gender identity binary Other You experience a sexual orientation outside those already described; please specify your sexual attraction further Pansexual You are attracted to others regardless of their gender or gender expression

Health Information Technology who declare sexual orientation or gender identity minority status closely to ensure there is no mis- Our EHR is built on an Epic base which has been use of their data. Unauthorized access or sharing incorporated since 2004. The revenue cycle has of information can lead to termination of gone live in Spring, 2014. UCDHS has been employment. selected for the Health Information and Two fi nal protections have been implemented Management Systems Step 7 status (HIMSS 7), for LGBT patients who declare SO/GI in the refl ecting a high level of security and capacity for EHR. First, patient complaint service personnel data analytics and clinical intervention. It is pos- were given special training in how to deal with sible to provide a high level of monitoring of complaints from heterosexual and cis gender patient records for inappropriate access and use. patients offended at being asked about SO/GI, The monitoring system is set to follow all those as well as how to respond to LGBT patient 90 E.J. Callahan et al. concerns about the security of the data. These ser- been broken into subcommittees that now vice personnel shared that they were frequently report to the Vice Chancellor’s LGBT Advisory asked to identify LGBT-welcoming primary care Council. There are multiple levels of effort and specialty providers by patients new to the sys- ongoing and planned under this new Council. tem. To accomplish this, in the 7 months leading These efforts include: to the launch of the EHR SO/GI demographic capacity, we began surveying providers seeking 1. A committee to create comprehensive and self-identifi cation of LGBT-welcoming provid- effective policies to ensure respectful and ers. We currently have nearly had over 300 indi- quality care for trans patients. viduals identify as LGBT-welcoming but many 2. Development of a mechanism to ensure staff are not primary care providers. We need to con- is prompted to use the patient’s preferred tinue to identify such providers in our system name for those who are transitioning. because many of these providers are at full capac- 3. A committee planning and overseeing patient ity for patients. We invite LGBT residents to self- centered outcomes research to explore mech- declare to enhance support services for them and anisms for enhancing quality of care for to enhance the number of welcoming providers. LGBT patients further. While we celebrate Secondly, we have developed a website for all the adoption of LGBT Quality Improvement providers with helpful articles and links to videos as a UCDHS initiative, accomplishing those which is also available on the web at https://myhs. improvements will take considerable effort ucdmc.ucdavis.edu/web/LGBTI/home [16 ]. and commitment. We continue to add useful information to this 4. An initiative to survey LGBT experiences of website which is both internally accessible within mistreatment at UCDHS and make recom- the EHR and externally available through web mendations to the Chancellor on how to search engines and the URL posted above. improve experiences such as use of restorative justice [17 ] in confl ict management. 5. Development of an anatomy checklist to Conclusion: The Necessary determine what organs are present for transi- Next Steps tioning patients. 6. Development of gay, lesbian, transgender, Our SO/GI questionnaire is now on each of over differences of sex development and other 85,000 outpatient MyChart portals. Its presence registries to assure that prevention and inter- is a key element in our institutional adoption of ventions can be launched and evaluated improvement in quality of care for LGBT effectively. patients. We are now undertaking comparisons 7. Work with Press Ganey to assure that we of strategies for pushing these questionnaires out seek SO/GI data in exploring our patient effectively to patients to encourage their sharing satisfaction responses. of data on the EHR portal. We are committed to 8. Work within the Association of American learning how to do this most effectively. Medical Colleges (AAMC) Faculty Forward Considerable work remains if we are to optimize this program to assure that LGBT voices are tool to improve healthcare delivery for LGBT heard in our next assessment of our faculty patients. That work will continue in different engagement as a School of Medicine. venues, since the Task Force for Inclusion of 9. Inclusion of sexual orientation and gender Sexual Orientation and Gender Identity in the identity demographics for all faculty and Electronic Health Record has offi cially com- staff hires at UCDHS. pleted its charge with the launch of SO/GI 10. Increasing cultural awareness through roll-out demographics in the EHR. The Task Force has of Unconscious Bias training efforts. 7 Utilizing the Electronic Health Record as a Tool for Reducing LGBT Health Disparities… 91

11. Development of ongoing patient satisfaction foundation for better understanding. Washington, DC: and patient engagement measures to ensure National Academies Press 8. Callahan EJ, Hazarian S, Yarborough M, Sanchez that we are sensitive to patient wants and JP (2014) Eliminating LGBTIQQ health disparities: needs in the development of improved care. the associated roles of electronic health records and 12. Development of an LGBT patient advisory institutional culture. Hastings Cent Rep 44 Suppl committee to use to oversee, comment on and 4:S48-S52. doi:10.1002/hast.371 9. Ton H, Steinhart D, Yang MS, Sala M, Aguilar- recommend enhancements of care at UCDHS. Gaxiola S, Hardcastle L, Bodick D (2011) Providing quality health care with CLAS: a curriculum for developing culturally & linguistically appropriate services. Facilitator’s manual. Sacramento, CA: Ofﬁ ce References of Multicultural Health CDoPH and Department of Health Care Services 1. Callahan EJ, Sitkin N, Ton H, Eidson-Ton WS, Latimore 10. Wilchins R, Howell C, Nestle J (2002) Genderqueer: JP (2015) Introducing sexual orientation and gender voices from beyond the sexual binary. Los Angeles, identity into the electronic health record: one academic CA: Alyson health center’s experience. Acad Med 90(2):154– 11. Obedin-Maliver J, Goldsmith ES, Stewart L, White 60. doi:10.1097/ACM.00000000000000467 W, Tran E, Brenman S, et al (2011) Lesbian, gay, 2. Institute of Medicine (2002) Unequal treatment: what bisexual, and transgender-related content in under- health care system administrators need to know about graduate medical education. JAMA 306(9):971– racial and ethnic disparities in healthcare. Washington, 7. doi:10.1001/jama.2011.1255 DC: National Academy Press 12. Lambda Legal (2010) When health care isn’t caring: 3. Greenwald AG, McGhee DE, Schwartz JL (1998) Lambda Legal’s survey on discrimination against Measuring individual differences in implicit cogni- LGBT people and people living with HIV. tion: the implicit association test. J Pers Soc Psychol 13. Cahill S, Makadon H (2014) Sexual orientation and 74(6):1464–80. doi:10.1037/0022-3514.74.6.1464 gender identity data collection in clinical settings 4. Sabin J, Nosek BA, Greenwald A, Rivara FP (2009) and in electronic health records: a key to ending Physicians’ implicit and explicit attitudes about race LGBT health disparities. LGBT Health 1(1):34–41. by MD race, ethnicity, and gender. J Health Care Poor doi:10.1089/lgbt.2013.0001 Underserved 20(3):896–913. doi:10.1353/hpu.0.0185 14. Website for UCSF Center for Excellence for 5. Dovidio JF, Fiske ST (2012) Under the radar: how Transgender Health [12 June 2014]. Available from: unexamined biases in decision-making processes in http://www.transhealth.ucsf.edu/ . clinical interactions can contribute to health care dis- 15. Human Rights Campaign. Employment Non- parities. Am J Public Health 102(5):945– Discrimination Act [20 June 2014]. Available from: 52. doi:10.2105/AJPH.2011.300601 http://www.hrc.org/laws-and-legislation/federal- 6. Chapman EN, Kaatz A, Carnes M (2013) Physicians legislation/employment-non-discrimination-act . and implicit bias: how doctors may unwittingly per- 16. UC Davis Health System. LGBTI health care [20 June petuate health care disparities. J Gen Intern Med 2014]. Available from: https://myhs.ucdmc.ucdavis. 28(11):1504–10. doi:10.1007/s11606-013-2441-1 edu/web/LGBTI/home . 7. Institute of Medicine (2011) The health of lesbian, 17. Zehr H (2002) The little book of restorative justice. gay, bisexual, and transgender people: building a Intercourse, PA: Good Books Part III LGBT Preventive Health and Screening Primary Care, Prevention, and Coordination of Care 8

Keisa Fallin-Bennett , Shelly L. Henderson , Giang T. Nguyen , and Abbas Hyderi

Purpose Learning Objectives

The purpose of this chapter is to provide an over- • Identify at least three strategies for communi- view of the primary care needs of lesbian, gay, cating effectively with LGBT patients using bisexual, and transgender (LGBT) patients verbal and written communication and docu- including appropriate preventive and screening mentation strategies that respect the poten- services and coordination of care. tially sensitive nature of clinical information pertaining to patients’ sexual orientation and gender identity (ICS2 , ICS3 ) • Describe screening tests, preventive interventions, and health care maintenance for LGBT patients ( PC3 , PC4 , PC5 , PC6 ) • Discuss the importance of primary care pro- K. Fallin-Bennett , M.D., M.P.H. (*) viders recognizing patient autonomy in self- Department of Family and Community Medicine , identiﬁ cation of sexual orientation and gender University of Kentucky 2195 Harrodsburg Road, Ste 125, Lexington , KY 40504 , USA identity ( Pr2 ) e-mail: [email protected] • Identify at least three strategies for improving S. L. Henderson , Ph.D. patient care within the health system by Department of Family and Community Medicine , partnering and collaborating with LGBT com- University of California Davis , 4860 Y Street, munity resources (SBP4 ) Suite 2300 , Sacramento, CA 95817 , USA e-mail: [email protected] G. T. Nguyen , M.D., M.P.H., M.S.C.E. Overview of Primary Care Department of Family Medicine & Community Health and Student Health Service, University of Pennsylvania , 3535 Market Street, Suite 100 , Importance of Primary Care Philadelphia , PA 19104 , USA and the Patient-Centered e-mail: [email protected] Medical Home A. Hyderi , M.D., M.P.H. Department of Family Medicine , University of In the modern-day urban America, many people Illinois at Chicago, M/C 785, 1819 Polk Street , Chicago , IL 60657 , USA have never experienced having a traditional e-mail: [email protected] “family doctor.” Primary care, however, remains

© Springer International Publishing Switzerland 2016 95 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_8 96 K. Fallin-Bennett et al. the backbone of healthcare, and is crucial for health care, and continuous quality improvement reducing the escalation of costs while maintain- involving patients and families. The movement ing high quality care. Sharma et al. demonstrate toward medical homes was strengthened by the that the majority of care for the highest-cost passage of the Affordable Care Act (ACA) in chronic conditions is performed by primary care 2011. The law not only required health insurance physicians [1 ]. With their focus on preventive coverage for almost every individual, but also care, primary care providers (PCPs) are also incentivized elements of care already incorpo- more cost-effective. Numerous studies world- rated into the PCMH, such as meaningful use of wide demonstrate that health systems in which electronic health records to facilitate quality primary care is central and family physicians are improvement. If implemented fully, the law also the dominant specialty have better population creates incentives in terms of Medicare and health outcomes at a lower cost than subspecialty Medicaid reimbursements as well as grant pro- dominated systems [2 ]. Many LGBT persons grams, to promote realignment toward primary may be reluctant to access health care due to fear care and prevention and more appropriate use of of stigmatization or discrimination, previous neg- specialty and technical care [8 ]. ative experiences, or concerns about provider knowledge and appropriate care [3 ]. Those concerns make it especially important for LGBT Preventive Health people to have a trusted PCP. The role of the PCP is to provide long-term, personalized care, and to Patient–Provider Relationship coordinate care for a patient within the health care system as they build trust with the patient The patient–provider relationship is a keystone of that facilitates health improvement. primary care. The bond of trust between the Many decades after being proposed by the patient and the provider (physician, nurse practi- American Academy of Pediatrics, the modern tioner, or physician assistant) is vital to the diag- movement to provide each patient with a Patient nostic and therapeutic process. In order for the Centered Medical Home (PCMH) has gained provider to make accurate diagnoses and provide momentum as the problems of an expensive and optimal treatment recommendations, the patient fragmented U.S. health care system have come to must be able to communicate all relevant infor- light. The purpose of a PCMH is for family phy- mation about an illness or injury. Health out- sicians, general internists, pediatricians or nurse comes can be improved when providers truly practitioners in primary care to establish systems know their patients [9 ]. Knowing a patient’s sex- that promote longitudinal, personalized, and yet, ual orientation does more than just provide infor- holistic care [4 , 5 ]. The American Academy of mation about his or her sexual history. When Family Physicians describes the principles of the providers truly know their patients, including PCMH as access to a personal physician who salient identities, patients are more able to engage leads the care team within a medical practice, a in their own care. From the perspective of whole whole-person orientation to providing patient person care, it is essential that patients feel com- care, integrated and coordinated care, and focus fortable disclosing aspects of their lives that may on quality and safety [6 ]. The National Committee impact their ability to adhere to treatments. on Quality Assurance (NCQA) has devised Patients fi lter provider instructions through their detailed standards and guidelines for practices to existing belief system; they decide whether the be recognized at various stages on the way to recommended actions are possible or desirable in being designated a full PCMH by the NCQA [7 ]. the context of their everyday lives [10 ]. This recognition process is rigorous, involving Providers can create an environment that is establishment of electronic health records (EHR), conducive to candid communication. Patients fl exible scheduling with after-hours and weekend assess the offi ce environment for signs of affi rma- access, integration of primary care and mental tion. Posters and patient education materials with 8 Primary Care, Prevention, and Coordination of Care 97 relevant information in the waiting room help set self-identifi ed lesbians (and possibly bisexual a tone of acceptance. Using inclusive language on women) are at an increased risk of overweight intake forms and training offi ce staff to use inclu- and obesity compared to heterosexual women sive language also may increase patients’ comfort [ 14 , 15 ], while gay men tend to have lower BMI [3 , 11 ]. In the examination room, it is important to than their straight counterparts but express higher ask patients open-ended questions that elicit who body dissatisfaction and may be at higher risk for this patient is as a person. For example, a provider eating disorders [ 16 , 17]. Trends in physical might ask whom a person lives with, who should activity for LGBT patients are diffi cult to ascer- be informed about health care issues, and how a tain and studies tend to be small and confl icting patient prefers to be addressed. Phrasing these [18 – 21 ]. Primary care providers should be aware questions in a way that demonstrates openness to that body image ideals in the LGBT community a variety of answers allows a trusting therapeutic may be different from typical cultural ideals, relationship to develop [11 ]. though those theorized differences seem to be minimal in recent, population-based studies [ 16 , 17 , 22 – 24]. Nevertheless, such cultural factors as lesbian women’s greater idealization of muscu- Helpful Hint larity [17 ] and gay men’s greater internalization To create a truly patient-centered environ- of media image ideals [ 25 ] could affect patient ment for all patients, procedures and a cul- motivations to lose weight or adopt specifi c exer- ture of acceptance and awareness must be cise plans. For some within the “bear” subculture planned. Use the many available resources of gay-identifi ed men, obesity might even be nor- to facilitate patient-centeredness among malized, and “excess” body weight can be a cel- LGBT patients. ebrated part of one’s identity [ 26 ]. Motivational interviewing is a patient-centered approach that can help elicit a patient’s values and assist in Health Promotion achieving culturally appropriate behavior change [ 27 , 28 ]. Health promotion is an important function of primary care and the patient-centered medical Mental and Emotional Health home. Primary care physicians and providers LGBT people have an increased risk of mental also can and should play a role in promoting health and substance use conditions; however, health in the community, considering the large even those without a history of such conditions or contribution that social determinants of health any clear symptoms deserve the same attention to have on population and individual health out- screening for depression, anxiety, violence comes [12 , 13 ]. LGBT patients deserve the same victimization, and substance use as employed for level of attention to health promotion as all all patients. Counseling on prevention of such patients, as well as the same level of investment conditions is also appropriate. in the health of their community. As is emphasized throughout this text, LGBT persons should Sexual Health be allowed and encouraged to self-defi ne what Sexual health is discussed in detail below and in community means to them. other chapters. It is important to note here that LGBT patients should be asked the same details Nutrition and Physical Activity of sexual history and that assumptions about their Healthy lifestyles are critical elements in health behavior based on identity or past history should promotion and have acquired added importance be avoided [3 ]. Prevention of sexually transmit- in the modern era in which obesity and health ted infections (STI’s) and family planning are issues related to sedentary lifestyle and poor diet important discussions to have with all patients. It is have become epidemics. In the LGBT community, important to recognize that lesbian-identifi ed 98 K. Fallin-Bennett et al. women and women who have sex with women can benefi t from HPV vaccination because HPV (WSW) can transmit or receive any STI from a can be transmitted between women and the female partner and should not be dismissed as majority of such women also have sex with men not-at-risk [29 , 30]. In contrast, gay-identifi ed in their lifetime [29 ]. Men benefi t from HPV pre- men or men who have sex with men (MSM) vention in terms of both genital warts and anal should not be assumed to be at high risk simply cancer, as well as the reduction in transmission of based on identity or history, as some may be HPV to male or female partners [37 ]. abstinent or monogamous [3 ]. It is also important to note that many LGBT patients are interested in pregnancy, surrogacy, or adoption, and that there Screening are options to achieve parenthood for all patients and primary care providers should be ready to Cardiovascular Health counsel or refer these patients appropriately [31 ]. LGBT persons may be at higher risk of cardio- Several articles and websites are helpful for pri- vascular disease owing to their increased preva- mary care providers who wish to counsel patients lence of risk factors such as smoking, depression, more specifi cally [32 – 34]. It is also pertinent to and (in women and some gay men), obesity [39 , 40 ]. remember that many WSW also have sex with Nevertheless, there is no evidence supporting men or will in the future and do need counseling screening based on identity or sexual behavior concerning contraception [11 , 29 ]. Transmen alone. Screening for obesity, elevated blood pres- (transgender FTM) also often retain a uterus and sure, cholesterol, lipids, and blood sugar are con- ovaries, and testosterone therapy is not a reliable sistent with that of the general population and form of contraception; therefore they also require decisions for more or additional screening should an exploration of their desires for fertility versus be based on individual risk factors. The US contraception, whether relevant to a current male Preventive Services Task Force (USPSTF) and partner or for future planning [35 , 36 ]. the AAFP issue recommendations separately for each of the CV risk factors listed [41 ]. The Center of Excellence for Transgender Care at the University of California, San Helpful Hint Francisco, recommends screening cholesterol/ Use a sensitive and comprehensive sexual lipids and blood pressure for all patients planning history rather than assumptions about to start hormone therapy within the coming year. behavior to determine appropriate screen- They recommend a target systolic blood pressure ing and diagnostic tests. at or below 130 and LDL at or below 135 prior to initiation of hormones [ 35 ]. Monitoring and treatment goals on hormones are covered in Chap . 19 . Immunizations Immunizations for LGBT persons generally fol- Cancer low accepted guidelines for children and adults, with the exception that the CDC does recom- Cervical Cancer Cervical cancer incidence and mend full hepatitis A and B immunization for all prevalence have decreased dramatically in the MSM. Human papilloma virus (HPV) vaccina- last half-century thanks to widespread and fre- tion, which is recommended by the Centers for quent screening with Papanicolaou (Pap) tests Disease Control (CDC) and the Advisory and offi ce-based colposcopy and treatment. Committee on Immunization Practices (ACIP) Consequently, the vast majority of patients diag- for both females and males age 9–26, is also pru- nosed with cervical cancer are those who have dent to recommend to LGBT youth and young not undergone screening in over 10 years, includ- adults [37 , 38]. Even lesbian-identifi ed WSW ing those who have never had a Pap test [ 29 ]. 8 Primary Care, Prevention, and Coordination of Care 99

Most studies that include them fi nd that WSW or risk-taking [45 , 48]. Some WSW may therefore lesbian-identifi ed women are disproportionately actually have higher risk for HPV acquisition represented among that group of infrequent or than heterosexual women [ 30]. As with all never screeners [42 – 44 ]. It is widely accepted patients, a detailed sexual history, including life- that development of cervical neoplasia is highly time partners and measures taken toward safer associated with persistence of high-risk strains of sex, can help determine risk. (Please refer to HPV in the cervix. It is likely, therefore, that fail- Appendix A, Chaps. 2 , 5 , and 6 for suggested ure to screen is most commonly caused by a fail- sexual history questions and more information on ure of the patient or the provider to recognize that gathering history in a sensitive and patient-cen- WSW are at risk for HPV infection [29 , 30 ]. tered manner.) Nonetheless, all persons with a In truth, WSW or lesbian identifi ed women are at cervix and any history of sexual activity should risk from multiple sources: be assumed to be susceptible to HPV, and recommended for screening with a Pap test according • The majority of WSW/lesbians also have a to usual guidelines [11 , 49 ]. Those without a cer- lifetime history of intercourse with men, vix due to hysterectomy should also be screened • Transmission of HPV between female part- according to usual guidelines (See Table 8.1 for ners is possible and has been documented, screening guidelines; note that those who have • There exists a higher proportion of current or received the HPV vaccine series should continue former smokers among sexual minority (SM) to be screened per their age category.) [50 ]. At women, a known risk factor for cervical present, experts are considering the option of cer- cancer [29 ] . vical cancer screening through HPV testing without cytology [52 ]; such recommendations are not In addition, many studies suggest that SM currently in effect, however, and if HPV testing adolescents exhibit earlier sexual debut and without cytology becomes an accepted screening higher risk sexual behavior (with partners of option, it is unlikely that guidelines will advise either or both sexes) than heterosexual teens an approach for screening SM women that differs [45 –47 ]. Some research also demonstrates that from screening for the general population. women who have sex with both women and men It is important to recognize that reduction in are more likely to exhibit increased sexual screening can also result from SM women’s

Table 8.1 Recommended cervical cancer screening for all persons with a cervix Age group/clinical feature Screening method Frequency Other considerations Under age 21 Not recommended Age 21–29 Cytology alone Every 3 years Currently HPV testing alone not recommended; Age 30–65 HPV and cytology Every 5 years however, there is an FDA-approved HPV test co-testing (preferred) (without Pap cytology), and ongoing studies are promising and likely to change practice a Cytology alone Every 3 years (acceptable) Age over 65 Discontinue Those with history of CIN 2–3 or CIS should screening after continue screening per age 30–65 guidelines adequate negative through 20 years after diagnosis prior screenings Status post total Not recommended Applies to those without a cervix and without a hysterectomy history of CIN 2–3, CIS, or overt cancer in last 20 years CIN cervical intra-epithelial neoplasia, CIS carcinoma-in-situ Adapted from Table 1 : Joint Recommendations of the American Cancer Society , the American Society for Colposcopy and Cervical Pathology , and the American Society for Clinical Pathology appearing in the 2012 ACOG Practice Bulletin on Cervical Cancer Screening [50 ]; other than a references Ronco et al. [51 ] and U.S. FDA [52 ] 100 K. Fallin-Bennett et al. discomfort with the examiner and/or the exam sensitivity are important [57 ]. It is also critical to itself. Anecdotally, many WSW fi nd themselves note the use of testosterone on the pathology order subject to assumptions from the provider that [ 36, 56 ]. An FTM who has had a hysterectomy or their sexual activity is heterosexual and they may sexual reassignment surgery (SRS) with no his- be chided for not using birth control [29 , 30 , 53 ]. tory of cervical dysplasia can discontinue Pap This assumption reveals inadequate history-tak- screening. MTF individuals who have had SRS do ing from the provider and does not engender con- not need Pap tests because they do not have a cer- fi dence in the provider or the health care system. vix and the neovagina consists of epithelial rather In addition, WSW may also experience more dis- than mucosal tissue. They may of course need comfort with the exam itself, especially those pelvic exams as indicated by symptoms or patient who are nulliparous and have not experienced questions [35 ] (Note that rarely, especially in the signifi cant vaginal penetration [29 ]. As is true past, neovaginas were constructed using tissue with all patients, the WSW patient should be from the glans penis. If a patient knows of this approached in a sensitive manner, the smallest surgical history, consensus guidelines are to use speculum necessary for the patient’s anatomy age-appropriate vaginal pap screening [58 ]). Not should be used, and the patient’s reports of dis- all patients broadly categorized as transgender comfort should be honored. Performing the identify as FTM or MTF, as described in Chap. bimanual exam prior to the speculum exam in 16 , and it is the presence of a cervix rather than order to assess pelvic landmarks and ease the the gender identity, that determines the need for patient into the exam is a reasonable option [54 ]. screening. In summary, cervical cancer screening Williams and Williams [ 55 ] provides an excellent should follow the same guidelines for all patients resource on using woman-centered language dur- who have a cervix or had the cervix removed due ing a pelvic exam for female-identifi ed patients. to dysplasia or cancer [58 ]. Transgender patients should likewise be screened according to the organs and tissues present at any given time. Because the majority of Helpful Hint FTM patients have not had genital reassignment The presence of a cervix rather than gender surgery, most also require regular Pap screening identity determines the need for cervical as detailed in Table 8.1 [35 ]. As usual, a detailed cancer screening. sexual history helps the provider discuss the level of risk and benefi t with the patient as necessary. Because FTM patients identify as men (and trans- Breast Cancer Evidence is mixed concerning spectrum natal born females in general do not whether lesbian women have a higher incidence identify completely as women), they may have of breast cancer than heterosexual or bisexual particular diffi culty managing emotions and phys- women. Some research, however, supports that ical sensations associated with pelvic exams. It is risk factors such as lower parity and lactation, therefore important to employ extra sensitivity in less use of hormonal contraception, higher rates using terminology that is comfortable for the of obesity, and lower rates of screening are more patient and performing the exam effi ciently. The common in lesbian-identifi ed women and might Canadian organization “Check It Out, Guys” has contribute to breast cancer risk [ 59]. With atten- a number of helpful recommendations for provid- tion to the risk factors of the individual woman, ers [56 ]. In addition, FTM patients have high breast cancer screening is recommended accord- prevalence of unsatisfactory pap smears coming to standard guidelines, either those of the pared to non-transgender patients possibly sec- United States Preventive Services Task Force ondary to testosterone therapy causing growth in (USPSTF), American College of Obstetricians the clitoris and dryness of tissues, meaning that and Gynecologists (ACOG), American Cancer sensitivity to expected changes and more liberal Society (ACS), or others. The USPSTF, for use of lubrication within the limits of Pap test example, recommends mammography screening 8 Primary Care, Prevention, and Coordination of Care 101 every 1–2 years from age 50 to 74, with screen- recorded in cancer registry data, national studies ing from age 40 to 50 and over 74 dependent on are unable to provide defi nitive evidence regard- patient risk factors, values, and comorbidities ing the rates of colon cancer in LGBT popula- [60 ]. In making shared decisions on mammogra- tions. However, a recent analysis of Surveillance, phy screening, the PCP and health care team Epidemiology, and End Results (SEER) data by should carefully consider the lesbian or bisexual- Boehmer et al. showed that, independent of race identifi ed woman’s risk factors concerning unop- and socioeconomic status, there is a signifi cant posed estrogen exposure over the lifetime and positive association between CRC incidence and screening history, as well as family history. a higher geographic density of sexual minority Breast cancer screening in transgender per- persons. A similar association with regard to sons on hormone therapy or after surgery is more CRC mortality was also noted for sexual minor- complex. At this time there is no existing research ity men [61 ]. Some data suggest that CRC screen- on the incidence or natural history of breast can- ing may actually be higher for sexual minorities cer in these groups. Based on expert opinion, than for heterosexual persons. Data from the the UCSF Center for Transgender Health’s pri- California Health Interview Survey showed that mary care protocols recommend beginning mam- gay/bisexual men had 6–10 % greater screening mography in MTF patients when patients are age than heterosexual men. However, vigilance is 50 or over and have been on estrogen hormone necessary, especially for some racial and ethnic therapy for 5 or more years (or age 50 with other minorities. For example, Asian/Pacifi c Islander risk factors such as body mass index (BMI) over men were much less likely to be up-to-date on 35 or strong family history) [35 ]. There is not a CRC screening (41.0 % for gay/bisexual men, specifi c recommendation on stopping screening 43.8 % for heterosexual men) compared to gay/ for MTF, though the USPSTF guideline of age 75 bisexual and heterosexual white men (59.8 % and appears reasonable [60 ]. Many FTM undergo 58.2 %, respectively) [62 ]. mastectomy (top surgery), and level of remaining CRC screening can be accomplished through risk may differ depending on whether the top sur- a number of methods (fecal occult blood testing/ gery is a simple reduction versus a chest recon- fecal immunochemical testing, sigmoidoscopy, struction. Those with a reconstruction are not or colonoscopy). The USPSTF recommends thought to need mammograms in the absence of screening beginning at age 50 years and continu- other major risk factors (e.g. strong family his- ing until age 75 years [63 ]. This recommendation tory/brca mutation), whereas a patient with only is no different for patients who identify as in sex- a reduction should be considered for screening as ual minority categories. Also, there does not per natal females beginning at age 50. Similarly, appear to be an increased level of CRC risk for FTM without top surgery should undergo screen- HIV-infected persons [64 ]. ing every 1–2 years starting at age 50, as there is currently no evidence that testosterone therapy Anal Cancer Anal cancer is fairly uncommon alone reduces breast cancer risk or the effective- in the general population, but the risk is about ness of mammography. Due to lack of research in 30-fold higher for HIV-infected persons, and this area, the UCSF Center of Excellence for HIV+ MSM appear to be at highest risk [64 ]. Transgender Health recommends annual chest Like cervical cancer, anal cancer is largely attrib- wall and axillary node exam for all patients [ 35 ]. utable to HPV. A multi-city trial reported anal Given the low level of evidence that clinical HPV in 57 % of a large sample of HIV-negative breast exams are effective in reducing mortality MSM; this study also indicated that HPV infec- from breast cancer in the general population, the tion risk was highest among men who practiced benefi t of annual chest wall exam is unclear . receptive anal intercourse and who had over fi ve male partners in past 6 months [ 65]. Unlike cervi- Colorectal Cancer (CRC) Because sexual ori- cal cancer, however, anal cancer is much less entation and gender identity are not typically common (only about 5200 new cases per year in 102 K. Fallin-Bennett et al. the U.S.), and guidelines for anal cancer screening are not as clear. Screening for anal cancer and Helpful Hint its precursor, anal intraepithelial neoplasia (AIN), Screen HIV positive MSM annually with is accomplished through the use of anal cytology an anal Pap if resources are available for (“Anal Pap”). The sensitivity of anal cytology for appropriate follow-up. Consider screening detection of AIN is much better for HIV+ MSM HIV negative MSM biannually. than for HIV− MSM [66 ]. Cost-effectiveness models suggest that in the U.S. anal cytology done annually for HIV+ and Prostate Cancer Epidemiologic data on pros- biannually for HIV− MSM would be cost effec- tate cancer incidence is unavailable for gay/ tive [67 , 68 ]. The role of co-testing for high-risk bisexual men, but there is no reason to believe HPV is unclear, and commercially available HPV that their risk would be lower than that of other detection methods are not yet FDA approved for populations. Given the lack of strong evidence to anal samples. Abnormal anal cytology should the contrary, screening considerations should fol- prompt further investigation through high- low the standard recommendations for non- resolution anoscopy (HRA). Techniques associ- LGBT populations. The USPSTF currently ated with this procedure are similar to those for recommends against PSA-based screening, and colposcopy and include visualization under mag- does not make a recommendation considering nifi cation, application of acetic acid, assessment other modalities [70 ]. Other organizations offer of aceto-whitening and vascular changes (punc- different recommendations [71 ]. MTF women tuation, mosaicism), and evaluation of Lugol’s are still at risk, and cases of prostate cancer have staining patterns. Biopsy of suspicious areas pro- been reported among MTF transgender women vides defi nitive diagnosis [69 ]. on feminizing hormone therapy [ 72 ], though It has been recommended that biopsies show- PSA levels are reduced by estrogen therapy and ing high-grade anal intra-epithelial neoplasia may not be adequate testing for prostate cancer (HG AIN; grade II or III) should be treated, while when used alone [73 ]. Given that orchiectomy is AIN grade 1 can be followed-up in 6 months, or a component of prostate cancer treatment [74 ], it treated if doing so would have minimal potential is theoretically likely that removal of the testes as for morbidity. MSM with normal HRA may part of “bottom” surgery can reduce the chances resume usual screening (annually if HIV+ and that a trans woman might develop prostate cancer every 2–3 years if HIV−). Treatment of AIN may in the future. include cryotherapy, electrocautery, laser treatment, infrared coagulation, or topical therapies Testicular Cancer The U.S. Preventive Services such as imiquimod, trichloroacetic acid, and Task Force recommends against screening for 5-fl uorouracil. It is important to note, however, in testicular cancer [75 ] Recommendations are no many cases, there may be limited availability of different for men who have sex with men. While experienced cytopathologists who are able to testicular cancer should be included in the differ- accurately interpret anal cytology samples, as ential diagnosis of testicular pain or masses in well as few clinicians capable of doing HRA or MSM, screening should not be part of routine experienced in treating AIN. The process of screening for asymptomatic MSM. screening should only be instituted if appropriate resources exist for evaluation and treatment of Lung Cancer Although epidemiologic studies abnormal results [66 , 69 ]. Because infection with documenting lung cancer diagnoses by sexual HPV types 16 and 18 can be prevented by avail- orientation or gender identity are lacking, the dis- able vaccines, MSM should be offered immuni- proportionately high prevalence of smoking zation, hopefully before they become exposed to among SGM portends a higher risk of lung cancer. these strains of virus [38 ]. One study suggests a higher incidence of and 8 Primary Care, Prevention, and Coordination of Care 103 mortality from lung cancer in sexual minority DXA screening in most MTF patients, with DXA men, though not women [76 ]. Lung cancer recommended only in those patients who are post- screening for those at high risk is controversial orchiectomy/post-SRS, over 60, and off hormone but currently recommended by the USPSTF. therapy at least 5 years [35 ]. Criteria for screening with low-dose contrast computerized tomography (CT) scan include age Interpersonal Violence and Personal 50–64 with over 30 pack year history and cur- Safety rently smoke or quit smoking less than or equal The USPSTF now recommends screening for to 15 years prior [ 77 ]. Screening should be based IPV (more commonly known as intimate partner on these elements of a patient’s history, with violence but recognized that violence can occur awareness that SGM are more likely to meet in a broader context) for women of child-bearing these criteria than the general population [78 ]. Of age, and fi nds insuffi cient evidence for screening course, SGM who use tobacco also have height- the rest of the general primary care population ened risks for the effects of smoking other than [80 ]. Numerous studies demonstrate that LGBT lung cancer, such as chronic obstructive pulmo- people are at higher risk of intimate partner vio- nary disease, cardiovascular disease, and other lence and overall violence victimization than the non-lung cancers. general population, likely associated with additional stressors such as experiences of stigma and Bone Density discrimination, internalized homophobia, and the Bone density screening is somewhat controversial threat of being “outed” [81 ]. Helpful screening even in the general population. Four organizations tools to use in primary care are listed and included have somewhat different recommendations, but in the CDC’s guide [82 ]. PCPs should also be generally converge on dual-energy X-ray absorp- aware of community resources or hotlines to tiometry (DXA) screening at least once for all which to refer victimized patients as safely as women age 65 and older or those under age 65 possible. Attention to mental health conse- with risk factors for osteoporosis (smoking, his- quences and specifi c state laws regarding report- tory of signifi cant corticosteroid exposure, low ing of violence are also important roles of PCPs. weight, strong family history) [ 79]. There is not For more specifi c information on violence and yet agreement on the frequency or duration of LGBT health, see Chap. 10 . screening, nor whether to screen routinely in men. Transgender patients present a challenge, as the Substance Use and Abuse effects of cross-sex hormones on bone density are not well understood. In particular, the effects of Tobacco Tobacco use is up to two times more testosterone on bone density for FTM are common in LGB versus heterosexuals [78 , 83 – unknown. The UCSF primary care protocols rec- 86 ]. Although LGB tobacco use studies consis- ommend starting screening at age 50–60 based on tently demonstrate this risk behavior disparity, presence or absence of ovaries and duration of transgender persons have only recently been testosterone therapy [35 ] (see also “Part V”, included in tobacco research. In a 2009–2010 Chaps. 18 – 21 ). Note than some FTM, however, nationally representative survey, 32.8 % of chose to taper to lower doses or off testosterone transgender-inclusive LGBT individuals reported after surgical or natural menopause and should current smoking, versus 19.5 % of heterosexuals also be considered for DXA screening at that [ 87]. In the National Transgender Discrimination time. Estrogen’s effect on bones that have also Survey, the proportion of current smokers (29 % had prior exposure to testosterone is thought to of transwomen and 33 % of transmen) were protect MTF patients from osteoporosis. The pri- higher than the percentage in the general popu- mary care protocols recommend calcium, lation and similar to that of other LGB/LGBT vitamin D and weight bearing exercise without studies [88 ]. 104 K. Fallin-Bennett et al.

Measures of smoking initiation, daily versus Alcohol and Drug Use Compared to heterosex- non-daily smoking, and nicotine dependence are ual women, lesbian and bisexual women report all important elements of tobacco use related to heavier alcohol use and more alcohol r elated health outcomes. These aspects of use are still problems [ 105 ], and greater lifetime use rates of seldom studied in minority populations, but marijuana, cocaine and other illicit drugs [ 106 ]. emerging data suggest that at least in some sub- Compared to heterosexual men, gay and bisexual groups of LGBT adults and adolescents, LGB men report greater lifetime use rates of cocaine, persons are more likely to start smoking younger, marijuana, MDMA, and methamphetamine smoke socially rather than not at all, and among [ 106]. Transgender MTF women report higher regular smokers, to smoke more heavily than het- rates of intravenous drug use [107 ]. Alcohol and erosexuals [84 , 89 ]. Sexual minority adolescents drug use are associated with higher sexual risk- also have higher nicotine dependence scores than taking among gay and bisexual men and MTF their peers [89 , 90 ]. Research on desire to quit transgender women [108 ]. Methamphetamine, and quit attempts among sexual minority groups ecstasy (MDMA), ketamine, LSD and similar is similarly limited mainly to young adult popu- drugs are often referred to as “club drugs” and lations or is local in scope, but generally demon- may be particularly associated with LGBT- strates lower odds of wanting to stop smoking oriented bars and clubs [ 109]. “Poppers” (amyl and reduced quit ratios [86 , 91 ]. nitrite) are inhaled drugs used commonly by Evidence supports the role of minority stress, MSM to enhance sexual sensation and relax the social norms, social isolation, and targeting of anal sphincter [ 110 ]. Even at low frequencies, sexual and gender minority (SGM) people by any illicit drug or excessive alcohol use increases tobacco companies as contributing factors to this risk of HIV and STI acquisition [ 111], and risk disparity. The tobacco industry actively and increases in a dose-dependent manner [ 112 ]. effectively targets advertising and promotion to Alcohol and drugs may be used by LGBT people LGB groups [92 – 95]. Minority stress theory [ 96 ] for a myriad of reasons similar to those associ- is reﬂ ected in studies showing that sexual minori- ated with tobacco use above. Often LGBT people ties experience risk factors for cigarette smoking are marginalized within communities and histori- (e.g. stress, depression, alcohol use) at higher cally have congregated at bars and clubs for rates than the general population, while also socializing. Mental health comorbidities or using experiencing factors unique to sexual minority alcohol and drugs to escape feelings of loneliness groups such as discrimination, stigmatization, and depression can complicate the diagnosis and and victimization [97 ]. Stress among sexual treatment [98 ]. minorities is also associated with mental health measures conditions such as distress, depression, Screening Tools A number of tools , such as the and anxiety, which are in turn related to health SBIRT approach, CAGE, and AUDIT are avail- risk behaviors including smoking and substance able to screen for substance use and abuse in pri- use [96 – 102 ]. Fortunately, there are some prom- mary care settings. A convenient source of multiple ising results from cessation programs focused on online tools is the SAMHSA-HRSA Center for LGBT patients [103 , 104 ]. Integrated Health Solutions [113 ].

Sexual Health Helpful Hint Tobacco use may be the single largest con- STI Screening—MSM According to CDC tribution to mortality among the LGBT reports of multicenter studies, MSM had a prev- community. Screen every patient for tobacco alence of 14.9 % for gonorrhea a nd 11.2 % for use of all types and provide resources for Chlamydia. Moreover, MSM accounted for 62 motivational and behavioral change. % of all primary and secondary syphilis cases in the U.S. between 2005 and 2009, the syphilis 8 Primary Care, Prevention, and Coordination of Care 105

Table 8.2 Primary care STI screening for MSM STI Source/type Indications Timing HIV Serum or oral swab All MSM At least annually Syphilis Serology All MSM At least annually Gonorrhea Urine NAAT Was anal insertive partner in last year At least annually Rectal swab NAAT Was anal receptive partner in last year At least annually Oral swab NAAT Was oral receptive partner in last year At least annually Chlamydia Urine NAAT Was anal insertive partner in last year At least annually Rectal swab NAAT Was anal receptive partner in last year At least annually Hepatitis B HBsAg serology All MSM At least once and periodically until effective vaccination conﬁ rmed HSV-2 Serology Consider if status unknown Periodic for those with negative last HSV-1 status NAAT nucleic acid ampliﬁ cation testing Source: US Public Health Service. Pre-exposure prophylaxis for the prevention of HIV infection in the United States—2014: A clinical practice guideline. Atlanta: CDC; 2014 [115 ]

seroreactivity rate for MSM was 11 % in 2008, and there has been a resurgence of syphilis with Helpful Hint incidence in 2013 double what it was in 2000 Utilize the Centers for Disease Control and (for which there was the lowest ever incidence) Prevention (CDC) Sexually Transmitted in which MSM are the sub-population with the Diseases Treatment Guidelines guidelines greatest increase [114 ]. Many cases of STI are for guidance on screening MSM for STDs . asymptomatic, so screening should be offered even if patients deny symptoms [72 ]. Consensus guidelines for STI screening among MSM from STI Screening in WSW As with HPV infection, the CDC are summarized in Table 8.2 [116 ]. there is evidence of transmission of most STI’s Screening at 3–6 month intervals are indicated between female partners, though transmission is for those with multiple partners, anonymous likely less effi cient for most infections. HIV in partners, or those who have sex along with illicit particular is rare, with only one documented case drug use or whose partners do so. Appropriate considered to be confi rmed as sexually transmit- patient- centered care would also dictate that ted [119 ] and a handful of others in which trans- MSM in long-term monogamous relationships mission was probable but less clear [30 ]. in which both partners have negative STI initial Conversely, bacterial vaginosis, though not an testing could reasonably forego or space out STI STI in the traditional sense, is more common in screening. It is always important to re-assess WSW with consistent strains documented in cou- specifi c sexual history prior to testing. Note that ples [30 , 120]. Because HSV is transmitted simi- testing for anal or oral HPV and its effects larly in various forms of sexual practices, remains controversial. See the section on anal transmission may be more common than most cancer above for more information. Additionally, STIs in WSW . Evidence supports increased prev- some experts would recommend screening for alence of HSV-1 with increasing female partners, both HSV-1 and HSV-2, given increasing rates possibly related to more frequent oral sex [30 , of HSV-1 in genital samples [117 , 118 ], though 121]. As with all patients, a detailed sexual his- there is insuffi cient evidence for an offi cial tory, including lifetime partners and measures recommendation. taken toward safer sex, can help determine risk. 106 K. Fallin-Bennett et al.

(Please refer to Appendix A and Chaps. 5 and 6 counseled about HIV transmission and prevention, for suggested sexual history questions.) Because as well as the risks and benefi ts of PrEP. Patients of unclear risk of transmission, there are no receiving PrEP should be screened for HIV every established STI screening guidelines other than 3 months, and renal function should be assessed Pap screening under the same guidelines as for every 6 months. all women, and the recommendation to screen according to sexual history risk factors [116 ]. Mental and Emotional Health The majority of outpatient treatment for mental STI Screening in Transgender Patients In health disorders is delivered by PCPs rather than general, transgender persons should be screened psychiatrists, psychologists, or social workers. commensurate with the body parts they have and Behavioral and emotional disorders are among their type of sexual activity. A transwoman who the most frequent diagnoses seen in the primary has oral or anal sex with men would therefore be care setting [122 , 123]. The mental health of screened according to guidelines for MSM, while some LGBT patients is particularly infl uenced by a transman who has oral or vaginal sex with constant concealment of true identity, victimiza- women would be screened according to guide- tion or fear of verbal or physical attack, problems lines for WSW. In practice, many trans persons with self-acceptance, and social isolation or lack may not identify in a specifi c category and may be of social support. Lastly, transgender and bisex- in different stages of hormonal or surgical transi- ual identifi ed people can feel isolated from the tion. As with all patients, trans persons may also gay and lesbian community [124 ]. have both male and female (or transgender) part- The U .S. Preventive Services Task Force ners, as well. STI screening in this group must be (USPSTF) recommends screening adults for customized in a patient-centered manner. For depression in clinical practices that have sys- more information, please see Chaps. 16 and 17 . tems in place to assure accurate diagnosis, effective treatment, and follow-up [ 125 ]. The Pre-exposure Prophylaxis Against HIV same screening tools can be used for LGBT (PrEP) In 2014, the US Public Health Service populations [113 ]. Further details on mental and issued recommendations for the use of antiviral emotional health appear in the section below therapy to prevent HIV infection among individ- and in Chap. 10 . uals who are at high risk [115 ]. These recommen- A meta-analysis highlighted the prevalence of dations apply to HIV-negative individuals who mental disorders in lesbians, gay men, and bisex- are at substantial risk of acquiring HIV infection. uals (LGBs) and shows that people who identify This includes anyone who is in an ongoing sexual as lesbian, gay, or bisexual have a higher preva- relationship with an HIV-positive partner. It also lence of mental disorders than heterosexuals includes anyone who is not in a mutually monog- [ 96 ]. One framework for understanding this amous relationship with a partner who recently excess in prevalence of disorders is the concept tested HIV-negative and who also meets any of of minority stress, which helps to explain that the following criteria: (a) MSM who has had anal stigma, prejudice, and discrimination create a sex without a condom in the past 6 months, (b) hostile and stressful social environment that MSM who has been diagnosed with an STI in the causes mental health problems [126 ]. In the past 6 months, (c) heterosexual man or woman LGBT community, self-identifi ed lesbians (and who does not regularly use condoms during sex possibly bisexual women) are at an increased risk with partners of unknown HIV status who are at of overweight and obesity compared to hetero- substantial risk of HIV infection (e.g., people sexual women [12 , 14 ], while gay men tend to who inject drugs or have bisexual male partners). have lower BMI than their straight counterparts PrEP consists of one daily dose of tenofovir and but express higher body dissatisfaction and may emtricitabine, and it is generally well tolerated. be at higher risk for eating disorders [ 16 , 17 ]. Patients who are candidates for PrEP should be PCPs should be aware that body image ideals in 8 Primary Care, Prevention, and Coordination of Care 107 the LGBT community may be different from defi nition of family. LGBT families include couples typical cultural ideals, though those theorized without children, couples with children and/or differences seem to be minimal in recent, popula- stepchildren, single parents with children, multi- tion-based studies [16 , 17 , 22 – 24]. PCPs can ple parents raising children together, “families of increase their detection and understanding of choice” (close friends), and multiple adults in a mental health problems in their LGBT patients committed relationship. PCPs can learn about by knowing the stress processes that underlie their patient’s family structure by asking patients prejudice events and internalized homophobia. who lives at home with them, who helps them The health disparities experienced by LGBT make important health care decisions and inquir- populations derive from a complex network of cul- ing further about the quality of relationships. tural and institutional factors. In part, these dis- When talking with children, physicians should parities appear to stem from culturally sanctioned initially use neutral language such as “parent(s)” stigmatization of sexual and gender minorities, rather than “mom” or “dad.” beginning early in childhood. Bullying at school or in the home is associated with elevated levels of anxiety and depression in LGBT youth, triggering Helpful Hint maladaptive coping behaviors such as early exper- LGBT patients often defi ne ‘family’ very imentation with cigarettes, alcohol, drugs, sexual broadly. activity, and altered eating patterns. LGBT youth are signifi cantly at higher risk for suicidal ideation and attempted suicide [99 , 124 ]. LGBT people are also more likely to experience family rejection and Related to emotional wellbeing and relation- adolescent homelessness. Running away to escape ship health, LGBT couples are particularly vul- mistreatment or abuse drastically increases sexual nerable to the internalization of societal stigma. and substance abuse risk and disrupts educational This can hamper the ability to form safe, strong, and employment opportunities. These factors in nurturing relationships. Lack of family and peer turn contribute to lifelong health disparities expe- acceptance undermines LGBT relationship and rienced by LGBT people [99 ]. contributes to psychological stress. Recent landmark decisions regarding legal marital status for lesbian and gay couples have improved fi nancial Family Models in LGBT Health and legal protections. However, in many states, the benefi ts of marriage remain unavailable, or at Recent groundbreaking publications have raised best, in fl ux for lesbian and gay couples [ 129 ]. awareness of previously unrecognized health PCPs can encourage LGBT families to protect disparities experienced by LGBT populations themselves and their loved ones with legal docu- [127 ]. PCPs can improve the health care of LGBT mentation such as, living wills, medical power of men and women and their families by maintain- attorney/health care proxy, durable power of ing a non-homophobic attitude, being sure to attorney, second parent or joint adoption (where distinguish sexual behavior from sexual identity, available), and sperm donor agreement . communicating clearly and sensitively by using gender-neutral terms, and being aware of how their own attitudes affect clinical judgment. Brief Counseling The American Academy of Family Physicians within the Clinical Visit defi nes family as, “a group of individuals with a continuing legal, genetic, and/or emotional rela- Primary care providers are in a unique position to tionship” [128 ]. PCPs play a special role in identify patients with potential mental health prob- addressing patients’ health from a holistic per- lems and intervene when appropriate. In the pri- spective that acknowledges and honors this broad mary care setting, the mental health assessment 108 K. Fallin-Bennett et al. includes asking patients about their most pressing Once it is established which stage of change the mental health concern and assessing social factors patient is in, brief counseling techniques can be and coping styles. Evidence supports brief inter- tailored to be more effective [ 134 ]. Motivational ventions in primary care and brief interventions Interviewing is one patient-centered approach are especially relevant to the healthcare needs of that can be used to increase motivation to change, LGBT patients, particularly in addressing sub- and has been found to be successful in treating stance abuse and patient activation [130 – 132 ]. addiction. Many health professionals believe it As with any effective counseling modality, can be easily adopted for other forms of behav- effective brief interventions begin with an active ioral change relevant to health promotion in the and empathic therapeutic style that respects primary care setting [28 ]. patient autonomy and places responsibility for change on the patient. The focus of the intervention is on a specifi c problem with the intention of Coordination of Care fi nding a solution that can be objectively measured. The provider incorporates patient values Finding Appropriate Consultants and beliefs into clearly defi ned goals related to specifi c behavior change and enhances patient Although health care providers practice under self-effi cacy so that patients can move toward codes of ethics that insist upon professionalism change [133 ]. and respect for the patient, patients continue to Counseling patients to change their behavior in report experiences of discrimination and insensi- an effort to support mental health (e.g., quitting tive communication or treatment in health care smoking, decreasing alcohol use, exercising, medi- settings [88 , 135 , 136 ]. Studies as late as the early cation adherence) can be a challenge for clinicians, 2000s reveal signifi cant bias of health care pro- particularly in a short amount of time. Evidence viders against LGBT patients [ 137– 140 ], which suggests that simply telling patients to change their have potential to affect patient experiences. How behavior (e.g., eat less, exercise more) is not as do PCPs protect their patients from discrimina- effective as using a patient- centered approach, tory experiences or direct their patients to consul- where the physician attempts to meet the patient tants more culturally competent in LGBT health? “where he or she is at” in terms of internal motiva- Unfortunately there are no standards or certifi cation to change. For example, if the patient is resis- tions demonstrating competence or sensitivity to tant to change, then he or she will likely ignore any which to refer. The GLMA directory is a national recommendations or guidelines. But if the patient database open to providers of all specialties and is already taking steps to make a change, then one can therefore be a resource in terms of screening can take the opportunity to further motivate the consultants for sensitivity [141 ]. Some institu- patient, and to make further suggestions for taking tions, such as Vanderbilt University [142 ], and action and committing to change. Therefore, organizations such as Out, Proud, and Healthy in prior to educating the patient about what changes Missouri [143 ] have also established their own to make, it is recommended that the PCP fi rst provider directories. Many areas of the country, assess the patient’s readiness for making a however, have few to no listings in the GLMA change. This can be accomplished by asking how directory and no local directory. In these areas, important the change seems to the patient, and selecting more sensitive consultants to which to then assessing how confi dent the patient feels in refer the patient, when possible, will be through making the change [28 ]. personal networks and word-of-mouth. Of course, The “transtheoretical model of change” personal networks are not only the most effective proposes that people go through six predictable way to refer in a patient-centered manner in all stages in their process of change. Progress settings, but they also serve to reinforce sensitive through the stages can be slow, and many people and competent care through repeated referrals and regress to earlier stages during the process. personal feedback. 8 Primary Care, Prevention, and Coordination of Care 109

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relationships earlier in life, many have sought to Learning Objectives bring children into the family in a purposeful and well considered fashion. This is a profound • Identify at least three unique parenting chal- change and represents part of broader social lenges faced by LGBT couples and at least acceptance. As proof, in 2013, a nationwide sur- three opportunities to overcome these chal- vey estimated that 28 % of male same sex cou- lenges ( KP4 , PC5 , SBP1 ) ples were raising children, which had grown • Describe outcomes of children raised by considerably from the 5 % estimate in 1990 [1 , LGBT parents (KP3 ) 2 ]. It can be said that growth in gay male parent- • List the current recommendations from ing is proof of establishing this as part of their national medical societies regarding LGBT life course trajectory, fulﬁ lling the developmen- parenting ( PC6 , PBLI3 ) tal task of adulthood proposed by Erikson— generativity (creating contributions that will last As the struggle for LGBT rights has pro- beyond the present) [ 3 ]. In addition, lesbian par- gressed over the past half century, parenting enting has also grown over the recent decades, issues have also received increasing attention. but not nearly as much. Data show that 22–28 % In part, this is due to LGBT people acknowledg- of lesbian households in 1990 had children ing sexual orientation and gender identity compared to 35 % in 2010 [2 ]. Research from throughout the life span. This may include com- the 2011 National Transgender Discrimination ing out after marriage to an opposite sex partner Survey demonstrates that 38 % of transgender and having children. This then leads to the sto- individuals are parents [ 4 ]. Overall, many ries that abound of parents coming out to chil- LGBT people are parenting with substantial dren at all ages. Unfortunately, this often occurs growth over the past decade. with dissolution of a marriage and the conse- However, in spite of this growth, controversy quent heartbreak for all parties involved. continues to exist about LGBT parenting. In par- However, as LGBT people have established ticular, as society discusses same-sex marriage, the key question is almost always about the effect upon the children. This affects families on a C. E. Harris , M.D. (*) deeply personal and emotional level as these Department of Pediatrics , Cedars Sinai Medical concerns are often used in custody battles to pre- Center , 8700 Beverly Blvd., NT-4230 , Los Angeles , CA 90048 , USA vent LGBT people from obtaining custody or, e-mail: [email protected] perhaps, even having any access to their children.

In recent years, the study by Mark Regnerus Demographics of LGBT Parenting attempted to show, using a population based approach, negative outcomes for children who Data provided by the Williams Institute estimate had one parent in a “same-sex romantic relation- that 37 % of LGBT identifi ed individuals have ship” at some point during childhood [5 ]. had a child at some time in their lives. It is esti- However, his study used improper sampling mated that three million LGBT Americans have a technique and the results have been called into child; conversely as many as six million American question. More important, the ethics of the study children or adults have had an LGBT parent. itself has been found wanting as the funders of Same sex couples are four times more likely than the study directed the methods and the results of their different sex counterparts to be raising an the research [6 ]. However, in spite of this, these adopted child. In addition, LGBT couples are six results has been used to justify animus toward times more likely to be raising foster children. LGBT people throughout the world. Because of Nearly 40 % of persons in same-sex couples rais- concern ‘for the children’, it is important that ing children are persons of color. Children of les- physicians and other healthcare providers be con- bian or gay couples are also more likely to be versant in the issues discussed in this chapter. members of racial or ethnic minorities. Among As LGBT people come out and establish rela- non-white individuals in same sex couples, tionships, children arrive by various means. one-third are raising a child compared to 18 % of Surrogacy is the process of carrying a pregnancy their white counterparts [1 ]. for intended parents. This may involve transfer of With regard to geography of LGBT parents, it an embryo created by in vitro fertilization such is found that these families are most common in that the child is not related to the surrogate. In the South, Mountain West and Midwest areas of traditional surrogacy, the fertilization may occur the US. In particular, the states with the highest naturally or artifi cially with the baby being proportions of same sex couples with children are related to the woman carrying the fetus to deliv- Mississippi, Wyoming, Alaska, Idaho and ery. Gestational surrogacy involves fertilization Montana. LGBT families are found in 96 % of of an egg from a donor with sperm that may or US counties [1 ]. may not belong to the father. Surrogacy is per- Economic factors must also be considered for formed with the assistance of an agency that can LGBT families. Analysis of data gathered in the assist with both medical and legal issues. Much Gallup Daily Tracking Survey in 2012 show that case law has been established over the years that there are some characteristics of LGBT families clearly delineate the rights and responsibilities that are associated with a greater likelihood of for all parties concerned. being in poverty. Based on this national data set, Adoption has been known as a way to create LGBT families are more likely to be female, families and can also take place through various younger and be a member of a racial or ethnic forms. Agency adoptions employ the services of a minority. In particular, single and married LGBT state licensed organization that will interview and adults raising children were more likely to report assess the prospective parent for the demands of incomes less than the poverty threshold [1 ]. In childrearing. A home study is also done to ensure addition, certain governmental programs estab- that child safety measures are in place in the lished to assist families under fi nancial stress domicile. Often, health and fi nancial assessments may not provide services to LGBT families due may be needed along with letters of recommenda- to the offi cial defi nition of ‘family’. For example, tion. Once completed, a family may be deemed Temporary Assistance for Needy Families only suitable to adopt. Some agencies also work within recognizes legal parents of a child or children the foster care system to assist children who have when considering the ‘assistance unit’. Given the been brought into the care of the state. Once variety of state laws on gay marriage, obviously, parental rights have been terminated, these chil- this can create major hardship for parents and dren are then made available for adoption. children alike [7 ]. 9 LGBT Parenting 117

Legal Issues for LGBT Families In the case of surrogacy, some states provide legal recognition as a parent to the person who Most regulation of p arenting rights and responsi- donated either egg or sperm; certainly this is con- bilities is codiﬁ ed in state law. This then leads to trary to the wishes of the parents involved. There wide variation for LGBT families. For example, is also case law where the legality of a surrogacy depending upon the state, dissolution of a contract is questioned, leading to the potential of relationship may be impossible if parents have children being removed from the home of the gotten married in a state that recognizes same sex intended parent. The best known case occurred in marriage, but wish to divorce in the home state New Jersey, Robinson vs. Hollingsworth [ 8 ]. which does not. In this instance, simple access to This case lasted for years in the New Jersey the court is denied, contrary to the ideals of due Superior Court. The eventual ﬁ nding was that process and equal access embodied in the contracts for surrogacy were invalid in New Constitution. Further, there are many states that Jersey. Fortunately, however, the court found outlaw two parent adoptions by LGBT couples. that, in order to preserve the stability of the home The same is true for families that wish to provide for the girls, it was best for them to remain with foster care where prohibitions may be absolute. the same-sex parents. See Fig. 9.1 .

Fig. 9.1 Gay adoption in North America as of December 2013 (image courtesy, J. Ehrenfeld) 118 C.E. Harris

Also, in situations involving end of life and all things; parents will feel tremendous stress by survivorship, Social Security benefi ts and veter- not being able to ensure a safe and secure family ans’ survivor benefi ts may not automatically be environment . transferred to the surviving spouse. This, obviously, may have major implications for the fi nancial well-being of a family after a tragic loss. In Outcomes for Children particular, this may leave children without health insurance benefi ts or even access to the surviving Given that children exist within LGBT families, spouse if the couple lived in a state without legal it is indeed reasonable to ask how children fare recognition of the relationship. Other benefi ts in this environment. As clinicians, our goal is to that automatically accrue to a married spouse ensure that children have optimal physical, include the ability to provide consent for medical emotional and social health. Obviously, we care on a routine or emergent basis. In addition, would want to base our assessment on rigorous many couples have reported that travel as a same- investigation using the best scientifi c methods. sex couple involves the constant need to provide Fortunately, several researchers have accepted documentation of the relationships in the family. this challenge and provide valuable insight into Sometimes, even with proof of birth certifi cates the key question: How do the children do? and legal orders, various offi cials may still harbor Dr. Nanette Gartrell has provided valuable suspicion about the family makeup. insight into this question with the National Many families with signifi cant immigration Longitudinal Lesbian Family Study. This study challenges are parenting. Data analyzed over the began in 1986 by selecting a cohort of families past decade show that nearly 80,000 binational comprised of lesbian mothers with children con- families, dual non-citizen families and dual citi- ceived by artifi cial insemination. All mothers zen families are raising 40,700 children [9 ]. Due identifi ed as lesbian at the time of enrollment. to current US immigration policy, opposite sex Studied as toddlers, 5 year olds, 10 year olds and married couples are treated differently than same- as adolescents, these young people have provided sex couples. Couples with one citizen or perma- remarkable data in areas such as health, division nent resident would benefi t from procedures that of household labor, relationship satisfaction, par- expedite application for the non-citizen partner. enting style and experience of discrimination. Legislation has been proposed (Uniting American As toddlers, mothers had children who were, in Families Act) in both the US House and Senate general, very healthy. They found that relation- that would change immigration regulations to ships with extended family had improved once the make a same sex partner equivalent to spouse. children were born; conversely, career became Hopefully, as more states grant LGBT couples less important as children were added [ 10 ]. As equivalent legal status in marriage, the tide will 5 year olds, the mothers again reported that the shift and this legislation will pass. children were healthy and developing normally. In summary, there are a multitude of laws that The stress of parenting was acknowledged by deny same sex couples equality when compared many mothers with some of the families having to opposite sex couples. Ranging from health- divorced in the 3 year interval. Children had care to taxation, the impact of this unequal treat- experienced some homophobic attitudes and ment is especially marked on those who have no mothers had been deliberate in providing chil- access to petition for proper protection. Indeed, dren with tools to handle this discrimination. by their very nature, these rules denigrate and They also had sought out schools that were demean LGBT families. Much effort must go diverse in many ways; indeed, children had toward ensuring the children in these families diverse groups of friends as a result [ 11 ]. When that their family constellation is just as valid and the children had reached 10 years of age, indi- stable as other families in society. Like all chil- vidual personal interviews were performed using dren, they must rely on parents for assistance in a standard psychological instrument. In addition, 9 LGBT Parenting 119 the Child Behavior Checklist was given to the chil- bisexual people. Studying 91 adults raised by dren’s mother and used to assess competencies non-heterosexual parents, it was found that this and behavioral/emotional problems. Domains group predominantly was reared by coupled les- analyzed include school functioning and extra- bian mothers. The sexual orientation of the par- curricular activities, such as sports and hobbies. ent became known early in life (~7 years). The Based on the mothers’ report, the children in the educational attainment of the subjects was high study were developmentally normal. The only with approximately two-thirds having a college difference noted was that the girls in the study degree. Positive psychological adjustment was group had lower scores on the Externalizing routinely noted in the subjects; in particular, behavior scale, indicating fewer problems in this average to high life satisfaction was found. area. More than 40 % of the children had experi- Results showed that two particular factors corre- enced homophobic attitudes about their family; lated with social climate. First, voting patterns they were very well prepared with responses to refl ecting a majority Democratic zip code, favor- insults made. The mothers also reported that they able local policies regarding LGB adoption, hate also spoke up when racist or sexist remarks were crimes and employment non-discrimination uttered in their presence [12 ]. In summary, the showed a positive correlation. Second, the demo- youngsters were resilient and thriving after the graphic components of the local population (size fi rst decade of life. of the overall population along with number and The next time point for assessment of the chil- percentage of households headed by same-sex dren occurred at 17 years; again the Child Behavior couples) combined to create a second factor that Checklist was used to assess social functioning as correlated with a favorable social climate. These well as potential emotional or behavioral prob- fi ndings certainly correlate with those suggested lems. Interviews with the mothers and an online by theories regarding minority stress—members questionnaire of the adolescents themselves of minority groups living in more tolerant areas showed that there was higher rating on social, aca- are subjected to less stress compared to those liv- demic and total competences areas and less social, ing in areas with negative social climate [15 ]. rule-breaking, aggressive and problem behavior Another study using the National Longitudinal than an age matched control group of American Study of Adolescent Health data set evaluated the teenagers [13 ]. The research team has also investi- adjustment of teens growing up in a lesbian- gated the sexual behaviors and sexual orientation headed household. They were compared to a of the teens, using the Kinsey scale [14 ]. None of matched group living with opposite sex parents. the teens had been sexually abused. When assess- There were no signifi cant differences in psycho- ing the age of fi rst sexual contact, the researchers logical well-being (self-esteem, anxiety), mea- found that, compared to the national sample, the sures of school outcome (grades, diffi culties in children of the lesbian couples were signifi cantly school), or measures of family relationships [13 ]. older at fi rst sexual contact. None of the girls of Regarding the developmental tasks of adoles- lesbian parents had become pregnant as late teens, cents, the teens raised by lesbian women were as though the difference from the representative likely to have been in a romantic relationship sample was not statistically signifi cant. Overall, over the prior 18 months. There were no signifi - this research is vitally important in show that the cant differences in peer relationships, self- children of lesbian mothers are well adjusted emo- reported use of substances or peer victimization tionally and have normal maturation in matters of between the two groups of teens [14 ]. In summary, sexual development. this investigation, using a large sample represen- Other researchers have looked at the well tative sample of adolescents from across the US, being of adults reared by lesbian, gay and bisex- shows that having same-sex parents is associated ual parents. Dr. Patterson and colleagues have with normal developmental outcomes. evaluated how social climate of a given locale The considered conclusion of much research affects levels of stress in the offspring of gay and all confi rm the fact that children of LGBT parents 120 C.E. Harris do very well in multiple spheres of life. No In a commentary for the American Journal of behavioral problems are found. Academically, Public Health, Dr. Buffi e delineates how the children are as intelligent as peers. In unequal treatment leads to adverse health out- particular, regarding sexual orientation and gen- comes and why marriage is important in ame- der identity, the great concern that the children liorating those outcomes [ 17]. The continuous will be somehow harmed by their parents is stress of dealing with one’s minority status in proven patently false. In addition, the sexual ori- our society leads persons to devalue themselves entation and gender identity conforms to statisti- as one’s stature in society is continually ques- cal norms. These data should ensure that all who tioned. Often the invisibility of lesbian and gay must make decisions about child welfare will people compounds this stress. Internalizing this consider factors other than the sexual orientation stress can then lead to behaviors that are self- of the parents involved . destructive. Conversely, in a very concrete fashion, marriage improves health by increasing access to health insurance. Many companies and municipalities reserve spousal Marriage and Health insurance benefi ts for those who are civilly married. Perhaps, even more importantly, the In June 2013, the United States Supreme Court psychology of marriage is vital, also. In review- had a docket that would forever change the landing data collected by Massachusetts, the fi rst scape of American culture. Hearing the cases of state to recognize same-sex marriage, members Hollingsworth vs. Perry and United States vs. of married same sex couples stated that they felt Windsor, the court had to wander into the thicket more committed to their partners after having of society’s approval or approbation of same-sex been accorded offi cial state recognition. marriage. The case of United States vs. Windsor Children in these families overwhelmingly felt decided that the Defense of Marriage Act vio- happier and better off after receiving society’s lated the Due Process Clause of the Fifth approval. Other data show that married same- Amendment of the Constitution [ 16 ]. Stating sex couples are more connected to families of poetically, origin. Married couples, whether gay or straight, The differentiation (of marriages) demeans the are less depressed and show less anxiety. couple…whose relationship the State has sought to Couples who have wed are less likely to engage dignify....it humiliates tens of thousands of children now being raised by same-sex couples. The law in in behavior that is associated with sexually question makes it even more diffi cult for the chil- transmitted infection. This then shows the mul- dren to understand the integrity and closeness of tiple ways that marriage improves society—the their own family and its concord with other families couple is strengthened, the children are happier, in their community and in their daily lives…Under DOMA, same-sex married couples have their lives families are more connected and, in general, burdened, by reason of government decree, in visi- health is improved. ble and public ways. By its great reach, DOMA touches many aspects of married and family life, from the mundane to the profound. Healthcare Organization The effect of this ruling has been a rapid and Statements on LGBT Parenting steady progression of rulings declaring that same- sex marriages are proper for state recognition. The Many different healthcare organizations have speed with which these rulings have occurred is made statements regarding same-sex parenting. nearly dizzying. Also, it has been associated with major changes in how society views same-sex American Medical Association marriage. Multiple polls by various public opinion Health Care Disparities in Same Sex Partner organizations confi rm that the majority of Households Our American Medical Association: Americans now approve of same-sex marriage. (1) recognizes that denying civil marriage based But does this have any bearing on health? on sexual orientation is discriminatory and 9 LGBT Parenting 121 imposes harmful stigma on gay and lesbian indi- healthy families that are able to meet the needs of viduals and couples and their families; (2) recog- their children. In particular, the AAP supports: nizes that exclusion from civil marriage contributes to health care disparities affecting 1. Marriage equality for all capable and consent- ing couples, including those who are of the same-sex households; (3) will work to reduce same gender, as a means of guaranteeing all health care disparities among members of same- federal and state rights and benefi ts and long- sex households including minor children; and (4) term security for their children. will support measures providing same-sex house- 2. Adoption by single parents, coparents adopting together or a second parent when 1 parent is holds with the same rights and privileges to already a legal parent by birth or adoption, health care, health insurance, and survivor bene- without regard to the sexual orientation of the fi ts, as afforded opposite-sex households [18 ]. adoptive parent(s). Health Disparities Among Gay, Lesbian, 3. Foster care placement for eligible children to qualifi ed adults without regard to their sexual Bisexual and Transgender Families Our AMA o rientation [ 22 ] . will work to reduce the health disparities suffered because of unequal treatment of minor children American Psychiatric Association and same sex parents in same sex households by The American Psychiatric Association supports supporting equality in laws affecting health care same-sex marriage as being advantageous to the of members in same sex partner households and mental health of same-sex couples and supports their dependent children [19 ]. legal recognition of the right for same-sex cou- Partner Co-adoption Our AMA will support ples to marry, adopt and co-parent. [ 23 ]. legislative and other efforts to allow the adoption of a child by the same-sex partner, or opposite American Psychological Association sex non-married partner, who functions as a sec- Child Custody or Placement The sex, gender ond parent or co-parent to that child [20 ]. identity, or sexual orientation of natural, or prospective adoptive or foster parents should not be the sole or primary variable considered in cus- American Academy of Pediatrics tody or placement cases [24 ]. Coparent or Second-Parent Adoption by Same- Sexual Orientation & Marriage …Therefore Sex Parents …Children born or adopted into be it resolved that the APA believes that it is families headed by partners who are of the same unfair and discriminatory to deny same-sex cou- sex usually have only 1 biologic or adoptive legal ples legal access to civil marriage and to all its parent. The other partner in a parental role is attendant benefi ts, rights, and privileges; called the “coparent” or “second parent.” Because Therefore be it further resolved that APA shall take these families and children need the permanence a leadership role in opposing all discrimination in and security that are provided by having 2 fully legal benefi ts, rights, and privileges against same- sanctioned and legally defi ned parents, the sex couples; Academy supports the legal adoption of children Therefore be it further resolved that APA encourages psychologists to act to eliminate all discrimi- by coparents or second parents. Denying legal nation against same-sex couples in their practice, parent status through adoption to coparents or research, education and training (American second parents prevents these children from Psychological Association, 2002); enjoying the psychologic and legal security that Therefore be it further resolved that the APA shall provide scientifi c and educational resources comes from having 2 willing, capable, and loving that inform public discussion and public policy parents… [21 ] development regarding sexual orientation and mar- Promoting the Well-Being of Children Whose riage and that assist its members, divisions, and Parents Are Gay or Lesbian The AAP works to affi liated state, provincial, and territorial psychological associations [25 ]. ensure that public policies help all parents, regardless of sexual orientation and other charac- Sexual Orientation, Parents, & Children teristics, to build and maintain strong, stable and Therefore be it resolved that the APA opposes 122 C.E. Harris any discrimination based on sexual orientation in quality research that extends our understanding of matters of adoption, child custody and visitation, the lesbian, gay, and bisexual population, including the role of close relationships and family for- foster care, and reproductive health services; mation on the health and well-being of lesbian, Therefore be it further resolved that the APA gay, and bisexual adults and youths; believes that children reared by a same-sex couple Be it further resolved that the American benefi t from legal ties to each parent; Therefore be Psychological Association encourages psycholo- it further resolved that the APA supports the pro- gists and other professionals with appropriate tection of parent-child relationships through the knowledge to take the lead in developing interven- legalization of joint adoptions and second parent tions and in educating the public to reduce preju- adoptions of children being reared by same-sex dice and discrimination and to help ameliorate the couples; Therefore be it further resolved that APA negative effects of stigma; shall take a leadership role in opposing all discrim- Be it further resolved that the American ination based on sexual orientation in matters of Psychological Association will work with govern- adoption, child custody and visitation, foster care, ment and private funding agencies to promote and reproductive health services; Therefore be it such research and interventions to improve the further resolved that APA encourages psycholo- health and well-being of lesbian, gay, and bisexual gists to act to eliminate all discrimination based on people [ 26 ] . sexual orientation in matters of adoption, child custody and visitation, foster care, and reproductive health services in their practice, research, edu- American Academy of Child and Adolescent cation and training (American Psychological Psychiatry Association, 2002); Therefore be it further resolved that the APA Gay, Lesbian, Bisexual, or Transgender Parents. shall provide scientifi c and educational resources All decisions relating to custody and parental that inform public discussion and public policy rights should rest on the interest of the child. There development regarding discrimination based on is no evidence to suggest or support that parents sexual orientation in matters of adoption, child who are lesbi an, gay, b isexual, or transgender are custody and visitation, foster care, and reproduc- per se superior or inferior from or defi cient in tive health services and that assist its members, parenting skills, child-centered concerns, and divisions, and affi liated state, provincial, and terri- parent- child attachments when compared with torial psychological associations [25 ]. heterosexual parents. There is no credible evidence Resolution on Marriage Equality for Same- that shows that a parent’s sexual orientation or gender identity will adversely affect the develop- Sex CouplesTherefore be it resolved that the ment of the child. American Psychological Association supports Lesbian, gay, bisexual, or transgender individu- full marriage equality for same-sex couples; als historically have faced more rigorous scrutiny than heterosexual people regarding their Be it further resolved that the American rights to be or become parents. The American Psychological Association reiterates its opposition Academy of Child & Adolescent Psychiatry to ballot measures, statutes, constitutional amend- opposes any discrimination based on sexual ori- ments, and other forms of discriminatory policy entation or gender identity against individuals in aimed at limiting lesbian, gay, and bisexual people’s regard to their rights as custodial, foster, or adop- access to legal protections for their human rights, tive parents [ 27]. including such measures as those that deny same- sex couples the right to marry; Be it further resolved that the American Psychological Association calls on state govern- Summary ments to repeal all measures that deny same-sex couples the right to civil marriage and to enact laws to provide full marriage equality to same-sex LGBT people have experienced tremendous couples; growth in visibility over the past generation. Be it further resolved that the American For many LGBT people, the dream of children Psychological Association calls on the federal government to extend full recognition to legally seemed to vanish during the coming out pro- married same-sex couples, and to accord them all cess; time, however, has past, society has of the rights, benefi ts, and responsibilities that it changed and, through concerted effort and provides to legally married different-sex couples; expense, family has been created. For others, Be it further resolved that the American Psychological Association encourages psycholo- coming out after marriage and children was part gists and other behavioral scientists to conduct of a particular life course. Nonetheless, for all 9 LGBT Parenting 123 of these variously constructed families, children of toddlers. Am J Orthopsychiatry 1999;69(3): of LGBT parents are a reality. Many social sci- 362–369. entists have taken on the task of asking the 11. Gartrell N, Banks A, Reed N, et al. The National Lesbian Family Study: 3. Interviews with mothers question: Are the children ok? Overwhelmingly, of fi ve-year-olds. Am J Orthopsychiatry 2000; the answer is affi rmingly positive. They have 70(4):542–548. normal peers. They do well in school. They 12. Gartrell N, Rodas C, Deck A, et al. The USA aren’t troubled emotionally or psychologically. National Lesbian Family Study: Interviews with Mothers of 10-Year-Olds. Feminism & Psychology Most importantly, they grow up to be accepting 2006;16(2):175–192. people who love their parents. We should wish 13. Gartrell N, Bos H. US National Longitudinal this for ALL of our children. Lesbian Family Study: Psychological Adjustment of 17-Year-Old Adolescents. Pediatrics 2010; 126(1):28–36. 14. Gartrell NK, Bos HMW, Goldberg NG. Adolescents References of the U.S. National Longitudinal Lesbian Family Study: sexual orientation, sexual behavior, and 1. Gates GJ. LGBT parenting in the United States. Los sexual risk exposure. Arch Sex Behav 2011;40(6): Angeles, CA: Williams Institute at UCLA Law 1199–209. School; 2013. http://williamsinstitute.law.ucla.edu/ 15. Lick DJ, Tornello SL, Riskind RG, et al. Social wp-content/uploads/LGBT-Parenting.pdf . Climate for Sexual Minorities Predicts Well-Being 2. Bradford J, Barrett K, Honnold JA. The 2000 census Among Heterosexual Offspring of Lesbian and Gay and same-sex households: a user’s guide. New Parents. Sex Res Soc Policy 2012;9:99–112. York: The National Gay and Lesbian Task Force 16. United States vs. Windsor, 570 U.S. ____(2013). Policy Institute, The Survey and Evaluation (Docket NO. 12–307). Research Laboratory, and The Fenway Institute; 17. Buffi e WC. Public Health Implications of Same- 2002. www.ngltf.org . Sex Marriage. Am J Public Health 2011;101(6): 3. Erikson JM, Erikson EH. The Life Cycle Completed. 986–90. New York, NY: WW Norton; 1997. 18. Health Care Disparities in Same Sex Partner 4. National Center for Transgender Equality and Households. American Medical Association. https:// National Gay and Lesbian Task Force. Injustice at www.amaassn. org/ssl3/ecomm/PolicyFinderForm. Every Turn: A Report of the National Transgender pl?site=www.ama-assn.org&uri=/resources/html/ Discrimination Survey. http://www.thetaskforce. PolicyFinder/policyfi les/HnE/H-65.973.HTM org/static_html/downloads/reports/reports/ntds_ 19. Health Disparities Among Gay, Lesbian, Bisexual full.pdf . Published on February 4, 2011. Accessed and Transgender Families. American Medical December 3, 2013. Association. https://www.amaassn.org/ssl3/ecomm/ 5. Regnerus, M. How different are the adult children of PolicyFinderForm.pl?site=www.ama-assn.org& parents who have same-sex relationships? Findings uri=/resources/html/PolicyFinder/policyfi les/DIR/ from the New Family Structures Study. Soc Sci Res D-65.995.HTM 2012; 41(4): 752–70. 20. Partner Co-Adoption. American Medical 6. The Regnerus Fallout. Human Rights Campaign. Assocation. https://www.ama-assn.org/ssl3/ecomm/ http://www.regnerusfallout.org/ Accessed November PolicyFinderForm.pl?site=www.amaassn.org&uri= 15, 2015. %2fresources%2fhtml%2fPolicyFinder%2fpolicyfi 7. Movement Advancement Project, Family Equality les%2fHnE%2fH-60.940.HTM . Council and Center for American Progress, “All 21. Coparent or Second-Parent Adoption by Same-Sex Children Matter: How Legal and Social Inequalities Parents. Pediatrics 2002;109(2):339–40. Hurt LGBT Families, “ October 2011, (Condensed 22. Promoting the Well-being of Children whose Version). Parents are Gay or Lesbian. Pediatrics 2013; 8. N.J. gay couple fi ght for custody of twin 5-year-old 131(4):827–30 girls. NJ.com http://www.nj.com/news/index.ssf/ 23. Position Statement on Issues Related to 2011/12/nj_gay_couple_fight_for_custod.html Homosexuality. American Psychiatric Association. Accessed January 17, 2014. http://www.psychiatry.org/File%20Library/Learn/ 9. Konnoth CJ, Gates GJ. Same-sex couples and immi- Archives/Position-2013-Homosexuality.pdf . gration in the United States. Williams Institute, Retrieved November 23, 2015. UCLA; May 2014. Retrieved from http://william- 24. Conger, J.J. (1977). Proceedings of the American sinstitute.law.ucla.edu/wp-content/uploads/Gates- Psychological Association, Incorporated, for the Konnoth-Binational-Report-Nov-2011.pdf . year 1976: Minutes of the Annual Meeting of the 10. Gartrell N, Banks A, Hamilton J, et al. The National Council of Representatives. American Psychologist, Lesbian Family Study: 2. Interviews with mothers 32, 408–438. 124 C.E. Harris

25. Paige, R.U. (2005). Proceedings of the American http://www.apa.org/about/policy/samesex.aspx . Psychological Association, Incorporated, for the Retrieved December 3, 2013. legislative year 2004. Minutes of the meeting of the 27. Gay, Lesbian, Bisexual, or Transgender Parents. Council of Representatives July 28 & 30, 2004, American Academy of Child & Adolescent Psychiatry. Honolulu, HI http://www.aacap.org/AACAP/Policy_Statements/2008/ 26. Resolution on Marriage Equality for Same Sex Gay_Lesbian_Bisexual_or_Transgender_Parents.aspx . Couples. American Psychological Association. Retrieved December 3, 2013. Intimate Partner Violence 10 Tulsi Roy

Purpose Introduction

The purpose of this chapter is to defi ne intimate Intimate partner violence (IPV) is defi ned as the partner violence, explore the issues around this physical, emotional, psychological, or sexual complex and sensitive topic, outline challenges harm infl icted on an individual by a current or for- unique to LGBT communities, and provide clini- mer partner or spouse. IPV describes patterns of cians guidance to confront and address this pub- abusive behavior used by one partner to gain or lic health challenge. maintain control over the other, including physical and sexual violence or threats of violence, social isolation, psychological aggression, stalk- Learning Objectives ing, economic deprivation, neglect, and controlling a partner’s sexual or reproductive health. After reading this chapter, learners will be able to: According to the National Intimate Partner and Sexual Violence Survey (NIPSVS), more than • Discuss the risk factors, effects on health, and one in three women (35.6 %) and more than one public health impact that intimate partner vio- in four men (28.5 %) in the United States have lence (IPV) has on LGBT communities (PC5) experienced rape, physical violence, and/or stalk- • Identify at least three differences in individual ing by an intimate partner in their lifetime [1 ]. It and structural challenges in addressing IPV is estimated that the costs of intimate partner rape, for same-sex relationships compared to physical assault, and stalking exceed $5.8 billion opposite- sex relationships (KP4, SBP1) each year, nearly $4.1 billion of which is for direct • Discuss forms of abuse and social challenges medical and mental health care services. Many exclusively faced by transgender individuals survivors of these forms of violence can experi- (KP3, PC3, SPB4 ) ence physical injury, mental health consequences • Discuss opportunities for healthcare providers to such as depression, anxiety, low self-esteem, and communicate with LGBT patients, address, and suicide attempts, and physical health conse- document concerns about IPV (ICS1, ICS2) quences such as gastrointestinal disorders, substance abuse, sexually transmitted diseases, and gynecological or pregnancy complications [1 ]. T. Roy , M.Sc., M.D. (*) University of Chicago Medical Center , Chicago , IL , USA These consequences can lead to hospitalization, e-mail: [email protected] homelessness, disability, or death.

The effects of IPV are wide reaching, affecting major obstacle in addressing IPV in a systematic not just those abused, but also their families, friends, and effective way. This confusion stems from the businesses, and economic productivity. The total development of terminology within multiple dis- costs of IPV include nearly $0.9 billion in lost pro- parate domains: healthcare, social services, and ductivity from paid work and household chores for the legal system. Lawmakers now face the task of those suffering from nonfatal IPV and $0.9 billion consolidating different operative legal defi nitions in lifetime earnings lost by victims of IPV homicide from 50 states, which may differ from those defi - [2 ]. Though IPV has been a serious and preventable nitions used by professionals in violence and public health issue for decades, until a signifi cant abuse prevention [5 ]. grassroots movement gained momentum in the late In order for physicians to adequately respond to 1970s and 1980s, little in the way of research or such sensitive issue, they must familiarize them- policy addressed it, due in part to the lack of aware- selves with some basic terminology: ness and stigma surrounding IPV and abuse [3 ]. Physical violence and/or abuse is the inten- Furthermore, despite the signifi cant burden of vio- tional use of physical force or power, threatened lence, only limited policies, procedures, and pro- or actual, against another person or against one- grams have been enacted to address this costly and self or against a group of people, that results in or preventable public health challenge. has a high likelihood of resulting in injury, death, The LGBT community in particular faces psychological harm, or deprivation. Physical vio- unique challenges regarding IPV. Research sug- lence or abuse includes, but is not limited to gests that prevalence of IPV is at least as high for scratching, pushing, shoving, throwing, grab- same-sex couples compared to their opposite-sex bing, biting, choking, shaking, hair pulling, slap- counterparts [4 ]. Same-sex IPV is more likely to ping, punching, hitting, burning, and use of go unacknowledged and less likely to be addressed restraints or one’s body, size, or strength against adequately by healthcare providers, law and policy another person. The unwarranted administration makers, educators, and social services. of drugs and physical restraints, force-feeding, Traditionally, addressing IPV was under the and physical punishment of any kind are addi- exclusive purview of the legal system and penal tional examples of physical abuse. Physical vio- code, but as focus shifts towards a more holistic lence includes, but is not limited to, use of a approach to IPV prevention and treatment of indi- weapon against a person [6 ]. viduals suffering from abuse social workers and Sexual violence and/or abuse is divided into healthcare providers serve a critical role as fi rst- three categories: (a) the use of physical force to line responders to survivors. History, however, compel a person to engage in a sexual act against refl ects a failure on the part of physicians to ade- his or her will, whether or not the act is com- quately address IPV, particularly for the LGBT pleted; (b) an attempted or completed sex act community, due to lack of cultural competency, involving a person who is unable to consent to paucity of resources, and incomplete or absent the act or understand the nature or condition of educational tools. This chapter will explore the the act, to decline participation, or to communi- issues around this complex and sensitive topic, cate unwillingness to engage in a sexual act due outline challenges unique to LGBT communities, to age, illness, disability, infl uence of alcohol or and provide clinicians guidance to confront and other drugs, intimidation or pressure; and/or (c) address this public health challenge. abusive sexual contact. Sexual contact includes, but is not limited to, unwanted touching, and sexually explicit photographing [6 ]. D e fi ning Abuse Psychological/emotional abuse encompasses a range of verbal and mental methods designed to The lack of standardized defi nitions of abuse and emotionally wound, coerce, control, intimidate, violence contributes to a failure in cultural com- harass, insult, and psychologically harm. Isolation petency on the part of physicians and remains a and withholding of information from the target of 10 Intimate Partner Violence 127 said behaviors also falls under this title of psycho- violence in both same-sex and opposite-sex logical aggression and emotional abuse [6 ]. relationships [ 8]. In a cross-sectional study of As with any complicated social dynamic, defi - MSM, depression and substance abuse were nitions of abuse and violence are informed in among the strongest correlates of intimate part- large part by their historical and cultural context ner violence [9 ]. Risk markers and correlates of and the evolving boundaries and challenges of intimate violence in same-sex relationships are relationships and commitments. The complexity notably similar to those associated with hetero- and depth of social and romantic interaction may sexual partner abuse. An extended list of factors make it especially diffi cult at times to clearly can be viewed in Table 10.1 . delineate abuse or violence from poor confl ict management skills, especially in conditions of psychological aggression and emotional abuse. For this reason, it is necessary to examine the Table 10.1 Risk factors for perpetration of violence intent or function of the violence in each couple. Multiple factors infl uence the risk of perpetrating IPV Domination, intimidation, degradation, and con- [13 , 14 ]: trol may also be elements of abusive intimate • History of physical or psychological abuse partner violence, wherein a partner seeks to con- • Prior history of being physically abusive trol the thoughts, beliefs or conduct of the other • Low self-esteem or to punish the other partner [7 ]. • Low income • Low academic achievement • Young age Etiologies and Epidemiology • Involvement in aggressive or delinquent behavior as a youth Violence is a preventable outcome of a series of • Heavy alcohol and drug use learned behaviors in which aggressors try to main- • Anger and hostility • Personality disorders and mood disorders tain control of their partners. While there is no sin- • Unemployment gular etiology for violence, abuser tend to blame • Economic stress life stressors or unfulfi lled expectations for their • Emotional dependence and insecurity outbursts, and often individuals suffering from • Belief in strict gender roles (e.g. male dominance abuse are held responsible for exacerbating pre- and aggression in relationships) existing stress or resisting control or punishment. • Desire for power and control in relationships Typically, IPV occurs in a controlling cycle, in • History of experiencing neglect or poor parenting which an assault is followed by a period wherein as a child the abuser is remorseful, apologetic, or even lov- • History of experiencing physical discipline as a child ing, before tensions and abuser-perceived “trans- Relationship factors gressions” build to precipitate another episode of • Marital confl ict violence. Over time, these cycles generally become • Marital instability more frequent and more severe. • Economic stress One of the most common myths of intimate • Unhealthy family relationships and interactions partner violence is that it is an action perpetrated Community factors by cis-gender men against cis-gender women. • Poverty and associated factors (e.g., overcrowding) The reality is that IPV affects men and women at • Low social capital-lack of institutions, all levels and demographics of society, regardless relationships, and norms that shape the quality and quantity of a community’s social interactions of race, religion, or economic status. While no • Weak community sanctions against IPV (e.g., one knows what exactly what causes IPV, eco- unwillingness of neighbors to intervene in nomic stress, history of mental illness, history of situations where they witness violence) abuse, perceived disparate power differentials, • Patriarchal gender norms (especially those and social dysfunction are all correlated with concerning female submission and male dominance) 128 T. Roy

Until the 1990s, few studies had examined the munity, of the 21 LGBT IPV homicides reported prevalence of IPV in same-sex couples. More in 2012, 3 (14 %) of the individuals suffering robust research has since developed to address from IPV identifi ed as transgender [10 ]. the major disparities in research and policy. Despite considerable challenges in research, Meta-analyses of the research to date suggest that studies on intimate partner violence in LGBT LGBT individuals are at least as likely—if not youth relationships have yielded compelling more likely—to be abused by their partners as results. Studies estimate that around 25–40 % of heterosexual men and women. According to the gay, bisexual and lesbian youth report at least one National Coalition of Anti-Violence Programs lifetime incident of emotional, physical, or sexual (NCAVP), LGBT and queer (LGBTQ) youth, abuse by a same-sex partner, fi gures that are simi- people of color, gay men, and transgender women lar to or higher than lifetime reports of violence were more likely to suffer injuries, require medi- from heterosexual samples [16 , 17 ]. Of note, male cal attention, experience harassment, or face anti- adolescents within exclusively same- sex rela- LGBTQ bias as a result of IPV. Although it is tionships were less likely than females to report unknown whether the severity of abuse is compa- experiencing the violent behaviors. These results rable between opposite-sex and same-sex cou- underscore the need for early screening and inter- ples, gay individuals suffering from IPV were vention in this population [18 ]. almost twice likely to require medical attention as a result of violence [10 ]. In a 2009 study, males suffering from same- sex IPV reported more ver- Challenges in Reporting, Research, bal abuse than males suffering from of opposite- and Policy sex IPV. Females suffering from (lesbian, bisexual, and straight), by contrast, did not report Studies examining the prevalence and severity of differences by type of IPV [11 ]. In an analysis of IPV in LGBT relationships are limited by many the California Health Interview Survey, 1250 of of the same obstacles of research on heterosexual the 31,623 respondents who identifi ed as LGB or IPV, particularly small sample populations. Many WSW/MSM reported higher rates of physical individuals affected by IPV are reluctant to report and sexual violence than their heterosexual coun- IPV for many reasons: fear of retaliation by the terparts, though this fi gure was signifi cant only abuser, fear of judgment by healthcare providers for bisexual women and gay men. Notably, for or law enforcement, fear of further isolation, fear bisexual women, 95 % of violent incidents were of disrupting family and children, or a desire to perpetrated by a male partner [12 ]. protect the abuser by internally diminishing the The Gender, Violence and Resource Access severity of the violence. Additionally, many indi- Survey found that 50 % of transgender respon- viduals suffering from IPV (and the general pub- dents reported assault or rape by a partner, while lic at large) are often unaware of what constitutes 31 % identifi ed as an IPV survivor [10 ]. IPV, either due to denial or lack of education [5 ]. Transgender survivors, specifi cally, were twice as To overcome this obstacle, many studies based likely to face threats/intimidation, 1.8 times more on large samples typically have used nonran- likely to experience harassment, and over four dom sampling methods, often with recruitment times (4.4) more likely to face police violence as through gay and lesbian publications, organiza- a result of IPV than people who did not identify as tions, and activities. The result is that same-sex transgender. Moreover, transgender people of intimate violence is often studied using non- color and transgender women experienced this representative samples. violence at even higher rates and were more likely Setting aside methodological challenges , to face these abuses as part of IPV [ 15 ]. It should LGBT relationships face not only increased risk also be noted that, although transgender people factors for violence, but LGBT survivors also comprise approximately 8 % of the LGBT com- experience identity-specifi c forms of abuse. The 10 Intimate Partner Violence 129 unique possibilities for extortion make it espe- children. In this situation, the non- biological cially diffi cult for LGBT individuals to leave or parent has no legal rights to child custody if the report abusive relationships. These forms of IPV couple separates. Similarly, if the abuser is a non- are summarized here: biological parent, he or she may threaten to “out” the biological parent in order to jeopardize the Internalized guilt Many LGBT individuals biological parent’s custody and transfer the child choose not to disclose their abuse because they to a heterosexual household [21 ]. feel that their relationship must appear outwardly “perfect” either to compensate for the stigma of Lack of support from law enforcement For those homosexuality/gender nonconformity or not to LGBT individuals affected by IPV that do seek validate heterosexist bigotry that suggests that help, they may encounter a lack of cultural com- LGBT relationships are less valid or “serious” petency from law enforcement that believe [7 ]. This is particularly true of younger individu- that IPV is perpetrated by straight men against als, who may harbor more confl icted feelings straight women. There is often a concomitant about their sexual identity [19 ]. misconception that LGBT IPV refers to conditions of mutual combat rather than victimization Homophobia/biphobia/transphobia Societal [22 ]. According to the 2012 NCAVP report, in oppression of LGBT people has allowed hetero- nearly a third of the LGBTQ-specifi c IPV cases sexism to be used as another psychological reported to the police, the survivor was arrested weapon in the arsenal of a abuser keen on con- instead of the aggressor. LGBTQ IPV survivors trolling and manipulating his or her partner. For also experienced other forms of police miscon- instance, abusive partners of transgender survi- duct including verbal abuse, slurs or bias lan- vors may tell their partners they are not “real” guage, or physical violence. Particularly in the men or women, that no one else would want to be transgender community, half of individuals with him or her, or that they would be more reported feeling discomfort in seeking assistance unsafe “on the streets” outside the relationship. from police, and close to a quarter of individuals Other forms of heterosexist abuse may include had experienced police harassment [ 10 ]. This shaming gender-nonconforming behaviors, tell- mistrust in law enforcement serves to reinforce ing a partner that the abuser is the only one who the degree of isolation transgender individuals understands their sexual identity, or threatening experience. to “out” a partner to his or her family, employer, or community. These behaviors ultimately exploit Access to social services Since the reauthori- insecurities concerning the social ramifi cations zation of the Violence Against Women Act of his or her sexual orientation. In addition to (VAWA) of 2013—which i ncluded provisions psychological trauma, outing may result in the for LBGT individuals—domestic violence or loss of support systems, housing, jobs, or even intimate partner violence is no longer legally child custody. Often, individuals affected by may defi ned as violence between straight male be reluctant to report IPV based on fears of the aggressors and females. That being said, LGBT negative consequences of revealing their true individuals may encounter homophobic bias in sexual orientation [20 ]. court should they choose to press charges [ 21 ]. Should these individuals reveal their sexual Children When same-gender couples have chil- orientation and decide to leave their partners, dren, the abuser may threaten to take the children many have been denied access to social ser- away. If the abuser is the biological or adoptive vices and safety nets such as shelters. Shelters parent, this threat could easily be carried out not only provide safe and stable housing, they because many states have adoption laws that do not also provide other social services such as coun- permit same-gender parents to adopt each other’s seling, legal and employment services, and child 130 T. Roy services. Domestic violence services that are The Role of Clinicians LGBT-specifi c have been designed primarily for LGBT communities, with providers specializing Clinicians serve an important role in identifying, in work with LGBT individuals and families. supporting, treating, and intervening on behalf of But despite LGBT individuals facing higher individuals affected by IPV. However, one of the rates of social isolation, prejudice, and mental most diffi cult tasks is screening for IPV, since illness in daily life, LGBT-specifi c shelters are clinical manifestations of IPV are subtle in all but rare or nonexistent particularly in rural areas, most obvious cases. Lack of knowledge or train- only compounding the needs of an underserved ing, time limitations, inability to offer lasting community. Most domestic violence services solutions or external resources, and fear of have been designed primarily for the hetero- offending the patient all contribute to provider- sexual community—with varying degrees of specifi c barriers that IPV victims face. LGBT acceptance—and providers of these ser- Compounding the stigma of abuse and violence, vices may not have received training in LGBT classism, racism, homophobia, and transphobia domestic violence and usually receive variable also adds to a culture of inertia and victim- amounts of training in LGBT issues. For those shaming within medicine. Providers must fi x this individuals who are able to access social ser- culture through information, trust, empathy, and vices, lack of cultural competency often contrib- objectivity. utes to the already-present sense of isolation and While signs of trauma (e.g. bruises, burns, may actually re-traumatize those affected by scratches to the face, abdomen, and genitals) are IPV, leading them to return to their aggressors or thought to be most consistent with IPV, in most stop seeking support altogether [ 23]. In fact, cases, abused patients present with either no many non-LGBT specifi c shelters that do exist symptoms at all or may present with non- have historically operated under the belief that traumatic diagnoses such as IBS, depression, IPV is a heterosexual phenomenon and did not abdominal pain, anxiety, substance abuse, or accept men or trans women. For this reason, STIs. Given this vague constellation of symp- while women have the option of going to female- toms, it is important for providers to consider focused shelters, limited resources are available IPV as an etiology or even lower thresholds for for male and transgender individuals affected by IPV screening, particularly for gay and transgen- IPV. The recent reauthorization of VAWA, how- der patients. Careful history and physical exam ever, now contains a nondiscrimination clause skills are essential so that the subtle signs of IPV that prohibits LGBT individuals from being can be screened for and recognized. turned away from shelters on the basis of sexual Given that many in the LGBT community feel orientation or gender identity, so there is hope stigmatized, marginalized, and judged for their that more programs will rise to the challenge of sexual orientation, many individuals do not reveal providing culturally- competent care to future their sexual orientations or gender identity in the victims. Despite expanding access for LGBT clinical setting, complicating the already chal- individuals, however, it must be noted that lenging task of addressing a patient’s unique VAWA came under considerable criticism for the needs and obstacles. As previously mentioned, relatively paltry provision of only $4 million to disclosing one’s sexual identity—especially in a LGBT organizations of its larger $1.6 billion setting where trust and rapport have not been budget. While the reauthorization of VAWA established—is a major deterrent for many LGBT should be applauded as a major step towards victims in seeking help and breaking a cycle of legal equality for the LGBT community, dispari- abuse. Establishing rapport with patients tact- ties in funding only underscore that more work fully and professionally in a nonjudgmental way must be done to address the issue of IPV within is key with any survivor of IPV but is especially this vulnerable population. paramount in LGBT communities. The fi rst step 10 Intimate Partner Violence 131 is to interview the patient alone in a quiet room Second, identifying specifi c violent or abusive and verbally assure them of confi dentiality. Then, experiences may aid in furthering dialogue, edu- rather than running through a formal IPV screen- cating the patient, guiding the physical exam, and ing questionnaire, it may be more prudent for the developing a treatment plan that suits a patient’s provider to open a dialogue with the patient when specifi c needs. Once providers are able to obtain taking a sexual history (“Are you sexually a proper history of IPV and trauma, they can then active?”, “Are you in a relationship?”, “Do you extend their screening and physical exam to have sex with men, women, or both?”). Such include physical injury, substance abuse, depres- questions are respectful, relevant, and set up a sion, anxiety, HIV and other STIs, the prevalence professional conversation for inquiry about all of which is much higher in individuals affected aspects of sexual and emotional health without by IPV. appearing voyeuristic or judgmental.

Helpful Hint Helpful Hint Remember to validate and afﬁ rm a patients After establishing rapport, ask about spe- feelings and experiences to maintain rapport ciﬁ c behaviors (hitting, punching, noncon- and trust . sensual sexual activity, etc.) and try to explore the patient’s feelings of fear in the relationship. Physical Exam

By asking pertinent follow-up questions using Patterns of injury that m ight be suspicious for inclusive, non-heteronormative language, a pro- abuse include multiple injuries in various stages vider can establish trust with a patient before of healing, cuts, scratches, or bruises on the face, delving into more sensitive IPV-history questions, abdomen, and genitalia, or any acute injury that such as “Do you feel unsafe in your relationship?” does not have a clear cause. The presence of STIs or “Have you been hit, punched, kicked, or physi- or signs of self-harm and substance abuse, while cally threatened by your partner or previous part- not direct signs of IPV, should prompt discus- ner?”. If affi rmative, asking “In what context, did sions about emotional health and relationship these events happen?” and “How have these history. As previously mentioned, however, most events affected you?” are good follow-up ques- individuals affected by IPV present without any tions. If a patient discloses how they feel about the overt signs of trauma. violence, it is important to validate and affi rm their feelings, particularly given the challenge of discussing IPV with a provider. A Brief Note on Documentation Inquiring about specifi c IPV experiences rather than asking about a more general “history The role of clear and accurate medical records of domestic violence” is benefi cial for two rea- cannot be understated. Medical documentation is sons: First, IPV often goes unacknowledged not readily admissible in court as evidence that can only on an institutional level, but also on a cul- substantiate a individual’s assertion of harm, even tural level, even within the LGBT community when a victim is unable to testify against his or [24 ]. Many individuals affected by IPV do not her aggressor. Correct documentation also enables have the knowledge to label their experiences as providers to effectively communicate amongst abusive or violent—particularly in cases of sex- each other about a patient’s history of IPV, per- ual assault or emotional/psychological abuse—so mitting more individualized patient care in the inquiring and correctly identifying IPV fulfi lls a future. Whenever possible, the patient’s own much-needed educational role for these patients. words should be documented in the chart, and the 132 T. Roy relationship of the aggressor and indivdual abused an individual affected by IPV to discreetly build be stated along with supporting photographs and their independence without a possibly dangerous descriptions from the physical exam. Areas of ten- confrontation with their abuser [25 ]. derness or concern, even without visual evidence Different interventions may be appropriate if of trauma, should be documented on a body map, the patient is a minor. Almost half of LGBT youth along with descriptions of the symptoms. and adolescents report feeling abused in at least one past relationship; therefore, screening and intervention is especially crucial in this vulnera- IPV Intervention ble demographic [26 ]. More specifi cally, males reporting exclusively same-sex relationships are After listening to the patient, affi rming their less likely than females to report experiencing experiences, and conducting a thorough history violence [18 ]. If the patient’s safety is imminently and physical exam, the next step in IPV interven- jeopardized, it may be advisable to discuss the tion is ensuring patient safety. Patient safety can situation with the patient’s parents. In the pediat- be addressed on several fronts. The fi rst is to ask ric population, referring to social work may also the patient if he or she subjectively feels safe provide an important role in managing complex going home at all, and, i f not, if he or she has a social dynamics in the home or at school. safe place to stay. Another key step may be deter- A host of health risks are associated with IPV mining whether there are fi rearms in the house- and have been outlined in Table 10.2 . Chronic hold, or if the aggressor has access to fi rearms or pain, gastrointestinal distress, and frank physical other weapons. Not only will this allow one to injuries are all physical fi ndings important to doc- make appropriate referrals to social services, it ument and address with the appropriate medical can also give the provider better insight into the management and pharmacotherapy. S exually volatility of the domestic situation. It is also cru- transmitted infections and psychiatric illness such cial to note if children are present in the home as depression, anxiety, and post-traumatic stress and if their safety is also jeopardized. The physi- disorder are far more prevalent in abusive rela- cian should alert the patient of their legal protec- tionships, and individuals affected by IPV are tions, and that restraining orders and civil often not empowered to seek treatment. Therefore, protection orders are available in the United the clinical encounter should also include STD States. These protections may even mandate tem- screening, depression and anxiety screening porary child custody and mandate rent or mort- (including assessing risk of suicidal ideation), and gage payments by the aggressor. discussion of safe sex practices [23 ]. Particularly Creating a personalized safety plan is simple and powerful tool for patients who feel endan- gered. Patients should be advised to take mea- Table 10.2 The impact of IPV on health sures to establish independence and security. Intimate partner violence in heterosexual and LGBT Such activities may include ensuring that impor- all victims of IPV is associated with increased health tant phone numbers are available at all times, risks of the following: rehearsing realistic escape routes from their • Substance use disorders homes, workplaces, or anywhere partners may • Trauma and stress related disorders (ex. PTSD) threaten them, developing outside contacts, seek- • Depression, suicidal ideation and attempts ing support regularly from friends, colleagues, or • Sexually transmitted diseases professionals, and keeping a list of secure places • Unplanned or early pregnancy and pregnancy to seek refuge if their safety is imminently threat- complications ened. Keeping change for phone calls, opening • Eating disorders separate bank accounts, and leaving extra money, • Gastrointestinal disorders car keys, clothes, or copies of important papers • Chronic pain disorders with a friend or in a safe place serves as a way for • Psychosomatic symptoms 10 Intimate Partner Violence 133 in pediatric and adolescent populations, physi- Lambda GLBT Community Services cians should initiate frank discussions about safe 216 South Ochoa Street sex, STDs, and consent. Substance abuse in par- El Paso, TX 79901 ticular has been found consistently to correlate Telephone: 208-246-2292 with IPV in both heterosexual and LGBT popula- Fax: 208-246-2292 tions, so the clinician should explore the patient’s Email: [email protected] coping mechanisms and evaluate the patient for Web: http://www.lambda.org/ substance dependence [27 ]. LAMBDA has led the effort to create an aware- Many individuals affected by IPV remain in ness of homophobia and its effects, becoming abusive relationships for a number of reasons, be a major source of information for decision they emotional, physical, or fi nancial, and the makers and news media. LAMBDA has also process of extricating themselves from the rela- worked to protect gays and lesbians from dis- tionship often takes a long time. Even so, many crimination and violence in homes, businesses, individuals who have been abused may refuse and schools through educational campaigns, help altogether. Particularly in these situations, non-discrimination leadership, and anti-vio- the most essential advice for the clinician is to lence efforts. LAMBDA’s Anti- Violence patiently listen, providing accessibility, support, Project (AVP) provides victim services to sur- and frequent and regular follow- up both during vivors of hate crimes, domestic violence, sex- the abusive relationship and after the relationship ual assault, and other crimes. AVP’s services has been terminated [23 ]. Identifying IPV allows include crime prevention and education, a 24-h the provider to educate his or her patients and bilingual (English-Spanish) hotline, peer-to- advocate for their wellbeing. Physicians should peer support groups, and accompaniment to reaffi rm that intimate partner violence is a crime and advocacy with police, the courts, and other and inform their patients that there is help avail- service providers. able should he or she be willing to receive it. Below is a list of domestic violence resources The National Coalition of Anti-Violence organized by region, reproduced from the 2007 Programs (NCAVP) National Resource Center on Domestic Violence 240 West 35th Street, Suite 200 Information & Resource Guide [28 ]. New York, NY 10001 Telephone: 212-714-1184 Gay Men’s Domestic Violence Project TTY: 212-714-1134 (GMDVP) Web: http://www.ncavp.org 955 Massachusetts Avenue, PMB 131 The National Coalition of Anti-Violence Cambridge, MA 02139 Programs ( NCAVP ) is a coalition of over 20 Telephone: 800-832-1901 lesbian, gay, bisexual, and transgender victim Email: [email protected] advocacy and documentation programs located Web: http://www.gmdvp.org/ throughout the United States. Before offi cially Founded as a non-profi t organization by a survivor forming in 1995, NCAVP members collabo- of domestic violence in 1994, The Gay Men’s rated with one another and with the National Domestic Violence Project ( GMDVP ) provides Gay and Lesbian Task Force (NGLTF) for over community education and direct services to a decade to create a coordinated response to gay, bisexual, and transgender male victims violence against LGBT c ommunities. NCAVP and survivors of domestic violence. It now has member organizations have increasingly a growing pool of volunteers and speakers, and adapted their missions and their services to four staff members. GMDVP relies on the respond to violence within the community. grassroots support of survivors, its volunteer The fi rst annual domestic violence report was base, the LGBT community, and other allies . released in October of 1997. 134 T. Roy

Arizona Los Angeles, CA 90028 Wingspan Anti-Violence Project Telephone: 323-860-5806 (clients) 300 East Sixth Street Fax: 323-993-7699 Tucson, AZ 85705 E-mail: [email protected] Telephone: 520-624-1779 Website: http://www.laglc.org/domesticviolence Fax: 520-624-0364 The L.A. Gay & Lesbian Center’s STOP Partner TDD: 520-884-0450 Abuse/Domestic Violence Program provides a Email: [email protected] comprehensive continuum of partner abuse Web: http://www.wingspanaz.org/content/WAVP. and domestic violence services designed to php address the specifi c and unique needs of the The Wingspan Anti-Violence Project is a social lesbian, gay, bisexual and transgender change and social service program that works communities. to address and end violence in the lives of lesbian, gay, bisexual, and transgender San Diego Lesbian, Gay, Bisexual, Transgender (LGBT) people. WAVP provides free and Community Center confi dential 24-h crisis intervention, infor- 3909 Centre Street mation, support, referrals, emergency shelter, San Diego, CA 92103 and advocacy to LGBT victim/survivors of Telephone: 619-692-2077 violence. Additionally, the project offers Fax: 619-260-3092 extensive outreach and education programs. Web: http://www.thecentersd.org/ Group and individual counseling offered to both California victims and offenders struggling with rela- Community United Against Violence (CUAV) tionship violence. This program is also proba- 60 14th Street tion/court-certifi ed for court-ordered clients. San Francisco, CA 94103 Lesbian, gay, bisexual and transgender youth Business Telephone: 415-777-5500 are also served. [The Relationship Violence 24-h Support Line: 415-333-HELP Treatment & Intervention Program] is targeted Fax: 415-777-5565 towards victims and offenders of same-sex Web: http://www.cuav.org/ relationships . Community United Against Violence (CUAV) is a 20-year old multicultural organization work- Colorado ing to end violence against and within lesbian, Colorado Anti- Violence Program gay, bisexual, transgender and queer/question- P.O. Box 181085 ing (LGBTQ) communities. Believing that in Denver, CO 80218 order for homophobia and heterosexism to Telephone: 303-852-5094; or 303-839-5204 end, CUAV must fi ght all forms of oppression, Crisis Line: 888-557-4441 including racism, sexism, ageism, classism Fax: 303-839-5205 and ableism. CUAV offers a 24-h confi dential, E-mail: [email protected] multilingual support line, free counseling, Web: www.coavp.org legal advocacy, and emergency assistance The Colorado Anti-Violence Program is dedicated (hotel, food, and transportation vouchers) to to eliminating violence within and against the survivors of domestic violence, hate violence, lesbian, gay, bisexual, and transgender (LGBT) and sexual assault. CUAV uses education as a communities in Colorado. CAVP provides violence prevention tool through the speakers direct client services including crisis interven- bureau, the youth program, and the domestic tion, information, and referrals for LGBT vic- violence prevention program. tims of violence 24 h a day and also provides technical assistance, training, and education for Los Angeles Gay & Lesbian Center/STOP community organizations, law enforcement, Partner Abuse/Domestic Violence Program and mainstream service providers on violence 1625 North Schrader Boulevard issues affecting the LGBT community. 10 Intimate Partner Violence 135

Illinois The Network/La Red Center on Halsted Horizons Anti-Violence P.O. Box 6011 Project Boston, MA 02114 961 W. Montana, 2nd Floor Telephone (V/TTY): 617-695-0877 Chicago, IL 60614 Fax: 617-423-5651 Telephone: 773-472-6469 E-mail: [email protected] Fax: 773-472-6643 Web: http://www.biresource.org TTY: 773-472-1277 The Network/La Red was formed to address batter- E-mail: [email protected] ing in lesbian, bisexual women’s, and transgen- Web: http://www.centeronhalsted.org/coh/calen- der communities. Through (a) the formation of dar/home.cfm a community-based multi-cultural organization The Center on Halsted Anti-Violence Project in which battered/formerly battered lesbians, (AVP) has assisted thousands of victims of bisexual women, and transgender folks hold anti-lesbian, gay, bisexual, or transgender leadership roles; (b) community organizing, (LGBT) hate crimes, domestic violence, sex- education, and the provision of support services; ual assault, discrimination, and police miscon- and (c) coalition-building with other move- duct. Staff and trained volunteers counsel, ments for social change and social justice, the support, and advocate for all victims and sur- Network/LaRed seeks to create a culture in vivors of such violence. All AVP victim ser- which domination, coercion, and control are no vices are free and confi dential. longer accepted and operative social norms. Agency services include a Hotline, Safe Home Massachusetts program, Advocacy program, and Organizing/ Fenway Community Health Violence Recovery Outreach program. All services are bilingual Program and wheelchair and TTY-accessible. ASL inter- 7 Haviland Street preters, air fi lters, and reimbursement for child- Boston, MA 02115 care are available as needed . Telephone: 617-267-0900 Toll-free: 888-242-0900 Michigan Spanish information: 617-927-6460 Triangle Foundation TTY: 617-859-1256 19641 West Seven Mile Road Web: http://www.fenwayhealth.org/services/vio- Detroit, MI 48219-2721 lence.htm Telephone: 313-537-7000 The Violence Recovery Program (VRP ) at Fax: 313-537-3379 Fenway Community Health provides counsel- Web: http://www.tri.org/ Triangle Foundation is ing, support groups, advocacy, and referral ser- Michigan’s leading organization serving the gay, vices to Gay, Lesbian, Bisexual and lesbian, bisexual, transgender (GLBT) and allied Transgender (GLBT) victims of bias crime, communities. The Triangle Foundation Anti- domestic violence, sexual assault and police Violence Program is a social change and social misconduct. VRP staff members frequently service program that works to address and end present at trainings for police, court personnel violence in the lives of GLBT people. We pro- and human service providers on GLBT crime vide free and confi dential intervention, informa- survivor issues. Other services include a sup- tion, support, attorney referrals, emergency port group for GLBT domestic violence survi- shelter referrals, and advocacy to GLBT victim/ vors, the region’s only support group for male survivors of violence. Additionally, we offer survivors of rape and sexual assault, advocacy extensive outreach and education programs. with the courts and police, and assistance with victim compensation. VRP provides short- Minnesota term counseling to survivors and their families, OutFront Minnesota and referrals to longer-term counseling through 310 East 38th Street, Suite 204 Minneapolis, MN their mental health department. 55409 136 T. Roy

Telephone: 612-824-8434 [Hotline] Web: http://www.gayalliance.org/ The Gay Telephone: 612-822-0127 Alliance of the Genesee Valley is dedicated to Toll-free: 800-800-0350 cultivating a healthy, inclusive environment E-mail: [email protected] where individuals of all sexual orientations Web: http://www.outfront.org and gender expressions are safe, thriving, and OutFront Minnesota offers direct services to vic- enjoy full civil rights. tims of domestic violence and offers training concerning same-sex domestic abuse to DV In Our Own Voices service providers. 245 Lark Street Albany, NY 12210 Missouri Telephone: 518-432-4188 Anti-Violence Advocacy Project of the St. Louis Fax: 518-432-4123 region Email: [email protected] P.O. Box 63255 Web: http://www.inourownvoices.org St. Louis, MO 63163 In Our Own Voices is an autonomous organization Telephone: 314-503-2050 dedicated to addressing the many needs of the Web: http://www.avap-stl.org/ LGBT community. The purpose of [the Capital The mission of the Anti-Violence Advocacy District LGBT Anti-Violence Project] is to Project (AVAP ) of the St. Louis Region is to improve domestic violence services for lesbian, provide education and advocacy that addresses gay, bisexual and transgender people, particu- intimate violence and sociopolitical oppres- larly people of color, in the Capital District. sion based on sexual orientation and/or gender identity. This project addresses all forms of Long Island Gay and Lesbian Youth violence that affect the lesbian, gay, bisexual, 34 Park Avenue transgender, queer community, including (but Bay Shore, NY 11706-7309 not limited to) domestic violence, sexual vio- Telephone: 361-655-2300 lence, anti-gay harassment and hate crimes. Fax: 631-655-7874 Web: http://www.ligaly.org Kansas City Anti-Violence Project Long Island Gay and Lesbian Youth (LIGALY) PO Box 411211 is a not-for-proﬁ t organization providing edu- Kansas City, MO 64141-1211 cation, advocacy, and social support services Telephone: 816-561-0550 to Long Island’s gay, lesbian, bisexual, and Email: [email protected] Web: http://www.kcavp. transgender (GLBT) youth and young adults, org and all youth, young adults, and their families KCAVP was created to provide information, sup- for whom sexuality, sexual identity, gender port, referrals, advocacy and other services to identity, and HIV/AIDS are an issue. Our LGBT survivors of violence including domes- goals are to empower GLBT youth, advocate tic violence, sexual assault, and bias crimes, for their diverse interests, and to educate soci- focusing these services within the Kansas City ety about them. [The Long Island Gay and metropolitan area. KCAVP also educates the Lesbian Youth Anti-Violence Project] will community at large through training and out- serve GLBT and HIV-positive victims of vio- reach programs. lence, and others affected by violence, by providing free and conﬁ dential services enabling New York them to regain their sense of control, identify Gay Alliance of the Genesee Valley and evaluate their options and assert their Rochester, NY 14605 rights. In particular, the Project will assist sur- Telephone: 585-244-8640 vivors of hate-motivated violence, domestic Fax: 585-244-8246 violence and sexual assault. 10 Intimate Partner Violence 137

The New York City Gay & Lesbian Anti-Violence Rainbow Net provides training to LGBT com- Project munity groups and domestic violence service 240 West 35th Street, Suite 200 providers in North Carolina, in an effort to New York, NY 10001 improve the state’s response to LGBT survi- Telephone: 212-714-1141 [Hotline] vors of domestic violence. This website, as Telephone : 212-714-1184 TTY: 212-714-1134 well as the NCCADV website ( www.nccadv. [Hotline] org ) contains information about domestic vio- Fax: 212-714-2627 lence in LGBT relationships, tools for domes- E-mail: [email protected] tic violence service providers, tips on helping Web: http://www.avp.org a friend experiencing domestic violence, and The New York City Gay & Lesbian Anti-Violence links to other online resources. Project serves lesbian, gay, transgender, bisexual and HIV-positive victims of violence, and Ohio others affected by violence, by providing free Buckeye Region Anti-Violence Program and confi dential services. The Project assists (BRAVO) survivors of hate-motivated violence (includ- PO Box 82068 ing HIV-motivated violence), domestic vio- Columbus, OH 43202 lence, and sexual assault, by providing Telephone: 614-268-9622 therapeutic counseling and advocacy within E-mail: [email protected] the criminal justice system and victim support Toll-free: 866-86-BRAVO [Hotline] agencies, information for self-help, referrals Web: http://www.bravo-ohio.org to practicing professionals, and other sources BRAVO works to eliminate violence perpetrated of assistance. The larger community is also on the basis of sexual orientation and/or gender served through public education about vio- identifi cation, domestic violence and sexual lence directed at or within LGBT communi- assault through prevention, education, advo- ties and through action to reform government cacy, violence documentation and survivor ser- policies and practices affecting lesbian, gay, vices, both within and on behalf of the Lesbian, transgender, bisexual, HIV-positive and other Gay, Bisexual and Transgender communities. survivors of violence . The Lesbian Gay Community Center of Greater North Carolina Cleveland North Carolina Coalition Against Domestic 6600 Detroit Avenue Violence (NCCADV) Cleveland, OH 44102 115 Market Street, Suite 400 Telephone: 216-651-LGBT (651-5428) Durham, NC 27701 Toll-free: 888-GAY-8761 (429-8761) Telephone: 919-956-9124 E-mail: [email protected] Fax: 919-682-1449 Web: http://www.lgcsc.org/ Web: http://www.nccadv.org The Center works toward a society free of Project Rainbow Net, an initiative of the North homophobia and gender oppression by advanc- Carolina Coalition Against Domestic Violence ing the respect, human rights and dignity of the (NCCADV) addresses issues related to lesbian, gay male, bisexual and transgender domestic violence in lesbian, gay, bisexual communities. The Center is a non- profi t orga- and transgender relationships. The initiative is nization that provides direct service, social a grassroots effort based on the insight of an support, community-building and programs to advisory council made up of lesbian, gay, empower lesbian, gay, bisexual, transgender bisexual and transgender people who have an and intersex people. Core program areas are understanding of domestic violence in LGBT Education, Health and Wellness and Youth relationships and a desire to end it. Project Services. 138 T. Roy

Ontario Email: [email protected] The 519 Anti-Violence Programme Web: http://www.equalitypa.org 519 Church Street Equality Advocates’ mission is to advocate equal- Toronto, ON M4Y 2C9 ity for lesbian, gay, bisexual, and transgender Canada individuals in Pennsylvania through direct legal Telephone: 416-392-6877 [Hotline] services, education, and policy reform. E-mail: [email protected] Web: http://www.the519.org Texas The 519 Anti-Violence Programme provides sup- Montrose Counseling Center, Inc. (MCC) port to and advocacy for people who have 701 Richmond Avenue experienced same-sex partner abuse or hate Houston, TX 77006-5511 motivated violence or harassment, works with Telephone: 713-529-3211 [Hotline] the LGBTQ Communities in Toronto to pro- Toll Free: 800-699-0504 [Hotline: Regional vide education on responding to and prevent- Toll-Free] ing violence, works with other service Telephone: 713-529-3590 [Youth Line] providers to ensure that their services are Telephone: 713-529-0037 accessible and appropriate for LGBTQ people Fax: 713-526-4367 and works with other agencies to develop new E-mail: [email protected] Web: services to address service gaps. http://www.montrosecounselingcenter.org MCC , a Joint Commission on Accreditation of Oregon Healthcare Organizations facility, provides com- Survivor Project prehensive behavioral health and social services P.O. Box 40664 for the Gay, Lesbian, Bisexual, Transgender and Portland, OR 97240 Questioning communities in and around metro- Telephone: 503-288-3191 politan Houston. Anti-violence services include Email: [email protected] 24-h hotline, advocacy/case management, safety Web: http://www.survivorproject.org/defbarresp. planning, medical, legal and court accompani- html ment, professional and peer counseling, assis- Survivor Project is a non-proﬁ t organization dedi- tance with Crime Victim’s Compensation cated to addressing the needs of intersex and applications, Victim Impact Statements and pro- trans survivors of domestic and sexual violence tective orders, and legal advocacy for bias/hate through caring action, education and expanding crimes, domestic violence and sexual assault. access to resources and to opportunities for Emergency shelter and transitional housing is action. Since 1997, Survivor Project has pro- also available for domestic violence survivors. vided presentations, workshops, consultation, Other services available include licensed out- materials, information and referrals to many patient substance abuse treatment and GLBTQ anti-violence organizations and universities youth enrichment programs. across the country, as well as gathered information about issues faced by intersex and trans sur- Resource Center of Dallas vivors of domestic and sexual violence. P.O. Box 190869 Dallas, TX 75219-0869 Pennsylvania Telephone: 214-528-0144 Equality Advocates Fax: 214-522-4604 1211 Chestnut Street, Suite 605 The Resource Center’s Family Violence Program Philadelphia, PA 19107 promotes self-autonomy, safety and long-term Telephone: 215-731-1447 independence for gay, lesbian, bisexual and Toll Free: 866-LGBT-LAW (866-542-8529) transgender individuals involved in family [Hotline, available within PA only.] violence . 10 Intimate Partner Violence 139

Vermont Washington Safespace The Northwest Network of Bi, Trans, Lesbian PO Box 158 and Gay Survivors of Abuse Burlington, VT 05402 PO Box 20398 Telephone: 802-863-0003 Seattle, WA 98102 Toll-free hotline: 866-869-7341 Telephone: 206-568-7777 E-mail: [email protected] TTY message: 206- 517-9670 Web: http://www.SafeSpaceVT.org E-mail: [email protected] SafeSpace is a social change and social service Web: http://www.nwnetwork.org/about.html organization working to end physical, sexual, The Northwest Network acts to increase its com- and emotional violence in the lives of lesbian, munities’ ability to support the self- determination gay, bisexual, transgender, queer and ques- and safety of bisexual, transgender, lesbian, and tioning (LGBTQQ) people. SafeSpace pro- gay survivors of abuse through education, orga- vides direct services to survivors of violence nizing and advocacy. The Northwest Network through its Support Line, and provides educa- works within a broad liberation movement dedi- tion/outreach to the community about issues cated to social and economic justice, equality of violence in the LGBTQQ community. The and respect for all people and the creation of lov- organization provides information, support, ing, inclusive and accountable communities. referrals, and advocacy to LGBTQQ survivors Services are free and conﬁ dential and include of domestic, sexual and hate violence/dis- support groups, individual counseling, legal crimination. Advocates work with survivors, advocacy, shelter referrals, safety planning, basic helping them access legal, medical, ﬁ nancial, needs assistance, community education and housing, and other community resources. community organizing. Finally, SafeSpace provides education, training and professional consultation to Wisconsin individuals, groups, schools, and organiza- Milwaukee LGBT Community Center tions about the issues of violence in the 315 West Court Street LGBTQQ community. Milwaukee, WI 53212 Telephone: 414-271-2656 [For AVP program, Virginia dial extension 111] Equality Virginia Fax: 414-271-2161 403 North Robinson Street Web: http://www.mkelgbt.org Richmond, VA 23220 The Milwaukee LGBT Community Center’s mis- Telephone: 804-643-4816 sion is to improve the quality of life for people Fax: 804-643-1554 in the Metro Milwaukee area who identify as E-mail: [email protected] LGBT by providing a home for the birth, nur- Web: http://www.equalityvirginia.org/ ture and celebration of LGBT organizations, Equality Virginia is a statewide, non-partisan, culture and diversity; initiating, implementing lobbying, education and support network for and advocating for programs and services that the gay, lesbian, bisexual, transgender, and meet the needs of LGBT communities; educat- straight allied (GLBT) communities in ing the public and LGBT communities to Virginia. The Anti-Violence Project is an encourage positive changes in systems affecting Equality Virginia Education Fund-based pro- the lives of people identifying as LGBT; gram that works to address and end violence empowering individuals and groups, who iden- in the lives of lesbian, gay, bisexual, transgen- tify as LGBT to achieve their fullest potential; der, queer and HIV-affected people across the and cultivating a culture of diversity and inclu- Commonwealth. sion in all phases of the project. 140 T. Roy

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Henry H. Ng and Gregory S. Blaschke

• Describe the development of sexuality, sexual Purpose orientation, gender identity, and gender expression (KP3) The purpose of this chapter is to describe the • Discuss how the challenges faced by LGBT socioecologic factors inﬂ uencing the health of youth impact risk behaviors and health (PC5, LGBT youth, identify the challenges LGBT KP4, KP5, SPB4) youth face in their experience of adolescence, • Discuss the importance of conﬁ dentiality in learn strategies to interact with LGBT youth healthcare for LGBT youth (ICS2, Pr2) and meet them where they are, apply best prac- • Identify at least three protective factors that tices in caring for LGBT youth, and provide can promote resilience among LGBT youth clinicians resources to better care for sexual (KP3, PC5, PC6) minority youth.

Learning Objectives Introduction

After reading this chapter, learners will be Introductory Case Presentation [1 , 2 ] able to: Imagine you are a nurse, medical student, resident or physician working in the Emergency Department of a middle-sized city. Your next H. H. Ng , M.D., M.P.H. (*) patient is LH. You walk into the room and begin Center for Internal Medicine-Pediatrics , to obtain the following information: The MetroHealth System/Case Western Reserve LH is a 21-year-old male to female (MTF) trans- University School of Medicine , 2500 MetroHealth Dr., H574 , Cleveland , gender individual presenting to the Emergency OH 44109 , USA Department with a complaint of increasing diffuse e-mail: [email protected] abdominal pain for 2–3 days. She reported that the G. S. Blaschke , M.D., M.P.H. pain did not radiate to other parts of her abdomen. Department of Pediatrics , Oregon Health and Science She denied any vomiting, blood in the stool, dark University, Doembecher Children’s Hospital , tarry stools or any changes in her bowel habits. She 707 SW Gaines St, CDRC-P , Portland , OR 97239- 2998 , USA denied any fevers or weight loss, changes in diet or e-mail: [email protected] blunt force trauma to the abdomen.

© Springer International Publishing Switzerland 2016 143 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_11 144 H.H. Ng and G.S. Blaschke

Past medical history : None Introductory Case Wrap-Up Past surgical history : None and Questions to Consider Medications : Prem arin (a form of conjugated estrogen) as prescribed by her endocrinologist The common causes of abdominal pain, including for hormonal transitioning appendicitis, colitis, gallbladder disease, infec- Allergies : No known drug allergies tious hepatitis and pancreatitis, were ruled out Social history: LH denied using tobacco. She based on physical exam and history fi ndings for reported social alcohol use. She denied illicit LH. Her abdominal pain was attributed to the drugs or intravenous drug use. She reported work- supratherapeutic overdose of the Premarin. ing as a female impersonator at a local night club. Premarin is metabolized by the liver and excessive Family history: Negative for gastrointestinal disease amounts can cause some degree of drug- induced hepatitis. She was discharged from the emergency You proceed to perform a focused physical department with instructions to decrease her exam/assessment: intake of Premarin to the dose prescribed. A follow-up note was sent to her endocrinologist General appearance: LH was in no apparent informing him of her evaluation. distress. She was androgynous appearing. Health care providers reviewing this introduc- Vital signs : Afebrile, vital signs stable. tory case may also want to consider the following Abdominal exam: Except for slight diffuse questions: abdominal tenderness to light palpation, the exam was normal. 1. How does one decide what pronoun is appropriate to use in addressing LH? LH declined genital and rectal exams. The 2. How does one ask about sexual behaviors, patient’s exam was otherwise unremarkable. gender identity and sexual orientation in a At this time, what additional information culturally competent manner? would you like to obtain from LH? 3. With the information you have obtained from You obtain the additional information: LH, what additional measures, if any, should be or could be taken to address her presenting Sexual history : LH is currently single and part- problem of abdominal pain? ners with males. She reports using barrier 4. What is this patient’s anticipatory guidance or methods (condoms) inconsistently. She has aftercare education? not had sexual reassignment surgery. She 5. How would you counsel her to prevent this denied any penile or rectal symptoms. from occurring again? Medication history : Although LH had been 6. What other health conditions is she at risk? prescribed Premarin to take BID (twice daily), 7. What health resources are available to her to she had been taking 5–10 pills daily for the reduce risks of illness and promote health? last 2 weeks. The patient reported desiring the effect of the hormonal treatment to occur more LH was not a fi ctitious character, but an actual rapidly and believed that greater doses of the patient. The health concerns and problems medication would achieve that goal. illustrated in her case are not uncommon for Additional social history : Moreover, LH is a members of the Lesbian, Gay, Bisexual and silicone injection user who just attended a Transgender (LGBT) community. “pump party” where she received non-medical The goal is that, after reading this chapter, the augmentation services to enhance her physical reader will be more comfortable and familiar attributes. LH paid $500 for a local “beauti- with best practices and culturally sensitive cian” (non-licensed, non-medically trained approaches to the care of sexual minority youth. personnel) to inject industrial grade quality To that end and to better address health issues silicone into her breasts. of sexual minority youth, this chapter also will 11 Pediatric and Adolescent LGBT Health 145 provide a framework for understanding LGBT- the United States (MIDUS) Study [7 ] in which related health disparities, an overview of adoles- respondents reported measures of discrimination cent sexuality development and a brief review of in four domains: the epidemiology of pertinent adolescent health- focused issues . • Lifetime discriminatory experiences • Frequency of day-to-day discrimination • Reasons for discrimination Health Disparities among • General effects of discrimination LGBT Youth Respondents were asked about mental health The overarching framework for understanding indicators of fi ve stress-sensitive psychiatric LGBT health disparities is found in the Institute of disorders and drug and alcohol dependence. Medicine Report: The Health of Lesbian, Gay, Homosexual and bisexual individuals reported Bisexual, and Transgender People: Building a lifetime and day to day experiences with discrim- Foundation for Better Understanding [ 3]. The ination more frequently than heterosexuals and report posits that four perspectives guide the discus- over 40 % of respondents attributed this in part, sion on LGBT Health (see Chap. 1 for more details): or in total, to their sexual orientation .

1. The minority stress model: calls attention to the chronic stress that sexual and gender Gender and Sexuality Development minorities may experience as a result of their stigmatization; Gender and sexuality development for children 2. Life course perspective: looks at how events at and adolescents is complex, dynamic, and a multi- each stage of life infl uence subsequent stages; factorial process. Gender identity awareness can 3. Intersectionality perspective: examines an begin early in life, and, by age three, some children individual’s multiple identities and the ways can become conscious of physical differences in which they interact; and between males and females. Gender is learned by 4. Social ecology perspective: emphasizes that children very early and Kohlberg in 1996 [ 8 ] individuals are surrounded by spheres of described a sequence from gender identifi cation, infl uence, including families, communities, gender stability and gender constancy confi rmed and society. by the research of others [9 –13 ]. Most 2-year olds know their gender and can identify the gender of The net effect of such discrimination based on strangers. Three year olds consistently apply gender sexual orientation and gender identity/expression labels although preschoolers are not certain that culminates in negative physical and emotional gender is a permanent attribute, most 4–5 year health outcomes. Combined with other forms of olds apply many learned social stereotypes. inequality (i.e. racism, sexism, ageism, ableism, By middle childhood, children’s interest in heterosexism), LGBT youth are subject to macro- same-gender peer play and behavior refl ect the and micro-inequalities in their day-to-day navi- ongoing process of gender identity formation. gation of local and geographic social groups as Some children may exhibit gender variant or gen- well as society at large. der incongruent behavior, more than a lack of Concepts of “gay-related stress” [4 ] and interest in culturally defi ned gender roles or “minority stress” [5 , 6 ] describe a range of stress- behavior. For example, some girls may prefer to ors resulting from individual and institutional play with trucks, cars and other stereotypically discrimination against people with sexual minority “masculine” toys while some boys may prefer to identities. The impact of these stressors on mental play with dolls, dresses or other stereotypically health was described in the MacArthur Foundation’s “feminine” toys. Some of these children with National Survey of Midlife Development in gender variant behaviors may experience gender 146 H.H. Ng and G.S. Blaschke confl ict or dysphoria. Though some children and However, sexual minority youth are coming youth resolve their dysphoria by the end of out younger and identifying their sexual orienta- adolescence, a proportion of youth will persist tion earlier. A 2011 report on LGBT Youth Risk with these feelings of gender dysphoria and seek Behavior Surveillance found that, across the gender transition care [14 ]. nine sites that assessed sexual identity, students In the face of uncertainty about ultimate identifi ed themselves as: outcomes, a clinically practical approach is to consider that gender dysphoria would occur at • Heterosexual: 90.3–93.6 % (median: 93.0 %) the extreme end of the continuum. Perrin identi- • Gay or lesbian: 1.0–2.6 % (median: 1.3 %) fi ed three clear principles for parents of children • Bisexual: 2.9–5.2 % (median: 3.7 %) with gender dysphoria: “It is legitimate (1) to help children feel more secure about their gender The percentage of students who were unsure identity as boys or girls, perhaps preventing adult of their sexual identity ranged from 1.3 to 4.7 % transgenderism; (2) to diminish as much as pos- (median 2.5 %) [22 ]. sible peer ostracism and social isolation; and (3) Coming out may be specifi cally challenging to treat evidence of associated behavioral/emo- in various cultural environments and communi- tional stress” [15 ]. ties as sexuality holds different meaning within The variation in expression of gender and sex- different cultures and ethnicities [ 23 ]. Specifi c uality is certainly a developmental process challenges for LGBT Youth of Color beyond impacted by many biologic, psychological and identity development, for example, include inte- contextual factors in society and culture. The gration of sexual and gender identity, consoli- extensive literature looking at genetic, neuro- dation with race and ethnicity, racism and anatomic and psycho-endocrine factors will not bias within larger LGBT community as well as be reviewed here; nor a discussion of family, homophobia, biphobia, and/or transphobia within social or the impact of fear, bias and stigma on their own ethnic communities [23 ]. Despite the development of complex sexual behaviors. need for culturally competent interventions and Instead, many have described mature stages in best practices to support LGBT Youth of Color, lesbian and gay identity formation [16 – 19 ]. however, research is lacking in this area. Of the Ultimately sexual orientation also has a devel- 168 publications and articles published between opmental trajectory across childhood and adoles- 1972 and 1999 on health and mental health cence. Data from Youth Risk Behavior Surveys concerns of LGBT youth, only 16 were on have demonstrated that a proportion of youth LGBT youth of color including 3 book chapters, 4 identify their sexual orientation as other than het- empirical studies and 9 additional articles on social erosexual and that this number has been stable service/provider training needs of transgender over time. “…The prevalence of homosexuality youth [ 24 ]. among adolescents is unknown because gender roles and sexual identity may take years to evolve and be acknowledged. Although only 1 % of Health Vulnerabilities among LGBT 12th-grade males and less than 1 % of 12th-grade Youth: A Review of the Literature females viewed themselves as mostly or completely homosexual, 10 % were unsure of their It is clear from the literature that a number of physical sexual orientation” [20 ]. Historically, sexual and mental health concerns may challenge sexual minority youth were more likely to select same minority youth as they journey toward adulthood. sex attraction than to select a self-identifying Health professionals caring for LGBT youth need label. “Students were most likely to endorse to become sensitive to the psychological, medical same-sex attractions, followed by fantasies and and social issues that impact the well-being of experiences, and then were least likely to describe LGBT youth and become profi cient in discussing themselves as homosexual” [21 ]. these health issues with their patients. 11 Pediatric and Adolescent LGBT Health 147

Mental Health damaged self-esteem, depression and anxiety [ 31 ]. A 2009 survey of more than 7000 LGBT Poor mental health and suicide are among the middle and high school students aged 13–21 most important and concerning health issues years found that in the past year, because of their LGBT youth face. In 2010, suicide was the sec- sexual orientation: ond leading cause of death among young people ages 10–24, accounting for 4867 deaths [25 ]. In • Eight of ten students had been verbally harassed general, the incidence and prevalence of suicide at school among LGBT populations is largely unknown as • Four of ten had been physically harassed at death records do not include a deceased person’s school sexual orientation or gender identity. Across • Six of ten felt unsafe at school many different countries, however, a strong and • One of fi ve had been the victim of a physical consistent relationship between sexual orienta- assault at school [32 ] tion and nonfatal suicidal behavior has been observed. A meta-analysis of 25 international In 2014, Blashill and Safran identifi ed population-based studies found the lifetime prev- increased use of anabolic steroids among sexual alence of suicide attempts in gay and bisexual minority boys [33 ]. The authors found that sexual male adolescents and adults was four times that minority adolescent boys were at an increased of comparable heterosexual males. Among les- odds of 5.8 (95 % confi dence interval 4.1–8.2) to bian and bisexual females, lifetime suicide report a lifetime prevalence of anabolic steroid attempt rates were almost twice those of hetero- use (21 % vs. 4 %) compared with their heterosexual females. Lesbian, gay, and bisexual (LGB) sexual counterparts. adolescents and adults were also found to be Analysis of data from the Growing Up Today almost twice as likely as heterosexuals to report a Study (GUTS) has identified differences in suicide attempt in the past year [26 ]. Research patterns of tobacco use, alcohol use and eating also indicates that nearly half of young transgen- disorders in sexual minority youth. GUTS is a der people have seriously considered suicide, longitudinal cohort study of United States ado- with nearly 25 % reporting a previous suicide lescent boys and girls who are children of women attempt [27 ]. A different study fi nds that LGB who participated in the Nurses’ Health Study youth are four times more likely, and questioning II. Findings include that youth of minority sexual youth are three times more likely, to attempt sui- orientation reported earlier initiation of alcohol cide compared to heterosexual youth [28 ]. use and that there is greater risk of alcohol use In addition, sexual orientation seems to be a among heterosexual males and bisexual females. stronger indicator of suicide attempts in males These disparities in alcohol use among youth than in females [29 ]. And, compared to hetero- with a minority sexual orientation emerge in sexual youth, suicide attempts by LGB youth and early adolescence and persist into young adult- questioning youth are 4–6 times more likely to hood [34 ]. With respect to tobacco use, youth result in injury, poisoning, or overdose requiring who identifi ed as mostly heterosexual girls or treatment from a medical professional [ 29 ]. One bisexual and lesbian were more likely to smoke, non-random sample of LGB adolescents and whereas Gay/Bisexual self-identifi ed boys were young adults reported over half of the youth who no more likely to smoke than heterosexual boys. attempted suicide used methods classifi ed as The fi ndings persisted even when controlling for moderate to lethal [30 ]. multiple socio-demographic and psychosocial In addition to suicide, other mental health covariates [35 ]. disparities among LBGT youth and their psycho- Findings from Austin et al. in 2009 revealed social antecedents have been described in the lit- that mostly heterosexual girls and boys had erature, including social isolation, running away, greater concerns with weight and appearance substance abuse, compromised mental health, and were less happy with their bodies compared 148 H.H. Ng and G.S. Blaschke with same-gender heterosexuals. Specifi cally, most new HIV infections among youth occurring mostly heterosexual girls were more likely to among gay and bisexual males. Young bisexual vomit and/or use laxatives to control weight and and gay males experienced a 22 % increase in inci- more likely to binge eat in the past year. However, dent HIV infections between 2008 and 2010, with the researchers also found gay/bisexual boys young Hispanic/Latino and African American/ were more concerned with trying to look like Black MSM especially affected. Nearly 60 % of men in the media and more likely to binge com- youth with HIV living in the United States are pared to heterosexual boys. In this study, lesbian/ unaware that they are HIV positive [42 ]. Factors bisexual girls reported feeling generally happier which potentially contribute to the spread of HIV with their bodies than mostly heterosexual girls in young LGBT people include youth low percep- and were less concerned with trying to look like tion of risk, low rates of HIV testing, low rates of women in the media [36 ]. condom use, high rates of sexually transmitted infections, older sexual partners some of whom are likely to be infected with HIV, substance use, Physical and Sexual Health homelessness, inadequate HIV education and feelings of social isolation [42 ]. LGBT youth also face challenges in navigating healthy sexuality compared to heterosexual youth. Studies show that LGBT youth are more Risk and Protective Factors likely than heterosexual teens to have had sexual for Mental and Physical Health intercourse, to have had more partners, and to have experienced sexual intercourse against their LGBT adolescents face the same concerns of will [37 ]. Substance use before sex, high-risk all adolescents; however, they have additional sexual behaviors and issues surrounding personal challenges primarily due to stigmatization, safety including prostitution have been reported isolation, discrimination and barriers than those more often by lesbian, gay, and bisexual youth experienced by heterosexual teens (see Fig. 11.1 ). than heterosexual youth [31 , 38 ]. In addition, Their dynamic, complex and often changing Lane found in 2002 that young men who partner understanding of their own gender identity, sex- with both sexes have reduced odds of condom ual orientation, attraction and behaviors lead to use and increased odds of having had multiple many needs outlined in the position paper of the sexual partners [39 ]. Society for Adolescent Health and Medicine Research studies also identify that lesbian and [ 43 ]. While health disparities will require health bisexual teens are twice as likely as their hetero- care providers to assess and address risk, fol- sexual peers to experience unintended pregnancy. lowed by prioritized risk reduction strategies, Moreover, some lesbian youth may use intentional the majority of LGBT youth are healthy and pregnancy as a strategy or coping mechanism in an well adjusted. attempt to hide their sexual identity [40 , 41 ]. The high risk behaviors of LGBT youth are As compared to their heterosexual peers LGBT often a result of reactions to social stigma and teens also are at an increased risk of STIs, includ- non-acceptance by peers, family and society, ing HIV [38 ]. Although the number of incident including our health care systems. These may in cases of HIV in the United States has plateaued, turn lead to internalized homophobia, isolation, new HIV infections in LGBT youth, especially in bullying and other forms of victimization. As communities of young men who have sex with with all adolescents, an LGBT teen’s family men (MSM) continue to rise. According to CDC member, peer, or others of importance to them HIV surveillance data, youth aged 13–24 (like teacher, coach, physician) response to accounted for approximately 26 % of all incident their disclosure of identity may serve to build HIV infections in the United States in 2010, with resiliency or compound risk. 11 Pediatric and Adolescent LGBT Health 149

Fig. 11.1 Dimensions of isolation for LGBT youth (adapted from Johnson MJ, et al. Isolation of lesbian, gay, bisexual and transgender youth: a dimensional concept analysis. J Adv Nurs. Mar 2014)

Family Response • 3.4 times more likely to use illegal drugs; and Family connectedness is an important factor in • 3.4 times more likely to have engaged in response to adversity in adolescence. Family rela- unprotected intercourse tionships do improve as parents when families become more aware of the challenges teens face. When compared to their peers, LGBT teens with Individual and Community high levels of family rejection lead to signifi cant Consideration increased risk of suicide, depression, illegal drug Peer rejection, bullying including social use and unprotected sexual intercourse [44 ]. media have resulted in teen and young adult Those who report family acceptance show better suicides that have raised community aware- overall health outcomes and well-being [45 ]. ness via the media. Unfortunately this can Research by Ryan [44 ] published in the jour- happen even based on perceived sexual orien- nal Pediatrics reported signifi cantly higher rates tation and/or gender expressions. School aged of mental and physical health problems among LGBT teens have reported being victims of LGB young adults who experienced high levels verbal (85 %) or physical (40 %) harassment of rejection from their parents while they were and nearly 20 % physical assault [46 ]. adolescents. Specifi cally, LGB adolescents who Victimization in turn correlates with suicide reported higher levels of rejection were: attempts [47 ] and sexual risk and substance abuse [ 48 ]. Policy implications for LGBT • 8.4 times more likely to have attempted youth are paramount within systems where suicide; they are disproportionately represented, as in • 5.9 times more likely to report high levels of foster care, homelessness, and juvenile justice depression; systems [49 , 50]. 150 H.H. Ng and G.S. Blaschke

School Policy reaction also likely contributes to truancy, home- As a place where children and youth spend sig- lessness, self-medication via substance abuse or nifi cant time, schools matter! Signifi cant bully- counterintuitively, attempts to reduce of feelings ing occurs within schools which have short and of isolation through risky sexual behaviors. long term implications [51 ]. Even modest reductions in school based victimization would result Isolation in signifi cant improvement for LGBT youth In 2002, Hazler and Denham conceptualized teen health. Four key policy recommendations were isolation as resulting from peer on peer abuse published in 2011 by Russel et al. [52 ]. including bullying, teasing and harassment [ 53 ]. Johnson and Amella expanded on this in 2013, 1. Enforce clear and inclusive antidiscrimina- identifying several forms of isolation contributing tion/anti-harassment policies inclusive of to risk and therefore potentially amenable via sup- LGBT identity and gender expression ports. They describe isolation of LGBT youth as a 2. Make clear where students should go for complex interaction between social isolation, emo- LGBT information and support tional isolation, recognition of a “different” self- 3. Regular intervention by staff when bias- identity, leading perhaps to identity concealment motivated harassment happens and further cognitive isolation of the teen, These 4. Support gay-straight alliances and other stu- are postulated to be enhanced by lack of traditional dent sponsored diversity clubs supports (rejection by family, friends), lack of con- 5. Integrate LGBT topics into curriculum tact with LGBT community and role models, leading to social withdrawal and often victimization. Cognitive isolation may include inaccurate Societal Stigma information and lack of role models, or others to A growing understanding of trauma-informed discuss self-identity, gender and sexual attraction care, cumulative life stress as a result of adverse or orientation [54 ]. childhood events (ACE), and increased understanding of neuro-biologic changes as a result of Resiliency early brain development, leads one to also postu- Despite these risks, the majority of LGBT youth late a growing emergence of awareness that do remarkably well suggesting resiliency, skill health disparities are not only prevalent in racial acquisition, and perhaps rapidly changing social and ethnic groups, but are also common in sexual acceptance. Mayer et al. suggested many helpful and gender minority populations. LGBT chil- strategies for clinicians and systems including a dren, youth and LGBT headed families are all public health approach [ 55 ]. Clinicians must be vulnerable populations. prepared to deliver nonjudgmental education, advice and services to this vulnerable popula- Internalized Homophobia tion. Many children may need assistance in plan- The society stigma from potential family, peer, ning for coming out, considering potential and role model rejection often leads to internal- reactions of friends, family and others with ized homophobia compounded by isolation and whom they rely. They require accurate information discrimination that may occur. Health profes- and community resources. Risk assessment and sionals must fi rst recognize how their own (or risk reduction using preventive medicine and their systems) response may also lead to injury or clinical tools like screening instruments, motiva- re-injury. The high level of stress may manifest tional interviewing and brief intervention and as anxiety, depression, and exaggerated risk tak- referral to therapy are imperative for all adoles- ing behavior of adolescents. Shame, guilt and cents including LGBT youth. As the majority of denial are all potential cofounders. Adolescents LGBT youth are already seeing providers, are also not likely equipped with skills and neu- becoming comfortable with adolescent discus- rodevelopmental maturation including reasoning, sions regarding sexuality is important. While limit setting, impulsiveness etc. Familial, societal adolescent health clinics and clinics specifi c to 11 Pediatric and Adolescent LGBT Health 151

LGBT communities are sometimes available in LGBT Youth in the Context of Their urban centers, the majority of teens will not have Development, Family ability to access such centers. Recognizing this and Community is only one of many populations that primary care providers in particular must develop knowl- Adolescence is often a diffi cult stage develop- edge, attitudes and skills a list of resources, pol- mentally (and psychosocially) for everyone icy statements, and educational materials are involved in some way. Parents, family members, included in Appendix 1. friends and trusted adult role models may struggle with any adolescent’s behavior. Adding sex- Supporting Parents of Sexual ual minority status may compound the diffi culty. Minority Youth This can be explained in part by understanding While culture, religion, tradition and prior status some basic principles of neurodevelopmental dif- of family relationships will all impact the par- ferences in children and adolescents, and recall- ents’ reaction and response to the news of a ing how normal neural maturation affects coping child’s sexual and gender identity, every family is mechanisms of children and youth. really a unit unto itself. Culture, religion, tradi- Young children, for example, respond to stick- tion and relationships are all highly individual- ers to change behavior more than expected in part ized by individuals and families. Many parents because of how developing brains respond to may ‘already know’ the ‘secret’ that their child rewards at that stage. A small reward (sticker) can reveals. Parents may also experience stages of result in much jubilation and pays off in achieving grief. Their own personal experience or knowl- behavioral change. Adolescents, on the other hand, edge of bias, discrimination, victimization and would say “lame ” or “whatever ” to any care pro- protecting their child are all items that parents vider who attempt to change behavior through the will need to process. Doing so with others is use of stickers. Instead their ‘reward pathways’ often necessary. Health care providers for chil- respond to more dramatic behaviors that often dren also have a relationship with parents. While involve risk, including “sex, drugs (alcohol), and their primary duty is to protection of the child, rock and roll.” In general, a child’s brain also pediatricians and others providers caring for chil- develops from ‘inside out’ (brain stem to fi ne dren, can assist parents as their response or reac- motor skills) and from ‘back to front’ (caudal to tion may evolve over time. Providing factual data cephalic development.) Executive functions, deci- about risks, risk reduction and/or gender transitions sion making, and working through anticipated and will be needed. Providers of children and youth unanticipated consequences are examples of will need to educate themselves about commu- frontal lobe functions that gain strength in late nity agencies that can assist with more in depth adolescence and young adulthood. Children with information and/or support groups for their chil- anatomic or physiologic (organic) changes in dren and/or themselves. Again using techniques these areas and individuals with variable expres- like motivational interviewing, readiness for sion of these incompletely understood functions change and focusing on long term outcomes for may never develop strengths in these domains. their children may be benefi cial. Self- affi rming The timing of the development of these skills is assistance to the youth while simultaneously also individualistic and subject to both genetics guiding parents in their supportive role may and environment. require separate sessions and/or providers. The Parents (or parent equivalent fi gures) when American Medical Association, the American present may struggle in guiding their youth in Psychological Association, the American many areas since peer infl uence and role models Academy of Pediatrics, the Society of Adolescent play such an important role in this age group. Health and Medicine, all have policies/positions When LGBT orientation and sexual behaviors that reject consideration of conversion therapy are added to this mix, one can realize additional (therapies which have a goal to change sexual stressors these youth (and families) may face as orientation) as unsubstantiated and harmful. described in Chap. “epidemiology”. 152 H.H. Ng and G.S. Blaschke

In caring for LGBT youth, many clinicians will offered in a private place. Actions that were encounter parents, families and other trusted adults perceived as offensive included an assumption of who are struggling with their child’s sexuality. heterosexuality, a negative reaction to revealing This presents an opportunity for physicians and sexuality, an assumption of greater risk of disease health professionals to provide messages of accep- (as orientation does not equal behavior) and tance and support which are central to improving delivery of health care information from a health outcomes for sexual minority youth. An judgmental point of view. example of such an accepting message is: One way health professionals can improve As your child’s health care provider, I recognize it health outcomes for LGBT youth is to exhibit must be diffi cult for you to grapple with your both cultural and clinical competency when child’s emerging sexuality. What we know is that working with sexual minority youth. Start the youth who receive supportive messages about interview in a manner that elicits the patient’s themselves tend to do better and have better health outcomes. I know you must care about your child, preferred name, pronoun and any gender-referent and that is why you came to see me. How can I terms used in self-identifi cation. (Refer to terms help you offer your child a parental message of and vocabulary covered in previous chapters for a support and acceptance? more in depth review of terminology used for In the effort to better understand the experi- self-identifi cation.) It is important to remember, ence of LGBT youth within the context of their that for some youth, the terms used for self- development, family and community, it is impor- identifi cation are fl uid and may change over time. tant to acknowledge how little is known from Additionally, some may use words like “Queer” population based research versus high-risk sam- or “Genderqueer” as an all-encompassing term if pling of the gay community. These facts make it self-identifi cation. imperative to follow the IOM report recommen- When obtaining a sexual history, it is impor- dations to expand knowledge in the many sub- tant to be aware that youth commonly perceive groups of the LGBT population. providers as authority fi gures. Always preface any inquiry into behavior or risk-based screening in the framework of confi dentiality, consent and normalization. Confi dentiality is important to Reaching LGBT Youth in the Clinical gain an adolescent’s honest response and trust in Setting a provider’s guidance. Not all revelations can be maintained in confi dence, however, and a pro- Research indicates that the majority of youth do vider should always explain the limits of confi - value their physician’s advice about sexuality. dentiality, which vary by state. Such limits Factors contributing to greater youth comfort generally include a break in confi dentiality when when discussing such matters with their own the adolescent’s behaviors or answers to ques- regular health provider included addressing tions place him/her (or others) in danger. issues of general sexual health and the adolescent’s Providers also are generally mandated reporters own high self-esteem [56 ]. for child abuse, variably for intimate partner vio- In addition, Ginsberg et al. assessed LGBT lence reporting, and age differences between Youth Comfort and Safety in Health Settings in sexual partners as defi ned by state law. State spe- 2002 and found that LGBT youth value the same cifi c laws often address age difference between clinic characteristics desired by all adolescents: intimate partners where one is below 18. privacy, cleanliness, honesty, respect, compe- Homicidal and suicidal ideation also obligates tency and a non-judgmental stance [57 ]. Less but action by providers. Discussion of consent for somewhat important factors included having a treatment of mental health, alcohol and drugs, LGBT provider, a site that focuses on LGBT options regarding pregnancy, contraception and youth, having magazines for LGBT people in sexually transmitted infections can vary some- waiting rooms, and having health information what by state. In addition, the same defi nitions 11 Pediatric and Adolescent LGBT Health 153 may not apply from a legal, ethical or moral with the permission of the child may be an important framework. role entrusted to the provider by the involved Parents or other adult fi gures involved may also LGBT youth. need to understand the limits of disclosure for Prior to asking a patient about sexual attrac- youth. Provide reassurance, however, that a pro- tion or behaviors, generally preface the discus- vider will inform authorities/parents or other sion by normalizing the questions themselves. responsible adults, if something arises that can or For example, begin by stating “I ask all my must be shared such as danger to self/others. patients these questions, and in this way .” Involving a trusted parent, adult family member or Generic open-ended questions may also facili- friend may be indicated and lead to better out- tate open and honest communication. Opening comes for many domains, but it’s important to the conversation with “Tell me about your part- remember that breaking confi dentiality when nec- ner ” could be one way to begin. Others may be essary does not necessarily mean telling them all more comfortable asking “What type of person the details. Alternatively, seeking permission from are you attracted to? Who are you sexually the involved youth and negotiating the details of active with?” Remember that adolescents may what can be shared with parents is possible. not understand generic terms like sexual activ- (Examples include: SADD Contract for Life; sub- ity until they are signifi cantly mature. As one stance abuse treatment; making decisions about example, the provider may need to specifi cally unwanted and/or unplanned pregnancy.) ask about each behavior as adolescents often do Be careful to realize providers are in a pow- not consider oral sex to be sexual activity. By erful position compared to youth, and one’s normalizing this discussion, you are relieving own moral, ethical and religious beliefs can anxiety that adolescents sometimes feel that infl uence this interaction, either consciously or adults ‘ can tell they had sex by just looking at unconsciously. Unconscious or systematic rac- them .’ You do not want any adolescent to feel ism in medicine as demonstrated in health care that you are singling them out by asking them is an example of how this may also occur in the the ‘gay questions’ because they look, sound or setting of sexual minority youth. Many orga- act in a gender non-conforming way. nized medicine and specialty organizations, Stereotypes are generally only partially true, including the American Medical Association and cultural assumptions made by many can be and the American Academy of Pediatrics, also off putting if overly applied. Every family and suggest that providers refer patients to other individual is a ‘culture’ unto themselves. care providers when there are signifi cant con- Everyone owns their own religious, ethnic, racial, fl icts that may interfere with providing care in cultural and social norms. Stated another way, no such situations. two African American, Roman Catholics, or Also keep in mind safety for adolescents and North Westerners share the exact same character- LGBT youth specifi cally. As noted previously, istics. Similarly, no two Master’s degrees, in the suicide, homelessness (often by familial rejection), same fi eld and even from the same university are intimate partner violence, substance misuse, bullying, ever exactly the same. and potential traffi cking are examples of signifi - As discussed in a prior chapter, common ter- cant risk factors within this population. While minology used by LGBT adolescents may vary encouraging ‘coming out’ and self-acceptance is by many factors, including generation, slang, important, doing so in a safe environment and geography, culture, etc. Providers should demon- keeping safety in mind is important. Negotiating strate fl uidity of language and use of Queer/ and facilitating this process maybe one role Genderqueer as a potentially all-encompassing where providers can assist youth. It is not the pro- identity term. Utilize active listening skills, vider’s job to “out” the child to anyone; on the defi ned as listening for meaning. Strength of con- other hand, facilitating diffi cult conversations viction, concern or terminology may be crucial. 154 H.H. Ng and G.S. Blaschke

Listening for affi rming or dis-congruent language • D rugs: Tobacco, alcohol, marijuana, cocaine, or meaning, affect, or descriptions of family others acceptance can be crucial when interacting with • S afety: Hazardous activities, seatbelts, helmets LGBT adolescents. Prefacing a conversation • F riends: Confi dant, peer pressure, interaction with “I care for you, no matter what you say ” is • I mage: Self-esteem, looks, appearance one way to express a non-judgmental stance. • R ecreation: Exercise, relaxation, TV, media Providing generic examples of how others games have responded may sometimes assist in breaking • S exuality: Changes, feelings, experiences, the ice. Just as addressing suicide does not identity increase the individual rate/risk of suicide, pro- • Threats: Depressed or upset easily, harm to viders should not fear asking questions and taking self or others a comprehensive history. If nothing else, even if a teen does not respond or disclose at the time of These methods, however, have not been vali- initial questioning, it will prompt them to know dated as a method for population or risk-based that you and/or your clinic is a place to come in screening of youth. Screening tools for mental the future with any of their LGBT concerns. health and substance use that can be used at the Remember that adolescents and youth will be population or risk-based, individual level, include actively listening to your response to their ques- PHQ2, PHQ 9A, CRAFFT, AUDIT, POSSIT, tions and are likely to over-interpret a facial SCARED, Vanderbilt ADHD, etc. Universal and expression, unintended attitude, or some other risk-based medical screening based on age, sex- form of non-verbal communication. Sexual minor- ual and other behaviors, and pertinent anatomic ity youth, like most adolescents, are savvy and can organs in the Trans person can be completed as sense negative emotional reactions from a health indicated per national guidelines (mammogram, provider. Thus, assessing the youth’s understand- vaginal and/or rectal pap, etc.). ing may allow clarifi cation of any unintended non- Some authors advocate for a strength-based verbal communication cue or comment. Avoiding approach to adolescents [59 ]; questioning and a negative response is important. Likewise, responding toward an adolescent’s strengths in acknowledging and/or apologizing for a misstate- each of these areas (and in general) rather than a ment if one should occur in a heartfelt way is risk-based approach. By developmental defi ni- important to gain, sustain and maintain trust. tion, adolescents and youth are more oriented to Mnemonics such as HEADDSS, SHADDES peers and environment, but this must also be or HEADSFIRST can help a provider organize placed in the context of the individual person, the an adolescent or young adult visit. These clinical family (biologic or by choice), and the commu- tools, originally developed by Goldenring [ 58 ], nity where they reside (peers, culture, religion/ have been adapted as foundational questions to spirituality, school, etc.) discuss in an adolescent’s social history and Finally, a provider must also address their essentially complete ‘developmental and risk entire system and practice of care where LGBT based’ surveillance. The HEADSFIRST mnemonic youth are seen. It is difficult for any provider below, for example, can provide a framework to to overcome a negative experience sometimes explore how adolescent sexuality and/or gender inadvertently initiated further up-stream by other identify may impact different aspects of an ado- care team members, or by culturally incompetent lescent’s life and health. forms, handouts or other ‘hidden’ messages delivered that indicate less openness by the prac- • H ome: Separation, support, “space to grow” tice or facility where these youth may be seen. • E ducation: Expectations, study habits, Indeed, much of the research we have on a vari- achievement ety of subgroups in this population actually • A buse: Emotional, verbal, physical, sexual comes from alternative locations where care may 11 Pediatric and Adolescent LGBT Health 155 be sought. Many youth are seen in settings other in practicing discussions for learners in than a medical home (pediatric, family medicine medicine. or internal medicine settings.) School based A list of references, tools, resources and orga- health centers, urgent care, sports medicine nizations that support efforts to ameliorate health clinics, homeless or at-risk centers, and juvenile disparities for LGBT individuals and to improve justice programs are just some examples where the climate for LGBT health professionals LGBT youth may be seen. (including allies) is listed in Appendix 1 for general LGBT topics and Appendix 2 for transgender topics. Appendix 3 includes some simple measures Guidelines and Best Practices practices may take to improve LGBT friendli- for Care of Sexual Minority Youth ness. Appendix 4 reviews some anticipatory guidance regarding sexuality applicable to all The LGBT Advisory Committee to the AMA adolescents. Board of Trustees helped create a “Compendium of Health Profession Association LGBT Policy and Position Statements.” This includes 101 policy or Guidelines and Best Practices position statements by 10 major health profes- for Care of Gender sional associations. This list was last updated in Non-conforming Youth 2013 and is available on line at the GLMA website. There are limited guidelines for assisting the The most recent American Academy of transgender population. The World Professional Pediatrics (AAP), Bright Futures: Guidelines for Association for Transgender Health’s Standards Health Supervision of Infants, Children and of Care (WPATH) were published in 2001 and Adolescents, 3rd Edition [60 ] was funded by the updated in 2011 [65 ]. In addition the Endocrine US Department of Health and Human Services, Society published “Endocrine Treatment of Health Resources and Services Administration, Trans-sexual Persons: An Endocrine Society and the Maternal Child Health Bureau. These spe- Clinical Practice Guideline” in 2009 [ 66 ]. These cifi c guidelines contain a theme chapter on pro- guidelines focus on proper diagnosis and treat- moting healthy sexual development and sexuality. ment of gender dysphoria and any comorbidity if The AAP also recently published specifi c guide- present. The experienced therapist will focus on lines on providing LGBT care in offi ce settings. self-affi rming therapy. Classifi cation for the pro- One of the more comprehensive lists of cess is based on reversible, partially reversible resources available for a variety of audiences was and irreversible treatment. In conjunction with published by Perrin et al. [61 ] The AMA also guidance from therapists, reversible pubertal convened and published proceedings from an suppression using GnRH analogs is advised no adolescent educational forum addressing youth earlier than Tanner stage 2 or 3. This allows the bullying [62 ]. The Trevor Project™ founded in adolescent to achieve best desired results with 1998 by the creators of Academy Award® winning hormonal therapy after age 16. Often Trans teens short fi lm TREVOR is a LGBT youth crisis inter- present too late to start suppressive therapy, vention and suicide prevention program. The fi lm necessitating further interventions at later stages addresses adolescent angst of coming out [63 ]. of pubertal development. Partially reversible The It Gets Better Project™ was created by Dan cross gender hormonal therapy should be moni- Savage to bring messages of hope to LGBT youth tored for desired and adverse medical complica- around the world [64 ]. tions (see Table 11.1 ). Recommendations are that For medical educators, the videos from the irreversible surgical therapy should occur after Adolescent Reproductive and Sexual Health age 18. Many more details are available via the Education Project http://prh.org/teen- reproductive- American Academy of Pediatrics Committee on health/arshep-explained/ can be extremely useful Adolescence 2013 statement and technical report 156 H.H. Ng and G.S. Blaschke

Table 11.1 Side effects of cross-sex hormones Males M. Framing youth: 10 myths about the next MTF patients FTM patients generation. Common Courage Press. 1999. Estrogen Testosterone Deep venous thrombosis Hyperlipidemia Prolactinomas Polycythemia Books for Children Hypertension (BP) Male pattern baldness Heron, How would you feel if your dad was Liver disease (LFTs) Acne gay? —Examines the concerns of three chil- Decreased libido dren with gay parents. Increased breast cancer Newman, Heather has two mommies —Illustrates Spironolactone the loving and supportive family of 5-yearold Hyperkalemia Heather and her two lesbian mothers. So lov- Hypotension ingly done, you’ll wonder what all the fuss was about in the NYC School Board. Willhoite, Daddy’s roommate —Illustrates many on the Ofﬁ ce-Based Care for Lesbian, Gay, Bisexual, family situations with this non-traditional Transgender and Questioning Youth [67 , 68 ]. family. In conclusion, LGBT youth have many chal- Willhoite, Families, a coloring book — lenges, barriers and disparities in comprehensive Appreciating diverse (racial, generational, health care including physical, sexual and mental cultural, sexual) families, Ages 2–6. health. While facing the same concerns of all adolescents, they have additional challenges due to stigmatization, isolation, discrimination when Books for Adolescents Self Help compared to heterosexual teens. These combine to Bass and Kaufman, Free your mind: The Book place LGBT youth and increased risk for many for Gay, Lesbian, and Bisexual Youth and items that will require providers to focus motiva- Their Allies. Harper Perennial. tional interviewing and risk reduction strategies. Be yourself: Questions and answers for gay, les- Family response, provider supportiveness and bian and bisexual youth —Factual, no- social support at the school and community level nonsense, homo-positive 22-page pamphlet all help mitigate negative outcomes. While the available from PFLAG. vast majority of LGBT youth do quite well many Due, Joining the tribe: Growing up Gay and helpful strategies for the providers, clinics and Lesbian in the 90’s. Doubleday. communities of care have been shared. Ongoing Marcus, Is It a Choice? Answers to 300 of the efforts and research into resiliency and supports, Most Frequently Asked Questions about Gays understanding risks, risk reduction and prevention and Lesbians. Harper Collins. and treatment of HIV in particular, remain para- McNaught, On being gay: Thoughts on family, mount to the health of this community. faith, and love —Gay-positive essays on family, faith, and love, and what it means to be gay. Supplement 1: Resources Rench, Understanding sexual identity: A book for gay teens and their friends —Discusses com- Useful Books for Youth, Counselors, ing out, healthy sexuality, homophobia, reli- and Family gious views, and resources.

Books Losing generations: adolescents in high-risk set- Novels and Autobiographies tings: panel on high-risk youth. Commission Due, Joining the tribe: Growing up gay and les- on Behavioral and Social Sciences and bian in the 90’s —Interviews with several Education, National Research Council. 1993. teens of varied backgrounds. 11 Pediatric and Adolescent LGBT Health 157

Books and Articles for Counselors over the Lifespan. New York: Oxford Bergstrom and Cruz, Counseling lesbian and gay University Press, 1995. male youth: Their special lives/special needs. Butler, J. Gender Trouble: Feminism and the Increases counselors’ awareness of the issues. Subversion of Identity. New York: Routledge, Berzon, Positively gay: New approaches to gay 1990. and lesbian life —Valuable anthology on liv- Butler, J. Bodies That Matter: On the Discursive ing a fulfi lling lesbian or gay life. Limits of Sex. New York: Routledge, 1993. Shiman, The prejudice book: Activities for the Catallozzi M, Rudy B. Lesbian, gay, bisexual, classroom—Although the book does not transgendered, and questioning youth: The explicitly mention lesbians and gays, the dis- importance of a sensitive and confi dential cussion can certainly address these groups. sexual history in identifying the risk and Excellent vehicle for exploring prejudice, ste- implementing treatment for sexually transmit- reotypes, and discrimination. ted infections. Adolescent Medicine Clinics, Volume 15, Number 2—June 2004. Clare, E. Exile and Pride: Disability, Queerness, Coming-Out and Parental Acceptance and Liberation. Boston: South End Press, Handbooks 1999. Bernstein, Straight parents/gay children — Creed, B. Lesbian Bodies: Tribades, Tomboys, Addresses parental fear and helps parents and Tarts. In E. Grosz and E. Probyn (eds.), appreciate their child. Told through the vehi- Sexy Bodies: The Strange Carnalities of cle of author accepting his lesbian daughter. Feminism. New York: Routledge, 1995. Borhek, Coming out to parents: A two-way sur- D’Augelli, A. R. Identity Development and vival guide for lesbians and gay men and their Sexual Orientation: Toward a Model of parents—Good resource for lesbians and gay Lesbian, Gay, and Bisexual Development. In men, counselors, and parents. Chapter on reli- E. J. Trickett, R. J. Watts and D. Birman (eds.), gious issues. Human Diversity: Perspectives on People in Borhek, My son Erik—Acceptance after initial Context. San Francisco: Jossey-Bass, 1994. diffi culty relative to fundamentalist religious Diaz, R. Latino Gay Men and Psycho-Cultural beliefs. Good for parents with religious issues. Barriers to AIDS Prevention. In M. Levine, Fairchild and Hayward, Now that you know: J. Gagnon and P. Nardi (eds.), In Changing What every parent should know about homo- Times: Gay Men and Lesbians Encounter sexuality. Harcourt Brace Jovanivich. HIVIAIDS. Chicago: University of Chicago Press, 1997. Fassinger, R. E. The Hidden Minority: Issues and Reference and Offi ce Books to Consider Challenges in Working with Lesbian Women Mastoon, Adam. The Shared Heart-Portraits and and Gay Men. Counseling Psychologist, 1991, Stories Celebrating Lesbian, Gay, and Bisexual 19(2),157–176. young people. Harper Collins Press 1997 Feinberg, L. Transgender Warriors: Making Lathom, Bob. The invisible minority: GLBTQ History from Joan of Arc to Dennis Rodman. Youth at Risk. Point Richmond Press 2000 Boston: Beacon Press, 1996. Owens, Robert. Queer Kids: The Challenges and Feinberg, L. Trans Liberation: Beyond Pink or promises for Lesbian, Gay and Bisexual Youth Blue. Boston: Beacon Press, 1998. Harrington Park Press 1998. (State by State Fox, R. Bisexual Identities. In A. R. D’Augelli reference list of resources included.) and C. J. Patterson (eds.), Lesbian, Gay, and Boykin, K. One More River to Cross: Black and Gay Bisexual Identities over the Lifespan: in America. New York: Anchor Books, 1996. Psychological Perspectives. New York: Brown, L. S. Lesbian Identities: Concepts and Oxford University Press, 1995. Issues. In A. R. D’Augelli and C. J. Patterson Halberstam, J. Female Masculinity. Durham: (eds.), Lesbian, Gay and Bisexual Identities Duke University Press, 1998. 158 H.H. Ng and G.S. Blaschke

Harry Benjamin International Gender Dysphoria of this service for teens (available at 416-924- Association. The HBIGDA Standards of Care for 21 00). Gender Identity Disorders, Sixth Version. 2001. Safe schools: Making schools safe for gay and http://www.wpath.org/documents2/socv6.pdf lesbian students (available from Donna Klein, F. The Need to View Sexual Orientation as Brathwaite, Safe Schools Program, Multivariable Dynamic Process: A Theoretical Massachusetts Department of Education, 617- Perspective. In D.P. McWhirter, S. A. Sanders 388-3300, ext. 409. Plan to send blank tape). and J. M. Reinisch (eds.), Homosexuality/ Teaching respect —Produced by the Gay, Lesbian, Heterosexuality: Concepts of Sexual Orientation. and Straight Teachers Network. This video New York: Oxford University Press, 1990. explains why educators should be concerned Klein, F. The Bisexual Option. (2nd ed.) about homophobia and abuse in school (avail- New York: Haworth Press, 1993. able at 212-727-0135). Raffo, S. Introduction. In S. Raffo (ed.), Queerly Both My Moms’ Names Are Judy is a provocative Classed. Boston: South End Press, 1997. 10-min video that shows elementary school Renn, K. A., and Bilodeau, B. Analysis of LGBT children who have gay or lesbian parents talk- Identity Development Models and ing about their experiences at school. The Implications for Practice. In R. Sanlo (ed.), video is available from Lesbian & Gay Parents Gender Identity and Sexual Orientation Association, 519 Castro St., Box 52, San Research, Policy and Personal Perspectives. Francisco, CA 94114-2577, Phone: 415-522- San Francisco: Jossey-Bass, 2005. 8773, e-mail: [email protected] (10 min, Rhoads, R. A. Coming Out in College: The $25 individual/$50 institution). Struggle for a Queer Identity. Westport, Gay Youth. This powerful video is extremely Conn.: Bergin and Garvey, 1994. effective in showing why sexual orientation Savin-Williams R. The New Gay Teenager. Harvard education is important. A variety of young University Press, Cambridge, MA, 2005. people are interviewed, and the effect of Wilchins, R. A. Read My Lips: Sexual Subversion family support is revealed. The results range and the End of Gender. New York: Firebrand from suicide to having a same-sex date for the Books, 1997. senior prom. I have used this video for faculty Wilchins, R. A. Queerer Bodies. In J. Nestle, at all grade levels as well as for high school C. Howell and R. A. Wilchins (eds.), students. Audiences always gave it high marks Genderqueer: Voices from Beyond the Sexual on the evaluation form (40 min, $59.95). Binary. Los Angeles: Alyson, 2002. Out of the Past traces the emergence of gay men Wilson, A. How We Find Ourselves: Identity and lesbians in American history through the Development in Two-Spirit People. Harvard eyes of a young woman coming to terms with Educational Review, 1996, 66(2), 303–317. herself. This ﬁ lm by Jeff Dupre won the Sundance Film Festival Audience Award for Best Documentary as well as a Bronze Apple from National Educational Media Foundation Videos in 1998 (65 min, $25 individual/$99 institution). It’s elementary: Talking about gay issues in school—Explores the teaching of tolerance in six different classrooms (available from The Trevor Project: www.trevorproject.org Women’s Educational Media, San Francisco, It Gets Better: www.itgetsbetter.org 415-641-4632). PRCH: Adolescent Reproductive and Sexual Pride and prejudice: The life and times of gay Health Education Project and lesbian youth— Focuses on a Toronto http://prh.org/teen-reproductive-health/ weekly youth group showing the signiﬁ cance arshep-explained/ 11 Pediatric and Adolescent LGBT Health 159

www.prch.org email: [email protected], phone: • National Federation of Parents, Family and 646-366-1890 Friends of Lesbians and Gays (PFLAG): Physicians for Reproductive Choice and Health http://www.community.pﬂ ag.org 55 West 39th St, suite 1001, New York, NY, • Youth Resource: http://www.amplifyyour- 10018-3889 voice.org/youthresource Fax 646-366-1890 Medical Professional Organizations GLMA: Health Professionals Advancing LGBT National Organizations Equality: http://www.glma.org AMA LGBT Advisory Committee: https://www. • Coalition for Lesbian and Gay Student Groups ama-assn.org/ama/pub/about-ama/our- (214) 621-6705 people/member-groups-sections/glbt- • Gay, Lesbian, Straight Education network : advisory- committee.page http://www.glsen.org The World Professional Association for Transgender • National Coalition for LGBT Youth : http:// Health, Inc (WPATH): http://wpath.org www.outproud.org Adolescent Reproductive and Sexual Health • Sexuality information for Teens, by Teens : Education Project: http://www.prh.org/ARSHEP http://www.sxect.org • The UCSF Center for AIDS Prevention Studies: http://hivinsite.ucsd.edu Talk Lines/Hotlines/Crisis Lines • An AIDS and HIV information resource: http://thebody.com • National AIDS Advocacy Organization : http:// AIDS Foundation Hotline (English (800) for AIDS aidsaction.org/ and Spanish) • Information on AIDS and HIV in Spanish: GLBT Peer Youth Hotline (800) 399-PEER http://www.ctv.ed/USERS/fpardo/home.html Gay, Lesbian, and Bisexual Youth (800) 347-TEEN • The HIV/AIDS Treatment Information Service Line Gay Men’s Health Crisis (212) 807-6655 (ATIS): http://hivatis.org (GMHC)—HIV/AIDS • The American Academy of Child and LYRIC Gay Youth Talk Line and (800) Adolescent Psychiatry—Facts for Families: Info Line 246-PRIDE http://www.aacap.org/publications/factsfam/ Lesbian AIDS Project HIV/AIDS (212) 337-3532 index.htm (AIDS #30 GL Adol #63) info and referral • National Gay and Lesbian Hotline: National Center for Lesbian Rights (800) 528-6257 1-800-SOSGAYS National HIV/AIDS Hotline (800) 342-AIDS • National Runaway Switchboard and National Lesbian and Gay Crisis (800) 221-7044 Adolescent Suicide Hotline: 1-800-621-4000 Line • National Youth Advocacy Coalition (NYAC): National Native American AIDS (800) 283-AIDS Prevention Center http://www.nyacyouth.org National Runaway Hotline (800) 843-5200 • The Trevor Project: http://www.trevorproject. National Suicide and Runaway (800) 621-4000 org 866-4-U-TREVOR Switchboard • Transfamily: http://transfamily.org National Suicide Hotline (800) 882-3386 • Transkids Purple Rainbow: http://www.tran- Out Youth Hotline (800) 96-YOUTH skidspurplerainbow.org Parents and Friends of Lesbians (415) 921-8850 • Family Acceptance Project: http://familypro- and Gays (202) 638-4200 ject.sfsu.org Project Inform Hotline—HIV/ (800) 822-7422 • It Gets Better: http://www.itgetsbetter.org AIDS Information 160 H.H. Ng and G.S. Blaschke

Hines, Sally. TransForming Gender: Transgender Supplement 2: Transgender Practices of Identity, Intimacy and Care. Bristol, UK: Policy Press, Univ of Bristol, 2007. Medical Kirk, Sheila. Hormones for the Female to Male. Available from www.ifge.com . Bilodeau, Brent. Genderism: Transgender Lev, Arlene. Transgender Emergence: Students, Binary Systems and Higher Therapeutic Guidelines for Working With Education. Saarbriicken, Germany: VDM Gender Variant People and Their Families Verlag Dr. Muller Aktiengesellshaft, 2009. (Haworth Marriage and the Family). The Bockting, Walter, and Eric Avery. Transgender Haworth Clinical Practice Press, impt of Health And HIV Prevention: Needs Haworth Press, Binghamton, NY, 2004. Assessment Studies from Transgender MacGillivray, Ian K. Gay-straight Alliances: A Communities Across the United States. Handbook for Students, Educators, and Parents Binghamton, NY: The Haworth Medical (Haworth Series on GLBT Youth &Adolescence). Press, 2005 Binghamton, NY: Harrington Park Press, 2007 Bockting, Walter, and Joshua Goldberg (eds). Makadon, Harvey J., et al. Fenway Guide to Guidelines for Transgender Care. Binghamton, Lesbian, Gay, Bisexual & Transgender Health. NY: The Haworth Press, 2007. American College of Physicians, 2008. Coleman, Edmond J., Walter 0. Bockting, and Mallon, Gerald P. Social Work Practice with Sheila Kirk. Transgender And HIV: Risks, Transgender and Gender Variant Youth. Prevention, and Care. Binghamton, NY: New York: Routledge, 2009. Haworth Press, 2001. Meezan, William, and James I. Martin, eds. Denny, Dallas, ed. Current Concepts in Research Methods With Gay, Lesbian, Bisexual, Transgender Identity. Garland Reference and Transgender Populations (Journal of Gay Library of Social Science, 1998. & Lesbian Social Services, 3/4) Drescher, Jack, and Ubaldo Leli, eds. Transgender Nunter, Nan D., Courtney G. Joslin, and Sharon Subjectivities: A Clinician’s Guide (Journal of M. McGowan. The Rights of Lesbians, Gay Gay & Lesbian Psychotherapy Monographic Men, Bisexuals, and Transgender People Separates). Binghamton, NY: Haworth (American Civil Liberties Union Handbook). Medical Press, 2004. Southern Illinois UP, ACLU, 2004 Ellis, Alan L., Melissa White, and Kevin Schaub. Meyer, Ilan H., and Mary E. Northridge, eds. The The Harvey Milk Institute Guide to Lesbian, Health of Sexual Minorities: Public Health Gay, Bisexual, Transgender, and Queer Perspectives on Lesbian, Gay, Bisexual and Internet Research (Haworth Gay & Lesbian Transgender Populations. New York: Studies). Harrington Park Press, impt of Columbia UP, 2006. Haworth Press, Binghamton, NY, 2002 O’Keefe, Tracie, and Katrina Fox, eds. Finding Ettner, Randi, Stan Monstrey, and Even Eyler. the Real Me: True Tales of Sex and Gender Principles of Transgender Medicine and Diversity. San Francisco: Jossey Bass, 2003. Surgery (Human Sexuality). Binghamton, NY: Sanlo, Ronni L., ed. Working with Lesbian, Gay, Haworth Press, 2007. Bisexual, and Transgender College Students: A Gottlieb, Andrew. Interventions With Families of Handbook for Faculty and Administrators (The Gay, Lesbian, Bisexual, And Transgender Greenwood Educators’ Reference Collection). People: From the Inside Out. Binghamton, Westport, CT: Greenwood Press, 1998. NY: Haworth Press, 2006. Sears, James T. Gay, Lesbian, And Transgender Harcourt III, John P. Current Issues in Lesbian, Issues In Education: Programs, Policies, And Gay, Bisexual, And Transgender Health. Practice (Haworth Series in GLBT Community Binghamton, NY: Harrington Press (impt of and Youth Studies). Binghamton, NY: Haworth Press), 2006. Harrington Park Press, 2005. 11 Pediatric and Adolescent LGBT Health 161

Valentine, David. Imagining Transgender: An Brown, Mildred, and Chloe Rounsley. True Selves: Ethnography of a Category. Durham, NC: Understanding Transsexualism: For Families, Duke University, 2007. Friends, Coworkers and Helping Professionals. Whittle, Stephen, and Susan Stryker. The San Francisco: Jossey-Bass, 2003. Transgender Reader. Binghamton, NY: Cascio, J., Catherine Brown, and Beatrice Haworth Park Press, 2005; New York: Gordon. Dragonﬂ y Stories: Stories Routledge, 2006. Celebrating the LGBTQ Community , (vol. 1). Winters, Kelley. Gender Madness in American Kearney, MI: Rainbow Legends, LLC, 2007. Psychiatry: Essays from the Struggle for Published in the Journal of GLBT Family Dignity. ISBN l-4392-2388-2, GID Reform Studies, Volume 4, Issue 4 September 2008, Advocates pages 543–545. Feinberg, Leslie. Trans Liberation: Beyond Pink or Blue. Boston: Beacon Press, 1998. Gold, Medical Journals Mitchell, with Mindy Drucker. Crisis: Growing Up Gay in America. Greenleaf Book Gagne, Patricia, Richard Tewksbury and Deanna Club Press, 2008. McGaughey, Coming out and Crossing over: Green, Jamison. Becoming a Visible Man. Identity Formation and Proclamation in a Nashville: Vanderbilt UP, 2004. Transgender Community. Gender and Society , Heman, Joanne. Transgender Explained For Vol. 11, No.4 (Aug., 1997), pp. 478–508. Those Who Are Not. Bloomington, IN, http://www.jstor.org/stable/190483 AuthorHouse, 2009. P Lee, C Houk—The Diagnosis and Care of Howard, Kim, and Steven Drukman. Out & About Transsexual Children and Adolescents: A Campus: Personal Accounts by Lesbian, Gay, Pediatric Endocrinologists’ Perspective. J Ped Bisexual & Transgender College Students. Los Endocrin Metab, 2006, vol. 19 (no. 2) Angeles: Alyson Publications, 2000. Rosenberg, Miriam, M.D., Ph.D. Recognizing Huegel, Kelly. GLBTQ: The Survival Guide for Gay, Lesbian, and Transgender Teens in a Queer and Questioning Teens. Minneapolis, Child and Adolescent Psychiatry Practice. J MN: Free Spirit, 2003. Am Acad Child Adolesc Psychiatry. 2003 Israel, Gianna E., Donald E. Tarver and Diane Dec; 42(12): 1522–3. Shaffer. Transgender Care: Recommended Stoller, R.J. (1979). Fathers of Transsexual Children. Guidelines, Practical Information, and Personal J. Amer. Psychoanal. Assn., 27:837–866. Accounts. Philadelphia: Temple UP, 1997. Jennings, Kevin, and Pat Shapiro. Always My Child: A Parent’s Guide to Understanding General Adult and Professionals Your Gay, Lesbian, Bisexual, Transgendered or Questioning Son or Daughter. New York: Beam, Cris. Transparent: Love, Family, and Fireside, 2003. Living the T with Transgender Teenagers. “Just Evelyn.” Mom, I Need to be a Girl. Imperial Orlando, FL: Harcourt Brace, 2007. Beach, CA: Walter Trook Publishing, 1998. Boenke, Mary, ed. TransForming Families: Real [276 Date St. Imperial Beach, CA 91932] Stories about Transgendered Loved Ones , 3rd Kane-Kanedemaios, J. Ari, and Vern L. Bullough, ed. New York: PFLAG, 2003. eds. Crossing Sexual Boundaries: Transgender Boyd, Helen. She’s Not the Man I Married: My Journeys, Uncharted Paths. New York: Life with a Transgender Husband. Emeryville, Prometheus, 2006. CA: Seal Press, 2007. Kerry, Stephen. Are You a Boy or a Girl? Intersex Brill, Stephanie A. and Rachel Pepper. The and Genders: Contesting the Uncontested: A Transgender Child: A Handbook for Families and Comparative Analysis between the Status of Professionals. San Francisco: Cleis Press, 2008. Intersex in Australia and the United States of 162 H.H. Ng and G.S. Blaschke

America. Saarbriicken, Germany: VDM Books for Children (Spanish) Verlag, 2008 Kotnla, Dean. The Phallus Palace: Female to Male Dyer, Wayne. Eres increible!: 10 formas de per- Transsexuals. Los Angeles, Alyson Press, 2002. mitir que tu GRANDEZA brille a traves de ti , Lundschien, Randy P. Queering Creole Spiritual Carlsbad, CA: May House, 2006. Traditions: Lesbian, Gay, Bisexual, and Transgender Participation in African Inspired Traditions in the Americas. Binghamton, NY: Books for Teens Haworth Press, 2004. Matzner, Andrew. 0 Au No Keia: Voices From Anders, Charlie. Choir Boy. [available on Hawai’i’s Mahu and Transgender Amazon.com] Communities. 2001 (out of print) St. James, James. Freak Show. New York: O’Keefe, Tracie, and Katrina Fox. Trans People in Penguin, 2007. Love. New York: Routledge, 2008. Rose, Lannie. Saint Clair, C.C. Morgan in the Mirror. ISBN-10: How To Change Your Sex: A Lighthearted Look at 0980334438 ISBN-13: 978-0980334432. POD. the Hardest Thing You’ll Ever Do. Lulu Press, Bomstein, Kate. Hello Cruel World: 1OJ 2004. Alternatives to Suicide for Teens, Freaks and Rudacille, Deborah. The Riddle of Gender: Outlaws. Kindle Edition, 2006. Science, Activism, and Transgender Rights. Sardella, Rebecca. My Brother Beth (out of print) New York: Pantheon Books, 2005. Bomstein, Kate. My Gender Workbook: How to Stryker, Susan. Transgender History (Seal Become a Real Man, a Real Woman, the Real Studies). Berkeley: Seal Press, 2008 You, or Something Else Entirely. New York: Routledge, 1998. Peters, Julie Anne. Luna. New York: Little Books for Children Brown, 2006. Wittlinger, Ellen. Parrotﬁ sh. New York: Simon & Schuster, 2007. Dyer, Wayne, Kristina Tracy, and Melanie Siegel. Incredible You: 10 Ways to Let your Greatness Shine Through. Carlsbad, CA: References for Gender Dysphoria May Mouse, 2005. Ewert, Marcus, and Rex Ray. 10,000 Dresses. Brown, M.L., and Rounsley, A.C. (1996). True New York: Seven Stories Press, 2008. Selves: Understanding Transsexualism for Jimenez, Karleen Pendelton. Are You a Boy or a Families, Friends, Coworkers, and Helping Girl? Toronto, Canada: Green Dragon Press, Professionals . San Francisco, CA: Jossey-Bass. 2000. Brill, S.A. & Pepper, R. (2008). The Kates, Bobbi. We’re Different, We’re the Same. Transgendered Child: A Handbook for New York: Random House, 1992. Families and Professionals . San Francisco, Parr, Todd. It’s OK to be Dif.forent. Little, CA: Cleis Press Inc. Brown, 2001. Cohen- Kettenis, P.T. and Pfafﬂ in, F. (2003) . Perel, Ronnie. Fluffy the Bunny. Available at Transgenderism and intersexuality in www.IFGE.org childhood and adolescents: Making choices . Wanzer, C. Kevin. Choose To Love: A Poem Thousand Oaks, Sage Publications. About Life, Love & Choices. Bloomington, Cohen-Kettenis, P.T., Delemarre-van de Waal, IN: AuthorHouse, 2006. H.A., and Gooren, L.J. The treatment of 11 Pediatric and Adolescent LGBT Health 163

transsexual adolescents: Changing insights. Zucker, K.J. Children with gender identity disor- Journal of Sexual Medicine, 2008, 5, 8, ders: Is there a best practice? [Enfants avec 1892–1897. troubles de l’identite sexuee: y-a-t-il une pra- Delemarre-van de Waal, H.A. and Cohen- tique la meilleure?] Neuropsychiatric de Kettenis, P.T. Clinical management of gender l’Enfance et de l’Adolescence , 2008, 56, identity disorder in adolescents; A protocol on 358–364. psychological and pediatric endocrinology Zucker, K.J. The DSM diagnostic criteria for aspects. European Journal of Endocrinology , gender identity disorder in children. Archives 2006, Nov 155, Suppl 1: 131–137. of Sexual Behavior , 2010, 39, 477–498. Drummond, K.D., Bradley, S.J., Peterson-Badali, M., and Zucker, K.J. A follow-up study of girls with gender identity disorder. Developmental Psychology , 2008, 44, 34–45. Supplement 3: Making Your Health Hembree, W., Cohen-Kettenis, P.T., Delemarre-van Care Setting Safer for LGBTQ Youth de Waal, H., Gooren, L.J., Meyer III, W. Spack, N., et al. Endocrine treatment of transsexual per- (A) Conduct training for staff around homopho- sons: an endocrine society clinical practice bia, cultural competency, confi dentiality and guideline. Journal of Clinical Endocrinology privacy for GLBTQ Youth. and Metabolism , 2009, 94, 3132–3154. (B) Use broad inclusive language for human Spack NP. Transgenderism, Lahey Clinic Medical sexual behavior and relationships that is Ethics , 2005, 12(3). Fall issue. gender neutral. Speigal, A. (May 2008). “All Things Considered:” (C) Insure understanding of consent, confi denti- An Interview with Dr. Norman P. Spack on ality and legal/policies that govern your Pubertal Suppression in Transgender practice. Adolescents. National Public Radio (D) Address anti-gay behavior and language in “Driveway Moments” 2009 Series; clear and consistent manner and according to http://www.npr.org/templates/story/story. same rules that apply to other groups/ php/?storyId=90247842 (part 1) cultures. http://www.npr.org/templeates/story/sto- (E) Designate a resource person (and/or provider) ryId=90273278 (part 2) who is knowledgeable in existing resources Wren, B. (2000). Early physical intervention for and community contacts/programs. young people with atypical gender identity (F) Books, magazines, posters, hotline numbers, development. Clinical Child Psychology and handouts and brochures specifi c or inclusive Psychiatry , 5, 220–231. of LGBTQ should be available. These Zucker, K.J. “I’m half-boy, half-girl”: Play psy- should be visible and accessible (perhaps in chotherapy and parent counseling for gender a private manner.) identity disorder. In R.L. Spitzer, M.B. First, (G) Connect with LGBTQ and/or allies to assist J.B. W. Williams, and M. Gibbons (Eds.), with family navigation, and/or with health DSM-IV-TR’ casebook, Volume 2. Experts tell promotion and prevention programs. how they treated their own patients. (H) Be prepared to help children, youth and fam- Washington, DC: American Psychiatric ilies, as well as other family members, and Publishing, 2006, pp. 321–334 refer them to services they may need. Zucker, K.J. On the “natural history” of gender (I) Items like rainbow stickers, upside down identity disorder in children [Editorial]. Journal pink triangle located in exam rooms or at of the American Academy of Child and front desk can be a subtle way to communi- Adolescent Psychiatry , 2008, 47, 1361–1363 cate the LGBT friendly practice. 164 H.H. Ng and G.S. Blaschke

Supplement 4: Adolescent • Figure out ways to make sure you can carry Anticipatory Guidance for Sexuality through on your decisions. Plan how to avoid risky places and relationships Early Adolescence: 11–14 Years • If you are sexually active, protect yourself and your partners from STIs and pregnancy Abstinence for those who have not had sex, and as an option to those who are sexually experiences, is the best protection from pregnancy, Middle Adolescence: 15–17 Years STIs and the emotional distress of disrupted relationships. Knowing how to protect oneself Sexuality and relationships are an important and one’s partner is critical for those sexually issue in middle adolescence. Parents and ado- active. Delaying sexual debut, is beneﬁ cial for lescents need accurate information and support children. to help them communicate with each other.

Sample Questions Sample Questions Parent : How do you plan to help your child deal For youth: Have you talked with your parents with pressures to have sex? How does your cul- about crushes you’ve had, about dating and rela- ture help you do this? tionships, and about sex? Are you attracted to males, females or both, or are you undecided? Youth : Have you had sex? Was it wanted or Do you have any questions or concerns about unwanted? Have you ever been force or pressured who your gender identity or who you are to do something sexual that you haven’t wanted to attracted to? Have you had sex? do? How many partners have you had in past year? Were your partners male or female or have you For parent: Do you monitor or supervise your had both male and female partners? Were your adolescent’s activities and friends? Do you enjoy partners young, older or your age? Did you use a talking with your adolescent and her friends? Have condom and other contraception? you established house rules about curfews, parties, dating and friends? How do you plan to help your adolescent deal with pressures to have sex? Does Anticipatory Guidance he have any special relationships or someone he For parent : dates steadily? • Encourage abstinence or a return to abstinence • Help your child make a plan to resist pres- Anticipatory Guidance sures. Be there when support is needed Youth : • Support safe activities • It’s important for you to have accurate infor- • If uncomfortable talking about these topics, mation about sexuality, your physical learn more from reliable sources development, and your sexual feelings. Please • Talk about relationships and sex when issues ask me if you have any questions. arise on television, at school or with friends. Be open, nonjudgmental, but honest about Parent : your views • Communicate frequently and share expectations clearly. For youth : • Help your adolescent make a plan to resist • Abstaining from sexual intercourse, including pressures to have sex. oral sex, is the safest way to prevent preg- • Be there for her when she needs support or nancy and STIs assistance. 11 Pediatric and Adolescent LGBT Health 165

Late Adolescence: 18–21 Years References

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Michael Clark , Heshie Zinman , and Edwin Bomba

sources that may lead to a better understanding Purpose of this population (KP3, PBLI3) • Discuss the health disparities faced by LGBT The purpose of this chapter is to provide an over- older adults, including support and caregiving view of the health needs of LGBT older adults. needs, and effective interventions that may The chapter assumes that clinicians who are support optimal health for LGBT older adults interested in improving health outcomes for this (PC5, Pr1, Pr2, SBP1) population must be strong advocates in building • Discuss ways in which current conceptual an evidence-base as well as improving systems models of chronic care may relate to the unique of care. Functional status, quality of life and the needs of LGBT older adults (PC5, Pr2, SBP1) need for inter-professional collaboration with be emphasized. Key Concepts

Learning Objectives • Community of practice: Healthcare professionals who interact in order to share knowl- • Identify at least ﬁ ve ways in which LGBT edge and experiences as well as advocate for older adults may express their needs based on the needs of LGBT older adults (Adapted their individual construction of their identity from Lave and Wenger) [1 ] that includes intersecting aspects of sexual • Community of interest: A diverse range of orientation and aging (KP3, KP4) people and groups who interact and collabo- • Describe the demographics of the LGBT older rate to decrease disparities and improve health adult population and identify emerging data outcomes for LGBT older adults • Informal support network: Caregivers and sup- M. Clark , Dr.N.P., A.P.N.-B.C., D.C.C. (*) portive others who are not paid for the services Rutgers School of Nursing-Camden , needed to support the care needs of LGBT Camden , NJ , USA older adults. This network may include family, e-mail: [email protected]; maitrimike@ signiﬁ cant others, friends as well as other com- outlook.com munity group members and volunteers H. Zinman , B.A., M.B.A. • E. Bomba , B.A., M.B.A. • Formal support network: Health professionals LGBT Elder Initiative , Philadelphia , PA , USA e-mail: [email protected]; [email protected]; and other paid workers who provide support- [email protected] ive services for LGBT older adults.

Chapter Overview Table 12.1 Institute of Medicine conceptual frameworks related to the health of LGBT older adults [2 ] There are few evidence-based practice recom- • Life course framework: The experiences of mendations for the LGBT older adult popula- individuals at every stage of their life affect subsequent experiences. Older adults can’t be viewed tion. In many ways, care of this population has to in a “snapshot” manner. Their unique life course as a be built “from the ground up”. Efforts to improve LGBT person inﬂ uences their relationships, choices, health outcomes will take the collaborative and experiences as an older adult. Their lives must efforts of those within and outside of clinical also be viewed within a historical context. Older LGBT adults “came out” in a very different social practice in order to build effective delivery sys- milieu compared to younger LGBT adults. Their tems as well as a research base that informs best options regarding relationships, choices and practices. This chapter will attempt to situate experiences have had a signiﬁ cant impact on their best practices in the care of LGBT older adults life course. within a broad professional, social and political • Minority stress model: Sexual minorities experience chronic stress due to stigmatization. Although some context. older adults have developed a certain amount of This chapter begins with an overview of some resilience in the face of stigmatization, in general, of the data on health disparities in the LGBT the adaptive capacities of older adults decrease with older adult population as well as current and pro- age. As LGBT older adults become more frail they may be less able to cope with the stresses associated jected efforts to improve the quality of these data. with stigmatization. Threaded throughout the chapter are the four • Intersectionality: Socially constructed dimensions dimensions of the conceptual framework as put such as race, gender, sexual orientation and age forth by the IOM report “The Health of Lesbian, interact in complex ways to contribute to experiences Gay, Bisexual, and Transgender People: Building of marginalization. Social inequality is associated with patterns of unequal distribution of goods and a Better Understanding for Better Understanding” resources and result in unequal treatment of as outlined in Table 12.1 . marginalized individuals and groups. Marginalization This chapter also suggests how the clinician is reinforced by societal views and expectations. may partner with a group such as the Elder LGBT older adults have multiple dimensions that may be viewed in a socio-historical context. They Initiative which is a grass roots organization with may experience marginalization due to being seen as a mission to develop a community of interest that belonging to more than one marginalized group. addresses issues related to the care of LGBT Ageism both from within and outside of the LGBT older adults in a comprehensive manner. We community is a dimension of marginalization that is unique to LGBT older adults. believe that robust communities of interest will • Social ecology model: Assumes that there is a play a vital role in improving health outcomes for complex interaction between individual and LGBT older adults. population-level determinants of health. Behaviors have an impact on the environment and, conversely, the environment have an impact on individual behavior. The model has multiple levels which The Institute of Medicine Conceptual include the individual, families, relationships, Framework as Applied to LGBT Older community and society. Health determinants for Adults LGBT older adults are made more complex by the challenges of dealing with an increased number of co-morbid conditions and issues related to functional Efforts to improve the healthcare of LGBT older dependence. adults requires a better understanding of issues related to healthcare access as well as medical and social factors that affect health outcomes. healthcare of in all age groups. However, there A summary report on the health of LGBT per- are certain characteristic that are unique to LGBT sons published by the Institute of Medicine pro- older adults. These frameworks are revisited here vides excellent conceptual frameworks that may with special considerations for understanding the support efforts to build knowledge to improve the healthcare needs of LGBT older adults. 12 Geriatric Care and the LGBT Older Adult 171

The LGBT Older Adult Population identity. These contextual factors are associated with a great deal of variability in individual D e fi ning and Describing the LGBT health status and health risk factors. They repre- Older Adult Population sent inter- dependent effects of factors related to life course, intersectionality, minority stress and Demographics of the LGBT Older Adult social ecology. Population Efforts to identify and decrease disparities in Efforts to decrease health disparities through an health outcomes for LGBT older adults face a improvement in quality of health and social ser- number of challenges. There are limited data on vices require the development of a robust data- health determinants and health outcomes for base on the LGBT older adult population. Basic LGBT older adults. A review of the medical lit- demographic data on the LGBT population as a erature from 1950 to 2007 indicates that about whole are lacking. one third of all of the published literature on Current data suggests that 3.5 % of adults in LGBT populations related to HIV and sexually the United States identify as LGBT. Among this transmitted diseases. Approximately 1 % of any group 1.7 % identify as lesbian/gay, 1.8 % as literature on LGBT health issues specifi cally bisexual and 0.3 % identify as transgender [3 ]. addressed the needs of LGBT older adults [10 ]. An estimated 19 million Americans (8.2 %) Attempts to gather useful data are affected by report that they have engaged in same-sex sexual intersectionality issues such as gender, race, behavior [ 4 ]. socio-economic status and ageism. The need to The older adult population in the U.S. will synthesize data on specifi c smaller sub- grow rapidly over the next 30 years as the “baby populations with that of aggregate data on larger boomers” reach old age. The proportion of the populations of LGBT individuals presents sig- population over age 65 is expected to grow from nifi cant challenges for researchers. Newer 13.3 % in 2011 to 21 % of the population in 2040 research and sampling methods are needed to [ 5]. A special Gallup poll on the LGBT popula- derive estimates of health disparities that are spe- tion estimated that 1.9 % of those older than age cifi c to individuals with unique clusters of defi n- 65 identifi ed as LGBT. However, this age group ing characteristics [11 ]. also had the highest rates of identifying as neither LGBT nor heterosexual (6.9 %) [ 6 ]. This may refl ect a reluctance on the part of LGBT Important Research Studies on LGBT older adults to be “out”. The Gallup poll indi- Older Adult Health (Table 12.2) cated that those in the 18–29 age group more than three times as likely to be out as those older Health Determinants in Older Adults than age 65 [7 ]. (Table 12.3 )

Research on the relationship between healthcare Research on Health Disparities and health outcomes for all older adults is lim- and LGBT Older Adults ited. Older adults, especially the very old are frequently excluded from clinical research stud- Some research indicate that LGBT older adults ies. There are few randomized control trials to may have higher rates of disability, substance guide therapeutic decisions and screening. Also use and mental health problems [ 8 , 9 ]. However, due to the diversity in this LGBT older adult research also suggests that in order to assess population more longitudinal studies are needed individual risk, one needs to consider certain in order to understand the effects of aging over contextual factors such as socio-economic sta- time [12 , 17 ]. tus, relationship status, and factors that affect Many of the studies that purport to study minority stress such as race, gender and gender LGBT older adults include subjects as young as Table 12.2 Selected major studies on health issues for LGBT older adults Study Sample population Methodology Main fi ndings Analysis of 2003–2010 N = 96,992 Random direct dial LGB older adults had Washington State LGB age range (50–98) surveys a higher risk of disability, Risk Factor Women aged 50 years and older Response rate 43–50 % poor mental health, Surveillance System ( n = 58,319) Sample weights smoking, and excessive (WA-BRFSS) [12 ] Lesbian = 1.03 % (n = 562) provided by WA-BRFSS drinking than did Examined health Bisexual women = 0.54 % (291) Analysis of data heterosexuals. outcomes, chronic Men age 50 years and older aggregated from annual Lesbian women and conditions, and access (37,820) WA-BSS from 2003 to bisexual women had to care, behaviors and Gay men = 1.28 % (463) 2010 a higher risk of screening. The BRFSS Bisexual men = 0.51 % (215) cardiovascular disease and (Behavioral Risk 0.51 % ( n = 215) obesity. Factor Surveillance Gay and bisexual men had System) is a national higher risk of poor physical survey conducted by health and living alone than each state, however, did heterosexuals. Washington State Lesbian women reported a began including LGB higher rate of excessive identifi ers in 2003. drinking than did bisexual This study allows for women. comparison of LGB Bisexual men reported a vs. heterosexual higher incidence of population. diabetes and a lower testing Transgender rates than did gay men. individuals were not included. Caring and Aging N = 2560 Survey Nearly one-half had a with Pride (CAP) Age of subjects: Began with an analysis disability. (2011) [ 12 ] 50–64 = 44 % of the WA-BRFSS data Nearly one-third reported Study to determine 65–79 = 46 % to look for aggregate depression. health disparities as 80+ = 10 % data on health disparities Almost two-thirds have well as risk and Sexual and gender identity The study then been victimized three or protective factors that Gay male ( some respondents conducted an in-depth more times. affect health and reported multiple identities) analysis of survey data Thirteen percent have been well-being. Gay male (60 %) from 2560 LGBT denied healthcare or Lesbian (33 %) individuals of to take a received inferior care. Bisexual women (2 %) closer look at risks and More than 20 % do not Bisexual men (3 %) protective factors related disclose their sexual or Transgender (7 %) to health and well-being. gender identity to their Within transgender population: These subjects were physician. Male to female (60 %) enrolled through 11 About one-third do not Female to male (26 %) LGBT service agencies have a will or durable Other (6 %) around the country. power of attorney for No response (7 %) healthcare. Race Respondents identifi ed that Non-Hispanic White (87 %) the most needed services Hispanic (4 %) included: senior housing, African American (3 %) transportation, legal Asian-Pacifi c Islander (2 %) services, social events. Native American/Alaskan Native (2 %) Other: 4+ years of college (73 %) Household incomes <200 % of the poverty level (31 %) Employed (44 %) Retired (43 %) Have children (25 %) Live with others (45 %) Live alone (55 %) (continued) 12 Geriatric Care and the LGBT Older Adult 173

Table 12.2 (continued) Study Sample population Methodology Main fi ndings Met Life Study 1000 Self-identifi ed LGBT On-line survey and One in four provided care (2006) [13 ] individuals ages 40–61 interviews conducted by for adult friend or family To understand the Gender, sexual orientation Zogby International member specifi c needs and and gender identity One in fi ve is unsure about concerns of “baby Male (56 %) who would provide care for boomers” to support Female (43 %) them should they, planning efforts once Transgender (1 %) themselves, require it. they reach old age. Gay (52 %) 27 % expressed great Lesbian (33 %) concern about age Bisexual (15 %) discrimination. 12 % of Relationship status lesbian women lack Civil unions (46 %) confi dence that they will be treated respectfully by healthcare professionals. 40 % believe that being LGBT gives them resilience and helps them to prepare for aging. Two thirds would like to die at home. Met Life Study 1201 Self-identifi ed LGBT Comparison of 1201 Comparison of fi ndings for (2010) [ 28 ] individuals ages 45–64 LGBT on-line survey LGBT vs.general Demographics for LGBT responses with matched population populations survey responses from Partnered Male (66 %) 1206 individuals of the 61 %/77 % Female (34 %) same age from the Relying on friends for: Age 45–49 (28 %) general population. Confi ding Age 50–54 (23 %) 54 %/40 % Age 55–59 (37 %) Errands Age 60–64 (12 %) 32 %/20 % Gay male (46 %) Emotional support Lesbian (25 %) 53 %/41 % Bisexual (24 %) Support in emergency Transgender (5 %) 42 %/25 % High School + (84 %) Advice 4 years College + (35 %) 53 %/43 % Own home (67 %) LGBT individual reporting Rent (27 %) being mostly or completely Health self rating: out/ having an accepting Excellent (9 %) family Very good (30 %) Lesbian women 76 %/61 % Good (34 %) Gay men: 74 %/57 % Fair (23 %) Bisexuals: 16 %/24 % Poor (4 %) Transgender: 39 %/42 % Being LGBT helps prepare for aging Yes 74 % no 26 % Being LGBT makes aging harder Yes 54 % no 46 % (continued) 174 M. Clark et al.

Table 12.2 (continued) Study Sample population Methodology Main fi ndings Women’s Health Approximately 160,000 women 3 randomized clinical Lesbian and bisexuals Initiative ages 50–79 of these 93,311 trials (cardiovascular women [15 ] (1991–2005) [14 ] participants were asked about disease, cancer, Higher socioeconomic their sexual orientation: osteoporosis, cancer) status Heterosexual (97.1 %) and an observational Used alcohol and cigarettes Lifetime lesbian women (0.3 %) study more often Lesbian women after age 45 Scored lower on measures (0.3 %) of mental health and social Bisexuals (0.8 %) support Exhibited higher risk factors for reproductive cancer and cardiovascular disease Health of Aging Self-identifi ed LGB Random-dial ongoing GB men reported higher Lesbian, Gay and individuals age 50–70 telephone survey rates of hypertension, Bisexual Adults in Analysis included a sub-set of completed in 2 year diabetes, physical disability California: Summary the total number surveyed that cycles with 50,000 and fair/poor health status fi ndings from the identifi ed as lesbian, gay or Californians surveyed in and psychological distress. California Health bisexual, N = 1052 each cycle. LB women reported higher Interview Surveys LGB/heterosexual: Discriminant question: rates of psychological (analysis from 2003, Male (61 %/47.7 %) “Do you think of distress. 2005 and 2007 Female (39 %/52.3 %) yourself as straight or GB men higher rates of data) [ 16 ] Age 65–70 (13.1 %/18.2 %)) heterosexual, as gay doctor’s visits. Person of color (22.5 %/40.9 %) (lesbian) or homosexual, LB women with increased Low income (below 200 % or bisexual?” delay in seeking care. Federal Poverty Level) Transgender individuals (19.5 %/24.2 %) were not identifi ed. Any graduate level education (35.0 %/16.6 %) Men who live alone (50 %/13.4 %)

50 years of age. These populations are for the in meeting the needs of this population. A large most part mobile and socially active. There are national study, The aging and health report- almost no studies that have signiﬁ cant numbers disparities and resilience among lesbian, gay, of subjects greater than 75 years of age. This bias bisexual and transgender older adults [ 8] gath- in the research signiﬁ cantly limits our under- ered data from 2500 LGBT individuals from age standing of frail LGBT older adults. 50 to 95. Table 12.4 summarizes the recommendations derived from this study.

Geriatric Care of LGBT Older Adults Contextual Issues That Impact General Considerations Geriatric Care and Approaches in Caring for LGBT Older Adult (Table 12.4) Providing effective care for LGBT older adults requires that providers be both clinically and cul- The LGBT older adult population is extremely turally competent. Older patients, particularly diverse. In additions to sexual orientation and those with complex medical problems and a high gender identity there is great variability in the degree of frailty, require specialized geriatric health status of individuals based on age and the care that employs effective care coordination to degree of frailty. Despite this complexity, recom- optimize functional status and quality of life out- mendations are emerging that guide the clinician comes. Experts in the ﬁ eld of geriatrics state their 12 Geriatric Care and the LGBT Older Adult 175

Table 12.3 Summary of the evidence for improving Table 12.4 National Resource Center on LGBT aging: health outcomes in LGBT older adults data collecting guidelines in LGBT older adults [8 ] Issues that Look for the effect of lifetime stigma, discrimination impact the and violence and assess for: evidence General considerations Social isolation 1. General lack • Research on older adults in Depression and anxiety of research on general is less robust than Poverty older adults younger cohorts. This is Chronic illness 2. No uniform particularly true with respect to age criteria for longitudinal studies that assess Delayed care-seeking defi ning the the effects of health Poor nutrition older adult determinants over time. Address common misconceptions among providers: population in • Criteria for including and Assuming that there are no LGBT individuals being survey and describing older adults in the served research data research literature ranges from Assuming that LGBT individuals can be easily 3. Older adults age 50 to 90. This age range identifi ed without asking are not represents a very heterogeneous suffi ciently population in terms of fi nancial It is illegal to ask about sexual orientation included in resources, social support needs, Older LGBT individuals will resist disclosing their survey and frailty and other health issues sexual orientation or gender identity research data such as comorbidities. This Integrate methods of collecting data on sexual that effect limits the ability to appropriately orientation and gender identity into all aspects of health services generalize and apply research providing care: policy and fi ndings. Within the healthcare encounter funding. • Policy and funding for health Within all processes related to demographic data 4. Quality and social services is largely collection outcomes for determined by an analysis of health services needs at the population level. Ensure and negotiate issues related to confi dentiality provided to Lack of quality data limits Questions of sexual orientation, gender identity and the LGBT older efforts to improve funding for sexual behavior history should be addressed separately adults is services. as these may intersect in ways that are not readily lacking • There is a need for signifi cant apparent to the clinician improvements in measuring Consider and explain how particular information quality outcomes for health contributes to quality of care services proved to LGBT older Documentation needs to support the best patient adults. These efforts should be outcomes (for instance, it may be necessary to code addressed at the systems level transgender patients according to their assigned gender within and among healthcare at birth to get insurance coverage for screening and organizations. Signifi cant other health services) improvements may occur if demographics on LGBT older adults are integrated in electronic health records. In LGBT older adults may suffer due to a “dou- addition, if older adults are ble effect” of being cared for by providers who identifi ed as a “vulnerable may lack general geriatric clinical competencies population” social services that are funded through the Older along with a lack of cultural competence. Since American’s Act will older adults need integrated interprofessional be encouraged to collect data care, it is important that these issues be addressed related to quality metrics. at the level of provider systems. concern over the lack of education and training in Frailty and the Care of LGBT Older the knowledge and skills needed to effectively Adults care for older adult patients [ 18]. There have Approaches to care of older adults is largely been calls for reform of education in the health determined by the frailty of the patient. Frailty professions to close the current gap in clinical is primarily a condition of diminished ability knowledge and skills [19 ]. to respond effectively to challenges or stressors. 176 M. Clark et al.

It has physical, cognitive, emotional and social that poor lesbian women and bisexual women are dimensions [ 20]. Frailty is loosely correlated less likely than heterosexual women to have with chronologic age. However, this correla- health insurance and that this affects utilization tion is not absolute. It correlates more closely of preventive and other health services [12 ]. An with chronic co-morbid conditions that impact analysis of the Massachusetts Behavioral Risk functional status and self-effi cacy. It has been Factor Surveillance System, found that transgen- suggested that health outcomes, particularly der adults have lower household incomes and for frail individuals, be measured in terms of higher rates of unemployment compared cis- quality of life which correlates most closely gender individuals [25 ]. with an optimal functional status as well as LGBT older adults may have a pattern of high quality social relationships. There has under-employment due to a need to “settle” for been a shift toward measuring the cost effec- jobs for which they were overqualifi ed due to tiveness of care in terms of “quality life years”. issues of social stigma associated with gender, sexual orientation and gender identity. They were Frailty vs. Resilience more likely to work in jobs with minimal or no Older adults who exhibit characteristics of health insurance benefi ts. The effects of under- healthy aging demonstrate a high degree of resil- employment has an impact on the fi nancial stabil- ience in adapting to the limitations and chal- ity of these individuals in old age since they have lenges associated with aging. Limited data fewer assets and their Social Security benefi ts suggests that some LGBT older adults demon- may be less due to decreased lifetime taxable strate a high degree of resilience [21 , 22 ]. These incomes. individuals attribute this resilience to the devel- Research indicates that many Americans erro- opment of coping strengths in response to deal- neously think that the “gay” population is more ing with the effects of social stigma. There is a affl uent than the general population. While this need for more research on the identifi cation and may be true for some individuals, many LGBT support of resilience factors, particularly among older adults are poorer than the general popula- LGBT people of color [23 , 24 ]. tion. Some LGBT individuals, due to issues associated with stigma and discrimination, were The Impact of Social Stigma on Health marginally employed with a work history that Outcomes was characterized by fragmentation of low pay. Utilization of health services by the current For these individuals, federal entitlement benefi ts cohort of LGBT older adults has been limited by are lower due to a history of lower wage tax con- negative experiences associated with social tributions. For instance, in order to avoid extra stigma. As a result, certain LGBT older adults premiums for Medicare benefi ts, an individual may have excess disease burden due to a lack of has to pay federal wage taxes for at least 10 years. screening and early prevention and management Social Security benefi ts are also indexed to of chronic health conditions. The extent of this amount of federal wage taxes. problem is largely unknown [8 ]. Many older adults, even those with Medicare, pay a signifi cant amount of their healthcare costs out of pocket [26 ]. Costs of healthcare not Factors That Impact Adaptive covered by insurance disproportionately affects Capacity of LGBT Older Adults the poor as these costs consume a much higher percentage of their discretionary income health Financial Resources and Access expenses. Poverty is frequently calculated only on to Healthcare estimations of factors such as food and housing. On average, LGBT older adults, particularly They do not include healthcare and medication women and single individuals are poorer than the costs which are increasing at a rate greater than population as a whole. There are data to support that of infl ation. These costs may be prohibitive 12 Geriatric Care and the LGBT Older Adult 177 for those who are poor. As a result poor LGBT health outcomes. A signifi cant percentage of older adults may have limited healthcare options. LGBT older adults, particularly in large urban The implementation of the Affordable Care areas, are single [28 ]. Some LGBT older adults Act (ACA) may improve access to care for LGBT may become single due to the death of a partner. older adults aged 50–65. Individuals who live in This may be particularly true for gay men who states that participate in the new Medicaid eligi- have lost partners due to HIV disease. Single bility requirements may qualify with incomes up older lesbian women, are particularly at risk for to 138 % of the federal poverty level. Previous poverty. There are very limited data on the rela- eligibility required that individuals be at or below tionship status of transgender older adults [29 ]. the poverty level and the individual had to have a “categorical determinant” such as a chronic or debilitating condition. The categorical determi- Clinical Care of LGBT Older Adults nant has been eliminated in the minority of states that are participating in the Medicaid federal/state LGBT Older Adults as Two partnership agreements put forth in the ACA. The Populations near poor (income up to 400 % of the federal poverty level) qualify for federal subsidies to pur- In caring for older adults, clinicians and other chase insurance on exchanges. All health plans on service providers must address issues related to the exchange can’t deny enrollment based on pre- physical, social, emotional and spiritual health. existing conditions [27 ]. These changes may dra- Some gerontologists differentiate the health sta- matically increase health care access to a tus of older adults based on frailty. Some make a signifi cant number of LGBT older adults 50–65 dichotomous distinction and use the term “young- years of age who are poor or near-poor. old” and “old-old” based on an estimation of Older adults who are on Medicaid are faced frailty [30 ]. For the “young old” the goals of care with signifi cantly fewer choices in seeking are the identifi cation and management of disease healthcare as many providers do not accept this in order to achieve an optimal number of “quality insurance. This may have a signifi cant impact on life years”. For frail older adults, the goal of dis- health maintenance and preventive services that ease management shifts toward the management are important in this population. Funding for of symptoms that impair self-effi cacy and healthy needed services, supplies and medications are social interactions. also limited . The research literature that does address the needs of LGBT older adults focuses mostly on Social Networks and the Health of LGBT the “young-old” population or the later adult Older Adults population age 50–65. This is refl ected in the Social networks play a large role in the health of IOM report that attempted to synthesize the lit- older adults. For heterosexual older adults the erature on LGBT older adults. They state that social network is comprised primarily of mem- they were limited in fi nding data on LGBT older bers of their “family of origin”. The social net- adults and chose to review the literature for all work of LGBT older adults is more likely to individuals greater than age 50 [9 ]. consist of long term stable relationships with friends. The relationships that LGBT older adults Care of the LGBT “Young-Old” have with their “family of origin” may be nega- The general approach to care for the young-old tively affected by social stigma. typically seeks to identify and manage specifi c Relationship status for older adults in general clinical problems. Most of the health issues can and LGBT older adults in particular is affected be identifi ed in standard history and screening by the presence or absence of a partnered rela- methods. In order to provide culturally compe- tionship. Single LGBT older adults are particu- tent care, the clinician needs to establish an open larly at risk for poverty, social isolation and poor and honest relationship in which the patient is 178 M. Clark et al. comfortable disclosing important medical and a twofold increase risk of suicide attempts in the social information that pertain to maintaining year prior to the study and a fourfold excess life- their health. time risk for gay and bisexual men [33 ]. In one large study, LGBT older adults identi- The relative risk for depression, anxiety, and fi ed the core competencies that they thought were alcohol and substance misuse were at least 1.5 essential in providing high quality care. These more common compared to heterosexuals [ 33 ]. include that the clinician refl ect upon their own Lesbian and bisexual women were at particular values and preferences; apply contemporary the- risk for substance dependence. The review found ories of aging and social gerontology; integrate few prospective studies. Therefore the data on contextual factors specifi c to LGBT older adults risk factors are very limited. This study did not in conducting a health and social assessment and include transgender individuals [33 ]. use culturally sensitive and age appropriate lan- A cross sectional study found that transgender guage to establish and build rapport [31 ]. individuals have an increased risk of smoking but The cultural competence of clinicians and little is known about other health related behav- healthcare workers who work in clinics and other iors such as alcohol misuse, lack of exercise and outpatient settings is a key determinant of quality obesity [34 ]. An online survey of transgender care for this population. LGBT older adults who individuals indicated high levels of depression, have experienced discrimination from health care anxiety and somatization [22 ]. providers and services may be reluctant to share essential information that may be important for General Health Problems in Older LGBT screening, prevention and disease management . Individuals LGB older adults, compared to age matched heterosexuals, are at increased risk for disability, poor Selected Health Problems in LGBT mental health, smoking and excessive drinking. Older Adults Older lesbian women were more likely to engage in excessive drinking than bisexual women. Older Certain health disparities are found in LGBT lesbian and bisexual women are at increased risk individuals who are entering later adulthood. Life for cardiovascular disease and obesity. Older gay course factors such as social stigmatization may men are at increased risk for poor physical health play a role in these disparities. Some of these and they are more likely to live alone [12 ]. conditions such as depression, suicide and violence may be associated with minority stress. Other conditions such as obesity, alcohol intake Sexual Health in LGBT Older Adults and smoking may be associated with behavioral patterns enhanced by socialization patterns and The care of all LGBT older adults should include group norms. taking a thorough and accurate sexual history. The guidelines for a culturally sensitive approach Behavioral Health Issues for obtaining a history are put forth elsewhere in There are very limited data that describe behav- this text. The only point worth noting is that there ioral health issues for transgender individuals. A may be a need to distinguish current vs. past sex- systematic review of the epidemiology literature ual practices for this population. identifi ed certain mental health problems that have For LGBT older adults it may be particularly a higher prevalence in LGB individuals. These important to distinguish sexual orientation and problems should guide screening efforts in the gender identity from patterns of sexual activity. LGB older adult population [33 ]. The fi ndings For instance, lesbian women and bisexual women indicate that LGB individuals are at higher risk for may report a history of having sex with men. suicidal ideation and behaviors, mental disorder The sexual histories as well as the reproductive and substance misuse and dependence. There was history of women have important implications 12 Geriatric Care and the LGBT Older Adult 179 for screening of a number of diseases. These There is little research on the transmission of include testing for risks associated with hepatitis, sexually transmitted infections in women who herpes simplex and human papilloma virus as have sex with women. However, it is particularly well as the risk for HIV and sexually transmitted important to assess behaviors that may include diseases such as syphilis. recent or remote sexual contact with men. Little is known about sexual practices and Heterosexual contact is the predominant risk fac- problems of older adults in the general popula- tor for women who acquire HIV infection [41 ]. tion. One review of the literature found two thirds The risk of transmission must be evaluated in the of those over age 50 were excluded from research context of specifi c sexual practices (i.e. sharing trials on the prevention of sexually transmitted of sex toys in vaginal or anal sex). There is some infections [35 ]. concern about increased transmission risk for One large study indicate that the prevalence of older women due to a thinning and drying of the sexual activity in the general population decreases vaginal mucosa. This may place the woman at with age from approximately 73 % in the 57–64 increased risk for small tears or abrasions that year age group to 26 % among respondents who may increase the transmission risk. were 75–85 years of age. About one half of both men and women reported at least one bothersome Clinical Tips: sexual problem [36 ]. In women these included low desire, diffi culty with vaginal lubrication and • Requests for and discussions about medica- inability to climax. In men erectile dysfunction tions for erectile dysfunction provides an was the most frequent problem (37 %) [36 ]. excellent opportunity for a broader discussion Only 38 % of men and 22 % of women over the of sexuality and specifi c risks for sexually age of 50 reported having discussed sex with a transmitted infections. In one study of the physician [36 ]. Having frank discussion about general older adult population, 17 % of men sexual practices, including higher risk sexual indicted that they used ED medication during activity, may be particularly important for their last sexual encounter [36 ]. older gay men. Self-reported risk behavior among • Condom use should be encouraged. In one MSM over the age of 50 indicates that the num- study among older adults who were not in ber of sexual partners can remain quite high. In a long term monogamous relationships, 20 % of 12 month telephone survey of MSM, 25 % of men and 24 % of women used a condom in those age 60–69 reported nine or more partners in their last sexual encounter. This same group the previous year [37 ]. indicated that 5 % of their partners had a sexu- There is some evidence to suggest that older ally transmitted infection at the time of their adults underestimate their risk for acquiring sexu- last sexual encounter [39 ]. ally transmitted infections [38 ]. This may be par- • For men and women a discussion about the ticularly true if individuals are coming out of long use of sex toys should be addressed as these term monogamous relationships either due to may be a vector for transmission of infec- separation or the death of a partner. Mental health tions. Women who have sex with women issues, especially depression, and issues such as may underestimate thier risk of transmission social isolation and loneliness may increase the of sexually transmitted diseases when using potential for higher risk behaviors [39 ]. sex toys [42 ] . For older men, including gay men, the use of drugs for erectile dysfunction may increase the risk of sexually transmitted disease, although the HIV Disease and LGBT Older Adults data on this are mixed [ 38]. Although data are emerging in younger age cohorts, it is unclear as HIV disease is a signifi cant problem for older to the effects that the internet and social media adults, including LGBT older adults. There are may have on sexual activity patterns among two cohorts of interest in this group: Older gay LGBT older adults [40 ]. men who contracted HIV earlier in life and those 180 M. Clark et al. who are newly infected as older adults. Expert HIV disease when initiating therapy. However, consensus opinion guidelines for older adults many of these specialist may have limited experi- with HIV have recently been published by the ence in managing this disease in older adults. American Academy of HIV Medicine and the This will likely change as the number of HIV AIDS Community Research Initiative of infected older adults increases. Professional America [ 43 ]. groups such as the American Academy of HIV The increased prevalence of HIV in the older Medicine and the AIDS Community Research adult population is due to an increase in survival Initiative of America have recently published rec- of those infected earlier in life as well as an ommended treatment strategies for HIV positive increase in the incidence of newly acquired older adults [43 ]. P rimary care providers will infections. By 2015, half of all HIV positive need to stay current on treatment guidelines and individuals will be age 50 or older [ 41]. The recommendations as these continue to evolve. largest cohort of HIV positive older adults in the The response of older adults to antiretroviral general population are in the 50–54 age group therapy ( ART) compares well to the responses [ 44]. Among those over the age of 50, 60 % of found in younger individuals [ 48 ]. However, the infections are attributed to sexual behaviors decreases in morbidity and mortality depend on in men who have sex with men [ 44 ]. The HIV early detection. Current guidelines suggest that rates for older African American men 12 times treatment be offered to all HIV positive individu- higher than those for whites [ 45]. Of particular als regardless of age [49 ]. Researchers are only concern is the fact that one in six of all newly beginning to explore the safety and effi cacy of acquired cases of HIV infection in the general ART in older individuals [49 ]. population occur in men older than 50 years of In general, older adults being treated for HIV age [ 41 ]. have drug adherence rates approaching 95 % Older women typically contract HIV primar- with fewer interruptions in therapy compared to ily through heterosexual contact. Lesbian and bi- younger cohorts [ 50 ]. Older adults treated with sexual women may report signifi cant rates of ART achieve acceptable decreases in viral load, previous sexual activity with men. There are the- however, some tend to have less favorable oretical reasons as to why older women may be at improvements in CD4 counts. This may be par- increased risk for HIV infection, including a thin- tially related to being diagnosed later and thus ning, more friable vaginal mucosa due to post- having lower CD4 counts at the initiation of menopausal changes [46 ]. therapy [ 51 ]. HIV positive older adults present special treatment challenges due to an increased num- Care of the HIV Positive LGBT ber of co-morbid conditions and medications. Older Adult Older adults with HIV have higher rates of drug-drug interactions due largely to the higher Care for HIV positive older adults can be charac- number of medications used to treat co-morbid terized as consisting of three phases: early care conditions [52 ]. One study indicated that 76 % (screening, diagnosis and initiation of treatment); of participants were taking nine or more drugs. managing the HIV disease; and, addressing Among these drugs a signifi cant number had emerging issues that may be specifi c to the aging unacceptable interaction profi les [52 ]. Little is process itself [47 ]. known about the pharmacokinetic and pharma- codynamics of ART in older patients [51 ]. Initiation of Therapy Medication simplifi cation to decrease these It is recommended that the primary provider consult interactions may have increased importance in with a specialist who has expertise in managing this population. 12 Geriatric Care and the LGBT Older Adult 181

Clinical tips: of Hepatitis C for LGBT individuals compares to the general population. Specifi c risk factors such • Incorporate screening for substance misuse as I.V. drug use and sex with IV drug users are disorder when initiating ART therapy considered behavioral risk factors. Although sexual transmission of hepatitis C in men who have Patients who do not take their ART consis- sex with men is thought to be low; there is some tently have signifi cantly worse health outcomes increase in risk with unprotected receptive anal as a results of the effect of poorly controlled HIV sex. Those within the LGBT community who disease on the immune system, cardiovascular currently use or have previously used IV drugs system, neurologic system and the kidneys. Poor are at highest risk . ART adherence correlates with rates of substance abuse. In one study 22 % of those with Screening for Cancer in HIV Positive suboptimal ART adherence screened positive for Individuals unhealthy alcohol use. It is estimated that Although cancer screening is not an issues spe- approximately 10 % of LGBT older adults drink cifi c to LGBT older adults, some patients may excessively [8 ]. Standardized screening tools present for the fi rst time in later years due to bad have been tested and validated in HIV positive past experiences with healthcare providers or a patients [53 ]. lack of insurance. This delay in care may lead to worse outcomes. Maintenance of Therapy HIV positive men who have sex with men are HIV positive older adults are at increased risk for at increased risk for anal cancer. Detection of epi- certain HIV-associated non-AIDS (HANA) con- thelial changes suggesting an increased risk of ditions. These conditions include an increased early cancer can be accomplished by performing risk for cardiovascular disease, malignancies and and anal Pap test. A signifi cant barrier to effec- osteoporosis. Other factors related to health tive screening exists due to a lack of clinical behaviors include diet, exercise, tobacco use and expertise as well as equipment such as a high- substance use as well as an adequate manage- resolution anoscope in most practice settings. In ment of HIV and other chronic conditions. addition, many pathologists lack experience in HANA conditions occur more frequently with interpreting pathology specimens from rectal lower CD4 counts and higher viral loads, but they samples and there is a concern about inter-rater can also occur in patients with well controlled reliability. HIV disease [ 54]. HANA conditions associated One author recommends that an anal Pap test with cardiovascular events, non-AIDS malignan- should be performed at the time of the initial cies, and end stage kidney and liver disease are diagnosis of HIV. The Pap should be repeated at responsible for as many as 60 % of deaths in HIV 6 month intervals until two normal cytology infected individuals [55 ]. results are obtained. Abnormal cytology results Chronic hepatitis B and C infections pose a should prompt follow up evaluation with high- special risk for HIV infected older adults. resolution anoscopy and biopsy of suspicious Hepatitis C is responsible 90 % of liver related lesions [59 ]. There is no evidence that early test- deaths in HIV infected individuals [56 ]. The ing for prostate cancer in HIV positive patients is United States Preventive Services Task Force benefi cial [59 ]. recommends one time screening for all adults Cervical Pap testing should be performed born between 1945 and 1965 [57 ]. This age group twice within the fi rst year after an HIV diagnosis represents approximately 75 % of all patients and annually thereafter (provided that the cytol- who have chronic hepatitis C infection [58 ]. ogy results are normal). There is very limited data Most patients with Hepatitis C are unaware on Pap testing rates for HIV positive lesbian and that they are infected. Many can’t remember a bisexual women. However, up to one fourth of all specifi c risk factor. It is not known how the rates HIV positive women in the general population 182 M. Clark et al. fail to get annual Pap tests [60 ]. Clinicians need to of the body organs of the individual as well as be vigilant in recommending Pap testing and pro- surgical and hormonal gender-confi rming ther- vide appropriate referral. apy. Currently there are no clear evidence- based guidelines that are specifi c to the care of transgender persons [66 ]. Clinical Issues in the Care of Older Little is known about the long terms risks of Transgender Patients hormone therapy in transgender patients. Providers must pay attention to organs in place Transgender individuals experience signifi cant for a particular transgender patient. Transgender diffi culties in navigating the healthcare system. women need a consideration of prostate cancer Transgender individuals report denial of care risk. Transgender men who have not had total because of their gender identity (19 %); verbal hysterectomies need to have their cancer risk harassment in the medical setting (28 %) and a assessed for reproductive organs that remain postponement of care due to discrimination and intact. disrespect (33 %) [61 ]. There is some evidence that transgender Older adults who are transgender are more women have a higher risk for osteoporosis [ 67 ]. likely to have increased morbidity as a result of a In one cross sectional study involving 100 trans- lack of appropriate screening and early interven- gender persons, 6 % of transgender women expe- tion for a variety of conditions [61 ]. They may rienced a thrombotic event and 6 % experienced also have a history of problems related to the use cardiovascular problems. The risk of thrombo- of non-medical sources of hormones due to a lack embolism may be greater with higher doses of of trust in or a lack of access to supportive health estrogen, especially in late adult transgender services [62 ]. A welcoming care environment women who are obese or who smoke. The aver- and health insurance coverage may have a posi- age length of hormone use was 11.3 years [ 67 ]. tive effect on care seeking behavior [63 ]. There is also some concern about the health risks Recent trends in policy and healthcare funding associated with breast implants [68 ]. hold forth the promise that increasing numbers of Transgender men usually tolerate androgen older transgender individuals will have health- therapy well. There are some concerns about the care coverage. Medicare covers routine care and risk for osteoporosis; however, there are no cur- hormonal therapy [64 ]. In addition, the depart- rent guidelines for bone density studies for trans- ment of Health and Human Services has deter- gender men. A few case studies of vaginal, mined that transgender individuals may no longer cervical and endometrial cancer have been be automatically denied coverage for sex reas- reported. A few cases of cancer of the breast in signment surgeries [65 ]. residual breast tissue has been reported [69 ]. The transgender population is exceedingly Transgender individuals experience higher complex. Transgender individuals may undergo rates of depression. A review of the literature various degrees of surgical and hormonal gender- identifi ed several factors that infl uence depres- confi rming therapies. They may have undergone sion including a lack of social support, vio- sex reassignment surgery or begun gender- lence, sex work and challenges associated with confi rming therapy at an early age or they may gender identity [ 70]. In general, transgender begin the process of gender transitioning later in persons have higher rates of drug use, HIV life. Transgender individuals may develop gender infection and sex work compared to the general dysphoria later in life. For these individuals, the population [70 ]. There is a concern that depres- transition can be particularly diffi cult since hor- sion in transgender persons is associated with mone therapy may produce less pronounced increased rates of substance use and high risk changes in physical characteristics. sexual behavior [71 ]. These interaction effects Screening and preventive care of transgen- in older transgender persons has not been der older adults is based upon a consideration studied. 12 Geriatric Care and the LGBT Older Adult 183

Clinical consideration: Factors That Promote Health Aging in Frail Individuals • Transgender individuals typically sign an elaborate informed consent document before Aging in Place beginning care. Recently an emphasis has been placed on keep- • The transgender person may benefi t from ing frail older adults in the community and out of periodic follow up regarding risk: benefi t institutions. Policy initiatives are in place to decisions regarding health risks associated frame services based on frailty vs. chronological with hormone therapy as they age. age. For instance, the Administration on Aging • These interventions might allow for more which provides many of the federal and state pro- informed choices regarding treatments and grams for older adults are now part of the screening. Administration for Community Living which is designed to coordinate service for all individuals with disabilities that place them at risk for need- Care of the Frail LGBT Older Adult ing institutional care. This includes those with intellectual, developmental and other disabilities Frailty as a Factor in Framing Care [72 ]. Moving forward, programs and policies are likely to place increasing emphasis on providing The care of frail older adults is complex. These and coordinating services based on the need for patients tend to have an increased number of co- functional support outside of institutional set- morbid conditions and they are frequently taking tings [73 ]. a large number of drugs. Chronic disabling con- The concept of “aging in place” is becoming a ditions or cognitive impairment impede their popular concept that describes efforts to keep capacity for self-care. As a result of the complex frail individuals out of institutions. Central to the and multi-dimensional challenges faced by these ability for older adults to remain in the commu- individuals, care must be provided by a team that nity is the provision of care that supports func- includes professionals, as well as friends and tional status. Care provided by family and friends family. Paid service providers are frequently must be coordinated with community-based ser- called “formal caregivers” and unpaid or volun- vices such as senior centers and home health teer providers are called “informal caregivers”. care. [74 ]. Clinicians who work with frail individuals must Innovative models that integrate the volunteer become competent in the principles of geriatrics as efforts of neighbors with formal healthcare and well as develop systems and expertise that support social services are evolving. There are several high-quality care coordination. Competent coordi- models that are emerging such as Naturally nation must incorporate inter-professional clinical Occurring Retirement Communities (NORCs) care as well as a wide range of social services. The [75 ] and the Village to Village Network [ 76 ]. delivery of high quality care also requires that each These are local organizations that provide volun- clinician and service provider be culturally compe- teer support by neighbors to frail older adults tent in caring for LGBT older adults. living in their community. These organizations Frail older adults have unique needs. The typically partner with health and social service main factors that affect care include geriatric syn- organizations. Although these organizations are dromes, polypharmacy, and recognition of atypi- not targeted specifi cally to LGBT older adults, cal and non-specifi c presentation of disease. they may become an important “aging in place” Geriatric syndromes such as falls, incontinence support in areas with higher concentrations of and acute changes in mental status are frequently LGBT older adults. manifestations of underlying disease. Clinicians Some cities have or are beginning to develop must work closely with caregivers in order to senior housing that primarily serve LGBT older identify and manage these issues. adults. These projects are partnering with social and 184 M. Clark et al. health services in the community that specialize For LGBT older adults a signifi cant amount of in serving the LGBT community. care support may be provided by a network of Gay senior housing projects have opened in a individuals that are part of a “family of choice”. number of large cities in the U.S. These centers, The capacity of these informal networks for pro- such as the one in Philadelphia, are partnering viding supportive care for LGBT older adults is with an LGBT health center and an LGBT social not known. Some research suggests that while services organization. Models that integrate friends may provide emotional support, they may LGBT-friendly housing with LGBT-friendly be limited in their ability to provide the kind of social and medical services holds forth promise constant functional support that is required for for supporting a high quality of health for its resi- aging in place. There is concern that LGBT older dents [77 ]. adults are more at risk for requiring institutionalized care. Also, “family of choice” caregivers fre- Supporting Informal Caregiver quently do not receive the kinds of social supports Networks that are afforded caregivers who are part of a Caregiver burden is a source of concern since “family of origin”. For instance, LGBT partners maintaining the health of the caregiver is a cru- and friends may not be considered eligible under cial determinant as to whether the older adult the Federal Medical Leave Act (FMLA) which can “age in place”. Although there has been allows time for workers to take time off to care much speculation as to the negative health for sick and disabled family members. impacts of caregiving, research is needed to bet- The United States v. Windsor decision in ter understand this phenomenon [ 78]. The rela- which the U.S. Supreme Court struck down the tionship between overall health and caregiver federal Defense of Marriage Act, FMLA eligibil- burden is a complex one. Some caregivers report ity varied by state. In determining eligibility a that caregiving is a positive experience that pro- distinction was made between the “place of vides a sense of accomplishment and increased domicile” (state in which the same-sex spouse self-esteem. lives) and the “place of celebration” (state in Although there is no centralized national-level which they are married) [ 83]. The subsequent surveillance system on informal caregivers of Supreme Court ruling that legalized same-sex older disabled adults [79 ] it is estimated that marriage in all states eliminates this variability. approximately 80 % of the home care for severely Some caregivers who are members of a “family disabled patients, such as those with Alzheimer of choice” may be unaware of services and Disease, is provided by family members such as resources to which they are entitled. The National spouses and adult children. These individual Family Caregiver Support Act has broad language comprise the patient’s “family of origin”. that can be interpreted to include LGBT caregivers. A signifi cant challenge that will be faced by However, LGBT elders and caregiver support pro- clinicians and social service providers is to iden- grams are often unaware of this more inclusive lan- tify and support informal networks of individuals guage [84 ]. Of the limited federal funds provided who provide needed care for LGBT older adults for caregiver support programs, almost no funds who seek to “age in place”. Among the general have been provided for programs specifi cally population of older adults 72 % of men and 41 % designed to meet the needs of LGBT elders [85 ]. of women live with a spouse [80 ]. Among LGBT older adults approximately 40 % have a partner. Only 20–25 % of LGBT older adults report hav- Assessment of Functional Status ing one or more living children compared to 40 % and Functional Supports for heterosexual older adults [81 ] The social networks of LGBT older adults are characterized as Although there are many functional status tools “families of choice” as opposed to the “families with good reported psychometrics, these have not of origin” [82 ]. been tested specifi cally with regard to LGBT 12 Geriatric Care and the LGBT Older Adult 185 individuals. In addition, there are no tools to healthcare benefi ts through the Medicaid assess the nature and quality of support networks Program. Eligibility is based on a having few for LGBT older adults. Care must be taken to assets as well as having an income near or below avoid assumptions that caregiving will be pro- the federal poverty line [88 ]. vided by a heterosexual “wife” or “husband”. Suggested approaches include: Support for Planning for Decreasing • Begin with open ended questions: Capacity – “Who helps you with your day to day activities?” Financial Planning for Long Term Care – “If you had an emergency, who would you Paying for the cost of long term care is a major call?” challenge for LGBT older adults. This is particu- – “Who would maintain your apartment or larly true, but not limited to, paying for nursing house if you became ill?” (This may home care. The average cost of nursing home include pet care) care is $ 80,000 per year [ 89]. Costs for long term care provided in the home are substantial both in Functional status tools must be modifi ed to terms of direct and indirect costs. include the needs of the support network for Typically individuals pay out of pocket for LGBT older adults, which may be broader and nursing home care until their fi nancial resources more variable than that of the general are depleted. At that time they apply for population. Medicaid as the source of funding for nursing home care. Since Medicaid is a program with “means testing” individuals must have little in Financial Issues That Impact the way of personal assets or income in order to the Health of LGBT Older Adults qualify. Unmarried partners who share assets with an individual requiring long term care are The quality of life for all individuals depends at fi nancial risk of losing their portion of any upon adequate healthcare benefi ts, fi nancial shared assets of investments. This is particularly resources and economic stability. The fi nancial problematic if an unmarried couple co-owns a status of older adults is determined by the assets home [84 ]. at the time of retirement as well as retirement Issues related to fi nancial planning for long income. Single LGBT older adults, particularly term care are very complex and beyond the scope females, often have fewer assets and lower of this text. However, fi nancial resources have a incomes. major impact on the health and healthcare options However, as the status of federal laws have for LGBT older adults. Clinicians can assist recently evolved with the legalization of same LGBT older patients by providing referral to sex marriage, a growing gap will continue information sources that may assist in advance to develop between married and single individu- planning. als. There are major differences in the economic status of partnered vs. single LGBT older adults. Advance Directives In general, single individuals tend to be poorer The proportion of Americans who have advance and either uninsured or underinsured. The major- directives has been increasing. One study found ity of LGBT older adults are single. The changes that from the years 2000 to 2010 the percentage in federal entitlement program benefi ts that are of Americans with advance directives increased being afforded same sex couples do not always from 47 to 72 % [90 ]. This same study found benefi t single individuals. that in 2010, approximately 71 % of adults had Some poor LGBT older adults who have not at least one hospitalization in the last two years yet reached 65 years of age may receive limited of their life. Approximately 35 % died in the 186 M. Clark et al. hospital [90 ]. In the absence of an advance become familiar with state laws regarding advance directive, hospitals and other healthcare organi- directives and surrogate decision-making. zations typically turn to family and friends to serve as surrogate decision-makers. These individuals are asked to consider treatment options Long Term Care Issues Specifi c based on their understanding of the patient’s to LGBT Older Adults values, wishes and preferences. Research indicates that difference of opinion about a patient’s Older adults with decreased functional status, preferences may cause signifi cant confl ict cognitive impairment or complex chronic comor- between members of the “family of origin” and bidities require supportive long term care. This the “family of choice” [ 81 ]. care may be provided in the community or in Clinicians should advise LGBT older adults long term care settings. In general, LGBT older on the important components of an advance adults report signifi cant concerns about these ser- directive as well as the importance of ensuring vices. One community needs assessment found that the designated decision-maker will have the that slightly more than half of LGBT elders were power to execute the patient’s wishes and prefer- dissatisfi ed with federal, state and local services ences [ 91]. Many patients erroneously assume [93 ]. In another study of 127 LGBT adults, 33 % that a living will document is suffi cient in ensur- thought that they would have to hide their sexual ing that their preferences for end of life care will orientation or gender identity if they moved to a be honored. They fail to realize that these docu- nursing home [94 ]. A health disparities study ments need to be interpreted within the complex conducted with over 3500 LGBT people in and often hectic context of the circumstances sur- New York found that 8.3 % reported being rounding the execution of this document. neglected by a caregiver and 8.9 % experienced The MetLife study in 2006 found that just fi nancial exploitation [95 ]. over half of 1000 LGBT participants had not pre- Clinicians should be aware of the vulnerabil- pared living wills and only about 44 % had desig- ity that LGBT older adults perceive or experience nated a surrogate decision-maker in a formal in utilizing long term care services. One of the document [13 ]. Single LGBT older adults are barriers to promoting culturally competent ser- even less likely than partnered individuals to vices and environments in nursing homes is that have completed this process. many of these institutions believe that they do not This issue is complicated for LGBT individu- have LGBT residents. LGBT older adults worry als due to variability in the recognition of identi- that they will experience discrimination and poor fi ed surrogate decision-maker who may be care if they disclose their sexual or gender iden- neither the patient’s spouse nor a member of the tity. The fear of disclosure creates a kind of “family of origin”. It is unwise for LGBT indi- “Catch 22”. This lack of disclosure on the part of viduals to assume that hospitals and healthcare LGBT residents inhibits efforts to improve efforts providers will turn to a member of their “family to deliver culturally competent care. It remains to of choice” for making decisions in the absence of be seen whether the current cohort of gay baby a legally enacted advanced directive. In some boomers, will be more willing to disclose their states the designation of a surrogate decision sexual orientation or gender identity and advo- maker may require complex legal consultation to cate for higher quality care. create valid documents to ensure the legitimacy The federal Nursing Home Reform Act of a chosen surrogate decision-maker. requires all nursing homes that receive Medicare The Human Rights Campaign (HRC) has cat- or Medicaid funding (almost all nursing homes) egorized states based on their recognition of to provide written policies to residents regarding LGBT surrogate decision-makers [ 92 ]. LGBT their rights under this law. These “resident bill older adults should be strongly encouraged to of rights” include the right to choose one’s 12 Geriatric Care and the LGBT Older Adult 187 physician; the right to privacy; dignity and Retirement Community and Assisted respect; the right to use one’s clothing (allowing Living Issues Specifi c to LGBT Older transgender individuals to dress according to Adults their gender identity); the right to be free from abuse and restraints; and the right to voice griev- Some older adults choose to live in assisted liv- ances without retaliation [ 84]. However, there ing settings. Little is known about the experi- may be variation in the ways that nursing homes ences of LGBT older adults in this type of interpret these requirements when it comes to setting. There are variable, limited, anecdotal LGBT older adults. reports in the literature regarding a perception of Enactment of these rights for LGBT older the effects of stigma in these settings. Unlike adults is at best uneven. Residents may experi- nursing homes, assisted living facilities are not ence neglect and abuse from staff members as highly regulated. Recently, some LGBT friendly well as other residents. Staff may fail to identify assisted living facilities have opened. One report and respond to the needs of LGBT-identifi ed indicates that LGBT residents felt acceptance individuals in long-term care settings [96 ]. In and an ability to form expanded social networks general, staff are not trained to manage interac- in this setting [98 ]. tions between LGBT and heterosexual residents and families. This could result in problems that range from ostracism to hostility. Residents may Future Directions: Building Capacity have limitations set on their visitation rights that for Improving the Care of LGBT may restrict access to supportive spouses, part- Older Adults ners and friends. Often LGBT residents are too frail to advocate for themselves. Policy Most of the paid personal care provided to older adults across settings is provided by poorly Signifi cant efforts are needed at the federal, state paid, unlicensed personal care assistants. It will and local level to collect demographic data on be important to reach out to these workers in LGBT older adults. One strategy that would pro- order to optimize the quality of the living envi- mote these efforts is to have LGBT older adults ronments of dependent LGBT older adults. Some identifi ed as a vulnerable population [84 ]. The potential targets for disseminating information Older Americans Act (OAA) has provisions that on culturally competent care are Area Agencies require state and local aging services agencies on Aging as well as ombudsman programs and funded by this act to engage in systematic efforts advocacy groups. Communities of interest that to identify vulnerable populations and their involve consumers, supportive others, medical needs. If LGBT older adults are identifi ed as a providers, social workers, personal care workers vulnerable population, Area Agencies on Aging and others can support efforts to improve the care (AAA) that provide a variety of community of LGBT older adults. services at the state and county level, would be The National Senior Citizen Law Center and required to track outcomes related to the utiliza- 11 other advocacy groups have drafted comments tion and quality of services delivered to LGBT that propose a number of changes to expand the older adults. rights of nursing home residents. These changes include: adding anti-discriminatory language to include sexual orientation, gender identity, as LGBT Older Adults and New Care well as marital status and family status. In addi- Delivery Models tion, it recommends allowing same sex partners to share a room and extend unlimited visiting The federal and state governments are seeking hours to any “friendly visitor” (currently only innovative ways to decrease cost and improve the family members are extended this privilege) [97 ]. quality of chronic care. At the federal level, service 188 M. Clark et al. delivery is being retooled to target support for vices provided. The CMS Center for Innovation people with disabilities regardless of age. One of and other funding sources are currently support- the primary changes involves providing effective ing a number of demonstration project to improve and integrated services that will allow frail older long term services in the community. LGBT adults and others with disabilities to remain in the older adults may benefi t from specifi c aspects of community. potential improvements that are being discussed In 2009, the Department of Human Services and tested [ 100]. A common theme in the plan- launched the Community Living Initiative to ning and analysis of these programs is the devel- direct important changes in chronic care for opment of consumer directed services. This people with disabilities. Many of the goals of includes mechanisms for community involve- this initiative could potentially improve the ment in the planning and evaluation of services. quality of care for LGBT older adults. Innovative There are proposals to develop a registry of new programs might promote fl exibility and agencies that match the specifi c needs of con- choice for LGBT older adults and their caregiv- sumers. Information provided by these registries ers. Some options that might be considered might include LGBT friendly agencies. Proposals include: Deciding where and with whom they to allow for employing family members should live; having control over the services they include language that designate an LGBT older receive and who provides those services; having adult’s “family of choice”. Programs that give the ability to work and earn money; choosing money directly to consumers to hire their own friends and family to help them participate in direct care workers should provide a list of direct community life (and in some cases pay them for care workers who are competent in caring for these services); and, receive information and LGBT older adults [100 ]. services that take into account their cultural and linguistic needs. The Agency on Aging (AoA) is now a part of Clinician Involvement in Practice the Administration for Community Living which Improvement for LGBT Older Adults in is in turn a part of the Department of Health and Human Services. Service domains for the As previously outlined, the main consideration Agency on Aging will include: Elder rights ser- for high quality direct care is the development of vices; health prevention and wellness programs; warm, welcoming, supportive, open and collab- national family caregiver support programs; and orative relationships with LGBT older adults. In support services [72 ]. addition, clinicians need to keep abreast of devel- The Agency on Aging has begun to include opments in emerging evidence-based research on LGBT older adults in its language on diversity. health disparities and best practices that may spe- At present, the main funded effort has been to cifi cally benefi t LGBT older adults. In addition support the SAGE National Resource Center on clinicians will need to explore ways to improve LGBT Aging [99 ]. Advocacy will be needed to their practice settings in order to promote cultur- push for inclusive language and transparent inclu- ally competent care. sion of LGBT older adults within all appropriate Currently, most arguments for inclusion of Agency on Aging programs and initiatives. LGBT patients has been based on normative prin- Recently a Community Living Policy Center ciples such as justice. Clinicians need to fi nd ways at the University of California has undertaken to craft pragmatic arguments that seek to link efforts to identify and study promising long term improved care for LGBT patients with an care practices that are being implemented at the improvement in established quality metrics that state and federal level in order to make recom- drive payment for services. To accomplish this, mendations regarding the development of model clinicians must explore ways to align LGBT care state-level long term care services and support with evolving models of care delivery that will systems for LGBT older adults. Currently state- drive payment. These models place particular run systems are very uneven in the types of ser- emphasis on behavioral determinants of chronic 12 Geriatric Care and the LGBT Older Adult 189 health problems. Examples include the Chronic transgender(LGBT) baby boomers. This report Care Model, and the Patient-Centered Medical has many resources that support a better under- Home. These models reframe care to give the standing of health needs of LGBT adults 50 patient more control over choices regarding their years of and older. http://caringandaging.org/ care. They emphasize the need for an “activated – LGBT Aging Issues Network (LAIN ) patient” who is a collaborative partner in planning LAIN, a constituent group of the American and executing care. The quality of the provider- Society on Aging, works to raise awareness patient relationship will be a key factor in the col- about the concerns of LGBT elders and about laborative process. Process metrics are being the unique barriers they encounter in gaining designed to capture these characteristics of care. It access to housing, healthcare, long-term care is important that LGBT individuals be clearly and other needed services. LAIN has an excel- identifi ed in quality measurement processes. lent website with a great deal of information Clinicians can advocate for change in existing including the LGBT Aging Resources statutes, policies and programs at the federal, state Clearinghouse. http://www.asaging.org/lain and local level. They must also seek to infl uence – Outing Age 2010: Public Policy Issues professional organizations to include LGBT care Affecting Lesbian, Gay, Bisexual and issues in their mission, policies and strategic plans. Transgender (LGBT) Elders This report provides an in-depth look at public policy issues and challenges facing millions of Resources for Clinicians Caring lesbian, gay, bisexual and transgender people for LGBT Older Adults in the United States as they get older. http:// www.thetaskforce.org/reports_and_research/ A number of different types of resources are outing_age_2010 available for clinicians. Many of these resources – LGBT Older Adults in Long Term Care are not directed specifi cally to the needs of LGBT Facilities: Stories from the Field older adults. Further work needs to be done to This report, funded by the Arcus Foundation, ensure that these groups specifi cally include the was co-authored by six national organizations needs of the LGBT older population. References and reports on the results of a survey confor these resources are listed below: ducted to better understand the experiences of LGBT older adults in long-term care settings. General resources: http://www.lgbtlongtermcare.org/wp-content/ uploads/NSCLC_LGBT_report.pdf – The National Resource Center on LGBT – Tools for Protecting Your Health Care Wishes Aging : This is the most comprehensive source A guide prepared by Lambda Legal to assist of practical information, guidelines as well as LGBT in protecting their rights in health education and training programs for clinicians care settings. http://www.lambdalegal.org/ and consumers who seek to improve the lives publications/take-the-power/your-health- of LGBT older adults. This site is continually care-wishes.html updated with new resources. http://www. lgbtagingcenter.org/ – AARP Website: Home and Family: LGBT : Academic resources for clinical knowledge, Webpage designed to share information on issues research and policy: related to LGBT older adults. http://www.aarp. org/relationships/friends-family/aarp-pride. – University of California Center of html?intcmp=FTR-LINKS-WWA-LGBT Excellence for Transgender Health . The – The Aging and Health Report: Disparities mission of this center is to increase access to and Resilience among Lesbian, Gay, Bisexual, comprehensive, effective and affi rming health and Transgender Older Adults: Aging and care services for transgender and gender-vari- health issues facing lesbian, gay, bisexual and ant communities. One of its programs works 190 M. Clark et al.

to develop evidence-based primary care proto- that are culturally competent. The EI focuses on cols for the care of transgender patients. www. building bridges between the Aging services net- transhealth.ucsf.edu work, LGBT service and community organiza- – The Williams Institute : national think tank tions such as the William Way LGBT Community organization at the University Of California Center (WWCC), the local (SAGE), and LGBT Los Angeles School Of Law. The mission of seniors. In addition, the LGBT Elder Initiative the institute is to conduct rigorous, indepen- seeks to align with the efforts other groups such dent research on sexual orientation and gender as the Human Rights Campaign (HRC), National identity law and public policy. http://william- Gay and Lesbian Task Force (NGLTF), FORGE, sinstitute.law.ucla.edu/ a transgender rights organization, and other advocates for the rights of LGBT people. Professional society and specialty organiza- Rather than creating new organizations and tion resources: institutions, the EI is focused on assuring that the services and resources currently available are – American Geriatrics Society Sections & safe, welcoming and sensitive to the unique needs Special Interest Groups: Needs of Older of LGBT older adults in the Delaware Valley. Gay and Lesbian, Bisexual and Transgender They work to accomplish this goal through advo- Persons . www.americangeriatrics.org/about_ cacy, education, information dissemination, us/who_we_are/sections_special_interest_ referral, and training. groups/ The work of the LGBT Elder Initiative – American Medical Association: GLBT evolved out of the LGBT Rights Movement and Health Resources: Treating Older GLBT the AIDS epidemic. Also as a result of those Patients: Clinical resources and clinical two historic forces, large numbers of LGBT research related to the care of LGBT older people “came out” of the closet over the past adults. http://www.ama-assn.org/ama/pub/ half-century. Those people, members of the about-ama/our- people/member-groups-sec- baby boomer generation, are now reaching the tions/glbt-advisory- committee/glbt-resources/ age of 65. The LGBT Elder Initiative recog- lgbt-health-resources.page nized that attention needed to shift to these older individuals, including those with new and chronic HIV infections. Communities of Interest and the Potential for Change: The Elder Initiative Experience Targeting Key Issues

Overview of the LGBT Elder Initiative The LGBT Elder Initiative recognizes certain key problems and barriers for improving services. In Founded in October 2010 as an outcome of the a particular, these include the lack of cultural com- local LGBT Elder Initiative Summit, the LGBT petency among service providers and a lack of Elder Initiative (LGBTEI) is an all-volunteer, attention to the needs of LGBT older adults from advocacy organization dedicated to assuring that government and social service agencies. LGBT older adults have every opportunity to age Clinicians as well as federal, state and local agen- successfully. The LGBTEI, which is based in cies must become aware of the need for improved Philadelphia, PA, serves the geographic area services. The LGBT Elder Initiative seeks to create known as the Delaware Valley (Southeastern a local community of interest in order to educate Pennsylvania, Southern New Jersey and the State and address these issues. of Delaware). Congressional recognition of LGBT older The Elder Initiative works to assure access to adults as a vulnerable population in the Older information, resources, services, and institutions Americans Act (OAA) has been stalled for years. 12 Geriatric Care and the LGBT Older Adult 191

This lack of recognition in the OAA and by the The Service Provider Network aging services network, coupled with fear of social and institutional discrimination by consumers, has For large numbers of LGBT older adults, access- meant that the LGBT older adult population has ing the aging services network engenders fear of not been counted. Without data—census numbers, discrimination and mistreatment. These fears are health disparities studies, socioeconomic analy- based on past, negative experiences with health ses—development of targeted efforts to improve care and social service providers. The perception the health of this population have been weak. The and the reality are that social service and other opportunity for improved data collection, outreach aging service providers are not LGBT culturally efforts and development of targeted programs is competent and sensitive regarding the LGBT limited by the lack of current data and the lack of a older adult population. LGBT service providers federal mandate in the OAA to designate LGBT and organizations, by and large youth-centric, are older adults as a vulnerable population. This des- not aware of, nor sensitive to, the needs of older ignation would require state and regional Agencies adults in the community. For the aging popula- on Aging to track demographics and evaluate pro- tion, the issue of cultural competency has there- gram outcomes for LGBT older adults. fore become a top priority.

Growing Awareness Identifying Local Needs

Despite the lack of government recognition and Limited data is available regarding the needs of support, institutional awareness of the needs of LGBT older adults. Given the lack of date, the the LGBT older adult population is emerging; a LGBTEI’s fi rst step in beginning the local effort shift in consumer perspective is occurring simul- was to conduct a community needs assessment taneously. Advocacy efforts by many organiza- survey. This survey, circulated in summer 2010, tions and individuals have effected signifi cant received over 325 responses from LGBT- policy changes that have helped spur these shifts. identifi ed individuals over 55 years of age. From The end of Don’t Ask; Don’t Tell (DNDT), the that survey, the priority needs of the community policy excluding LGBT people from serving in were identifi ed to be physical and emotional the military, and the Supreme Court ruling grant- health and well-being; safe, affordable and wel- ing legal recognition to same-sex marriage in all coming housing; social networking and engage- states have been major milestones in changing ment opportunities; and culturally competent perceptions, laws and regulations. social services and case management.

Collaborative Political and Social Developing a Strategy Action A regional aging summit was convened in October Decades of lobbying and grassroots political 2010 to review the survey data and develop rec- organizing at the federal, state and local levels ommendations for action. The summit included have slowly created an environment in which all representatives from aging and LGBT organiza- of these efforts have begun to result in both policy tions, academicians, government representatives, and social change. Contributing to this change and community members. Modeled after environment are openly LGBT people and allies community organizing efforts used during the at all levels of elected government and throughout AIDS crisis, this process of engagement resulted government bureaucracies. in constituent and provider buy-in. 192 M. Clark et al.

The outcome of the summit was a directive to: Primary Goals

1. Empower LGBT older adults to advocate for To overcome the ageism, homo- and trans- their own health and well-being phobia, and discrimination that do exist and to 2. Work to assure that the providers in the aging take advantage of the community support struc- services network are culturally competent tures built throughout the AIDS crisis, the Elder 3. Advocate for legislation and public policies Initiative’s strategy for action simultaneously tar- that create a climate in which members of the gets consumers, providers and policy makers. An LGBT communities can age successfully at overriding goal of the effort is to avoid creation every age of an alternate, separate but equal system of services and supports. The existing structures of The broad outline of action for achieving these aging and LGBT services are vast. The goal is to goals was modeled on HIV/AIDS community make those providers and services culturally organizing with advocacy, education, informa- competent to meet the needs of the LGBT older tion dissemination, referral, and training as the adult population. The EI works with the commu- primary tactics. nity; the existing aging services network and LGBT service and community organizations to realize its goals. Collaboration involving as many The HIV/AIDS Experience community assets as possible is a key tactic along with advocacy, education, information dissemi- For grassroots organizations, the process of com- nation, referral, and training. munity building is challenging. Identifying and impacting diffi cult to reach and at-risk populations, those who are deeply closeted, those in Implementation communities and cultures that are not accepting of LGBT people, is a daunting task. The AIDS In the original community needs assessment sur- crisis presented what was perceived as a dire vey in 2010, issues of importance to the LGBT threat and created an environment of urgency. older adult community were identifi ed. Today, Aging does not create the same sense of urgency those overarching issues are broken down into and in this less “urgent” environment, organizing sub-topics and addressed in “campaigns.” Each is a slower process. campaign is designed to raise community awareness and empower community members with information and resources that they can use to Existing Systems of Support advocate for themselves in the process of seeking services and supports. Each campaign tries to Unlike the early stages of the AIDS crisis, a com- incorporate each of the fi ve operational tactics. munity infrastructure for people with HIV disease is now in place. There are many organizations and systems of supports within the LGBT com- A d v o c a c y munities. These supports, however, are not necessarily attuned to the needs of older adults. As a general policy, representatives of the Elder Conversely, structures are in place to provide Initiative attempt to secure “seats at the table” of health care and social services for older adults as community organizations, service providers, a whole. These services are not necessarily wel- government advisory committees and commis- coming to, inclusive of, or viewed as safe by, sions, and other relevant groups. Speakers, LGBT older adults. knowledgeable about the available data and the 12 Geriatric Care and the LGBT Older Adult 193 unique issues facing LGBT older adults, are pro- LGBT issues as well as the ongoing education vided whenever and wherever possible to these and advocacy work of the organization. A multi- groups. Membership on boards, committees and tiered communications strategy has evolved to commissions are actively sought out in order to disseminate information on each of the LGBTEI’s assure that the communities’ voices are heard. educational and advocacy projects. In addition, As part of each sub-topic campaign, advocacy the website provides links to social media plat- efforts specifi c to that issue are initiated. In a cam- forms, an e-newsletter, and information-driven paign addressing the issue of cognitive impairment articles that appear in both print and electronic in LGBT older adults, representatives from the EI media. and collaborating partner organizations provided For each campaign topic, information is testimony to state planning committees. The goal blogged on the website, articles are placed in in this case was to secure the inclusion of LGBT branded columns, and press releases are issued. older adults in the Pennsylvania State Plan on Each education program is advertised in print and Alzheimer’s. Inclusion in that Plan would start the e-media, on social media platforms through links process of data collection, outreach efforts and to the website, in e-blasts, notices in the funding specifi c to the needs of LGBT older adults e-newsletter, and distributed via printed fl yers. with memory loss, dementia and Alzheimer’s dis- Collaborating organizations and community part- ease. This advocacy effort is ongoing. ners promote each education program through their own communications platforms. Following education events, press releases Education and/or articles are issued and summaries of the event are posted on the website and highlighted Workshops, seminars, panel discussions, and in social media. In cases where the event is vid- community forums are developed and presented eotaped, such as the cognitive issues program, throughout the year. These programs may be video segments of the presentations are posted to offered either as a stand-alone event or as part of a the website and YouTube. larger conference. Each program features experts in the fi eld who discuss the designated topic. Community assets are recruited to provide expert Referral information and to promote and discuss the issue within their own constituencies. In the campaign Lists of LGBT senior-friendly advocacy, com- focusing on cognitive impairment, the Alzheimer’s munity and service organizations are housed on Association, the Mazzoni LGBT Health Center the website. Resources in categories including (Philadelphia), and the Penn Memory Center, part housing options and legal and medical services of Penn Medicine, the University of Pennsylvania are also listed. In conjunction with each topic Health System, collaborated on the program. addressed in a campaign, lists of relevant Education programs are also designed to resources are compiled and distributed at the edu- address the key issue of social networking. They cation event, included in articles published, and provide a safe and welcoming setting for LGBT posted to the website. older adults to meet new people, share experiences and build community. Many of these programs feature congregate meals, an especially Training important opportunity for social engagement. The resources, services and systems of care and support for LGBT older adults must be cultur- Information Dissemination ally competent as aging LGBT baby boomers begin to access them. The process of training The LGBTEI website is a key asset for the orga- and informing the networks of care providers nization. This website provides information on is an enormous undertaking and requires a 194 M. Clark et al. paradigm shift in the thinking within those viders and collaboration with existing local systems. Many organizations, including the organizations that provide health and social ser- LGBTEI with its “Silver Rainbow Project,” pro- vices for LGBT individuals. These organizations vide cultural competency training programs for include the Mazzoni LGBT Health Center, the aging service providers. William Way Community Center, the Attic Youth Current training models include on-site pro- Center and the LGBT Elder Initiative. grams, conference sessions and webinars. Other models are being tested to help speed the process of training the network. Limited government and Models That Support “Aging in Place” private funding impedes that effort despite advocacy efforts on the national and local levels to The LGBTEI tracks the activities of several orga- create and maintain a funding stream for this nizations that promote healthy “aging in place”. training. It also partners with local organizations such as Care and service providers are also invited to Penn’s Village (a local organization that is part attend the education programs described above of the Village to Village movement) as well as the and research and resource information targeted at low income senior housing unit (John C. providers is posted to the website. Webinars and Anderson Apartments). The following list, other training programs are listed on the site and “Organizations that support communities of featured in the e-newsletter. interest,” summarizes the mission and activities of these important organizations.

Future Directions: The Intersection of Communities of Interest Organizations That Support and Communities of Practice Communities of Interest

Integrated provider/community collaborations Naturally Occurring Retirement present great potential for narrowing the health Communities disparities faced by the LGBT older adult popu- A NORC is a community that was not originally lation. Currently, the University of Pennsylvania designed for seniors, but that has a large proportion Health System is seeking to develop a “Center of of residents who are older adults (at least 60 years Excellence” that will serve LGBT individuals old). These communities are not created to meet (see resource list). This “Penn Medicine Program the needs of seniors living independently in their for LGBT Health” seeks to improve the care of homes, but rather evolve naturally, as adult residents LGBT populations by becoming a local and age in place. http://www.norcs.org/index.aspx national leader in LGBT patient care, education, SAGE Harlem Program is one NORC model research, and advocacy. This program builds serving LGBT older people of color living in upon work initiated by other academic institu- Harlem. SAGE Harlem provides culturally and tions such as Vanderbilt University, the University linguistically competent services. In the case of of California, San Francisco and the University SAGE Harlem, a large number of people moved of California, Davis. The University of into an apartment building 30 or 40 years ago, and Pennsylvania recognizes the need to develop a then stayed. Now elderly, these people make up a local community of interest to guide the planning large percentage of the population of the building and development of this center. and need services. The program provides services The mission and goals of the University of inside the building so people don’t need to go out Pennsylvania program include several dimen- to get them. This model includes three service sions. The LGBT Elder Initiative serves on the components: a housing partner, a social worker or advisory board this program. These include cul- case manager, and one or two medical providers, tural competency education for healthcare pro- usually a visiting nurse and the nearest hospital. 12 Geriatric Care and the LGBT Older Adult 195

The goal of these services is to keep people in disparities faced by the LGBT older adult their own homes as long as possible as opposed to population. The University of California Davis having them go to an institution (SAGE http:// Health System and Vanderbilt University School www.lgbtagingcenter.org/resources/resource. of Medicine are two pioneer models. The cfm?r=405#sthash.4RIB1JC4.dpuf). University of Pennsylvania’s “Penn Medicine Program for LGBT Health” is a more recent LGBT Senior-Friendly Housing effort based on a fully integrated approach Communities throughout the institution and between the insti- Another model receiving attention is a planned tution and the community. Its mission is to integrated housing-health care-social service improve the care of LGBT populations by model. Several LGBT “senior-friendly” housing becoming a local and national leader in LGBT developments have been built or are under devel- patient care, education, research, and advocacy. opment. There is a mix of public versus private http://www.pennmedicine.org/lgbt/ . funding among these developments. The goal is The rationale for the Program is that LGBT to provide safe, welcoming and affordable hous- individuals, and in particular transgender people, ing for LGBT older adults. Many of these devel- face provider and health system barriers to care. opments incorporate access to medical care and Provider level barriers include negative beliefs social services for residents. Opportunities for and actions toward LGBT patients and gaps in social engagement are often provided through knowledge about the health concerns facing the collaborations with local LGBT community cen- LGBT population. Health system barriers include ters. This model may only be suited to urban inequitable health insurance plans and hospital/ areas with signiﬁ cant LGBT populations. clinic policies and practices.

Neighborhood Support Systems The Village-to-Village Movement (VtVM) may Conclusion serve as another model for providing support services for older adults. The model, not speciﬁ cally LGBT older adults, due to lifetimes of stigmati- LGBT-oriented, centers on neighbors helping zation, marginalization, discrimination, and each other age in place. The VtVM is a network of criminalization, face signiﬁ cant health disparities community-based organizations that provide ser- and obstacles to access to the care and services vices that are not typically supplied by area agen- that they need in order to age successfully. cies on aging, senior centers, advocacy groups, Clinicians who seek to improve health outcomes and others in the aging services network. for this population need to develop a full spec- Nationally, there are 120 villages in operation trum of professional knowledge and skills. with 100 in development. Over 20,000 people Efforts to improve care require that we improve belong to villages. Most villages are supported the quality of data on demographics, health dis- by volunteers who deliver a variety of services parities, and the effectiveness of interventions to and programs. Each village has a unique person- improve health outcomes. Care also needs to be ality in that each sets its own goals and services improved at the systems level by ensuring that all based on their community’s needs and prefer- health and social services provided to LGBT ences. All of the villages are established to help older adults are culturally competent. LGBT people remain independent and age successfully older adults and the communities in which they in their own homes. http://www.vtvnetwork.org . live must be active partners in building capacity for needed services. Clinicians must engage in Academic Community Partnerships dialogue within their communities of practice as Integrated provider/ community collaborations well as key communities of interest in order to present great potential for narrowing the health achieve these ends. 196 M. Clark et al.

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• Discuss mental health treatment issues that Purpose are specifi c to the LGBT community (PC5, PC6). The purpose of this chapter is to review mental health issues that occur more commonly in the LGBT community, discuss the interface of the Gender and Sexuality mental health fi eld with the LGBT community, from the Perspectives of Culture, especially in terms of etiology of sexual orienta- History, and Mental Health tion and gender identity, and discuss unique aspects of relationships in the LGBT community The perspective of psychiatrists on people with and how they can affect both mental and physical minority sexual orientations and gender identities health. has evolved over time. Since the 1970s, there has been an emerging consensus within the psychiatric community that homosexuality is not a dis- Learning Objectives ease—rather, it is a normal variation of human sexual experience. At this point, every major This chapter will prepare learners to: mental health, public health, and medical professional organization has issued a position paper • Describe mental health concerns that occur affi rming that homosexuality is a normal varia- more commonly in the LGBT population tion of sexuality and opposing discrimination (KP4, PC5). based upon it. • Describe theories of the etiology of sexual ori- The perspective of the American Psychiatric entation and gender identity (KP3). Association (APA) on gender is somewhat more • Discuss unique aspects of relationships in the complex. The current, fi fth, edition of Diagnostic LGBT community and how these can affect and Statistical Manual of the American both physical and mental health (PC5). Psychiatric Association includes the diagnosis of “gender dysphoria,” which focuses on the distress and impaired functioning that some C. M. Palmer , M.D. (*) • M. B. Leslie , M.D. transgender and gender non-conforming people Department of Psychiatry , McLean Hospital/Harvard Medical School, 115 Mill Street , Belmont , may experience due to their gender identity [ 1 ]. MA 02478 , USA In a statement regarding the diagnosis of “gender e-mail: [email protected]; [email protected] dysphoria,” the APA clarifi es that “gender

© Springer International Publishing Switzerland 2016 201 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_13 202 C.M. Palmer and M.B. Leslie

nonconformity is not, in itself, a mental disor- founder of psychoanalysis, contended that der.” In response to concerns that this diagnosis is humans are born with pluripotent libido that can reminiscent of “ego-dystonic homosexuality” develop in many different ways based on societal (which was removed from the DSM in 1987) in taboos and relational events [4 ]. Writing to an that it pathologizes the effects of social prejudice, American mother in 1932, Freud reassured her the APA contends that there is a need for a diag- that homosexuality was “nothing to be ashamed nosis related to gender variance so that insurers of, no vice, no degradation, it cannot be classifi ed will cover medically necessary treatment [2 ]. as an illness, but a variation of sexual function.” It is useful to contextualize our discussion of Freud opposed attempts to change a patient’s gender, sexuality, and mental health within a sexual orientation on the grounds that it was larger framework of cultural perspectives on sex- unlikely to succeed and felt the role of therapy uality and gender. Same-sex attraction, behavior, was to help the patient “gain harmony, peace of and love have existed from the beginning of his- mind, full effi ciency, whether he remains a homo- tory, as have infi nitely varied gender identities. sexual or gets changed” [ 5 ]. Unfortunately, sub- Different cultures, however, have viewed sexual- sequent psychoanalysts took a far more negative ity and gender in radically different ways. This is perspective, viewing homosexuality as a patho- not simply a matter of a culture being “accept- logical condition caused by family problems and ing” or “rejecting” of “LGBT” people; the very developmental failures. This perspective language and cognitive framework used to think informed the inclusion of homosexuality as a about sexuality and gender is culturally specifi c. mental disorder in the fi rst and second versions of Some cultures embrace more than two genders the American Psychiatric Association’s (such as “two-spirit” people within many Native Diagnostic and Statistical Manual. American societies); others normalize (for exam- Subsequent authors, such as Havelock Ellis, ple, pederasty in Ancient Greece) or even man- and researchers, including Alfred Kinsey and date (for example, the male initiation rituals of Evelyn Hooker, expanded psychiatry’s perspec- the Sambia in Papua New Guinea) homosexual tive on variations in human sexual behavior. activity. The very framework that we use to think These and other pioneers, along with the emer- about sexuality and gender—indeed, the con- gence of the gay rights movements in the years cepts of “sexuality” and “gender” themselves— after the 1969 Stonewall uprising, led both psy- are culturally specifi c and far from universal. chiatrists and society at large to re-evaluate their Many sociologists contend that the modern understanding of homosexuality as a pathologi- idea of “homosexuality” as a stable, discrete, cal condition. The American Psychiatric sexual orientation emerged in Western cultures in Association declassifi ed homosexuality itself as a the nineteenth century—around the same time mental disorder in 1973, and fi nally removed the that psychiatry emerged as a separate fi eld of last vestiges of this diagnosis (“ego-dystonic medicine [3 ]. Prior to this time, homosexual acts homosexuality,” or a patient’s distress with their were primarily viewed through the lens of own sexual orientation) in 1987. Christian moral teachings as aberrant and immoral behaviors. During the nineteenth century, physicians became interested in same sex The Etiologies of Sexual Orientation attraction as a clinical problem, and both the and Gender Identity modern concept of “homosexuality” and its medical pathologization began. Context and Controversies Psychiatrists were among the fi rst clinicians to study sexual orientation and gender identity. It is The causes of varying sexual orientations and sometimes overlooked that these early investiga- gender identities have been widely studied over tors were not universally pathologizing. In his the past 150 years. While numerous etiological Three Essays on Sexuality, Sigmund Freud, a theories—some rigorously evidence based, and 13 Adult Mental Health 203 others dubiously speculative in nature—have illnesses, and traumas) and somewhat less been proposed, none have proven conclusively a strongly by heritable factors. Sexuality in men primary determining factor for sexuality and/or demonstrated a statistically non-signifi cant trend gender. At this point, a variety of causative fac- towards a stronger effect of heredity effects than tors have been identifi ed; it appears likely that women. Environmental variables shared by each both sexuality and gender are determined by a twin (such as familial environment and societal combination of genetic, hormonal, psychologi- attitudes) had a weak effect in female twins and cal, and social factors. none at all in men. Although wide confi dence Exploration of the etiology of sexual orienta- intervals necessitate cautious interpretation, the tion and gender identity is inherently controver- results are consistent with moderate familial (pri- sial and often politically fraught. Careful attention marily genetic) effects, and moderate to large must be paid to the possibility of bias. Identical effects of the non-shared environment on same- theories can be used to support radically different sex sexual behavior [8 ]. agendas; conviction in the primacy of biological Chromosome linkage studies of sexual orien- causes fueled the horrifi c genocide of gender and tation have indicated the presence of multiple sexuality minorities in Nazi Germany but also contributing genetic factors throughout the underpins (either implicitly or explicitly) many genome. Beginning with Dean Hamer and col- contemporary arguments for LGBT equality. league’s widely reported study in 1993, multiple Cross-national research suggests that those who investigators have suggested that particular allelic espouse a biological explanation for homosexu- variations in a distal region of the X-chromosome ality tend to hold signifi cantly more positive atti- (known as Xq28) may be associated with male tudes towards it [ 6]. Historically, investigators homosexuality that follows a maternal inheri- have often (again, either implicitly or explicitly) tance pattern [ 9 ]. Subsequent studies have assumed that homosexuality and transgender revealed additional alleles that may be associated identity are theoretical, evolutionary, or social with male homosexuality, and animal studies conundrums in need of explanation while assum- confi rm clear genetic control of courtship behav- ing that heterosexuality and cis-gender identity iors in the common fruit fl y [10 ]. The genetic represent a normative, even “default,” develop- explanation for variance in sexual orientation and mental state. It is our opinion (and the current gender identity is further supported by a number scientifi c consensus) that any coherent etiologi- of subtle physical differences, including differ- cal theory must start from a neutral position ences in the relative lengths of certain fi ngers, regarding outcome and explain the full diversity direction of hair whirl pattern, and a greater ten- of sexual orientations or gender identities. dency towards left-handedness for both gay men and lesbian women. A variety of other biological factors appear to Biological Theories contribute to sexual orientation, especially in men. Birth order appears to play a signifi cant With that important context noted, there have role; each additional older brother increases the been a variety of empirical studies exploring the odds of a man being gay by 33 %. It has been role of biological factors in determining sexual controversially hypothesized that male fetuses orientation and gender identity. Twin studies provoke a maternal immune reaction that have generally demonstrated a greater concor- becomes stronger with each successive male dance in sexual orientation in monozygotic than fetus and that interferes with masculinization of dizygotic twins [7 ]. A 2010 study of 7600 adult the fetal brain [11 ]. It has been reported that twin pairs in Sweden found that same-sex behav- women related to homosexual men tend to have ior in both men and women was explained more children than women related to heterosex- strongly by individually specifi c environmental ual men, and that women related to homosexual sources (such as peer groups, sexual experiences, men through their own mothers tend to have 204 C.M. Palmer and M.B. Leslie more offspring than those related to homosexual “polymorphously perverse”—meaning that a men through their fathers. Based on this observa- wide variety of experiences could potentially tion, researchers have hypothesized the existence produce libidinal gratifi cation. Largely uncon- of X-linked genes that promote both maternal scious and often relational crises (including the fertility and homosexuality in male offspring. A Oedipal crisis and castration anxiety) pushed the number of neuroanatomical differences have omni-sexual infant through a series of develop- been correlated with variance in sexual orienta- mental stages (famously termed oral, anal, phal- tion and gender identity, including (most lic, latency, and genital) towards mature adult famously, but also quite controversially) several sexuality. Freud felt that this was a universal nuclei in the anterior hypothalamus [12 ]. Finally, model of psychosexual development that could there are multiple theories that link variations in explain all manifestations of adult human sexual- prenatal hormonal milieu with adult sexual orien- ity [4 ]. Subsequent psychoanalytic theorists have tation and gender identity. continued to offer nuanced and complex ways to understand the diversity of sexualities and gender identities, albeit with varying degrees of patholo- Evolutionary Theories gization and prejudice. Several “pop psychology” theories—such as the role of the over-bearing A variety of hypotheses have been proposed to mother and the passive, absent father in “turning” explain the evolution and maintenance of homo- sons gay—have been debunked. sexuality among humans, given its apparent Contemporary psychoanalytic perspectives on reproductive (and thus evolutionary) disadvan- sexuality and gender are informed by deconstruc- tage. Some scholars have suggested that while tionist philosophy, third wave feminism, and the the genes predisposing to homosexuality reduce LGBTQ civil rights movement. In 1990, Judith homosexuals’ reproductive success, they may Butler argued in her ground-breaking work confer some advantage in heterosexuals who Gender Trouble that the apparent “normal” carry them (such as the increased female fecun- coherence of sex, gender, and sexuality is, in fact, dity described above). Alternatively, the theory a construction of culture [13 ]. For a somewhat of kin selection (colloquially referred to as the clichéd example, consider a butch-acting, hetero- “gay uncle” hypothesis) posits that childless peo- sexual, biologically male, cowboy. The coher- ple may nonetheless increase the prevalence of ence of his identity is constructed by the repetition their family’s genes in future generations by proof “stylized actions” over time—walking with a viding resources (food, supervision, defense, swagger, drinking beer, riding horses, and sleep- shelter, etc.) to the offspring of their closest ing with women. From our perspective within relatives. American culture, we take for granted that these behaviors and traits comprise a distinct and coherent identity; in fact, they are produced by Psychoanalytic Theories our culture itself. Our cowboy creates his identity as a butch, straight man by engaging in the con- In addition to biological, genetic, evolutionary, sistent and predictable repetition of stylized and social approaches, psychoanalytic theory has actions; in this sense, gender is “performative.” It richly and usefully addressed questions of sexu- is important to note that this is not a voluntary, ality and gender. In his Three Essays on the fl exible, or even fully conscious performance. Theory of Sexuality, Sigmund Freud presented a Butler contends that social “regulative dis- theory of psychosexual development that courses” ranging from the benign (e.g. dressing attempted to explain the process by which people male infants in blue onesies) to the horrifying eventually develop adult sexual attractions. In (e.g. the murders of Matthew Shepherd or contrast to essentialist perspectives of modern Brandon Teena) coerce people to perform norma- geneticists, Freud argued that infants are born tive behaviors and thereby manifest a congruent 13 Adult Mental Health 205 gender, sex and sexuality. Thus, Butler contends sex development now recommend an approach that gender itself is a product of a social regula- that is less interventionist and more fl exible, indi- tive discourse—and that gender does not exist as vidualized, and evidence-based [15 ]. There is an essential, innate entity [13 ]. also nearly universal clinical consensus that sex- Other psychoanalysts take a less radical posi- ual orientation and gender identity cannot be tion. Jessica Benjamin, for example, argues that changed by direct psychotherapeutic interven- the existence of gender is paradoxical; in some tions. So-called “conversion” (or “reparative”) contexts it is “thick and reifi ed,” while in others, therapies are not evidence-based treatments; they it is “porous and insubstantial.” Benjamin sug- cause more psychological stress than they allevi- gests that, beyond describing actual individual ate and they fail to produce meaningful changes identity, gender is an abstract, fundamental con- in orientation or identity. “Conversion” treat- cept that determines the very framework of our ments are opposed on scientifi c, clinical, and thinking, thereby defi ning the categories that ethical grounds by all relevant American profes- might be used to deconstruct it. Thus, the binary sional organizations, including the American opposition of conceptual “maleness” and Medical Association, the American Psychiatric “femaleness” is superordinate to any concrete Association, the American Academy of relationships or actual identities. Ultimately, Pediatrics, the American Psychological Benjamin contends that gender exists in infi nitely Association, the National Association of Social complex and ambiguous formations, and that our Workers, the American Association for Marriage ability to understand this complexity and play and Family Therapy, and the American with it actually contributes to our creativity [14 ]. Psychoanalytic Association.

Essentialism and Mutability Mental Health Issues in the LGBT of Sexuality and Gender Population

Finally, all theories of sexuality and gender offer Reasons for Mental Health Disparities an implicit (or sometimes explicit) position on the essentialism and mutability of these entities. Adults with minority gender identities and sexual Genetic theories imply an immutability that is orientations clearly experience an increased risk useful in civil rights litigation but contradicts the for many mental health conditions, including lived experience of some individuals, especially mood and anxiety disorders, PTSD, substance (but certainly not exclusively) lesbian women. In use disorders, body dysmorphic and eating disor- sharp contrast; Freud began from a position of ders, and personality disorders. Of note, there is nearly complete mutability; the infant has a no clear difference in the prevalence of schizo- libido, but its object changes through the course phrenia or bipolar disorder. The exact magnitude of development. Butler and Benjamin offer of the relative risk varies by population and will sophisticated and useful critiques of the very be discussed below in further detail. Several fac- ideas of “gender” and “sexuality” rooted in philo- tors contribute to the increased prevalence of sophical and feminist perspectives. Behavioral mental illness in the LGBT population. psychologists in the 1960s (famously led by John Money) contended that gender identity in chil- Minority Stress dren is fl uid and largely determined by rearing; The theory of minority stress was developed to this now discredited theory led to the castration explain why minority individuals (including sex- of male children with penile malformations and uality and gender minorities) often suffer physi- their subsequent assignment to female gender cal and mental health experience disparities and rearing, often with tragic results. Experts on compared to their peers in majority groups. A the treatment of children born with differences of large body of evidence now supports the asser- 206 C.M. Palmer and M.B. Leslie tion that LGBT people face diffi cult social situa- LGBT people about themselves, whether or not tions that lead to poor health, including prejudice they identify as LGBT. Internalized sexual preju- and discrimination, unequal socioeconomic sta- dice creates a confl ict between a person’s ideal- tus, and limited access to healthcare. In general, ized self-image and his or her actual sexual evidence does not support the hypothesis that orientation. The person may not be fully con- LGBT individuals are inherently susceptible to sciously aware of this confl ict. People with high health problems; environmental factors explain levels of internalized sexual prejudice tend to minority health disparities better than do genetic hold negative views of their own sexual orienta- factors [16 – 18 ]. tion, ranging from mild discomfort to outright Minority stress theory suggests that, for LGBT disapproval. This chronic internal confl ict and people, repeated diffi cult social situations consti- negative self-judgment leads to chronic anxiety, tute stressors that contribute to health disparities. depression, repression of sexual desire, forced These stressors can be separated into two major attempts at heteronormative behavior, and des- types, external and internal. External stressors perate attempts to change one’s sexual orienta- (sometimes termed “distal”) include experiences tion. It is also likely related to the high rate of with prejudice, rejection, and discrimination. In self-harm behaviors, substance use, risk-taking time, these external stressors can lead to internal behaviors, and suicide among LGBT youth and (or “proximal”) stressors, including internalized adults [21 ]. Historically, internalized sexual prej- homophobia, remaining in the closet, and vigi- udice was diagnosed as “ego-dystonic homosex- lance and anxiety about prejudice. Together, uality” until its removal from the DSM in 1987. internal and external stressors accumulate over As previously discussed, this diagnosis was used time, leading to chronically high levels of stress to justify psychotherapy designed to change a that cause poor health outcomes [18 ]. Minority patient’s sexual orientation. This kind of “repara- stress theory is supported by numerous empirical tive” therapy has now been refused by all of the studies [19 ]. major professional mental health associations. Several studies have demonstrated a link Both clinical experience and the evidence base between external stressors and health disparities. instead support helping an LGBT person to Compared with heterosexual peers, LGBT adults resolve their internalized sexual prejudice rather more frequently report both lifetime and day-to- than try (in vain) to change their sexual orienta- day experiences with discrimination; much of tion. Internalized sexual prejudice can be miti- this difference can be attributed to their sexual gated with education, social relationships, life orientation. Perceived discrimination is associ- experiences, and psychotherapy. ated with worse quality of life and indicators of psychiatric morbidity. Controlling for differ- Co-occurring Risk Factors ences in discrimination experiences reduces sig- Minority stress theory and internalized sexual nifi cantly the association between psychiatric prejudice contribute to the signifi cant mental morbidity and sexual orientation for LGBT health disparities facing people with minority adults [ 20 ]. gender identities and sexual orientations. A slightly different perspective can be gained Internalized Sexual Prejudice through examining discrete risk factors for poor Minority stress theory suggests that internal mental health outcomes. Many of these risk fac- stressors underlie many of the health disparities tors affect both heterosexual and LGBT people: facing the LGBT community. One such internal poor family or social support, lack of education, stressor is internalized sexual prejudice, com- homelessness, substance use, chronic physical monly known as “internalized homophobia.” illness, psychiatric disorders, discrimination, and Internalized sexual prejudice refers to the nega- hate crimes. While heterosexuals experience tive beliefs, stereotypes, stigmas, and prejudices these stressors, they are far more prevalent about homosexuality and LGBT identity held by among LGBT persons [22 ]. 13 Adult Mental Health 207

Suicide surgical gender affi rmation treatments (and thereby represent only one subgroup of a larger Adults with minority gender identities and sexual population). Various studies estimate that orientations are clearly at increased risk of delib- between 10 and 45 % of transgender and gender erate self-harm, attempted suicide, and com- variant individuals attempt suicide. Particular pleted suicide, although exact rates vary among risk factors include younger age, more severe dis- studies and sub-population. Numerous studies crimination, and lack of family support [23 ]. have demonstrated rates of suicide attempts among gender and sexuality minorities ranging from 1.5 to 7 times the rate of heterosexual, cis- Mood Disorders gendered peers [ 23 ].A very large meta-analysis (including 214,344 heterosexual and 11,971 non Numerous studies have demonstrated that peo- heterosexual subjects) found a twofold excess in ple with minority gender identities and sexual suicide attempts in adult lesbian, gay and bisex- orientations suffer a disproportionately high rate ual people [24 ]. of mood disorders, especially major depression. Sub-populations within the LGBT community The risk of a gay man developing depression is suffer varied risks of suicide. Gender appears to approximately two to three times that of a het- play a signifi cant factor in determining this risk. erosexual man. Lesbian women face approxi- Same sex orientation clearly increases the risk of mately 1.5 times the risk of straight women. For both attempted and completed suicide more for both men and women, rates are even higher men than for women [23 , 24 ]. Several studies among those who identify as bisexual. The have reported that the gender pattern for suicidal impact of aging on the prevalence of depression ideation is opposite that for suicide attempts, is not entirely clear [27 , 28 ]. with risk of suicidal ideation higher among les- Studies have not demonstrated that LGBT bian/bisexual women and risk of suicide attempts adults face a signifi cant increase in the risk of higher among gay/bisexual men [ 23 ]. experiencing a manic episode or receiving the While research specifi cally addressing suicide diagnosis of bipolar affective disorder [29 ]. amongst lesbian and bisexual women is limited, The relationship between race/ethnicity and there is solid evidence that, compared with het- depression within the LGBT population is not erosexual women, lesbian and bisexual women entirely clear. One study found that African- are about twice as likely to have attempted sui- American LGB people have signifi cantly lower cide; having a “closeted” sexual orientation fur- rates of depression than either Latino or white ther increases risk [25 ]. LGB people. This stands in contrast to the fact LGBT people of color in general, and Native that LGBTQ people of color appear to have a Americans and Latinos in particular, may be at higher rate of suicide attempts [26 ]. increased risk of suicide compared with white More research is needed regarding the preva- LGBT people [25 , 26 ]. lence of mood disorders within the transgender Data regarding suicide among bisexual people and gender non-conforming population. is limited, although data suggests that bisexual Preliminary fi ndings indicated a markedly ele- people attempt suicide at nearly three times the vated risk of depression among transgender indi- rate of heterosexual peers, a rate which is even viduals [30 ], perhaps as high as 44.1 %, although higher than that suffered by either gay men or les- likely higher among female-identifi ed individu- bian women [27 ]. als [31 ]. Of note, social stigma was positively Transgender and gender non-conforming associated with psychological distress, but is adults clearly suffer the greatest risk of suicide moderated by peer support from other transgen- among LGBT populations. Unfortunately, rela- der people [31 ]. There is ample evidence that tively sparse data is available regarding the mag- depression symptoms improve dramatically with nitude of this risk, and much of it comes from the initiation of gender affi rmation treatments, studies of people who have sought medical or including hormones [32 ]. 208 C.M. Palmer and M.B. Leslie

Anxiety Disorders the rate of Muslim Americans, 13.8 times the rate of Latinos, and 41.5 times the rate of non-gay Research has demonstrated that gender and sex- whites [ 34 ]. One study suggests that double uality minorities are at increased risk of develop- minority status does not necessarily increase the ing an anxiety disorder. Gay men, lesbian risk; African- American and Latino LGB people women, and bisexual women suffer anxiety dis- were no more likely than Caucasian LGB people orders at two to three times the rate of same-gen- to experience a prejudice event [35 ]. The inci- dered heterosexuals; lesbian women suffer dence of hate crimes against transgender commu- anxiety disorders at approximately 1.5 times the nities is even higher than that facing sexual rate of straight women [ 27 , 28]. This pattern of orientation minorities; these crimes tend to be signifi cantly elevated risk holds roughly for each particularly brutal, sexual, and lethal. specifi c anxiety disorder, including panic disor- Given that lesbian, gay, and bisexual people der, specifi c phobia, social phobia, and general- suffer more traumatic events than their hetero- ized anxiety disorder [28 , 29 ]. Of note, sexual peers, it is not surprising that they develop generalized anxiety disorder is clearly related to PTSD much more frequently, as well. Using data general societal attitudes. A very large (34,000 obtained from a very large, representative, subject) study examined the mental health of national survey, Roberts and colleagues deter- LGB people in the 14 states that banned same mined that lesbian women, gay men, bisexual sex marriage in 2004. LGB subjects in states that women, and heterosexuals who reported any banned same sex marriage displayed a 248 % same-sex sexual partners over their lifetime had increase in generalized anxiety disorder, com- approximately twice the risk of developing PTSD pared to no signifi cant increase in the compara- than that of exclusively heterosexual people. This ble control group (from states which did not pass higher risk was largely accounted for by sexual marriage bans) [ 33 ]. orientation minorities’ greater exposure to vio- There is a suggestion that the prevalence of lence, exposure to more potentially traumatic anxiety disorders may decrease with age [ 26 ]. events, and earlier age of trauma exposure. The relationship between race/ethnicity and anxi- Roberts and colleagues conclude there is an ety among LGBT people is not clear. More urgent need for both violence prevention and research is needed regarding the prevalence of trauma treatment programs for sexual orientation depression within the transgender and gender minorities [36 ]. non-conforming population. Anti-gay prejudice is often intertwined with prejudice against gender non-conformity. Gordon and Meyer contend that careful consideration of Post-traumatic Stress Disorder anti-LGBT bias must include a thoughtful analysis of both transphobia and homophobia [37 ]. All minority gender identity and sexual orienta- Transphobia is widespread and severe, even in tion groups experience high rates of discrimina- progressive states and within the LGB commu- tion and bias crimes, as well as corresponding nity. The Massachusetts fi ndings from a 2009 sur- high rates of post-traumatic stress disorder. vey by the National Center for Transgender LGBT people are more likely than almost any Equality and the National Gay and Lesbian Task other minority group in the United States to be Force indicated that 58 % of transgender adults victimized in a hate crime. According to a 2010 were verbally harassed in a place of public accom- analysis of FBI hate crime data and US Census modation, 22 % of transgender adults were denied population statistics by the Southern Poverty Law equal treatment by a government agency or offi - Center, LGBT people account for more than 17 % cial, and 24 % of transgender adults suffered of all hate crimes victims. LGBT people are vic- police harassment [ 38 ]. While data on prejudice timized at 2.4 times the rate of Jewish Americans, against transgender and gender non-conforming 2.6 times the rate of African Americans, 4.4 times people is sparse, multiple studies suggest rates of 13 Adult Mental Health 209 discrimination events approaching 60 % and bias morphia is associated with higher rates of sub- crimes approaching 25 % [ 39 ]. There is no con- stance use, especially anabolic steroid use, and clusive data regarding risk of PTSD among gen- suicide attempts [ 46]. Distortions of male body der identity minorities, although one would image and related disordered eating and exercise expect rates exceeding that of the larger LGBT behaviors are often called the “Adonis complex,” community. the title of a book on this subject by Pope and Phillips [47 ]. There is greater controversy regarding the Disorders of Body Image and Eating relationship between sexual orientation and risk for eating disordered behaviors in women. Multiple studies have demonstrated that sexual Applying the sociocultural perspective to sexual orientation is a robust risk factor for eating disor- minority women, some researchers have pro- ders in men, increasing the risk that sexual orien- posed that they may be less prone to eating disor- tation minority men will develop anorexia or ders because they do not share with heterosexual bulimia [40 , 41 ]. This holds true across different women the pressure to attract a male partner [42 ]. racial and cultural groups [40 ]. Multiple studies Studies, however, have yielded confl icting suggest that sexual minority men represent a dis- results. While some have found that lesbian proportionate percentage—perhaps as high as women suffer from lower levels of body dissatis- 42 %—of men seeking treatment for eating dis- faction and eating disorders, others have found orders. The reasons for this disparity are not no difference in eating disorder prevalence [40 ]. entirely clear, although a sociocultural explana- In their study on women’s mental health, Koh tion has been proposed which suggests that men and Ross found that lesbian women were signifi - may feel pressure to obtain a lean physique in cantly less likely than either straight or bisexual order to attract a male partner, as men tend to women to want to lose weight [25 ]. Nevertheless, emphasize physical appearance when selecting lesbian women were slightly more likely than mates [42 ]. This theory receives support from the straight women to have an eating disorder. In fact that being in a stable relationship seems to be contrast, bisexual women were twice as likely to a protective factor for restrictive disordered eat- have or have had an eating disorder compared ing in sexual minority men [43 ], while attending with lesbian women. a gay recreational group increases risk [40 ]. There are no solid data regarding the preva- In most studies, same-sex orientation is asso- lence of eating disorders among transgender and ciated with increased male body dissatisfaction, gender non-conforming adults. body image distortions, fear of being fat, and drive for thinness. Gay men are also more likely than heterosexual men to hold distorted cogni- Substance Use Disorders tions about the importance of having an ideal physique [44 ]. Ironically, at the same time that Sexual orientation and gender identity minorities gay men are striving to be lean, they are also experience elevated rates of substance use disor- beset with fears of being too skinny, a condition ders, although the risk is fairly specifi c to each termed “muscle dysmorphia.” Evidence suggests substance and each sub-population. that gay men aspire to a more muscular body Intersectionality of identity plays a signifi cant ideal than do heterosexual men [45 ]. This muscu- but nuanced role; for example, sexual minority lar ideal may have developed in response to wast- women of color may have greater risks than ing observed in gay men suffering during the either heterosexual women of color and or white early days of the AIDS epidemic, although the lesbian women and bisexual women. Sexual idealization of a hyper-masculine body type cer- minority men of color, on the other hand, appear tainly predates this period. Compared to other to face lower risk than white gay and bisexual forms of body dysmorphic disorder, muscle dys- men [48 ]. 210 C.M. Palmer and M.B. Leslie

Tobacco use in general, and smoking in amphetamine use [53 ]. It is also known that particular, represents a major health hazard desperation drives some transgender individuals within the LGBT community. A systematic to seek black market gender affi rmation treat- review paper found that gay men appear to have ments, including hormones of dubious prove- between 1.1 and 2.4 times the odds of smoking nance and quality [54 ]. compared to straight men. Lesbian women have There is evidence that LGBT-specifi c sub- between 1.2 and 2.0 times the odds of smoking stance abuse treatment programs may demon- compared to straight women. Younger women strate greater effectiveness than treatment as smoke more than older women; researchers specu- usual [55 ]. late that the younger women are more likely to socialize in bars, which might explain the difference. Bisexual women have the very highest rate Personality Disorders of tobacco use—approaching 40 %—of any sexuality minority group. Almost no data exists regard- Personality disorders describe a relatively infl ex- ing the rate of nicotine use among transgender ible and maladaptive pattern of thinking and and gender non-conforming people [49 , 50 ]. feeling about oneself and others that signifi cantly With regards to alcohol, multiple studies sug- and adversely affects how an individual func- gest that lesbian women face a markedly tions in many aspects of life. Volumes have been increased risk of developing alcohol use disorder, written discussing the etiology of personality with a lifetime prevalence that ranges from about disorders. At this point, most experts would con- three to six times that of heterosexual women. cur that personality disorders result from a mix- Minority sexual orientation conveys a smaller ture of genetic and environmental factors, risk for men; the odds ratio of alcohol depen- including subtle differences in underlying neuro- dence for gay men (vs. heterosexual men) ranges anatomy and brain function, inborn tempera- from about 1.25 to 2 [25 , 24 , 51]. Further research ment, early attachment patterns, and life is needed regarding the prevalence of alcohol use experiences. among transgender and gender non-conforming There exists only a modicum of data describ- individuals. ing the frequency and nature of personality disor- Studies suggest that gay men and lesbian ders among people with minority sexual women both experience elevated risks of illicit orientations and gender identities. Historically, substance use [51 ]. While different studies dem- people with personality disorders were viewed onstrate varying fi ndings, a meta-analytic review with clinical hopelessness and treated with dis- suggests a relative risk of 2.41 for gay or bisexual dain. While strong evidence now suggests that men and 3.50 for lesbian or bisexual women personality disorders respond to treatment and compared with heterosexual peers [ 24 ]. In gen- can improve over time, clinical bias persists. eral, bisexuality is associated with a higher risk Given the health disparities and clinical bias suf- than same-sex orientation [26 ]. In general, LGBT fered by LGBT people, any research on the inter- individuals are much more likely than heterosex- section of personality disorders and sexual ual, cis-gendered people to abuse methamphet- orientation/gender identity must be evaluated amine and cocaine or crack [52 ]. thoughtfully from the perspective of potential Relatively little is known about the substance bias. LGBT people with personality disorders are use behaviors of transgender and gender non- a doubly marginalized population. conforming individuals, as national substance A number of studies in the late 1980s and use surveillance systems and epidemiological early 1990s examined the sexual orientations of surveys predominantly assume that all partici- men and women with diagnosed borderline per- pants are cis-gender. Transgender women do sonality disorder (BPD). In general, these studies appear more likely than trans-men or cis- found elevated rates of homosexual or bisexual gendered individuals to endorse primary meth- orientation, with a markedly larger effect 13 Adult Mental Health 211 observed in men than in women. Using a variety tity issues (commonly faced by LGBT people), of study designs (including chart review and and clinician bias. Individuals struggling through interview-based methodologies) in a variety of the process of coming out experience a transfor- settings (inpatient and outpatient), authors have mation in their core identity, but this is by no found rates of homosexual orientation among means synonymous with borderline identity borderline men ranging from approximately instability. Some have argued that possessing a 16 % [56 , 57 ] to approximately 50 % [58 , 59 ]. homosexual orientation in a heteronormative Rates of same-sex attraction among borderline society could increase identity confl ict and sup- women ranged from 1 % [ 56] to approximately port the increased prevalence of BPD among 15 % [59 , 58 ]. LGBT people. It is also possible that LGBT peo- A more thorough assessment of the relation- ple, particularly gay and bisexual men, might be ship between sexual orientation and borderline exposed to traumatic stressors that have been personality disorder was published in 2008 from linked to BPD in women [ 63]. Still others ques- the data set of the McLean Study of Adult tion whether the apparent increased prevalence of Development. Subjects with BPD were about BPD in gay and bisexual men primarily refl ects twice as likely as comparison subjects to report diagnostic bias among clinicians. Evidence sug- either homosexual/bisexual orientation or inti- gests that clinicians are more likely to diagnosis mate same-sex relationships. Somewhat surpris- identical symptoms as BPD in women than in ingly, gender did not signifi cantly affect sexual men; perhaps this bias is extended to gay or orientation; 29.8 % of men and 26.6 % of women bisexual men if they are perceived as being femi- with BPD reported homosexuality/bisexuality, a nine or violating heteronormative masculine ide- non-signifi cant difference. People with BPD were als. A recent study explored the impact of three times more likely than comparison subjects clinician perspective on the complex diagnostic to report changing the gender of intimate part- matrix of personality and sexuality/gender ners, but not their own sexual orientation, during identity using a hypothetical case with a patient the follow-up period. The authors concluded that whose problems resembled BPD symptoms but same-gender attraction and intimate relationship were also consistent with a sexual identity crisis. choice is an important interpersonal issue for a The authors found an effect of sexual orientation signifi cant minority of borderline men and women for male clients, but not female clients. Male cli- [ 60 ]. Subsequent authors have found a similar ents whom therapists perceived likely to be gay frequency of minority sexual orientations among or bisexual were more likely to be diagnosed women with confi rmed diagnoses of BPD [61 ]. with BPD. Therapists were more confi dent and Cluster C personality disorders do not appear willing to work with female clients and gave to occur with signifi cantly different frequencies them a better prognosis [64 ]. among sexual orientation or gender identity The relationship between minority gender minorities [27 ]. identity and personality disorders has received While the co-occurrence of personality and little rigorous evaluation. The challenges of substance use disorders is common regardless growing up in a transphobic society and experi- of sexual orientation, borderline personality ences of trauma might contribute to an increased disorder, obsessive-compulsive personality dis- prevalence of borderline symptomatology among order, and avoidant personality disorder appear gender non-conforming and transgender commu- to be two to three times more common among nities, although this has not yet been demon- people with minority sexual orientations receiv- strated beyond the level of conjecture. One study ing addiction treatment than their heterosexual exploring the frequency of gender dysphoria peers [62 ]. among women with confi rmed BPD found no A few recent studies have explored the matrix signifi cant difference from women in a diagnosti- of core identity instability (often postulated as a cally heterogeneous clinical control group. The core aspect of BPD), sexuality and gender iden- authors conclude that frank gender dysphoria is 212 C.M. Palmer and M.B. Leslie not a particular salient aspect of the identity short in many ways, as it is not intended to be a issues with which female patients with BPD compendium on all of the different types of rela- struggle [61 ]. tionships and the ways in which they might be unique for our community. Some of the information included may seem pretty basic for anyone Relationships involved with the LGBT community. It is included here for those medical professionals Why discuss relationships in the mental health who may not be familiar with some aspects of the section? As has been written in so many other community, in the hopes that this will make them books and publications over the past 100 years, aware of common themes and issues in the LGBT it’s not due to the assumption that all same-sex community. Hopefully, this will enhance their couple relationships are pathological, or that our cultural competence so that they can be more relationships with our mothers “caused” us to be effective as healthcare practitioners. Although this way. It’s also not due to the assumption that there is a signifi cant amount of research on the LGBT people don’t have normal, healthy rela- correlation of relationships and health, much of it tionships. Obviously, these assumptions are has been done with the heterosexual population. incorrect as will be discussed. However, there This section will review some of this literature, can be challenges in same-sex couple relation- making the assumption that the effects seen in the ships and also in the way that families and friends heterosexual community are likely to be seen in relate to LGBT people, and vice versa. People the LGBT community. When possible, however, who are struggling with their sexual identity may research that is specifi c to our community will be have profound problems with relationships, included and reviewed. Finally, some of the sometimes living secret lives and feeling com- unique aspects of relationships for the LGBT pletely alone because no one knows. The gay and community will be discussed as a basis for under- lesbian communities have their own unique iden- standing some of the challenges and opportunities tities, which in many ways affect friendships, facing our community, and to provide a frame- romantic relationships, and sexual relationships. work of topics for possible discussion between But again, why is this important? It’s important patients and healthcare workers. because relationships, both sexual and non- sexual, can have a profound impact on mental health, and also physical health. Additionally, Relationships and Health mental health problems, in turn, can have a profound impact on relationships and their stability. Throughout history, fi nding or experiencing As discussed, the LGBT communities have romantic love has often been associated with higher rates of many psychiatric and psychologi- happiness, and unrequited love and isolation have cal problems, which in turn may adversely affect often been associated with depression and relationships. Finally, some sexual behaviors, despair. So for most people, it seems simply intu- such as having multiple sexual partners (often itive that relationships, especially sexual and labeled “promiscuity”), can be seen as a sign of romantic ones, are correlated with happiness or mental illness, such as Bipolar Disorder or a “sex depression. Most people assume that it is a sim- addiction.” It’s important to discuss some cultural ple cause and effect relationship, meaning that differences between the LGBT community from good relationships lead to happiness, and bad the heterosexual community in order to inform relationships or the absence of a relationship thinking about these behaviors as either a “symp- leads to depression. tom” or simply a cultural difference. Over the past 100 years, there has been much Entire books have been written on all of the research on the correlation between relation- nuances of relationships in the LGBT commu- ships, especially marriage, and both physical and nity. Therefore, this section will undoubtedly fall mental health. It is thought that close relation- 13 Adult Mental Health 213 ships and/or enhanced social networks have ben- with an effect size similar to that of adjuvant che- efi cial effects on stress response, immune system motherapy [73 ]. DeKlyen et al. [74 ] looked at functioning, cardiovascular reactivity, blood new, heterosexual parents in the Fragile Families pressure, infl ammation, and other factors [ 65 ]. and Child Wellbeing Study and compared those Some of the earliest research in this area began in that were married, cohabiting, not cohabiting but 1890, when the National Center for Health romantically involved, and not romantically Statistics began publishing reports on mortality involved to see if there were differences in mental based on marital status, and numerous subse- health and behavioral problems among the quent studies based on this data found that mar- groups. They found that married people had the ried people, independent of race or gender, lived lowest rate of mental health problems and that longer on average than those who were single, the prevalence increased in the groups in the fol- widowed, or divorced [ 66 ]. Abel-Smith and lowing order: those who were cohabiting; those Titmuss [67 ] looked at data from England and who were romantically involved, but not cohabit- found that those that were married utilized health ing; and those who were not romantically services less frequently than those who were not. involved. This study suggests that the level of Pollack [68 ] reviewed the literature on marriage commitment, or at least the frequency of contact status and mental health service utilization and in a romantic relationship, effects mental health concluded the following: “The relationship status. Hughes and Waite [75 ] looked at marital between marital status and mental disorders has biography and health in mid-life. They found that been extensively studied over the years. In the marriage protected against a variety of health large number of studies that have measured the conditions, and that marriage disruption (divorce rate at which persons in specifi c marital status or death) damages health, with the effects still categories have come under psychiatric care, the evident years later. patterns have been remarkably similar. The rate Most people assume from the above refer- for married persons has been consistently the enced studies that close relationships lead to lowest, while the rates for separated and divorced improved physical and mental health. However, persons have been the highest, with rates for sin- the above studies simply show a correlation, and gle and widowed persons somewhere between as commonly known, correlation does not neces- these extremes.” The French sociologist, Emile sarily confi rm causation. Two studies call into Durkheim, was one of the fi rst people to study question this cause and effect relationship. The and report on the correlation of social relation- fi rst study [76 ] looked at 5877 individuals who ships and mortality from a specifi c cause: sui- completed questionnaires about the age of onset cide. In his book, Suicide: A Study in Sociology of 14 DSM-III-R lifetime diagnoses and the ages [69 ], he reported that those who were not married of fi rst marriage and divorce, and then created or didn’t have children were more likely to com- survival models for the marriages based on pre- mit suicide than those who were married or had existing psychiatric diagnoses. This study found children. In recent years, the research has contin- that people with psychiatric disorders are more ued to look at marital status, but has also focused likely to get a divorce and that they remain mar- on more inclusive forms of social connections. It ried for a shorter period of time than those who has been shown that the more close relationships don’t have a psychiatric diagnosis. The second a person has, the less likely they are to get a com- study looked at over 46,000 people from 19 mon cold or have symptoms of infection [70 ]. countries and analyzed the effect of 18 different Being married and/or having a close confi dant psychiatric disorders on probability of getting has been shown to decrease cardiac mortality married or staying married [77 ]. They found that compared to individuals who have neither of 14 of the 18 mental disorders studied were asso- these [ 71 , 72]. In a large study looking at over 1.2 ciated with a lower likelihood of ever getting million cancer patients, being married was found married, and that all 18 disorders were associated to increase the chances of survival from cancer, with a greater risk of divorce. Therefore, in the 214 C.M. Palmer and M.B. Leslie prior correlational studies, it’s not surprising that thoughts when one is aroused, but also feelings of people who were divorced had higher rates of love, intimacy, and connection. It includes innu- psychiatric diagnoses. It may be that psychiatric merable aspects of how a person relates to the disorders lead to divorce as opposed to the other world and his/her own body. Gender non- way around. conformity not only applies to transgender youth, In the end, although the distinction of cause but oftentimes to LGB youth as well. Gay boys and effect is unclear, what is clear is that intimate may want to cross their legs “like a girl.” Lesbian relationships and strong friendships are impor- girls may feel uncomfortable wearing a dress. tant to both physical and mental health, whether For transgender youth, the differences are much they directly cause the improvement in health, or greater and pervade seemingly every aspect of whether they are simply an indication or “symp- life. Yet, most of these youth will try desperately tom” of health. It may be that this is simply a to hide their differences. They become hyper- positive feedback cycle, whereby they are both aware of what others might perceive, fearing that continuously infl uencing each other. if they don’t keep up their guard, they will be Much of the research cited above refers to exposed. It includes innumerable day-to-day marriage, which until only recently was not an experiences: the way they talk, the way the walk, option for many in the LGBT community. Within glances at other people, pausing to look at a pic- the LGBT communities, some feel passionately ture in a magazine, fear that the way they throw a that marriage is a “heterosexist” institution, and ball may give them away, fear that wearing a cer- would prefer to have nothing to do with it. Others tain colored shirt may be “too feminine,” etc. feel that it has been used to oppress women, or When they feel that someone may have seen oppress people’s normal sex drives and behav- something that might expose them, they can go iors. In the end, it’s very likely that marriage, as into a panic: fearing shame, humiliation, disgust, commonly defi ned in Western societies, is not or rejection. This experience often leads an indi- what is healing, but that close relationships, vidual to feel completely isolated, terrifi ed, and whether in the context of a marriage or not, are ashamed. These youth often distance themselves what heal, or at least are correlated with health. from others, including their families of origin, for The discussion so far has illustrated why rela- fear of exposure. Despite their desperate loneli- tionships, both sexual and non-sexual, are impor- ness and longing for connection, they feel com- tant to mental and physical health. This section pelled to push people away, or at least keep some will now delve into some of the ways that rela- distance, usually because they feel certain that tionships for LGBT people can be affected by they will be rejected if they allow people to get issues that are specifi c to our community. close to them. This process just adds to the feelings of guilt and shame, as they can’t explain to their friends and loved ones why they are distanc- Relationships with Families of Origin ing themselves. For many, the perceived rejection extends to God as well. So oftentimes, LGBT There can be many issues for LGBT people in youth may feel there is truly nowhere to turn for how they relate to their families of origin, given help. Some will go to great lengths to “make up” that their “difference” is often initially hidden, for these perceived defi ciencies. They will try to and many families, religions, and cultures have at be “perfect” in other ways. They may work hard least some degree of homophobia and transpho- in school, and sometimes put unreasonable bia. Most LGBT youth feel forced to keep their expectations on themselves. They may immerse difference private or secret, at least for a period of themselves into sports, and be devastated with time. The “difference” is almost always much losses. They may try to look perfect by dieting, more than just sexual attraction. It can feel all- working out, or dressing impeccably. They may encompassing to a person’s existence, and in try anything to make themselves “lovable.” Even many ways, it is. It includes not only sexual though these youth may be loved, they oftentimes 13 Adult Mental Health 215 don’t believe it. The mental health consequences opportunity for individuals to grow. They can of years of this experience are undeniable— consider their beliefs and values as adolescents or higher rates of depression, suicide, substance adults, with more knowledge and life experience abuse, etc. Sadly, these core beliefs can be than they had as children. However, problems can ingrained in a person for life. Even after coming occur when individuals end up feeling com- out, some people continue to have a deep-seated pletely disconnected from their past life and the fear that they are unlovable, and this can affect people who were part of it. In extreme cases, they their relationships for decades. Even when they may be “disowned” by their family of origin, or rationally know that their difference doesn’t they may “disown” or “disconnect” from them. make them any less worthy or lovable than oth- This can sometimes leave a person feeling ers, these beliefs may crop up again years later, uprooted, lost, and alone. especially during times of stress or diffi culty. In addition to the innumerable problems Even after coming out, problems can persist encountered by LGBT individuals, the family with families of origin. In many ways, coming members themselves often have diffi culty adjust- out involves a whole process of learning about ing to the individual who comes out. Just as the and acclimating to a new culture: the specifi c individuals may have needed time to accept LGBT culture in which one comes out. Although themselves and integrate this information with there are innumerable variations, there are almost everything else they have been taught and always differences from the culture in which one believed to be true, the family members may also was raised. In many ways, this is exciting and need time. Many can experience depression, freeing, allowing the individual to fi nally be him- anger, disbelief, and other complicated feelings self or herself, oftentimes for the fi rst time. In in response to learning of their family member’s other ways, it can be confusing, disorienting, and sexual orientation or gender identity. Many par- disheartening, as some people may feel they ents describe a period of mourning, feeling that don’t belong, or may miss some of the aspects of they have “lost” the child they thought they had their prior life and relationships. They may fear known. An important consideration is referral of that the people in their life up to that point will family members to support groups, such as judge them, or simply not understand. Many Parents, Families, and Friends of Lesbian women LGBT people fear discussing sexual issues and Gays (PFLAG) or mental health services, openly with friends or family. Even when they given that acceptance by family members has a do, the support they receive is sometimes not signifi cant, benefi cial effect on reducing depres- seen as helpful as it is by heterosexuals. Friedman sion and suicide in LGBT individuals [79 ]. and Morgan [78 ] interviewed 229 college women about times when they went to friends or parents for issues related to their sexuality. Interestingly, Friends they did not fi nd a difference in how often sexual- minority women and heterosexual women sought For some in the LGBT community, there are no support from friends or parents, but they did fi nd differences in friendships compared to their het- that sexual-minority women perceived both par- erosexual counterparts. Friends may come from a ents and friends’ responses as less helpful than variety of sources, such as school, work, neigh- did heterosexual participants. borhood, or other acquaintances, without regard A signifi cant challenge for many LGBT peo- to sexual orientation, gender identity, or other ple, therefore, is the ability to integrate their life factors. However, for most in the LGBT commu- with their family of origin and the values of their nity, there is often a need or comfort in being upbringing. After many people come out, there is with people who are similar. Many people fear a period of questioning some of the values they judgment or discomfort from the heterosexual were taught as children, particularly religious community regarding their differences, or they beliefs. In many ways, this can be a wonderful just prefer to be with people who have similar 216 C.M. Palmer and M.B. Leslie experiences. It can be comforting to share com- lar to themselves. Consistent with this theme, in mon experiences. It can be helpful to get advice the heterosexual community, heterosexual or feedback from people who are in a similar women tend to choose friends who are also het- position, whether it’s advice about dating, sex, erosexual women, and heterosexual men tend to coming out to people at work, or other issues. It choose friends who are heterosexual men [83 ]. can be helpful to talk about stigma and experi- One of the things that differentiates patterns of ences of discrimination with people who under- friendships in the heterosexual community from stand, and may have had similar experiences. So those in the LGB community is that same-sex for many in the LGBT community, they seek out friends are also potential sexual partners in the a group of friends who are similar to themselves: LGB community. One question that sometimes gay men tend to seek a group of gay male friends, arises in these friendships is whether there is sex- lesbian women tend to seek a group of lesbian ual tension in the friendship, and whether the two friends, M-F trans may seek a similar group, etc. people can remain “just friends.” This same issue While none of these tendencies is absolute, and comes up in the heterosexual community when a almost all people in all groups have friends that man and a woman develop a friendship, and can are exceptions to these trends, the trends do often be a source of concern for a partner or sig- appear to be real. Galupo [ 80] interviewed het- nifi cant other. Surprisingly, little, if any, research erosexual, gay, lesbian, and bisexual people has been done in this area for gay men and les- about their friendships and found that “hetero- bian women, but research has been done in the sexual women and men primarily developed heterosexual community. Kaplan and Keys [84 ] friendships of similarity, with relatively few looked at heterosexuals in cross-sex friendships friendships experienced in a cross-orientation and found that 58 % of them reported some (5.50 %), cross-sex (28.06 %), or cross-race degree of sexual attraction to each other. Afi fi and (17.11 %) contexts. In contrast, bisexual women Faulkner [85 ] looked at heterosexual, cross-sex and men reported more cross-orientation friendships in college students and found that (79.55 %), cross-sex (32.99 %), and cross-race approximately half of them had included sexual (23.13 %) friendships. Likewise, lesbian women contact at some point in an otherwise platonic and gay men reported cross-orientation (53.03 %) friendship. cross-sex (23.73 %), and cross-race (25.77 %) When there is sexual attraction or tension in a friendships.” Although the LGB people had more platonic friendship, there are some debates about diversity in their friendships, it’s actually some- whether this is a benefi t or burden. Some argue what surprising that in this sample of gay men that it adds spice to the relationship and makes it and lesbian women, 47 % reported that they did more stimulating and enjoyable, even if sexual not have any heterosexual friends and, overall, activity is never included. Others argue that it they had fewer cross-sex friends than the hetero- may result in feelings of longing, jealousy, or sexuals did. Nardi [81 ] found that 82 % of gay depression. Belske-Rechek et al. [86 ] tried to men reported that their “best friend” was another answer this question by interviewing heterosex- gay or bisexual man. This is consistent with ual adults aged 18–55 who had at least one cross- research that suggests that many people, not just sex friendship. Although most respondents in the LGBT community, choose friends who reported more benefi ts than costs to the relation- share similar attitudes, beliefs, and health behav- ships overall, they more commonly reported that iors. Bahns et al. [ 82] looked at college students sexual attraction was a cost more than a benefi t, at large and small campuses and, interestingly, often causing problems with their current roman- found this to be the case especially when people tic partner, such as jealousy. Those who reported have a larger and more diverse pool of people attraction to a current cross-sex friend reported from which to choose friends. In other words, less satisfaction with their current romantic rela- when people have more choices of potential tionships. Although no research has been pub- friends, they tend to choose people who are simi- lished in this area that is specifi c to the LGBT 13 Adult Mental Health 217 community, it is not diffi cult to imagine that fronts: jealous that he/she can’t have you, jealous some of these issues may also be relevant. that he/she doesn’t have a signifi cant other and Although there is no published data on friend- now you do, jealous of the new signifi cant other ships in the LGBT communities and how often and wanting him or her for self, or jealous, afraid, there is sexual attraction or sexual activity or resentful that now you will be less available as between friends, anecdotal experience suggests a friend because you will be spending more time that these things are certainly not uncommon. with the new love and less time with him/her. Many gay and lesbian friendships begin because Again, these are not universal rules that apply to at least one person is sexually attracted to the all LGBT friendships, and are much less relevant other. It may be the reason they initially approach to LGBT people who are in stable, long-term the person at a club or party. Oftentimes, the relationships. But they can occur, and they can other person isn’t interested in a sexual relation- have effects on the stability of new relationships ship, so they pursue a friendship instead. and on the support that LGBT people feel from Sometimes, they date fi rst, come to realize that their social network for their romantic relation- they aren’t a match for a romantic relationship, ships. Given that stability of relationships and but make great friends. Other times, one person is social networks are important to health, these already involved with someone else, so they pur- issues are at least worth keeping in mind and sue a friendship instead. Many times, these lead exploring with patients when appropriate. to fantastic friendships without complications One unique type of friendship in the gay com- that can last a lifetime. However, the attraction munity is the friendship between a gay man and a can sometimes lead to complications or strains in heterosexual woman. Popular media has high- the relationship. The person who is attracted to lighted examples of such friendships in television the other may experience the dysphoria and frus- shows such as “Will and Grace” and “Sex and the tration of unrequited love. They may spend years City.” A unique aspect of these friendships is that in the friendship hoping the other person’s feel- both friends know that sex is unlikely to occur in ings will change. The recipient of the attraction the relationship, and they are not competing for may feel guilty or sad about the other person’s the same sexual partners. This sets this type of hurt, oftentimes knowing about the unspoken relationship apart from many others. Some small attraction. If either one is dating or has a partner, studies have been done with these heterosexual the partner may become jealous and question the women (sometimes referred to as “fag hags” or motivations of the friendship. Additionally, when “fruit fl ies”) and the gay men with whom they are trouble arises with a romantic partner or new dat- friends to discern what is unique and advanta- ing relationship, the person may naturally want to geous about these friendships. Many of these discuss this with others, including a friend who women feel that gay men provide attention to happens to be sexually attracted. This is where it them that heterosexual men don’t provide [87 – can sometimes get complicated, as the friend 89]. They report feeling valued for their personal- may give advice that is at least somewhat biased ity, as opposed to their sexuality or their body, by his or her own feelings. For example, the when they are with their gay friends. Grigoriou friend may feel that the other friend deserves bet- [ 88 ] in her 2004 paper, “Friendship between gay ter and should move on to another relationship, men and heterosexual women: An interpretive instead of supporting the friend to work through phenomenological analysis,” described how relationship issues with the partner. The friend many women feel a sense of honesty and safety may also see it as the opportunity he/she has been when interacting with their gay male friends, as waiting for to fi nally be together romantically. opposed to their women friends or heterosexual The friend may undermine new romantic rela- males. She also interviewed gay men about their tionships by not being as supportive as possible, perspectives on these friendships, and found that or insinuating again that the person could do bet- many of them found these friends to be par- ter. This can occur due to jealousy on many ticularly trustworthy sources of information and 218 C.M. Palmer and M.B. Leslie support, especially regarding dating and relation- eral friends with benefi ts as way of life. And ship advice. Some of these gay men clearly some may be in long-term, committed relation- favored the friendships they had with heterosex- ships that are not monogamous, and may feel ual women over friendships with other gay men. these friendships are a safer and more comfort- “Some participants talked about pretence, sar- able way to “play” outside of their primary rela- casm and ‘bitchiness’ in the gay world and they tionship. These are just some of the innumerable described their friendships with other gay men as reasons that people may choose to pursue sexual affected by these characteristics.” Russell et al. friendships. While some people can have several [90 ] interviewed gay men and straight women of these friendships without complications, it is about these friendships. They also found that probably more common to fi nd that these rela- straight women perceived dating advice from a tionships often include some degree of complica- gay man to be more trustworthy than similar tion. Sometimes someone wants more at the advice offered by a straight man or woman, and outset, but feels this is all that is being offered. Or found that gay men perceived dating advice feelings may change and grow stronger as the offered by a straight woman to be more trustwor- friendship and intimacy progress. Sometimes, thy than advice offered by a lesbian woman or someone moves on to another friend or relation- another gay man. ship, leaving the other person hurt. Sometimes, Friendships in the LGBT community can people’s interest in the sexual component of the sometimes include sex and other forms of physi- friendship simply wanes, and they want less sex cal intimacy. “Friends with benefi ts” and “fuck or less contact. Sometimes, there isn’t open com- buddies” are two common terms used to describe munication about the other people that are friendships that include sex on a regular basis, involved, and people may feel betrayed or get with the former term implying more emphasis on hurt. In the end, it’s important that the two friends the friendship and less on the sex, and the latter communicate openly about their desires and term implying more emphasis on the sex, and less expectations, and the way these are changing and on the friendship, or sometimes not including evolving over time. Needless to say, this is easier friendship at all, but just a regular sexual partner said than done. Given the high degree of judg- without commitment. These are usually distin- ment from friends and families about such rela- guished from “dating,” which usually implies the tionships, many people often fi nd that they don’t pursuit of a more serious relationship. Certainly, have as many sources of support for discussing these sexual friendships can be seen in the het- these relationships. Therefore, it’s important for erosexual community as well, but they appear to medical practitioners to be aware of these types be much more common in the LGBT communi- of relationships and ask about them overtly in ties. As a healthcare practitioner, it’s important order to let the patient know that you are open to not to make automatic judgments, moral or other- discussing them without judgment. wise, about these relationships. For some, it’s a In addition to friendships that include sex, it is way to express love or affection for a friend, increasingly common for LGBT friends to while acknowledging that the relationship is express physical affection without the expecta- unlikely to progress into a long-term relationship. tion of sex or the feeling of any boundary viola- Others may seek out such relationships while tion with their romantic partners. This is they are still looking for a longer-term relation- commonly seen in dance clubs, where friends ship, feeling that it’s safer and more comfortable might kiss or “make out” with each other, or to have a regular, sexual partner who is also a “dirty dance” with each other, but without any friend, as opposed to random strangers. It may expectation of sex or anything other than friend- also be a way to feel connected to someone in a ship outside of the club. This can be seen among more meaningful way and deal with loneliness. and between lesbian women and gay men, and Some may have given up on the idea of a long- also between gay men and their heterosexual, term, committed relationship and may have sev- female friends. While, in theory, it could also 13 Adult Mental Health 219 include heterosexual men, this appears to be There are evolutionary theories that support much less common. For many, it’s a fun way to the role of monogamy in order to maximize sur- celebrate the night and let loose. Many people vival of offspring. There are many obvious can do this without complication, but again, for advantages to having two parents over one— some, there can be unspoken desires or feelings. while one is protecting and nurturing the chil- The other friends present may suspect that more dren, the other can hunt or gather food, for might be occurring outside of the club. Or they instance. This is not restricted to humans, either. may get jealous that one of the friends isn’t doing There are at least 11 other animal species that the same thing with them. Some romantic part- engage in monogamous pairing: swans, pen- ners may become jealous if they witness it or hear guins, black vultures, French angelfi sh, wolves, about it, or question the stability of the relation- albatrosses, termites, prairie voles, turtle doves, ship, but other partners may simply accept it as schistosoma mansoni worms, and bald eagles. part of the culture . Some of these species are monogamous with their mate for life, while others are serially monogamous. Gibbons, once thought to be Monogamy, or Not monogamous, remain together for life to raise offspring, but will have sex outside of the rela- Before discussing the topics of dating and long- tionship. Looking at this list of species, one can term, committed relationships, it’s important to see that it includes not only primates, but also address the issue of monogamy, as this can be a some relatively simple organisms, such as worms. contentious and controversial topic. It is often Therefore, it suggests that there are primitive used to stigmatize gay male sexual behavior. brain regions or other regulatory mechanisms There are people who hold passionate positions that control sexual mating and lead some organ- on both sides of the issue. Many gay men have isms to be monogamous. Many scientists are argued for decades that monogamy is a hetero- studying these animals to learn more about sexist, Christian-based ideal that is not relevant to mating behaviors. Even though most people the gay community. Given that the Christian- aren’t thinking about raising children at the same right has a long history of attacking the LGBT time that they are having sex, these biological community, while also pursuing an agenda of drives are almost certainly infl uencing sexual promoting monogamy, it’s not diffi cult to see behavior and feelings. Given the strong urge in how these messages could be paired with each many humans for monogamy, it’s not diffi cult to other, and both could be seen as undesirable. imagine that, at least for these particular individ- Society also has a long history of instilling guilt uals, that it might be a biological drive, as and shame on the gay community for any sexual opposed to religious or cultural upbringing, that behavior, so most of us have had to work hard to is guiding their desire for monogamy. detach ourselves from these value systems, and However, most animals do not have monoga- create something on our own. For some, the way mous mating patterns [91 ], so it’s plausible that out of the model of ‘guilt and shame for any sex- humans also may not be inherently monogamous. ual behavior’ is ‘anything goes.’ While this can History is replete with examples of humans prac- work for some people, it doesn’t work for every- ticing polygamy, polyandry, and/or being unfaith- one. Some in the community feel a strong need ful to their spouses. Throughout literature as far for a long-term, committed, monogamous rela- back as Greek Mythology, a frequently described tionship. They may be searching for “the one,” or human dilemma is that of infi delity. Zeus was may feel that they’ve found him or her. The often cheating on his wife, Hera, but she was also movement for equal marriage rights for the gay incredibly jealous and rageful for each community is certainly a testament to the desire occurrence. of many in our community to engage in long- So it’s possible that some humans are biologi- term, committed, monogamous relationships. cally wired toward monogamy, and others simply 220 C.M. Palmer and M.B. Leslie are not. It’s conceivable that monogamy, like so As differences in sexual orientation are many other human, biologically-driven traits, increasingly accepted, it’s becoming more com- such as introversion versus extroversion, is some- mon and easier than ever to date openly. More thing that is expressed on a continuum, with and more LGBT people are coming out in middle some people being born with a drive to be very school and high school and begin dating at the monogamous and others with a drive to have same time as their heterosexual peers. For many multiple sexual partners. As much as many peo- of these individuals, their dating stories are simi- ple want to frame this as a moral issue, it may be lar to heterosexuals and, quite frankly, there’s not that it is neither good nor bad, it’s just the way much more to say about their stories, because people are born. This shouldn’t be confused with they are so “normal.” They involve the usual sto- lying or cheating in order to achieve having mul- ries of courtship, dating, working out relation- tiple sexual partners, which can certainly be hurt- ships, etc. Straight friends and family may get ful and unnecessary. Regardless of whether involved with advice, or helping to set them up people are inclined to practice monogamy or not, with other LGBT people they know. The dates it’s important that they fi nd partners with whom themselves can also be quite “normal,” especially they can share this information, and vice versa. in larger cities, where public displays of affection Ideally, we as a community and as healthcare between same-sex couples, such as kissing or practitioners can refrain from judging either posi- holding hands while walking down the street, is tion, realizing that monogamy is a couple’s or increasingly commonplace. So for some in the individual’s choice, or possibly biological drive. LGBT community, there are no signifi cant differences from heterosexuals regarding dating, fi nding sex, or fi nding love. Dating and Hook Ups For better or worse, this isn’t the case for the majority of LGBT people. For many, fi nding Dating? A one-night stand? A hook-up? There is dates or sexual partners is accomplished by net- a spectrum of sexual behavior and relationship- working within their LGBT social network, seek- seeking in the LGBT communities that can some- ing out places where other LGBT people go, such times be diffi cult to defi ne. At one end of the as dance clubs or bars, or using online sites or spectrum is “dating,” in which people are seeking mobile phone applications (“apps”). Again, all of a more serious relationship. This is sometimes in this can be similar to the heterosexual commu- pursuit of a long-term, committed, monogamous nity, but there are some differences that are relationship (i.e. looking for “the one”), but at important to mention. other times it’s done in pursuit of a boyfriend or One of the biggest differences is the number girlfriend, with no expectation of something of sexual partners, and the types of sexual part- monogamous or long-term. At the other end of ners, that gay men have, on average, relative to the spectrum is fi nding someone for quick sex, other groups. This applies to other groups of peo- sometimes without any conversation at all. And ple who have sex or romantic relationships with there can be everything in between—friends with gay men, including some bisexual, transgender, benefi ts, fuck buddies, sex with people you meet and queer individuals. Many people refer to hav- while on vacation, sex with an “ex,” etc. The rea- ing multiple sexual partners as “promiscuity,” son to discuss all of these types of sex and which has negative connotations and often comes romance together is because oftentimes, the two with moral judgments. Some gay men experience people may be looking for different things. For this as one of the negative aspects of gay life, example, one person may think he is going on a although others clearly celebrate this part of gay “date” and the other person thinks it’s just a culture. Why mention this? It’s not meant to “hook up,” a term commonly used to describe imply that this difference is bad or wrong. It’s one-time sex or sexual activity. also not meant to imply that this applies to all gay 13 Adult Mental Health 221 men, as it clearly does not [92 ]. But this “differ- reported that 28 % of gay men had over 1000 ence” has many health implications. It is often sexual partners in their lifetime, almost half had associated with or inter-related with the follow- over 500, another third had between 100 and 500, ing issues that can be problematic: and over 90 % had at least 25. Most of the sexual encounters were with strangers. They reported 1. It is often assumed to be pathological by many that women were more likely to be monogamous mental health professionals. than men, and that most lesbian women had 2. It sometimes puts individuals at higher risk fewer than 10 same-sex, sexual partners in their for HIV and other sexually transmitted lifetime, with little sex between strangers. The diseases. biggest criticism of this study is that it was not a 3. It is sometimes inter-related with drug and representative sample of the population; it was alcohol use. conducted only in San Francisco during the pre- HIV era, where gay clubs and bath houses were Without any guidelines or studies addressing innumerable. how to think about this issue, clinicians are left to In 1989, Fay et al. [ 97 ] re-analyzed survey make their own assessments and recommenda- data from 1970 of 1450 American men over the tions. Unfortunately, many clinicians have some age of 21 (originally done by The Kinsey Institute degree of homophobia [ 93]. This can infl uence for Sex Research) to try to determine what per- how gay sex is viewed and how “promiscuity” centage of the American population were men might be addressed. Additionally, many in the who had sex with men and the number of sexual gay community keep this information private or partners that these men reported (primarily to secret from their healthcare professionals [ 94 , estimate the impact of the AIDS epidemic). It 95 ], or even from friends in the LGBT commu- should be noted that 21 % of the surveys from nity, likely because of fear of judgment. Dating this study had incomplete or absent responses and sex can have a signifi cant impact on a per- regarding same-gender sexual contact, so the son’s mental or physical health, so should be top- researchers imputed responses and included ics of discussion, at least in some situations. these in their analyses. Looking at men who Healthcare professionals, therefore, need to be reported having sex with other men either “occa- aware of these differences so that they can initiate sionally” or “fairly often,” and having at least one conversations with their patients about these sexual contact with a man after age 20 (which issues when appropriate. would likely be an estimate of the “gay” or Although the issue of gay “promiscuity” has “bisexual” male population), they found that not been evaluated by rigorous, epidemiologic 1.9 % ( N = 28) of the sample met this criteria by studies, there are at least three signifi cant sources direct report, and after adjusting for incomplete of research that have looked at this issue. In 1967, surveys, they imputed an estimate of 3.3 % the National Institute of Mental Health estab- ( N = 48) of the sample. The small sample sizes lished a Task Force on Homosexuality, which should be noted. When looking at the number of concluded that more research on homosexuality sexual partners, they estimated that 2.1 % of the was needed, and subsequently reached out to the entire sample, or 64 % of the “gay or bisexual” Institute for Sex Research (formerly headed by men, reported fi ve or more male partners during Alfred Kinsey) to do a comprehensive study. their lifetime, and 1.2, or 36 % of the “gay or Alan Bell and Martin Weinberg led a survey bisexual” men, reported having ten or more male study of 686 gay men, 293 lesbian women, 337 sexual partners during their lifetime. Of this latter heterosexual men and 140 heterosexual women group, 4 reported 20 lifetime partners, 1 reported living in San Francisco. In 1978, they published 50, and 2 reported greater than 100 partners (8 %, the book, “Homosexualities: A Study of Diversity 2 %, and 4 % of the “gay or bisexual” population, Among Men and Women,” in which they reported respectively). The biggest limitations of this some of the fi ndings of these studies [ 96 ]. They study are that a signifi cant portion of the data 222 C.M. Palmer and M.B. Leslie

Table 13.1 Mean number of sexual partners ment to going to sleazy places in order to have Past Past Since sex with other men.” Certainly, not all of these year 5 years age 18 places were “sleazy,” and not all gay men had Men who reported 2.3 12.2 44.3 this impression of these places, but this was not same-gender partners an uncommon perception. This mindset likely since age 18 contributed to the perception of what it meant to Men who denied any 1.8 4.9 15.7 same-gender partners be gay. With the advent of the Internet and mobile since age 18 phones came new, easier ways to meet other gay Women who reported 3.8 7.6 19.7 men. Liau et al. [ 99] did a meta-analysis of stud- same-gender partners ies looking at men who had sex with men (MSM) since age 18 who were recruited “offl ine” and found that 40 % Women who denied 1.3 2.2 4.9 same-gender partners of them had used the Internet as a venue for seek- since age 18 ing sex partners. Garofalo et al. [100 ] looked at Adapted from Laumann et al. [98 ], p. 315 young MSM (ages 18–24) and found that 68 % of the sample had gone online to meet a sexual partner and 48 % of them had actually found a sexual (almost half of the “gay or bisexual” men) was partner online. Most of the young MSM report missing and “imputed” by the researchers, and using the Internet to look for longer-term rela- the sample size of “gay or bisexual” men was tionships, but are often frustrated by men who are quite small. Nonetheless, this study is often cited interested in just sex [101 ]. Internet sites, such as as evidence that Bell and Weinberg’s study was Match.com, are often used for dating. Other sites, clearly fl awed and overestimated how commonly such as ManHunt or the Craigslist personals, are gay men have multiple sexual partners. more often used for fi nding one-time, sexual A more recent survey also looked at the num- partners. Increasingly, mobile phone apps are the ber of sexual partners over a lifetime, and its fi nd- primary way that gay men meet each other. ings were reported in the book, “The Social Grindr, Scruff, and other phone apps allow gay Organization of Sexuality: Sexual Practices in men to connect with other gay men. Grindr, fi rst the United States” [ 98 ]. Over 3000 people were launched in 2009, claims they are “the world’s interviewed, of which 8.9 % of the women and largest all-male, location-based, social network” 10 % of the men reported at least some “same- and boast “over four million users in 192 coun- gender sexuality.” They calculated the mean tries” [102 ]. The Grindr app locates 100–300 number of sexual partners in the past year, the other gay men who are in close proximity to the past 5 years, and since age 18 and reported their user and are currently online. This allows gay results as follows (Table 13.1 ). men to connect with others who are also looking In this sample, heterosexual women had the for some type of immediate interaction, whether fewest number of sexual partners, followed by it’s chatting on the app, looking for dates, looking heterosexual men, followed by lesbian or bisex- to get together for sex, or sometimes looking to ual women, followed by gay or bisexual men. buy or sell drugs. So if a gay man is traveling to Where do all of these men meet each other? In another city, he can easily connect with other gay the past, gay men typically met other men, for sex men who are nearby, even staying in the same or dates, in a variety of places, some common and hotel. To many people, this is an entirely new ordinary places such as their place of work, world. It is commonly a world that is kept secret school, support groups, gay bars, or clubs, but from the heterosexual community, and from also in “seedier” places such as bath houses, rest healthcare practitioners, for fear of judgment. stops along highways, public bathrooms, etc. For According to the Centers for Disease Control some, these latter places just added to the sense [103 ], new HIV infections are highest among of shame and secrecy of being gay. One gay man 25–34 year old MSM, followed by 13–24 year summarized coming out as, “making a commit- old MSM. Between 2008 and 2010, there was a 13 Adult Mental Health 223

12 % increase in new infections in the United addiction.” Although this is not a diagnosis rec- States. Research has been done looking at online ognized in DSM-5, there are treatment groups for communications and risky sexual behavior, pri- “sex addicts” around the country for this per- marily in an effort to better understand the risk of ceived “illness.” Some view this as a consequence HIV transmission. Some research suggests that of decades of oppression and being denied the when men meet each other online as opposed to a right to marry. Some see gay men as feeling bar or club, they are more likely to report higher angry toward other gay men after having been levels of sexual risk behaviors, such as multiple treated poorly or as a sexual object, so they sim- sexual partners and inconsistent condom use ply reenact what was done to them and use other [104 – 106 ]. Research suggests that when MSM men as sex objects and nothing more. Others see meet other men online, they are more willing to it as desperate loneliness and longing for connec- express inhibited sexual desires and have a tion—“looking for love in all the wrong places,” heightened sense of trust and intimacy [107 , so to speak. There are innumerable other inter- 108]. Garafalo [ 100] found that only 53 % of pretations for this behavior. For better or worse, if young men (ages 16–24) who found sexual part- a gay man seeks mental health treatment for any ners online used condoms consistently. reason and reveals this behavior to the mental So what does all of this mean? Unfortunately, health practitioner, this sexual behavior may very this phenomenon has not been adequately studied well become a focus of treatment. It would not be or addressed by the medical community in order uncommon for a clinician to view this as a symp- to create any guidelines for clinicians to think tom of an illness that he may not have (such as about this issue regarding mental health. It has Bipolar Disorder), and inappropriately treat him been studied in efforts to reduce HIV transmis- with medication for such a disorder. The clinician sion, but these studies don’t address how to think may view it as a maladaptive way of coping with about the mental health aspects of having multi- depression, anxiety, or low self-esteem, and a ple sexual partners. Therefore, it’s up to individ- goal of treatment would be to reduce or eliminate ual clinicians to decide how to interpret having this behavior. Some clinicians have been known multiple sexual partners, and unfortunately, there to target the “hypersexuality” itself and prescribe is wide variability in how this is interpreted. high doses of antidepressants or hormonal ther- These statistics make many people uncomfort- apy, primarily to decrease libido and decrease able. They are most commonly cited by the sexual behavior [109 ]. Christian Right to vilify homosexuality. So there are numerous psychological and psy- Therefore, some in the LGBT community would chiatric explanations for having multiple sexual rather ignore these statistics, or discredit them. partners, most of which are pathological. But if However, this fails to acknowledge a phenome- the prevalence of this phenomenon is not uncom- non in our culture, one that has implications for mon in gay men, another possible explanation is relationships and both physical and mental that it is a normal, healthy part of being a gay health. Although there are no data on how mental man, at least for some. It may be that men, on health practitioners view this aspect of gay cul- average, are much less inclined to monogamy ture, anecdotal experience suggests that many and have higher libidos than women, so gay men mental health practitioners interpret having mul- are having sex more often and with more partners tiple sexual partners as pathological. It can some- than other groups. It may be that whatever causes times be seen as a symptom of Bipolar Disorder a man to be gay, whether it’s genetic, environ- or Borderline Personality Disorder, in which mental, or something else, also increases the hyper-sexuality and promiscuity can be symp- probability that he will desire multiple sexual toms. Other clinicians may see this behavior as partners. It may be that this is a learned behavior representing a psychological disturbance, search- in the gay community that just perpetuates itself, ing for something missing in their lives, or “act- and is simply a cultural, not pathological, trait. ing out” in some way. Still others will call it “sex Given the impact this behavior can have on mental 224 C.M. Palmer and M.B. Leslie and physical health, further research is certainly Supreme Court overturned all state constitutional needed to inform clinical care. amendments banning same-sex marriage, and Not all gay men are having sex with multiple upheld the right of same-sex couples to legally partners, or even having sex at all. Kanouse et al. marry throughout the country. [92 ] found that 13 % of homosexual and bisexual This revolution in equal marriage rights has men reported no sexual partners in the previous galvanized the gay rights movement in many year. Some gay men have monogamous boy- ways. Many in the LGBT community are excited friends. And some gay men, as will be discussed in to fi nally see full and complete acceptance of our the next section, are in long-term relationships. relationships by an increasing number of people What about lesbian women? Much less in our society, and to fi nally receive the same research has been done on lesbian dating and legal and fi nancial benefi ts of marriage that het- hooking up, given the dramatically lower preva- erosexuals receive. This may have long-term lence of HIV and other STD’s, which is the basis effects on our community, our ability to integrate for much of the research on gay men’s sexual our lives within society and families, and ulti- behavior. Loulan [ 110] surveyed 1566 lesbian mately the mental and physical health of our women and found that 43 % of lesbian women community. Riggle, Rostosky, and Horne [112 ] had been abstinent for a year or longer. The data looked at the effects of legally recognized rela- regarding numbers of sexual partners, as cited tionships on the well-being of gay and lesbian earlier, suggest that lesbian women typically people. They found that people in committed or have similar numbers of partners to that of het- legally recognized relationships reported less erosexuals, and that one-time sex is much less psychological distress (i.e., internalized common than is seen among gay men. The dating homophobia, depressive symptoms, and stress) world of lesbian women seems to be much more and more well-being (i.e., the presence of mean- focused on relationships than on sex, and in this ing in life) than single participants. Wight et al. way, may be more similar to that of heterosexuals [ 113 ] looked at the effects of same-sex legal and pose fewer health risks than seen in the gay marriage in California on psychological well- male population [111 ]. being in people who participated in the California Health Interview Survey. They found that same- sex married lesbian, gay, and bisexual people Long-Term Relationships were signifi cantly less distressed than lesbian, and Families gay, and bisexual people not in a legally recognized relationship and that married heterosexuals As already reviewed in the section “Relationships were signifi cantly less distressed than non- and Health”, numerous health benefi ts have been married heterosexuals. Furthermore, they found correlated with marriage, and to a lesser extent, that psychological distress was not signifi cantly co-habitation with a romantic partner. In 2001, distinguishable among same-sex married lesbian, the Netherlands was the fi rst county in the world gay, and bisexual persons; lesbian, gay, and to legally recognize same-sex marriage. In 2003, bisexual persons in registered domestic partner- the Massachusetts’ Supreme Judicial Court ruled ships; and heterosexuals. that denying same-sex couples the right to marry Sadly, the marriage rights movement has also was unconstitutional. After the court ruling, had adverse effects on our community, given same-sex couples, at least in Massachusetts, that some states went to great efforts to pass could legally marry for the fi rst time in US his- constitutional amendments banning same-sex tory beginning in 2004. Shortly thereafter, marriage, resulting in increased overt expression numerous states passed constitutional amend- of homophobia in some of these states. ments banning same-sex marriage. Over the Hatzenbuehler et al. [33 ] compared LGB people ensuing decade, however, a number of states have living in states that passed amendments to LGB followed the lead of Massachusetts and allowed people living in other states, and also to hetero- same-sex marriage. In 2015, the United States sexuals in the same states. They reported that 13 Adult Mental Health 225 psychiatric disorders, as defi ned by the changes. Participants were both partners from Diagnostic and Statistical Manual of Mental couples that were lesbian, gay, heterosexual with- Disorders, Fourth Edition (DSM-IV), increased out children, and heterosexual with children. He signifi cantly in LGB people living in states that found that relative to the other couples, lesbian banned gay marriage. They reported that mood couples had the highest levels of relationship disorders increased by 36 %, generalized anxi- quality over all assessments. The pattern of ety disorder increased by 248 %, alcohol use change in relationship quality varied by type of disorder increased by 42 %, and psychiatric couple: lesbian and gay couples showed no comorbidity increased by 36 %. These psychiatric change, those of heterosexual couples without disorders did not increase signifi cantly among children showed an early phase of accelerated LGB people living in states without constitu- decline followed by a leveling off, and those from tional amendments and they found no evidence heterosexual couples with children showed an for increases of the same magnitude among early phase of accelerated decline followed by a heterosexuals living in the states with the consti- second phase of accelerated decline. Both of tutional amendments. these studies suggest that lesbian relationships The 2010 US Census reported that there were appear to be the most harmonious. 131,729 same-sex married couple households The question of monogamy often comes up in and 514,735 same-sex unmarried partner house- regards to same-sex couples. Gay men are often holds residing in the United States, an 80 % thought to be in non-monogamous relationships. increase in the number of same-sex partner Hoff et al. [ 118 ] looked at 566 gay couples in San households since the US Census in 2000 [114 ]. Francisco and asked about their relationship sta- Given that some same-sex couples are not com- tus—monogamous, open, or discrepant. They fortable revealing their sexual orientation to the found that about half of the couples were government, it is likely that these fi gures under- monogamous and the other half had agreed to report the actual number of same-sex couple have an open relationship. Only 8 % were dis- households. Nearly 2/3 of the same-sex mar- crepant, meaning they didn’t agree. It should be riages or registered partnerships are lesbian cou- noted that the couples that reported being non- ples and 1/3 are gay male couples [115 ]. For monogamous were open with each other about many of these couples, their lives and relation- this; they presumably weren’t lying to or cheat- ships are identical to those of heterosexuals, so ing on each other. The question of monogamy in it’s the usual issues of working out problems with lesbian relationships is asked much less fre- each other, doing household chores, paying bills, quently, and unfortunately, there are no studies socializing with friends and families, etc. Are looking at this issue for lesbian relationships. there any signifi cant differences? Roisman et al. One issue that does sometimes come up for les- [116 ] tried to answer this question by conducting bian relationships is the issue of reduced sexual a study with committed gay male and lesbian frequency, or “lesbian bed death,” a term coined couples and comparing them to committed and by Drs. Pepper Schwartz and Phillip Blumstein non-committed heterosexual couples. They did in the book, American Couples: Money-Work- multiple levels of analysis of self-reports, partner Sex [119 ]. When they asked couples how often reports, laboratory observations, attachment, and they “had sex,” they found that only about 1/3 of measures of physiological reactivity during cou- lesbian women in relationships of 2 years or lon- ple interactions. In the end, they found no differ- ger had sex once a week or more, 47 % of lesbian ences between the committed same-sex couples women in long-term relationships had sex once a and the committed heterosexual couples, with month or less, but only 15 % of heterosexual cou- one exception—lesbian women were especially ples reported having sex once a week or less. effective at working together harmoniously in Subsequent studies have also found that the fre- laboratory observations. Kurdeck [117 ] followed quency of sex is lowest among lesbian couples couples over the fi rst 10 years of co-habitation to compared to other types of couples. However, evaluate the stability of the relationship and any Blair and Pukall [ 120] looked at same-sex cou- 226 C.M. Palmer and M.B. Leslie ples (both male and female) and heterosexual experience and strength underlies all effective couples and found that when the couples did have psychiatric interventions. Providers should not sex, lesbian women spent the most time on each feel daunted by the specialized mental health sexual encounter compared to the other groups. needs of LGBT patients! They argue that it’s the quality of sex that counts, As with all health care encounters, our patients not the frequency. are our best teachers. We’ve all had the uncom- Despite the increases in same-sex coupling fortable experience of feeling “caught” in our and marriage rights, the proportion of LGB peo- own ignorance about a particular patient’s situa- ple with children is decreasing [121 ]. This is tion—whether our lack of knowledge involves thought to be due to LGB people coming out ear- the medical nuances of an HIV regimen or which lier in life and, therefore, fewer of them are pronouns to use when referring to a gender non- engaging in heterosexual relationships prior to conforming spouse. It’s more comfortable to feel coming out and having children from those rela- like an “expert,” but given our diverse communi- tionships. According to responses from the 2008 ties and the explosion of specialized medical General Social Survey, 19 % of gay and bisexual knowledge, achieving a state of generalized men and 49 % of lesbian women and bisexual “expertise” represents more of an ideal than a women report having a child [122 ]. Childbearing reality. When feeling “caught” in our own igno- is substantially higher among racial and ethnic rance, it generally works best to acknowledge the minorities. While the childbearing rates are gap in our knowledge base and enlist the patient’s decreasing, the proportion of same-sex couples experience and available medical resources in a who have adopted children has nearly doubled transparent and timely manner. Patients don’t from 10 to 19 % between 2000 and 2009 [121 ]. expect us to be perfect. Overall, according to Census data, in 2000, about 63,000 same-sex couples were raising children, and in 2010, it’s up to 110,000. The Treatment Relationship These trends are exciting for the LGBT com- and the Provider’s Identity munities. If, in fact, social acceptance of our differences and our ability to engage in meaningful Any treatment interaction involves two people, relationships and connections with other people each of whom has two identities: a private, per- can be protective against mental health problems, haps unrealized, core identity and the persona these recent trends will likely help our commu- which they choose to present within the relation- nity and hopefully normalize our rates of mental ship. This extends to matters of sexual orientation health issues with the rest of the population . and gender identity. Consider the example of a male patient who has unprotected sex “on the down low” with other men but chooses to keep Assessment and Treatment this behavior a secret from his wife and family. of the LGBT Population Imagine that his PCP, on the other hand, proudly identifi es as a married lesbian woman in her pri- General Principles vate life. Perhaps both are parents, though by very different routes. Does she, either directly or indi- People with minority sexual orientations and rectly, convey her minority sexual orientation? gender identities suffer from the same types of Does he assume (based on her wedding band and psychiatric illness as do the general population, the family photos in her offi ce) that she is straight? although often at higher rates. The principles of Will this man disclose his high risk sexual behav- psychiatric care are therefore the same, regard- ior and receive the medical care that he needs? less of a particular patient’s identity. An attitude While this example is extreme, it highlights of gentle curiosity balanced with compassion for the complicated matrix of identity and disclosure a person’s suffering and respect for their that takes place within any treatment relationship. 13 Adult Mental Health 227

LGBT patients are constantly “scanning for LGBT patients who work with self-identifi ed safety,” attempting to discern whether a person is LGBT providers may fi nd useful rapport, famil- a role model, a supportive ally, a neutral fi gure, a iarity, and understanding, but the provider should moralizing critic, or a homophobic threat [123 ]. be wary of making assumptions about the patient This extends to interactions with health care pro- or over-identifying with their problems. Similarly, viders, about whom LGBT patients often feel an a concordant straight dyad may experience an apprehensive curiosity. Patients may try to allevi- easy rapport but also collude in avoiding active ate these emotions through direct inquiry, indi- issues of sexuality and gender. A straight pro- rect inquiry (such as leading questions), or vider caring for an LGBT patient may have to through direct investigation (made easier with the work to gain the patient’s trust and become more advent of the internet) [124 ]. culturally competent. Finally, LGBT providers Conversely, providers may choose to keep their need to consider that straight patients may expe- identity private or disclose it in either a direct or an rience complicated feelings (potentially includ- indirect manner. Disclosure may occur by accident ing embarrassment, guilt, discomfort, or (such as a patient reading a wedding announce- homophobia) during their interactions. ment in the newspaper). Unfortunately, there are no hard and fast rules to guide the provider in making this decision. Self-disclosure of a provider’s Coming Out identity can sometimes help patients who are struggling with coming out and would like to nor- “Coming out” or “coming out of the closet” refers malize their experience, but it comes with the risks to the process of disclosing one’s sexual orienta- of over-identifi cation and subtle boundary chal- tion and/or gender identity. Coming out is a highly lenges (in either direction). Ultimately, providers individual and uniquely personal experience must consider (1) the best interests of their patient, infl uenced by one’s personality, development, (2) their comfort with their own sexual or gender resources, family, social environment, and cul- identity, (3) their training and theoretical position, tural background. There is no single “correct” or and (4) their need for privacy vs. their wish to inte- “best” way to come out. grate various aspects of their identity (sexual, gen- The process of coming out as LGBT to one- der, personal, professional) [124 ]. self and others can be understood as a develop- The real—and perceived—identity of both mental process that proceeds through a series of patient and therapist can signifi cantly affect a milestones. There are a variety of different mod- treatment relationship. Levounis and Anson have els explaining the emergence of positive self- proposed the following matrix to highlight com- identity among people with a minority sexual mon themes involving identity that can arise in orientation or gender identity. Models of lesbian, the patient-provider dyad (Table 13.2 ). gay, and bisexual identity development generally

Table 13.2 Patient-provider dryad

LGBT patient Straight patient

LGBT Rapport Understanding provider vs. vs. over-identification shame Straight Trust Openness provider vs. vs. mistrust closure

Adapted from Levounis and Anson [124 ] 228 C.M. Palmer and M.B. Leslie include variations of the following milestone Assessment and Treatment of LGBT events: Patients

• Feeling different from peers The mental health assessment of LGBT patients is • Same-sex attractions not fundamentally different from that of non- • Questioning assumed heterosexuality LGBT patients. However, given the specifi c • Experimenting with sexual behaviors mental health risks faced by LGBT people, it is • Self-identifi cation useful to keep in mind some general principles • Disclosure and questions: • Romantic relationships • Self-acceptance and synthesis [125 ] 1. Create a welcoming practice: Consider the overall experience of LGBT patients seek- A somewhat similar model describing the ing care in your practice. Creating a safe “states of transgender emergence” has been pro- space will help patients feel comfortable posed by Arlene Ishtar Lev: and share critical information. Do you have pride symbols, “safe space” stickers, or • Awareness LGBT-themed magazines in the waiting • Seeking information/reaching out area? Are front offi ce staff trained on how to • Disclosure to signifi cant others maintain a safe and welcoming environ- • Exploration: Identity and self-labeling ment? Do you have a gender neutral bath- • Exploration: Transition issues/possible body room for trans patients? modifi cation 2. Practice forms: The paperwork that patients • Integration: Acceptance and post-transition complete can set the tone for an encounter. issues [126 ] Inclusive intake forms generally ask the following questions: Lev is careful to avoid a proscriptive model of (a) What is your gender? (options include identity formation, noting that the narrative of male, female, transgender [male to female], “woman trapped in a man’s body” (or vice-versa), transgender [female to male], gender non- while expected by many clinicians, simply rein- conforming, other, and declines to answer) forces the gender binary and does not describe the (b) What sex were you assigned at birth? actual lived experience of many transgender and (options include male, female, or some- gender non-conforming individuals [126 ]. thing else) The importance of coming out may be changing (c) What is your sexual orientation? (options over time; as homophobia and transphobia abates, include heterosexual, gay, lesbian, bisex- LGBT people may be feeling less pressure to defi ne ual, queer, other, and declines to answer) their identity or announce it publicly. This trend (d) What sex/gender are your sexual partners? towards more fl exible and nuanced patterns of iden- (Check all that apply—options include tity is particularly evident among young adults, who none, male, female, or transgender) are embracing a range of sexualities and genders 3. Language: follow the patient’s example in (including pan- sexuality and gender non-confor- using words to describe sexual orientation and mance in addition to LGBT identities) with ease and gender identity. If you are uncertain, ask frequency that often surprises older LGBT people. directly—for example, “What name would For a fortunate minority of young people, the focus you like me to use when addressing you? What has shifted from defi ning oneself in a hostile environ- pronouns would you like me to use when ment to simply being oneself in a more tolerant one. speaking about you with other providers?” 13 Adult Mental Health 229

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Andrew J. Para , Stephen E. Gee , and John A. Davis

Learning Objectives Introduction

• Describe the epidemiology of STIs in the LGBT Populations and Sexually LGBT community (PC5) Transmitted Infections • Discuss how risk for different STIs varies by sexual behavior (KP4, PC5) As mentioned elsewhere in this text, LGBT per- • List the different treatment and management sons are estimated to make up some 5–10 % of strategies for various STIs (PC5, PC6) the US population, yet are at disproportionately increased risk of many health conditions. One of the areas in which this was initially appreciated was with sexually transmitted infections (STI), particularly in men who have sex with men (MSM). For example, MSM accounted for about 50 % of all new HIV infections in 2011 [1 ]. In the same year at CDC STD Surveillance Network sites, 72 % of newly diagnosed primary and secondary syphilis was in MSM [ 2]. We begin this A. J. Para , M.D. (*) chapter with a discussion of sexual behavior and Department of Medicine , Northwestern University how to elicit appropriate information in a sexual Feinberg School of Medicine , Chicago , history. We then discuss, brieﬂ y, the limitations IL 60611 , USA presented by the literature that focuses more on e-mail: [email protected] behavior than on identity, and how identity plays S. E. Gee , M.D. a role in STI transmission via networks. The next Department of Obstetrics and Gynecology , Ohio State University College of Medicine , Columbus , major section of this chapter is a discussion of the OH 43201 , USA epidemiology, clinical presentation, treatment, e-mail: [email protected] and prevention of the key STI pathogens. The J. A. Davis , M.D., Ph.D. ﬁ nal section deals with the common clinical syn- Department of Infectious Diseases , Ohio dromes encountered in STI, including the diag- State University College of Medicine , nostic approach to each. 370 West Ninth Avenue, 155A Meiling Hall , Columbus , OH 43201 , USA One other caveat: as is evident by the refer- e-mail: [email protected] ences and discussion that follow, the literature has

© Springer International Publishing Switzerland 2016 233 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_14 234 A.J. Para et al. been dominated by STI in MSM, to the relative This man is at risk for urogenital, pharyngeal, exclusion of any other LBT populations. Where and anorectal STI acquisition. However, he is possible, we have included discussion of the extant likely exposed to different types of pathogens literature on women who have sex with women at his urogenital tract in comparison to his phar- (WSW), lesbian, bisexual, and trans populations. ynx and anorectum based on the variability of pathogens that affect WSM versus MSM. It may seem challenging and cumbersome to Sexual Behavior and STI Risk delve into the details of patients’ sexual activities but these specifi c behaviors differentiate The distinctions amongst sex, gender, and sexu- patients’ risks on an individual basis and permit ality are particularly important in the discussion appropriate risk reduction counseling and about STI and STI risk. It is imperative to note screening. It is thus important that culturally that an individual’s sexual behavior—not iden- competent providers become comfortable with tity—is the primary determinant of his or her discussing sex and sexual behaviors with all of risk of STI exposure and acquisition. Some pro- their patients. viders will make decisions about screening based either on how a patient identifi es (e.g., “Only gay patients need to be screened for Behavior Versus Sexual Orientation HIV”), or worse, based on how the provider per- ceives their identifi cation/sexual orientation The terms “MSM” and “WSW” have been widely (e.g., “Well, I wouldn’t screen him for HIV incorporated into sexual health literature because because he doesn’t seem gay”). Whether a man of their inherent objectivity in differentiating identifi es as “gay” or “straight”, it is clear that if populations of sexual minorities from their het- that man participates in unprotected receptive erosexual counterparts. This methodology was anal intercourse with another man (amongst intended to give researchers the advantage of other behaviors), there is a higher risk of acqui- generalizing a non-heterosexual population based sition of HIV, and that man should be screened solely on its members’ sexual behaviors without for HIV. The sexual history, then, should focus implicating their social variability. As stated pre- on behavior fi rst. If a clinician can clarify viously, sexual behavior is what primarily deter- patients’ specifi c sexual acts, he/she can appro- mines STI risk. However, opponents of this priately assess their potential sites of infection research model argue that this cultural stripping and pathogen exposures. inhibits effective interpretation of data associated Consider a self-identifi ed straight male who with specifi c sexual behaviors as an individual’s regularly has insertive oral and anal sex with sexual identity and behavior are intrinsically other men. These behaviors put him at risk for interconnected [3 , 4 ]. From a health care provid- urogenital STI acquisition from his male sexual er’s perspective, it is important to note that sub- partner(s) regardless of his discordant sexual populations of MSM (e.g. openly gay men versus identity. A different self-identifi ed straight male men “on the DL”) may have different social net- may have insertive and receptive oral and anal works, may engage in different specifi c sexual sex with other men. This man is thus at risk for behaviors, and, thus, may have different STI STI exposure at his pharynx and anorectum in risks. This point highlights the need for clinicians addition to his urogenital tract. Even though to assess patients’ sexual identities and behaviors both of these men identify as straight and have when taking sexual histories. Further, research sex with other men, their individual STI risks strategies that assess the variance within “MSM” are different. Now consider a self-identifi ed and “WSW” from population perspective are straight male who only participates in receptive needed so health care providers can recognize the oral and anal sex with other men but also has risks associated with specifi c sexual identities penetrative oral and vaginal sex with women. within the generalized MSM and WSW groups. 14 Sexually Transmitted Infections in LGBT Populations 235

A Discussion of Key Pathogens are dynamic, with most infected individuals mounting a robust, but ultimately ineffective Human Immunodefi ciency Virus immune response. After infection, an initial high viral load is usually brought under some level of Epidemiology control, while destruction and regeneration of Human immunodefi ciency virus (HIV), the etio- immune cells reaches a steady state. When this logic agent of the Acquired Immunodefi ciency process shifts in favor of viral replication, the Syndrome (AIDS), infects approximately 2.3 mil- immune system deteriorates and opportunistic lion people globally and 50,000 people in the infections (OIs) may ensue. In the absence of United States annually [5 , 6]. While treatment effective immune reconstitution, infections may standards and implementation differ markedly for progress unchecked, leading to morbidity and, developed versus developing nations, overall our ultimately, mortality. This process is summarized ability to treat HIV (with highly active antiretrovi- graphically in Fig. 14.1 . ral therapy, or HAART) has improved the overall Clinical manifestations depend primarily on survival of those infected with HIV. With mortal- when in the course of infection a patient is ity rates lower than incidence rates, the prevalence encountered. In the initial viremic phase (acute of HIV has increased overall, and there are an HIV), symptomatic patients often present with a estimated 35.3 million people globally, and 1.1 mononucleosis-like syndrome (fevers, general- million people in the US, living with HIV [5 , 6]. ized lymphadenopathy, occasionally with sore HIV is an infection that is disproportionately throat). However, approximately half of all indi- represented in those with barriers to access of viduals infected with HIV may be asymptomatic, health care. The largest proportion of those newly even in the acute phase of the illness [ 9 ]. In diagnosed with HIV and living with HIV overall advanced HIV disease (AIDS), symptoms such are MSM. In addition, racial/ethnic minority as fever, night sweats, weight loss, and inap- populations are overrepresented in HIV infec- petance are common. Likewise, as patients with tions. According to Centers for Disease Control advanced HIV disease are at risk for opportunis- and Prevention (CDC) data, MSM, while only tic infections, symptoms of OI may predominate, 2–5 % of the US population, accounted for 63 % based on pathogen and/or site of infection. of all new HIV infections in 2010 [7 ]. Likewise, Common clinical syndromes encountered with African-American males are infected with HIV OI in AIDS include meningitis/encephalitis, at an eightfold higher rate than white males [8 ]. pneumonia, gastroenteritis/colitis, and undiffer- The highest rate of HIV infection is currently in entiated fever. young (ages 13–24) MSM of color [8 ]. It is also important to note that accurate statis- Diagnosis tics for HIV infection are somewhat compro- The United States Preventive Services Task Force mised by barriers to testing (see Clinical (USPSTF) has issued recommendations for Presentation and Diagnosis, below). The CDC screening patients for HIV (see Table 14.1 ) [10 ]. estimates that 16 % of those currently living with The standard testing protocol includes use of an HIV in the US are unaware of their diagnosis [ 6 ]. HIV enzyme-linked immunosorbent assay There are also data to show that this fact has (ELISA) for initial screening, and then Western implications for the propagation of HIV in com- blot for confi rmatory testing. As both of these munities (see Prevention, below). rely on an immune response (antibody formation), neither is sensitive for screening for acute Clinical Presentation HIV. For acute HIV, nucleic acid testing or anti- HIV is a retrovirus that replicates in host immune gen testing would be more appropriate. Screening cells (primarily CD4+ T cells) and, as a part of may sometimes lead to an “indeterminate” result. viral replication, causes destruction of many of In such cases, though there are many causes of a those cells. HIV infection and the host response false positive ELISA (and occasionally even a 236 A.J. Para et al.

Fig. 14.1 This graph depicts the natural history of in the viral load when CD4 numbers are depleted. As HIV infection without antiretroviral therapy. Note ini- the CD4 count is depleted, patients are at increased tial surge in viral load at disease onset. Over time, the risk for opportunistic infections and certain CD count declines and there is an associated, steep rise malignancies 14 Sexually Transmitted Infections in LGBT Populations 237

Table 14.1 United States Preventive Services Task Force for maintenance of care. These are generated (USPSTF) Guidelines for screening patients for HIV and reviewed regularly by the HIV Medical Recommended Populations for Screening Association of the Infectious Diseases Society of Adolescents and adults aged 15–65 America [13 ]. Younger adolescents and older adults at increased risk for infection Prevention Pregnant women HIV prevention has been studied extensively using Populations at Higher Risk many approaches, including many behavioral and Men who have sex with men (MSM) biomedical methods. Behavioral methods (such as Active injection drug users encouraging testing, and safer sex practices) have Those who are being tested for other sexually transmitted infections (STI) been part of prevention efforts from the time the HIV transmission cycle was elucidated, though results of such efforts have been disappointing false positive Western blot), it is usually best to overall. More recently, biomedical methods, espe- repeat the testing process in a few weeks to see if cially pre-exposure prophylaxis (PrEP), have there has been evolution of an immune response. shown promising results in both rates of HIV prevention and rates of in-study adherence. One study Treatment in particular merits mention here. The iPrEx study Treatment of HIV is complex and rapidly evolv- looked at the effect of daily tenofovir/emtricitabine ing; thus, a thorough discussion of management (Truvada) in the prevention of HIV acquisition in of HIV is beyond the scope of this chapter, and MSM and transgender women (MTF) who have only key points are mentioned here. The sex with men. The study showed that PrEP reduced Department of Health and Human Services the acquisition of HIV 47 % in all those who were (DHHS) produces and maintains guidelines for assigned to receive it, and was even more effective the treatment of both HIV and opportunistic (93 %) in those who demonstrated adherence to infections associated with HIV [ 11 , 12 ]. the PrEP regimen (detectable levels of medication Guidelines for treatment as of the writing of this in the blood) [14 ]. Other studies of the PrEP chapter are summarized in Table 14.2 . In general, approach have yielded similar results. Studies are treatment should consist of three antiretroviral currently underway to see if other dosing strate- agents, from at least two different classes of med- gies provide equal (or better) rates of prevention. ication (Table 14.2B ). Treatment should be initi- When providing prevention counseling to an ated as close to the time of diagnosis as possible, individual patient, it is helpful to target risk mitiga- with the possible exception of those who are con- tion, leading to an open and frank conversation comitantly diagnosed with an opportunistic about what the patient feels are realistic expecta- infection. In the case of a diagnosis in the setting tions. It is important to note that patients may of OI, data are clear about the need for early engage in many such behaviors to limit their risk of HAART in some infections (e.g., tuberculosis), HIV acquisition, including serosorting, seroadapta- but equivocal in others. It is clear, however, that tion, and PrEP. Ultimately, the strategies that are early therapy confers a morbidity and mortality employed are individual, and these should be dis- beneﬁ t, especially when treatment forestalls the cussed regularly with each sexually active patient. onset of immune compromise. It is also clear that Lastly, the role of prevention with the patient treatment, once started, should not be interrupted. living with HIV should also be discussed. From Even transient interruption of therapy and other data in the last decade from the CDC, it has been episodes of non-adherence to an established regi- shown that knowing one’s status can have an men increase the risk of virologic resistance, impact on transmission of HIV. As many states virologic failure, and immunologic failure. have laws pertaining to sexual acts and the need Guidelines are also available for the primary to disclose HIV status, it is also important for care physician to help guide the care of the patient providers to be aware of pertinent laws/statutes with HIV who is establishing care and who presents and to discuss them with their patients who have 238 A.J. Para et al.

Table 14.2 Department of Health and Human Services (DHHS) guidelines for when to initiate treatment (A) and what to initiate (B) in the treatment of persons living with HIV A. When to Treat Clinical condition Recommendation Strength of recommendation For patients who are HIV+, to prevent progression and complications of disease CD4 > 500 cells/mm3 Treat BIII CD4 350–500 cells/mm3 Treat AII CD4 < 350 cells/mm3 Treat AI For patients who are HIV+, to prevent transmission of HIV Risk group Strength of recommendation Heterosexuals AI Perinatal/Pregnancy AI Other AIII B. What to Start Recommended (AI) Backbone Plus other agent TDF/FTC DRV/r PI-based TDF/FTC ATV/r regimen TDF/FTC EFV NNRTI-based regimen TDF/FTC RAL INSTI-based TDF/FTC EVG/COBI regimen TDF/FTC DTG ABC/3TC DTG Recommended only for patients with a pre-ART plasma HIV RNA <100,000 copies/mL ABC/3TC EFV TDF/FTC RPV ABC/3TC ATV/r Notes 1. ABC-containing regimens should only be used for patients who test negative for HLA-B*5701 2. The combination TDF/FTC/RPV should only be used in patients with a pre-treatment CD4 of >200 cells/mm3 3. The agents FTC and 3TC may be used interchangeably (1) DHHS guidelines, available at http://aidsinfo.nih.gov Strength of recommendation A = strong, B = moderate, C = optional I = data from randomized controlled trials; II = data from well-designed, non-randomized trials or observational cohort studies with long-term follow up; III = expert opinion

HIV. It is also important to discuss with patients perspective, the most important CT serotypes are with HIV that they are still at risk for other STI D-K, which are known to cause the common chla- (as noted elsewhere in this chapter) and should mydial genitourinary syndromes. CT has been the thus be screened appropriately for STI. most commonly reported STD to the US Center for Disease Control (CDC) since 1994, and more than 1.4 million cases of CT infections were Chlamydia trachomatis reported in the US in 2012 [15 ]. Yearly incidence of CT infections has been increasing for the past Epidemiology 20 years, which may partially be due to improved Chlamydia trachomatis (CT) is a small obligate population screening strategies. Within the con- intracellular Gram-negative bacterium that causes text of the LGBT population, there is signiﬁ cant a wide spectrum of disease. From a sexual health data available on CT infections affecting 14 Sexually Transmitted Infections in LGBT Populations 239

MSM. Approximately 6–22 % (variation based infection in women can progress to PID, a process on site) of MSM who received care at the CDC characterized by infl ammation of the uterine lin- STD Surveillance Network clinics in 2012 were ing, fallopian tubes, ovaries, and/or adjacent pel- infected with CT [15 ]. Unfortunately, little data is vic organs, in approximately 10 % of untreated available on the association between female-to- cases [20 ]. CT conjunctivitis can occur in men or female sexual contact and CT transmission. Some women either by direct or indirect (via the hands) self- identifi ed lesbians and other WS(M)W also inoculation by infected urogenital secretions. have oral, insertive vaginal, and/or insertive anal Although CT can infect the pharynx, it is not sex with men, however, and these sexual behav- known to be a major cause of symptomatic phar- iors put these populations of women at risk for CT yngitis. A systemic autoimmune process called exposure and infection. reactive arthritis (Reiter’s syndrome) is characterized by recent urogenital CT infection, ocular Clinical Presentation infl ammation (usually conjunctivitis), and a large The most common sites of CT inoculation are the joint polyarthritis. cervix, urethra, anorectum, pharynx, and conjunc- tivae. Depending on the site and host, a majority of Diagnosis those infected with CT are asymptomatic. Current Nucleic acid amplifi cation testing (NAAT) has literature shows that CT urethritis in men can be largely replaced culture for all sites, and is the asymptomatic in over 80 % of those infected [ 16 , preferred diagnostic method for genitourinary 17]. Two studies done in San Francisco, California CT infections in both men and women. For and Columbus, Ohio independently found that women, a vaginal swab for NAAT is currently the 85 % of rectal CT infections in MSM were asymp- most sensitive and specifi c specimen collection tomatic [18 , 19 ]. Similarly, as much as 80 % of method for CT detection, though fi rst-catch female urogenital CT infections are asymptomatic urine, endocervical swabs, and urethral swabs are [ 20 ]. Asymptomatic CT infections in the female also viable specimens in women [ 21]. A fi rst- urogenital tract put patients at risk for complica- catch urine sample for NAAT is the preferred col- tions as severe as infertility, pregnancy complica- lection method for urogenital CT infection in tions, and chronic pain secondary to pelvic men [ 22]. A urethral swab is a viable alternative infl ammatory disease (PID) if left untreated. but is typically less comfortable for the patient. Further, asymptomatic carriers of CT at any ana- For men at risk for rectal CT, many laboratories tomical site serve as an unknowing reservoir of CT have been approved for rectal NAAT specimens transmission and spread. under the Clinical Laboratory Improvement Symptomatic urogenital CT infection in men Amendment (CLIA) regulations despite its lack most commonly manifests as urethritis (see of FDA approval. There are currently no recom- Urethritis below). A small minority of these men mendations for routine NAAT of pharyngeal develops prostatitis or epididymitis from urethral specimens in men or women; although, the phar- spread. MSM who participate in receptive anal ynx is likely a contributing reservoir for the intercourse can develop CT proctitis (infection of spread of CT. the anorectum). Symptomatic urogenital infection As mentioned above, the majority of CT cases in women most commonly presents as cervicitis are asymptomatic. Therefore, screening patients (see Cervicitis below). Some female patients with based on their sexual behaviors is imperative, as cervicitis develop a concurrent CT urethritis, swabbing at one inoculable site does not indicate while others develop urethritis without a corre- CT positivity or negativity at a different location. sponding cervicitis. CT proctitis in women can Kent et al. found that 53 % cases of rectal CT in result from either direct receptive anal intercourse MSM would have been missed if patients were with an infected male or from self-inoculation by screened only with urogenital samples [18 ]. This infected cervicovaginal secretions. Urogenital CT fi nding highlights the importance of routinely 240 A.J. Para et al. screening patients for CT at susceptible sites Neisseria gonorrheae (Gonorrhea) based on an individual’s sexual behavior. Epidemiology Treatment Neisseria gonorrheae , or gonococcus (GC), is a According to the 2010 CDC treatment guide- diplococcal, Gram-negative bacterium that lines, 1 g of azithromycin in one dose or 100 mg exhibits a similar spectrum of disease as of doxycycline taken twice daily for 7 days are Chlamydia trachomatis (CT). GC is the second equally effective in treating a non-LGV chlamyd- most common bacterial sexually transmitted ial infection [ 22]. Other macrolides or fl uoroqui- pathogen following CT. Over 330,000 GC infec- nolones are alternative therapies but may be less tions in the US were reported to the CDC in 2012 effective. The one-time-dose of azithromycin is [15 ]. Interestingly, the lowest recorded GC infec- preferable for patients in whom medication non- tion rate was in 2009, yet GC prevalence rates compliance may be an issue, but gastrointestinal over 2010–2012 progressively increased. This distress and subsequent medication loss with trend highlights both the impact of improved emesis must be considered. If diagnosed with CT, screening strategies and the possibility of increas- patients are recommended to abstain from further ing GC burden in the US population. Similar to sexual activity for 7 days and until all symptoms CT, data shows that MSM are disproportionately have diminished. When a patient is diagnosed affected by GC. A study looking at the rates of with CT, all sexual partners of the patient within GC in San Francisco from 1999 to 2008 showed the past 60 days should be contacted and recom- that 72 % of GC infections were detected in mended for testing at susceptible sites. Infected MSM [ 23 ]. Approximately 10–30 % of MSM patients should follow-up with their provider in (variability based on location) screened through approximately 3 months for retesting regardless the CDC STD Surveillance Network tested posi- of whether they believe their sexual partner(s) tive for GC in 2012 [ 15]. Again, similar to CT, were screened and treated appropriately. Contrary female-to-female transmission of gonococcal to Neisseria gonorrheae (GC), little concern infections is not well documented. WS(M)W and exists for the development of antibiotic resistance self-identifi ed lesbians can have sex with men, in CT. however, and put themselves at risk for pharyngeal, urogenital, and anorectal GC acquisition. Lymphogranuloma Venereum Lymphogranuloma venereum (LGV) is a particu- Clinical Presentation lar form of invasive CT disease, commonly mani- Symptomatic GC infection exhibits considerable fest as proctitis and suppurative inguinal clinical overlap with symptomatic CT infections. adenopathy, and is typically caused by L1–L3 Urogenital infections in men are likely to present serovars of CT. Clusters of LGV have been as urethritis (see Fig. 14.2), which can spread reported in MSM, most often in the context of a locally to cause prostatitis or epididymitis. sexual network, though it should be noted that Contrary to CT, GC urethritis is largely symp- many cases can be traced back to en endemic tomatic in men. In a study assessing around 1800 exposure (e.g., travel to endemic tropical/sub- cases of GC urethritis, only 10.2 % were entirely tropical area). Overall, rates of LGV are higher asymptomatic [24 ]. Female urogenital infections amongst MSM than in the general population. It are likely to present as cervicitis (most common), is unclear whether this represents an increase in urethritis, or a combination of both. A majority of the prevalence of the LGV- causing serovars in female urogenital GC infections are asymptom- MSM, or the increased incidence of CT in MSM, atic [25 ]. Urogenital GC in women can progress as has also been reported when compared with to pelvic infl ammatory disease (PID), a process other populations. For LGV, the standard treat- characterized by infl ammation of the upper ment is oral doxycycline, 100 mg, taken twice female genital tract (i.e. uterine lining, fallopian daily for 21 days. tubes, ovaries) and other pelvic organs [26 ]. 14 Sexually Transmitted Infections in LGBT Populations 241

Fig. 14.2 This image shows the polymorphonuclear cells seen histologically in bacterial urethritis. Note the associated Gram- negative diplococci characteristic of an infection with Neisseria gonorrhoeae

The risk of progression of asymptomatic urogenital and approved by the FDA for the detection of GC in women to PID and its associated morbidi- urogenital gonococcal infections in both men ties is a serious concern for those infected. This and women [22 ]. In women, vaginal and endo- highlights the need for suffi cient screening and cervical swabs and urine can be used for treatment of women at risk for GC acquisition. NAAT. In men, viable NAAT collection methods Proctitis (infection of the anorectum) can include a urethral swab or urine. Using urine for occur in both men and women and is largely NAAT may be easier for providers and more asymptomatic in both sexes. As mentioned comfortable to patients in comparison to direct above, Kent et al. showed that approximately urogenital swabs. Of note, in symptomatic men, 85 % of rectal gonococcal infections in their San Gram stain of a urethral specimen is a specifi c Francisco MSM study population were asymp- and sensitive method of diagnosing urogenital tomatic [18 ]. Rectal GC in females occurs from GC; however, its sensitivity diminishes if the either direct inoculation from an insertive male patient is asymptomatic [ 22]. Although not offi - sexual partner or from autoinoculation by cially approved by the FDA, NAAT can also be infected cervicovaginal fl uids [27 ]. Pharyngeal used for the detection of rectal or pharyngeal gonorrhea is mostly asymptomatic and may be a gonococcal infections in men and women when concerning source of pathogen transmission and laboratories receive independent authorization to spread in the sexually active population. perform these diagnostic tests. The specifi c Although rare, disseminated infection can NAAT kit used is relevant for the detection of present in men and women as gonococcal bacte- pharyngeal and rectal specimens as commensal remia with migratory polyarthritis, tenosynovitis, Neisseria fl ora can generate false-positive results and/or cutaneous lesions. GC is the most com- in certain kits. mon cause of polyarthritis in sexually-active, Providers should be aware of the need for anti- healthy young adults. biotic susceptibility testing when patients experience possible treatment failure (i.e. persistent Diagnosis symptoms after completion of prescribed antibi- The diagnostic approach to anogenital GC infec- otic course) as these cases may represent tions is largely comparable to CT. Nucleic acid instances of antibiotic-resistance. Antibiotic sus- amplifi cation testing (NAAT) is recommended ceptibility can only be determined from cultured 242 A.J. Para et al.

Neisseria gonorrhoeae and not from routine Herpes Simplex Virus NAAT. Treatment is discussed further in the next section. Epidemiology Herpes simplex virus type 1 ( HSV-1) and herpes Treatment simplex virus type 2 (HSV-2) are classically Since 2012, the CDC has recommended treating known to cause lifelong, recurrent cutaneous and all GC infections with both ceftriaxone 250 mg mucosal ulcerative lesions of the mouth and geni- injected intramuscularly and oral azithromycin talia. Despite the historical notion that HSV-1 1 g in one dose [22 ]. GC treatment regimens inoculation was limited to the mouth and HSV-2 have varied signifi cantly in the past few decades was limited to the genitals, both HSV-1 and -2 are as it has developed resistance to multiple classes now known to be present at both sites, and both of antibiotics [22 ]. Rates of resistance to can cause the clinical syndrome known as genital fl uoroquinolones rose to levels that led to their herpes. removal from recommendation guidelines in An analysis of data collected from the National 2007. Interestingly, these resistant strains of GC Health and Nutrition Examination Survey were predominantly found in MSM in the 1990s (NHANES) showed that HSV-1 and HSV-2 affect before spreading more diffusely throughout the a signifi cant proportion of the US population [30 ]. population. Cephalosporins (ceftriaxone, cefi x- From 2005 to 2010, 53.9 % of those aged 14–49 in ime) became the standard of care for GC infection the US were seropositive for HSV-1. HSV-2 had a at all anatomical locations following the discon- seroprevalence of 15.7 % in the same age range tinuation of quinolone utilization. Mirroring the over the same time period. Interestingly, in com- trend seen with fl uoroquinolones a few years parison to data from 1999 to 2004 from the same prior, resistance toward cefi xime was seen in survey, HSV-1 seroprevalence decreased dramati- sporadic cases of gonococcal infections in MSM cally in the 14–19 year old age group. This cor- in 2011. This fi nding prompted a national effort relates with recent hypotheses that childhood, by the CDC to maximally reduce the develop- non-sexual HSV-1 transmission is declining. It is ment of cephalosporin resistance. Cefi xime was unsurprising that genital HSV-1 infections have removed from the fi rst-line therapy recommen- become more common as these increasing num- dations for GC. Ceftriaxone is now the only bers of HSV-1 seronegative teenagers and young fi rst-line cephalosporin therapy indicated for GC adults practice increasing rates of oral sex [31 ]. infections. The mandatory addition of azithro- HSV-2 seroprevalence did not change signifi - mycin to ceftriaxone is intended to reduce selec- cantly between 1999–2004 and 2005–2010 [ 30]. tion for cephalosporin-resistant strains of GC Because HSV-1 and -2 are lifelong infections, due to their anti-gonococcal properties. Both of data on HSV incidence is logistically challenging these antibiotics are also effective at eliminating to obtain, especially in older populations, and is CT in a patient co-infected with GC and CT. less available than prevalence data. If a patient experiences therapeutic failure Within the context of the LGBT population, with persistent symptoms of GC after antibiotic both HSV-1 and HSV-2 are relevant. A study that treatment, a follow-up culture with antibiotic looked at NHANES data from 2001 to 2006 susceptibility testing is indicated as mentioned showed that 18.4 % of men who had had sex with above. Although many cases of GC infection on men in their lifetime were seropositive for follow-up are due to reinfection instead of HSV-2 [ 32 ]. A study done in New York City treatment failure, screening the patient for showed that as many as 32.3 % of their MSM cephalosporin-resistant strains of GC is impor- population had serological evidence of HSV-2 tant in the context of public sexual health. This infection, highlighting the variability of HSV-2 is especially important for MSM, who are seroprevalence based on study population and reported to be at increased risk for resistant local sexual culture [33 ]. Data available on infection [29 ]. HSV-1 in MSM shows a similar trend to that of 14 Sexually Transmitted Infections in LGBT Populations 243 the general population; rates of anogenital HSV-1 HSV-2 infection in this region [ 40]. The same are on the rise [34 ]. A study assessing the preva- holds true for HSV-1 and the orolabial region. lence of HSV in a study population of approxi- Yet, HSV-1 can be acquired genitally from oral mately 400 WSW showed that 46 % were secretions. Within the context of the viruses’ nat- seropositive for HSV-1 and 7.9 % were positive ural histories, genital HSV-1 sheds asymptomati- for HSV-2 [35 ]. The authors of this study empha- cally less often, causes breakouts less frequently, sized the point that genital HSV-1 may be espe- and exhibits more dramatic decreases in yearly cially predominant in the WSW population as recurrence rates compared to HSV-2 [41 ]. oral sex is a major component of female-to- Patients should be aware that while condoms female sexual contact. An interesting study can be somewhat effective in preventing HSV assessing HSV-2 seropositivity in self-identifi ed transmission from asymptomatic viral shedding, bisexual men showed that HSV-2 infection was any infected mucosal or skin surface can shed signifi cantly associated with the number of life- viral particles (as a large cutaneous surface area time female sexual partners but not with the num- may be innervated by the peripheral nerves ber of male partners [36 ]. Thus, heterosexual infected during the initial inoculation event) [ 37 , behaviors were directly implicated in HSV expo- 42 ]. For example, if a patient has a genital HSV sure and acquisition in the MSM population. infection, he/she may shed the virus from his/her thighs, buttocks, upper abdomen, or perineum in Transmission and Acquisition addition to the genitals directly. HSV is transmitted by viral particles shed from Some data suggest that HSV-1 provides some the skin or mucosal surface of an infected indi- host immunity protection against future acquisi- vidual [37 ]. This viral shedding can occur in the tion of HSV-2 [39 ]. However, a patient with a setting of an active HSV outbreak (i.e. ulcerative genital HSV-1 infection can become infected with lesions on the skin or mucosal surface) or asymp- HSV-2 genitally as well [43 ]. Therefore, it is tomatically. If an individual is suceptible to the important for patients to both know their sero- virus and is exposed at an inoculable site, he/she logic status with respect to HSV-1 and -2 and con- can experiene a local, primary “outbreak” as well tinue to maintain safe sexual practices regardless as develop a latent HSV infection as the virus of whether or not they have had a genital herpes ascends the nerve roots present in the inoculated outbreak as they may only have genital HSV-1. tissue and establishes dormancy in the nerve cell bodies. The virus then periodically reactivates, Clinical Presentation causing intermittent subclinical viral shedding The initial, or primary, infection with HSV-1 or -2 and recurrent cutaneous vesicular/ulcerative and the associated symptoms are typically more lesions at the initial inoculation site. severe than the subsequent symptomatic episodes HSV seropositive patients should be educated characteristic of recurrent genital herpes [37 ]. on their risk of transmitting HSV to their sexual Symptoms of primary infection occur a few days partner(s). The greatest quantity of viral shedding to a week after exposure. Primary HSV infection and thus transmission risk, is associated with of the anogenitalia can manifest as local cutane- sexual activity when active genital (or orolabial) ous lesions (clustered vesicles, unroofed vesicles, lesions are present [38 ]. Any type of sexual activ- or crusted-over lesions), cutaneous pain, pruritus, ity—even body contact involving the affected dysuria, genital discharge, or painful inguinal region—should be avoided by patients with lymphadenopathy (see Fig. 14.3 ). Systemic active lesions. However, asymptomatic viral symptoms such as fever, malaise, headache, and shedding occurs frequently and is likely the cause muscle aches are also common in both men and of the majority of cases of HSV transmission women. More serious sequelae of a disseminated [39 ]. Data suggests that HSV-2 has a greater tro- primary infection uncontrolled by host immune pism than HSV-1 for the anogenital region; this factors include encephalitis or aseptic meningitis, means that it is more likely to establish recurrent but these neurological conditions are rare. 244 A.J. Para et al.

Fig. 14.3 This image depicts a very severe case of genital HSV in a female. Recurrent outbreaks of HSV are typically less extensive than the case shown here

HSV-1 and -2 outbreak recurrences typically The recommended confi rmatory testing of an occur at the initial site of inoculation with less active lesion is HSV PCR performed on a swab severe cutaneous symptoms and few to no sys- of the base of an unroofed vesicular lesion. HSV temic fi ndings [37 ]. Some patients may experi- PCR has proved superior to viral culture in terms ence a prodrome characterized by tingling or of sensitivity, reproducibility, and time until pruritus in the area that later exhibits HSV vesic- available results [44 , 45 ]. If HSV testing is indi- ular lesions. As mentioned above, genital HSV-1 cated in a patient without active lesions, serologi- infections are typically milder in course com- cal studies are available to diagnose and pared to genital HSV-2 [41 ]. Individuals with differentiate between HSV-1 and -2. Other indi- HSV-1 or -2 may be entirely asymptomatic and cations for serologic testing include an atypical not experience the typical symptoms of a primary or questionable presentation of HSV infection, a infection or recurrent lesions. Others may exhibit negative viral culture or HSV PCR, a history of signs and symptoms of the primary infection but HSV lesions but no active lesions at the time of never experience a recurrent outbreak and vice- presentation, the presence of mostly healed versa. Atypical presentations of genital HSV are lesions, or a person with an HSV seropositive common and range from fi ssures to patchy ery- sexual partner looking to confi rm their status thema to excoriations. The wide variability in the after exposure. Serologically differentiating appearance of genital herpes highlights the need between HSV-1 and -2 at the genital site has for proper screening and diagnosis of patients implications in quantifying a patient’s risk of with HSV from a public health perspective to asymptomatic viral shedding (i.e. risk of trans- decrease transmission and morbidity associated mission to a seronegative partner) and viral with the disease. acquisition, as mentioned above, depending on the serological statuses of an individual and his/ Diagnosis her partner(s). Some cases of genital HSV may be diagnosed clinically, though laboratory confi rmation is rec- Treatment ommended [22 ]. Serologic testing specifi cally For recurrent, symptomatic genital herpes by may play a role in the screening and diagnosis of HSV-1 or HSV-2, two treatment strategies are HSV infection in asymptomatic individuals who available: episodic and suppressive therapy. may unknowingly transmit the virus to seronega- Patients with psychosocial issues related to their tive sexual partners. HSV infection, with serodiscordant sexual 14 Sexually Transmitted Infections in LGBT Populations 245 partner(s) (even in the absence of outbreaks), or atic and the concern for long-term sequelae, with frequent, painful recurrent episodes of HSV syphilis remains a concern to public health lesions, may benefi t from the suppressive deserving attention. This infection is of particular approach. Suppressive therapy reduces asymp- interest within the LGBT community as it dispro- tomatic HSV viral shedding and symptomatic portionately affects MSM. Syphilis rates in the fl are-ups, decreasing the risk of HSV transmission US declined throughout the 1990s to a nadir in to seronegative sexual partners [46 ]. A typical sup- 1998 of 6993 [48 ]. Unfortunately the 1999–2000 pressive regimen would involve acyclovir 400 mg rates of syphilis increased, predominantly in two times per day or valacyclovir 500 mg once per MSM populations within large metropolitan day. Despite its moderately higher cost, valacyclo- areas such as New York City [ 49 ]. 2000–2003 vir may be a preferred regimen when patient non- saw a 19 % increase in the rate of syphilis [ 50 ]. compliance is an issue as only one dose is These outbreaks often occurred among networks administered daily. Current data show that there is MSM and were aided by newer technologies little risk of HSV developing antiviral resistance such as the widespread use of the internet, as was on long-term therapy [47 ]. If a patient on a sup- the case with one prominent outbreak in San pressive regimen experiences a breakthrough Francisco from a single internet chat room [51 ]. recurrence, following the episodic treatment plan Even within MSM, the burden of this disease is outlined below is appropriate. This treatment regi- disproportionately borne by black, Hispanic, and men conveniently uses the same dosages per pill as young MSM [52 ]. Multiple factors have been the suppressive regimen with a greater number of proposed as reasons for this increase including pills taken each day (see below). Of note, patient’s rising rates of HIV, less adherence to barrier experiencing the more severe primary outbreak methods, and lack of education about acquisition may require a longer treatment course [22 ]. and testing for syphilis. For patients who have less frequent recur- It is important for the provider to educate rences or who are less concerned with HSV from patients on the ability of syphilis to be spread in a psychosocial or sexual transmission standpoint, manners besides anal and vaginal penetrative sex. episodic treatment initiated when lesions appear In one cohort, 6 % of cases of syphilis were may be appropriate. A typical treatment regimen reported in men who denied anal sex and 25 % in would involve acyclovir 500 mg three times per those who endorsed consistent condom use. day for 5 days or valacyclovir 500 mg two times Though syphilis burden is much lower in WSW per day for 3 days. populations they are also at risk for infection As genital HSV-1 infection typically exhibits given the transmissibility of Treponema pallidum a milder course compared to genital HSV-2 [41 ], via spread of sexual secretions and cases of syph- is serologically more common, has less frequent ilis between female partners has been reported in recurrences, and is asymptomatically shed less the literature [53 ]. often at an anogenital site, suppressive therapy in patients with symptomatic genital HSV-1 may Clinical Presentation not be indicated, though patient concern may Syphilis is spread via direct contact, typically dur- make suppression preferred. ing sexual intercourse. It is a fairly infectious agent with effi ciency of transmission of about 30 %. It is known in medicine as “The Great Treponema pallidum (Syphilis) Imitator” due to its myriad presentations in patients. This section by no means attempts to Epidemiology provide an exhaustive description of possible pre- Syphilis, a disease known since antiquity, is an sentations but instead focuses on the most com- infection caused by the spirochete Treponema mon presentations of the different stages of pallidum . Given its ability to remain asymptom- infection: primary, secondary, latent, and tertiary. 246 A.J. Para et al.

Though it typically appears after resolution of the primary chancre, in immunocompromised patients secondary syphilis may appear sooner. Most patients experience rash as the predominant symptom of secondary syphilis. This rash may take many forms, excepting a vesicular rash, and is classically a maculopapular rash that does not spare the palms and soles (see Figs. 14.5 and 14.6 ). These are usually reddish brown 0.5–2 cm lesions that may present with or without scale. Some patients develop condyloma lata, or raised, large, white-grey lesions on mucous membranes or perineum, often adjacent to the location of the primary chancre. Condyloma lata can be mistaken for genital warts. These lesions have a very high organism burden and are highly infectious. Other systemic symptoms of secondary syphilis include fever, headache, malaise, sore throat, orogenital mucous patches, and generalized lymph- Fig. 14.4 This image depicts a penile chancre typical of a primary syphilis infection. Note the indurated, erythem- adenopathy. Patients may also experience atous base surrounding the lesion gastrointestinal symptoms, hepatitis, renal abnormalities, muscle aches, and ocular symptoms such as uveitis. Primary syphilis is characterized by the clas- Without treatment, most cases go on to a sic painless ulcer, or chancre (see Fig. 14.4 ). The latent, non-infectious period. During this period median incubation period between exposure and the disease may be spread vertically but not manifestation of chancre is 21 days. The chancre between sexual partners; however, about one- appears at the site of inoculation and is classi- fourth of patients experience a recurrent second- cally described as 1–2 cm, non-painful, and non- ary infection wherein they may transmit the purulent. Many presentations of primary syphilis disease. Latent syphilis can be deﬁ ned as early or may stray from this classical presentation and late latent infection, with the cutoff point between thus a high level of suspicion with low threshold the two at 1 year. In latent syphilis, often the date to test should be used with high-risk patients. The of infection is not known, so the cutoff is inter- chancre may be accompanied by regional preted with respect to the last known negative lymphadenopathy. There is usually only one test. The dichotomy is important from a public chancre; however, among HIV positive patients health perspective given that early latent cases there have been reports of multiple chancres at may identify sexual partners that should be noti- presentation. Due to the largely asymptomatic ﬁ ed from the last year, while late latent syphilis nature of the chancre these can go unnoticed, requires a longer duration of therapy than pri- especially when present in the anus, oropharynx, mary, secondary, and early latent infection. or vaginal vault as opposed to the labia or penile About one third of untreated patients will go shaft. The ulcer usually heals within 2–3 weeks. on to develop tertiary syphilitic symptoms. These During this period the disease is transmissible can develop as soon as a year after infection or and patients should refrain from further sexual more indolently occur even up to 25–50 years contact until treatment is complete. later. These are more likely to occur more rapidly Secondary syphilis develops in about 25 % of or with a more dramatic presentation in HIV- untreated patients and usually manifests within infected patients. Typically syphilis is unable to weeks to a few months after the primary infection. be transmitted during this stage. Classic manifes- 14 Sexually Transmitted Infections in LGBT Populations 247

Fig. 14.5 This ﬁ gure shows the palmar rash typical of secondary syphilis

Fig. 14.6 This ﬁ gure shows the rash on the soles of the feet typical of secondary syphilis

tations of this late stage of infection are gummas, present with symptoms ranging from meningitis cardiovascular, and neurologic ﬁ ndings. Gummas to ocular symptoms (e.g., the Argyll-Robertson are the most rare manifestation and present as pupil), otologic manifestations, and tabes dorsa- granulomatous lesions on the skin, bones, or lis. Meningitic symptoms are characteristic of internal organs (see Fig. 14.7 ). The classic car- early neurosyphilis and are usually seen in the diovascular symptom of tertiary syphilis is dila- ﬁ rst 12 months of infection, or after treatment of tion of the ascending aorta. Neurosyphilis can early syphilis in patients co-infected with HIV. 248 A.J. Para et al.

specifi c treponemal tests, the fl uorescent treponemal antibody absorption test (FTA-ABS), the Treponema pallidum particle agglutination test (TPPA), and the microhemagglutination-Trepo- nema pallidum (MHA-TP), are used as confi rmatory testing for those who test positively with screening tests. Newer PCR methods are described but not yet widely available [55 ]. Both screening and confi rmatory tests must be positive for a diagnosis of syphilis. In the case where a patient has already been treated for syphilis, a fourfold or greater increase in non-treponemal titers represents presumptive reinfection. Neurosyphilis can only be diagnosed via lum- bar puncture and direct testing of the CSF. This should be a consideration in any patient who is displaying neurologic or ocular symptoms of syphilis infection, HIV co-infected patients with syphilitic infection of unknown duration, or patients who have failed treatment on a regimen Fig. 14.7 This image shows a severe gumma on the nose that does not suffi ciently cross the blood-brain of a man affected by tertiary syphilis barrier. Routine testing for neurosyphilis is not advised as early syphilis can have positive CSF fi ndings that do not correlate with later sequelae Late neurosyphilis occurs 10–25 years after initial of neurosyphilis. While CSF VRDL is very spe- infection and, while it can present with a range of cifi c, its low sensitivity requires other testing neurologic symptoms, typically includes the including protein, cell count, and CSF-FTA. CSF- classic tabes dorsalis and gummatous parenchy- FTA is one of the most sensitive tests for neuro- mal presentations [54 ]. Given the varying presen- syphilis available and is a good test for ruling out tations, late-stage syphilis is an important part of neurosyphilis in the general population; however, many differential diagnoses and the stage of this as with all testing, it should be borne in mind that presentation has important implications for dos- such a test cannot defi nitively rule out neurosyph- ing and duration of treatment. ilis, particularly when there is a high pre-test probability of syphilis in the patient under consid- Diagnosis eration (as may be the case, for example, with Syphilis is notorious for its diffi culty to culture, MSM populations) [56 ]. In otherwise healthy making live study and direct diagnosis more dif- patients with symptoms of neurosyphilis, the fi cult. The classic method for diagnosis is dark- CDC recommends cut-off of >5 white blood cells fi eld microscopy in which the spiral treponemes per mL of CSF be used to support diagnosis (a light up brightly. Unfortunately this technique is cut-off of >20 white blood cells per mL of CSF is not sensitive and it is rarely available in the clini- recommended for patients with HIV). The results cal setting. Indirect serologic assays are the of these tests must be clinically correlated to mainstays of syphilis testing and recommended patient symptoms and overall health. Patients by the CDC for diagnosis of syphilis. There are with borderline CSF results often benefi t from both non-treponemal and treponemal tests. Non- expert guidance in determining management with treponemal tests, such as the rapid plasma reagin treatment versus watchful waiting with serial LPs. (RPR) and the Venereal Disease Research Anytime there is a concern for syphilis, there Laboratory test (VDRL), are sensitive but not should also be concern for other STI, especially specifi c and are used for screening. The more HIV, and HIV testing is indicated. 14 Sexually Transmitted Infections in LGBT Populations 249

Treatment age 50 [ 22]. Named for the visible wart lesions that Penicillin remains the antibiotic of choice in the it causes, it is increasingly appreciated for its role in treatment of syphilis. There is currently no evi- many forms of cancer (cervical, anal, penile, vagi- dence of penicillin resistance in the organism. The nal, vulvar, oropharyngeal). This section focuses duration and dosage of treatment depends upon mainly on the manifestation of genital warts. For the stage and symptoms of disease (see Table 14.3 ). information on the relationship of HPV to cancer Alternate regimens do exist for penicillin-allergic and HPV vaccination please see Chap. 17 . patients except in the cases of neurosyphilis or Within the LGBT community there are some pregnancy, wherein desensitization therapy is the special considerations around HPV infection. A recommended treatment in these groups. common misconception is that WSW are at lower Practitioners should warn patients of the risk for this infection; however, HPV has been potential for the Jarisch-Herxheimer reaction seen in WSW with no history of male partners upon initiation of treatment. Characterized by [ 57]. For WSW who do have male partners, rash, headache, myalgias, and hypotension, increased number of male partners represents a this usually occurs within 1–2 h of treatment risk factor for HPV acquisition/infection. There and resolves within 24–48 h. It can be man- is evidence that insertive toys present a potential aged with antipyretics and analgesics. This risk for HPV transmission [58 ]. WSW should reaction is more common in patients who are undergo routine Pap screening. Within the MSM being treated for early syphilis, those with population, 57 % of patients in one study were higher RPR titers, and those who are co- found to have anal infection with HPV with HPV infected with HIV. 16 being the most common agent [59 ]. Some Response to treatment and follow-up is experts recommend that MSM who engage in somewhat specifi c to each stage of the disease receptive anal intercourse should be tested every and can be found in the CDC’s Guidelines for 3–5 years with anal pap smears [60 ]. Again both STI Treatment [22 ]. In general, follow-up of populations may present with anogenital warts. non- treponemal testing is done at 6 and 12 months with a desired fourfold drop in titers at Clinical Presentation 12 months representing cure. More frequent Anogenital warts can range in appearance from 3-month intervals may be advisable in HIV- pink to fl esh colored and from fl at, smooth lesions infected patients who are more likely to fail to hyperkeratotic raised lesions, to the classic con- treatment. Finally, in patients who are not dyloma acuminata (caulifl ower-shaped, verrucous responding to treatment as expected it may be lesions, see Fig. 14.8 ). Though infection is often prudent to test for HIV and to consider to LP for asymptomatic, patients can present with pruritis, possible CSF involvement. bleeding, pain, or vaginal discharge (see Fig. 14.9 ). Sexual partners should be offered testing. In certain instances, the lesions can become large Though syphilis transmission is thought to only and interfere with intercourse or defecation. occur when patients have mucocutaneous lesions, sexual partners of those with latent or tertiary Diagnosis syphilis should still be offered testing. The guide- When diagnosing the lesion, careful attention lines for partner testing and treatment can also be should be given to the size and extent of the found in the CDC Guidelines for STD Treatment. lesions. Providers should use anoscopy and/or pelvic examination to search for other lesions outside of the perineal, penile, or vulvar areas. Human Papillomavirus Additionally, the oral cavity should also be examined for lesions. Anogenital warts are usually Epidemiology diagnosed by visual inspection; however, when The human papillomavirus (HPV) has over 100 unclear a biopsy may be performed. Additionally, serotypes and 75–80 % of sexually active adults 5 % acetic acid can be applied to the area to acquire some form of genital infection with HPV by assess for extent of disease, though this is not 250 A.J. Para et al.

Table 14.3 Pathogen, presentation, and treatment Pathogen/Disease Classic patient complaint(s) Treatment recommendations Genital herpes (HSV-1, Primary infection: painful anogenital vesicular Suppressive: acyclovir HSV-2) rash with associated lymphadenopathy and 400 mg PO BID, valacyclovir constitutional symptoms (e.g. fever, malaise) 500 mg PO QD Recurrent outbreak: painful anogenital vesicular Episodic: acyclovir 400 mg rash (commonly to lesser extent than primary PO TID ×5 d, valacyclovir infection) with surrounding erythema; possible 500 mg PO BID ×3 d prodrome (unless primary outbreak: acyclovir 400 mg PO TID × 7–10 d, valacyclovir 1 g PO BID × 7–10 d) Chlamydia trachomatis Urethritis: dysuria, urethral pruritis, urinary Azithromycin 1 g PO ×1 dose serovars D-K frequency, penile discharge Doxycycline 100 mg PO BID Cervicitis: dyspareunia, postcoital bleeding, ×7 d vulvovaginal irritation, cervical discharge, dysuria, urinary frequency Proctitis: bleeding (particularly with bowel movements), tenesmus, anal discharge, perianal pruritis Gonorrhea (Nessieria Similar spectrum of disease as anogenital Ceftriaxone 250 mg IM ×1 gonorrhoeae ) chlamydial infections dose + azithromycin 1 g PO × 1 dose Treatment failure on follow-up: consider antibiotic resistance in addition to reinfection Lymphogranuloma venereum Painless genital ulcer that progresses to painful Doxycycline 100 mg PO BID (Chlamydia trachomatis lymphadenopathy, late-stage disease associated × 21 d serovars L1, L2, L2a, L3) with permanent lymphatic stricture Syphilis (Treponema Primary syphilis: painless, non- purulent genital Primary, secondary, early- pallidum ) ulcer (i.e. chancre) latent syphilis: Benzathine Secondary syphilis: maculopapular rash involving penicillin G 2.4 million units the palms/soles, condyloma lata (raised, large, IM single dose white-grey lesions on mucous membranes), Late-latent syphilis, latent systemic lymphadenopathy, constitutional syphilis of unknown duration, symptoms non-neurological tertiary Latent syphilis: asymptomatic syphilis: Benzathine penicillin Tertiary syphilis: cutaneous gummas G 7.2 million units in 3 (granulomatous lesions with central necrosis), divided doses of 2.4 million tabes dorsalis and other neurological units given a week apart manifestations, cardiovascular disease Neurosyphilis: Aqueous crystalline penicillin G 18–24 million units per day, administered as 3–4 million units IV every 4 h or continuous infusion, for 10–14 days Bacterial vaginosis Malodorous (“ﬁ shy”) clear vaginal discharge, Metronidazole 500 mg PO mild vaginal pruritis BID × 7 d Vulvovaginal candidiasis Vaginal pruritus, vaginal soreness, dyspareunia, Fluconazole 150 mg PO × 1 (Candida spp.) dysuria, white/curd-like (“cottage cheese”) dose vaginal discharge Various topical azole therapies (continued) 14 Sexually Transmitted Infections in LGBT Populations 251

Table 14.3 (continued) Pathogen/Disease Classic patient complaint(s) Treatment recommendations Trichomoniasis (Trichomonas Malodorous yellow-green vaginal discharge, Metronidazole 2 g PO × 1 vaginalis) vulvar pruritis dose Consider as possible etiology of urethritis (see above for symptoms) in men if refractory to empiric GC/CT therapy Pubic lice (Pediculosis pubis ) Anogenital pruritis, visible organisms in pubic 1 % Permethrin cream rinse hair applied and washed off after 10 min Pyrethrins + piperonyl butoxide applied and washed off after 10 min Scabies (Sarcoptes scabiei ) Crusted linear/serpentine cutaneous lesions with 5 % Permethrin cream applied associated pruritis to body from neck down, washed off after 8–14 h (i.e. overnight) Ivermectin 200 μg/kg with repeated dose at 2 weeks Note: Viable alternative therapies are available, see 2015 CDC Treatment Guidelines for more information

Treatment Treatment can generally be classiﬁ ed as chemical/ physical ablation, immunomodulation, or surgical removal. The type of treatment initiated should be selected based on extent of the disease and patient follow-up. Podophyllin, tricholroacetic acid (TCA), and 5-ﬂ uorouracil (5-FU)/epinephrine gel have all been used as chemical agents. Imiquimod and interferon alpha are two immunomodulating agents used for treatment. Cryotherapy, laser ablation, and surgical excision are also options for removal.

Prevention The quadrivalent HPV vaccine provides protection from the two most common HPV strains causing anogenital warts. For more information about the HPV vaccines please see Chap. 17 .

Bacterial Vaginosis

Fig. 14.8 This image shows a severe case of anorectal genital warts, also known as condylomata acuminata (sin- Epidemiology gular: condyloma acuminata). These lesions are associ- Bacterial vaginosis ( BV) is a common infection ated with an infection with human papilloma virus (HPV) in women caused by the loss of normal vaginal ﬂ ora of lactobacilli and the overgrowth of poly- speciﬁ c. In immunocompromised patients, those microbial facultative anaerobes. This infection is who lesions are growing or large in size, or with of particular importance to sexual health provid- atypical features such as induration or ulceration ers of WSW, as multiple studies have shown an it is prudent to biopsy for potential pre-malignant association between female sexual partners and or malignant lesions. BV. During 2001–2004, the NHANES found the 252 A.J. Para et al.

Fig. 14.9 This image shows a HPV-related genital wart on the cervix. Note the associated inﬂ ammation and bleeding

Fig. 14.10 This image shows the appearance of clue cells typical of bacterial vaginosis on light microscopy. Note the numerous bacteria coating the sloughed epithelial cells from the female genital tract

prevalence of BV in women who reported sex discharge and of a “fi shy” odor. This odor classi- with a woman was signifi cantly higher at 45.2 % cally worsens with sexual intercourse and menstru- than the overall prevalence of 29.2 % [61 ]. ation. Many patients will be asymptomatic. The Additionally, self-identifi ed lesbian women in an diagnosis of BV is made when they meet 3 of 4 age-matched study in the UK showed an increased Amsel’s Criteria: abnormal gray discharge, vaginal odds (of 2.5) for BV [62 ]. There is some evidence pH of greater than 4.5, a positive amine “whiff” that a monogamous, long-term same-sex rela- test, and clue cells on wet prep (see Fig. 14.10 ). tionship is protective against BV, while more partners promote a disruption in the vaginal Diagnosis microbiota and increase BV rates [63 ]. Providers Common bacterial pathogens identifi ed include should be aware of this increased risk when treat- Gardnerella vaginalis , Mycoplasma hominis , ing and counseling WSW. Bacteroides species, Peptostreptococcus species, Fusobacterium species, Prevotella species, and Clinical Presentation Atopobium vaginae . These can also be normal BV can present with urethritis and vaginitis, though vaginal fl ora but become pathogenic when an as patients more often complain of increased vaginal yet unidentifi ed change in the vaginal microenvi- 14 Sexually Transmitted Infections in LGBT Populations 253 ronment allows overgrowth of these species. The [ 66]. This is similar to heterosexual studies link- diagnosis of BV is clinical. Given the normal ing a higher number of male partners to increased presence of these bacterial species in healthy risk for vulvovaginal candidiasis (VVC). There is vaginal fl ora, a positive culture for does not diagno established link between any particular sexual nose BV without corresponding clinical symp- practice, such as use of toys, and the development toms. The exception to this is in research wherein of VVC. the Nugent criteria use gram stain to diagnose. Symptoms of infection include a thick, white, curd-like discharge as well as accompanying Treatment pruritus, burning, dysuria, and dyspareunia. Current treatment recommendations include met- Candida spp. are considered part of the natural ronidazole and clindamycin, with the former pre- vaginal fl ora and symptomatic candidiasis is ferred. These come in both topical and oral typically caused by an overgrowth of these administrations. Typically the oral regimens are organisms. The diagnosis requires both clinical more expensive, though many patients prefer the symptoms and evidence of the yeast on either oral route. Often BV is recurrent and may require probe testing or microscopic visualization on multiple or extended courses of antiobiotics. wet prep with 10 % KOH (see Fig. 14.11 ). Additionally, patients who smoke cigarettes VVC can be defi ned as either uncomplicated should be counseled on cessation as smoking has or complicated. Complicated infections are those been linked to this infection [63 ]. BV should be that present with severe symptoms, infections treated regardless of symptoms due to increased with non-albicans spp., four or more recurrent risk for other pelvic and post-operative infec- infections in 1 year, or infections in high-risk tions. Extra consideration of this diagnosis should patient groups such as women with diabetes, be given to pregnant patients or those seeking to other vulvovaginal pathology, immunosuppres- become pregnant as BV has been associated with sion, or pregnancy. Patients with complicated low birth weight, premature rupture of mem- VCC may require more extended treatment and branes, and prematurity [64 ]. are more likely to fail standard treatment [67 ]. In Though not classically considered a sexually patients presenting with complicated VVC with transmitted infection, there may be a case for otherwise normal risk factors it is prudent to test partner testing and treatment of BV in the case of for an underlying risks such as diabetes or an WSW. In the aforementioned UK study, a signifi - immunocompromised state, such as previously cantly higher correspondence rate of 87 % was unknown HIV infection. seen in lesbian-identifi ed couples [ 63]. While this There are many treatment regimens and anti- was not associated with sexual practices that fungal agents available for VVC. Many patients increase the risk of exchange of vaginal secre- prefer oral fl uconazole and the standard regimen tions (such as toys) or with receptive oral sex, this of a one-time dose of 150 mg. For recurrent signifi cant concordance may necessitate partner infections a more intensive regimen with a sec- testing and treatment. This is an especially impor- ond dose of 150 mg fl uconazole 3 days after the tant consideration in refractory cases. fi rst has been shown to increase cure rates. In infections that fail -azole therapy, a 2-week regimen of 600-mg capsule boric acid intravaginally Vulvovaginal Candidiasis daily for 2 weeks is effective.

Candida infections are one of the three leading causes of vaginitis. This common infection hap- Trichomonas vaginalis pens in up to 75 % women and up to 5 % of these (Trichomoniasis) patients will experience recurrent episodes [65 ]. This is not traditionally considered in a sexually Trichomonas vaginalis is a protozoan parasite transmitted infection but has been associated that is largely sexually transmitted. Though prin- with higher numbers of female partners in WSW cipally transmitted through intercourse, there 254 A.J. Para et al.

Fig. 14.11 This image shows the hyphae and associated budding typical of vaginal candidiasis seen on light microscopy

have been reports of trichomonads spread through passive transmission through vectors such as shared damp washcloths or towels. In one study of lesbian couples with trichomoniasis, this was the suggested route of transmission in one concordant couple [68 ]. This infection may be present along with other causes of vaginitis, especially BV. Treatment of this condition is important to reduce partner transmission as well as reduction of transmission of HIV. In a recent study of trichomoniasis in HIV positive women, trichomoniasis was associated with higher HIV-1 viral shedding [69 ]. In the same study, trichomoniasis synergistically increased HIV viral shedding in patients who also had BV. Typically these infections are asymptomatic; however, it is one of the three most common causes of vaginitis in female patients. Rarely, it Fig. 14.12 This image shows trichomoniasis as seen on has been a cause of urethritis in male patients. light microscopy. These organisms are often confused Signs of infection with Trichomonas are typical with cervical squamous cells on Pap smear analysis vaginitis symptoms of odor, discharge, dyspareunia, and itching. The discharge of trichomoniasis examination of vaginal discharge (wet mount), tends to be copious, frothy, and often has a on which trichomonads can be seen as motile yellow-green tinge. Discharge of this quality ﬂ agellated organisms (see Fig. 14.12 ). There are should raise suspicion for this disease. Diagnosis also DNA probes for T. vaginalis , which may be can often be accomplished with microscopic of use if organisms are not found on wet mount 14 Sexually Transmitted Infections in LGBT Populations 255

Fig. 14.13 This image depicts the dome- shaped, pearly lesions typical of an infection with molluscum contagiosum virus

but diagnosis seems probable. Treatment of Infection with Pediculosis pubis should trichomoniasis is usually metronidazole as a prompt testing for other sexually transmitted one-time 2 g oral dose, though metronidazole at infections, as up to 30 % of patients with pubic 500 mg given orally three times daily for 7 days is lice are found to have another sexually transmit- an alternative. There is evidence of metronidazole- ted infection [71 ]. resistant T. vaginalis, including a case report in a lesbian couple [70 ]. Tinidazole is a reasonable fi rst option in the case of metronidazole- resistant Molluscum Contagiosum infections. Molluscum contagiosum is a poxvirus spread by skin-to-skin contact. Traditionally thought of as a Pediculosis pubis : Pubic Lice disease of children, these lesions are also a sexually transmitted infection and, when spread in Pubic Lice (or “crabs”) is an infestation with the this manner, are found in the anogenital region, louse Pedculosis pubis and characterized by pru- inner thighs, and lower abdomen. Typically the ritus in the genital and perianal region. The adult virus manifests as 2–5 mm diameter fl esh-toned, organism and nits are visible to the naked eye and papular lesions with central umbilication (see are diagnostic of this infection. Spread through Fig. 14.13 ). Most often the disease is self-limited, sexual contact, the lice are predominant in the and lesions are cleared within a few months, genital area. Though rarely infesting the scalp, though rarely they may persist for years. In the any region of hair is a potential site of infection, immunocompromised patient, a more severe especially the axilla. Treatment is with topical infection can occur with confl uence of multiple drugs such as malathion 0.05 % or permethrin lesions. These can mimic other infections and 5 %. Oral ivermectin 200 mcg/kg in two doses a biopsy may be required for diagnosis. week apart is a systemic option. Additionally, nit- Diagnosis is usually made by visual inspec- combs can be used to aid in decontamination. tion with the classic lesions; however, when per- Sexual partners should also be examined and formed, biopsy shows intracellular pox inclusion treated. Patients should be instructed to wash all bodies. While the disease is most often self- bedding and towels and dry on high heat. limited, treatment may be warranted for faster Anything that cannot be washed should be clearance and to prevent further spread via bagged for 72 h or longer to kill remaining lice. autoinoculation or to others via sexual contact. 256 A.J. Para et al.

There is no standard of care for treatment of the If infection is suspected highly and no mites are lesions, though most fi rst-line therapies are seen, it is prudent to treat empirically as diagnos- ablative (such as cryotherapy, curettage or elec- tic tests for scabies are not sensitive, and mites trocautery). Podophyllotoxin and, to a lesser are often diffi cult to isolate. extent, imiquimod have also been used for treat- Scabies infestations require medical and envi- ment. In immunocompromised patients with ronmental measures. Medical management of disseminated infection, trichloroacetic acid and the infestation can be accomplished with 5 % cidofovir have been studied as possible treat- permethrin cream overnight. This may require ment options. two treatments 1 week apart. An oral option is Infection with molluscum contagiosum should two doses of oral ivermectin (200 mcg/kg each, prompt further testing for other sexually trans- 1 week apart). Both may be required for patients mitted infections. with crusted scabies. Sexual partners should be examined for scabies and treated appropriately. The hypersensitivity reaction to scabies infesta- Scabies tions can last for weeks after the mites have been killed, so continued itching does not necessarily Sarcoptes scabiei (var. hominis ) is a human para- imply treatment failure. Patients may respond to sitic mite that burrows into the epidermis and lays sedating antihistamines, while corticosteroids eggs therein. In an immunocompetent host this should largely be avoided to prevent missed typically results in a strong immunologic response treatment failure. In addition to medical man- characterized by intense pruritus and raised, agement, patients should be advised to machine scaled lesions that follow the burrowed path of wash and dry on high heat any items with which individual mites. Transmission of mites is almost they have come into contact. Non-washable completely through skin-to-skin contact and, with items should be bagged and stored for 72 h to a predilection for intertriginous and genital kill remaining mites. regions, often can be transmitted during sexual activity. The burden of scabies infections varies widely across the globe, being as high as 43 % of Other Pathogens persons in some developing-world communities, though the prevalence in developed countries has While this chapter has discussed some of the been reported around 2–3 per 1000 [72 ]. major pathogens causing STI in the US (LGBT) The typical presentation of scabies is crusted population(s), there are others that are of interest, linear or serpentine lesions with intense itching; and which should be kept in mind in the appro- often these are located in the hands, wrists, priate clinical context. ankles, elbows, and genitals and intertriginous It is important to note that human herpesvi- regions. Crusted, or Norwegian, scabies is a ruses (HHV) can be spread through sexual con- superinfection of thousands to millions of mites tact (specifi cally, the exchange of body fl uids). and has been described in immunocompromised While not considered classic STI, both Epstein- hosts such as patients with advanced HIV infec- Barr virus (the etiologic agent of mononucleosis) tion [73 ]. Unlike the typical presentation of sca- and cytomegalovirus can cause a mononucleosis- bies, these patients present with non-pruritic, like syndrome, with fever and adenopathy hyperkeratotic, scaled plaques typically with an (including inguinal adenopathy). There are case acral distribution and resembling psoriasis. reports of Kaposi sarcoma (KS) in MSM who are Diagnosis in either case is made through skin not HIV+ [74 ]. Human herpesvirus-8, the etio- scrapings demonstrating mites, ovum, or feces. logic agent of KS, can be spread sexually, and Identifi cation of burrows may be aided by appli- should be considered in immunocompromised cation and subsequent removal of washable MSM who present with the characteristic skin/ marker as a means of highlighting the lesions. mucous membrane fi ndings of KS. 14 Sexually Transmitted Infections in LGBT Populations 257

The hepatitis viruses can also be spread by and recently some public health departments sexual contact. With case reports in the late have started immunization campaigns in select 1990s, hepatitis A was noted to be increasingly cities [82 ]. common epidemiologically in MSM, and shortly Thus, it is important for those who provide after, was added to the list of vaccines to be con- care for LGBT populations to be attuned to both sidered in special populations (specifi cally, traditional STI and non-traditional pathogens that MSM) [75 ]. More recently, sexual activity has may be transmitted along the networks of our been appreciated as an important mode of trans- LGBT patients. mission of hepatitis C, and the cause of several clusters of cases [76 ]. Both hepatitis C and hepatitis B are relatively highly prevalent and incident A Brief Discussion of Clinical in MSM populations, especially those who are Syndromes co-infected with HIV, and this remains the case despite the universal recommendation for hepati- Genital Ulcerative Lesions tis B vaccination [77 , 78 ]. In addition to these sexually transmitted Patients presenting with ulcerative lesions of the pathogens, some pathogens may be spread by genitals almost immediately raise concern for intimate (not necessarily sexual) contact and may sexually transmitted infection. Though other travel along networks. As LGB populations are, non-infectious etiologies (Behcet’s disease, in part, defi ned by their sexual activity, and sex- Crohn’s disease, drug reactions) may be the cul- ual activity often occurs within the context of a prit, in sexually active adults a sexually transmit- network, some pathogens may be encountered ted infection is the most common etiology. HSV disproportionately in LGB populations (as well and primary/secondary syphilis, respectively, as T populations) or subpopulations regardless of make up the vast majority of these cases. In 2012 sexual contact. HSV was the cause of about 240,000 offi ce visits For example, methicillin-resistant Staphyl [15 ]. 15,667 cases of primary and secondary ococcus aureus ( MRSA) , which can be spread Syphilis cases were reported to the CDC in 2012 by any form of intimate or close contact [ 15]. Chancroid (caused by the bacterium (amongst other modes of transmission), has Haemophilus ducreyi ) is the other most common been reported in clusters of MSM whose only cause, and in comparison had 15 reported cases exposure was sexual contact [79 ]. Not all cases in 2012 [15 ]. Other sexually transmitted infec- of transmission of MRSA lead to identifi able tions that cause ulcerative lesions are lympho- disease; some lead to colonization, though the granuloma venereum (C. trachomatis ) and two are correlated. Some studies have not granuloma iguinale (Klebsiella granulomatia ). shown higher rates of carriage of MRSA in Though these are both rarer, of note LGV when MSM when compared to the general population seen in more developed countries was associated [80 ], lending support to the hypothesis that the with MSM sexual activity [83 ]. increase in MRSA infections seen in MSM may History and physical exam are the most useful be due to spread along (sexual) networks, or in in determining the etiologic agent of ulcerative some other more limited way, rather than by genital disease. The typical HSV presentation is higher colonization rates of the MSM popula- multiple, painful and burning vesicular lesions tion in general. with occasional bilateral lymphadenopathy. Recently, an outbreak of invasive meningo- Primary syphilitic lesions are classically pain- coccal disease has been reported in MSM in less, indurated, and with clean bases. Chancroid certain urban areas [81 ]. In these cases, it is often presents with multiple, painful, ragged- unclear that sexual contact has played a role in edged ulcerations with classically unilateral, sup- transmission. Regardless, many have advocated purative lymphadenopathy. In contrast, the immunization of MSM against meningococcus, ulcerative lesion of LGV is less commonly seen, 258 A.J. Para et al. while bilateral, suppurative adenopathy raises First-void urinalysis can be used to look for suspicion for this etiology. Finally granuloma presence of leukocyte esterase (a nonspecifi c iguinale has a classic beefy, granular ulceration indicator of urogenital tract infection) or white without true adenopathy. blood cells on microscopy (≥10 WBC per high- Given the potential overlap in presentation, power fi eld). Once a diagnosis of urethritis is and the possibility of atypical presentation, diag- made (or heavily suspected), further etiological nostic testing becomes critical. The most useful testing is indicated to ensure proper treatment. tests are HSV PCR of a swab of the lesion (though This primarily includes NAAT for GC and CT. culture and/or Tzanck smear may be useful in Treatment should be started immediately upon certain circumstances), RPR (or treponemal anti- diagnosis. Specifi c therapy for GC and CT are body test), and Gram stain from the edge of the discussed in their respective sections above. It is ulcer (if chancroid is suspected). In the MSM important to note that, although azithromycin population, especially those with recent interna- and doxycycline are approved antibiotic regi- tional travel, LGV PCR or serology may be con- mens for the treatment of NGU, azithromycin has sidered. When the etiology remains unclear with proved superior in the treatment of M. genitalium the above means, biopsy is warranted. For more urethritis [85 ]. If a patient fails initial therapy and information on HSV, Syphilis, and LGV please noncompliance and pathogen reexposure are see the respective pathogen sections above. ruled out, further diagnostic testing for HSV or T. vaginalis may be indicated. HSV diagnosis and treatment is discussed above. Of note, MSM are Urethritis at low-risk for T. vaginalis unless they also participate in sexual intercourse with women [22 ]. Symptomatic urethritis in men is classically characterized by mucopurulent or purulent urethral discharge, dysuria (pain on urination), Proctitis and/or urethral pruritus. Infectious urethritis as a syndrome is classically divided by etiology into Clinically, proctitis in men is characterized by gonococcal urethritis and non-gonococcal ure- infl ammation of the distal 10–12 cm of the ano- thritis (NGU). Gonococcal urethritis is caused by rectum and is associated with anorectal pain, Neisseria gonorrhoeae as its name suggests. anorectal discharge, and/or tenesmus (a persis- NGU most commonly results from infection with tent sensation of needing to pass stool despite an Chlamydia trachomatis, but Mycoplasma genita- empty rectal vault). This syndrome must be dif- lium , Trichomonas vaginalis , HSV-1 and -2, and ferentiated from proctocolitis and enteritis, which adenovirus may also be responsible [84 ]. Many involve more proximal regions of the gastrointes- cases of NGU may not have an identifi able etiol- tinal tract and are caused by different pathogens ogy upon comprehensive laboratory analysis despite possible overlapping clinical pictures. As [85 ]. Empiric therapy is thus recommended mentioned above, the majority of cases of gono- regardless of the outcome of diagnostic studies coccal and chlamydial proctitis in MSM are when treating men with symptoms of urethritis. asymptomatic, highlighting the need for effective A health care provider’s fi rst step in assessing screening strategies. Besides CT and GC, a patient with possible urethritis should be to Treponema pallidum (i.e. syphilis) and HSV-1 establish clinical evidence of disease. Providers and -2 must also be considered as possible etiolo- should look for urethral discharge when examin- gies of infectious proctitis [22 ]. ing a patient. If available, Gram stain of discharge Providers should ensure they are completing can detect elevated white blood cell counts (≥5 effective sexual histories to screen for men who WBC per oil immersion fi eld, suggestive of ure- may participate in receptive anal intercourse as this thritis) and/or Gram-negative intracellular diplo- is the sexual behavior that primarily puts patients at cocci (diagnostic for gonococcal urethritis). risk for infectious proctitis. Patients should be 14 Sexually Transmitted Infections in LGBT Populations 259 examined for rectal discharge or any external above. Though infl ammatory and atrophic ulcerative lesions. Anoscopy may be necessary to changes can also be to blame, these are not dis- visualize more proximal areas of the distal rectal cussed here. mucosa. Diagnostic and therapeutic information This clinical syndrome should raise concern for for the pathogens mentioned above (i.e. GC, CT, an infectious cause as over 90 % of cases are due HSV-1 and -2, syphilis) are discussed in their to an infection or overgrowth of natural fl ora. respective sections. When seeing a patient with these complaints a pelvic exam with careful examination of the vulvar skin for evidence of infection is warranted. Cervicitis Samples for wet mount, potassium hydroxide testing, the amine whiff test, and pH testing are advis- Infl ammation of the uterine cervix is often an able in almost all cases. These should be taken asymptomatic condition discovered on routine from the mid-portion of the vagina to avoid con- health maintenance. When patients present with tamination with cervical mucus. Specifi c DNA symptoms, typical complaints include mucopuru- probes for the most common causes may be war- lent discharge, post-coital bleeding or intermen- ranted if the above testing and physical exam are strual spotting, dysuria, dyspareunia, or non-diagnostic. Finally, depending upon the risk vulvovaginal irritation. The most common causes factors of the patient, remembering that identity of this condition are gonorrhea and chlamydia , does not determine sexual behavior, DNA amplifi - which are discussed in detail earlier in the chapter. cation testing for gonorrhea and Chlamydia may Patients with the above symptoms warrant a also be a consideration. pelvic exam. If cervical motion or adnexal tenderness is elicited, NAAT for gonorrhea and Acknowledgement Figures used with permission from: chlamydia should be performed. There are no Gross G and Tyring SK, eds. Sexually Transmitted prominent reports of transmission of the afore- Infections and Sexually Transmitted Diseases. 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Purpose Overview

The purpose of this chapter is to explore the der- Dermatology is more than just skin deep. It is the matologic needs of and services available to the study of the skin, hair, nails and mucosa. Findings LGBTI community. may represent primary diseases, manifestations of an internal insult, or consequences of an external event. Of the thousands of dermatologic condi- Learning Objectives tions, those affecting most LGBT patients will be equivalent to that of the general population, with • Describe differences in dermatologic disease the same most-common conditions being acne, presentation and frequency within LGBT eczema, seborrheic dermatitis, psoriasis, infections patients, refl ecting the community’s diverse and skin cancer. Explored in this chapter are these sexual practices (PC5) and other conditions, with attention to how their • Defi ne the three major ways that HIV can rates, causes and presentations may differ in this affect the skin (PC5) population. In addition, the roles of a dermatologist • Describe the work-up and various presenta- in the care of the LGBT individual are examined, tions of common sexually transmitted infec- such as in treating these conditions, uncovering tions (STIs), including HPV, herpes, and systemic disorders, encountering behavioral and syphilis (PC1, PC2, PC6) environmental effects, and providing cosmetic • Identify at least 3 ways how cosmetic derma- options for the transitioning transgender patient. tology can play a role in the transitioning pro- Dermatology has its own unique language, cess, providing non-invasive options for facial and it may therefore be helpful to browse the fol- transformation (PC3, PC4) lowing list of defi nitions of commonly used terms that will be encountered in this chapter:

• Alopecia—hair loss • Atrophy—thinning of the skin B. Ginsberg , M.D. (*) • Blanching—loss of redness with pressure The Ronald O. Perelman Department of • Bulla—a raised lesion greater than 1 cm in Dermatology, NYU Langone Medical Center , New York , NY , USA diameter ﬁ lled with clear ﬂ uid e-mail: [email protected] • Crust—dried blood, serum, or pus

• Ecchymosis—bruise from extravasated red cies vary when compared to the general popula- blood cells tion. Men who have sex with men (MSM) and • Erosion—loss of part of the epidermis transgender women have an increased prevalence • Erythema—redness of most sexually transmitted infections (STIs), • Exanthem—a rash in the setting of a viral not limited to HIV, anogenital warts, herpes sim- illness plex, syphilis, gonorrhea, chlamydia and infec- • Excoriation—skin injury due to scratching tious hepatitis [ 1 ]. Women who have sex with • Fissure—linear cut into the skin women (WSW), on the other hand, have reduced • Glabrous— ha irless rates of most STIs, but it should not be assumed • Hyperkeratosis—thickened stratum corneum; that this risk is zero [ 2 ]. Many STIs are transmis- scale sible by oral sex, vaginal-vaginal intercourse, and • Hypertrophic—thickening of the dermis; skin sex-toy use. Furthermore, a signifi cant percent- lines are not accentuated age of WSW is currently having or has at one • Lichenifi cation—thickening of the epidermis; point also had sex with men [3 ]. skin lines are accentuated Another factor affecting the diverse STI pat- • Macule—a fl at lesion less than 1 cm in terns in the LGBT community is the manner in diameter which the infections are obtained. Aside from • Morbilliform—measles-likes; generalized common presentations on genitalia, diseases may coalescing red macules and/or papules present perianally if the patient engaged in recep- • Nodule—a rounded lesion with a prominent tive anal sex or oral-anal contact, the latter also deep component attributing to perioral presentations as does oral- • Papule—a raised lesion less than 1 cm in genital sexual activity. For post-operative trans- diameter gender patients, the presentation and prevalence • Patch—a fl at lesion greater than 1 cm in of an STI may refl ect the donor tissue used for the diameter neogenitalia. All of the above refl ects the impera- • Paronychia—infl ammation of the nail unit tive to take a thorough sexual and, in the case of • Petechiae—small, non-blanching, red mac- transgender patients, surgical history. ules from extravasated blood Furthermore, non-infectious etiologies should • Plaque—a raised lesion greater than 1 cm in always remain in the differential diagnosis diameter (Table 15.1 ) (Fig. 15.1a–f ). • Pruritus—itch • Purpura—large, non-blanching, red patches from extravasated blood HIV and AIDS • Pustule—a raised lesion less than 1 cm in diameter fi lled with purulent fl uid Nearly 1.1 million people in the United States are • Ulcer—loss of the full epidermis or deeper currently living with HIV infection. Of the • Xerosis—dryness 50,000 new cases each year, approximately 75 % are in MSM, with a disproportionately elevated rate in young African American men [ 4 ]. The Center for Disease Control estimates an even Sexually Transmitted Infections higher prevalence amongst transgender women, with data from outside of the United States Sexual practice has long been a focus of LGBT showing HIV rates as high as 50 times that of the healthcare, and is one of the major factors that general population [5 ]. contribute to the spectrum of the community’s There are three principle ways that HIV affects dermatologic concerns. While the disease entities the skin: primary infection, secondary disease are not unique, their presentations and frequen- prevalence, and medication side effects. 15 Dermatology 265

Table 15.1 Common non-infectious causes of anogenital disease Inﬂ ammatory diseases Benign growths Malignant growths • Psoriasis • Epidermoid cysts • Erythroplasia of Queyrat • Lichen planus • Angiokeratomas • Bowenoid papulosis • Lichen sclerosis et atrophicus • Acrochordons (skin tags) • Squamous cell carcinoma • Lichen simplex chronicus • Pearly penile papules (penis only) • Extramammary Paget’s disease • Contact dermatitis [from • Vestibular papillomatosis (vulva only) • Melanoma condoms, lubricants, wipes] • Fixed drug eruption • Zoon’s balanitis

Fig. 15.1 Non-infectious anogenital diseases: (a ) Psoriasis, (b ) Inverse psoriasis, (c ) Lichen planus, (d ) Lichen sclero- sus et atrophicus, (e ) Eczema, (f ) Skin tags

Primary HIV Infection (Acute Retroviral the rash typically persists only 4–5 days. Syndrome) Blanching, red macules and papules coalesce Primary HIV infection is deﬁ ned by HIV viral centrally on the trunk and proximal extremities presence in the blood prior to antibody forma- and progress caudally, reminiscent of other viral tion. While many patients are completely asymp- exanthems or drug eruptions (Fig. 15.2 ). Oral and tomatic, up to 80 % experience a viral syndrome anogenital ulcerations sometimes develop. Being that can include fever, sore throat, lymphadenop- that this occurs prior to antibody formation, sero- athy, and a morbilliform rash. This occurs 2–4 logic testing is often negative, and direct DNA or weeks after exposure and, while the systemic RNA detection may be indicated if HIV is sus- syndrome may last from days to over 10 weeks, pected [6 ]. 266 B. Ginsberg

Fig. 15.2 Primary HIV infection—morbilliform eruption

sarcoma (Fig. 15.3b). Eruptive atypical nevi Helpful Hint (moles) may develop, and melanoma risk is The most common causes of a diffuse mor- increased. CD4 counts below 250 cells/mm2 are billiform eruption are viruses, medications associated with less common infectious processes, and id reactions [ 7]. HIV, being a virus, including disseminated or resistant herpes and should always remain on the differential, molluscum, extrapulmonary tuberculosis, bacil- and tested for if at risk. An id reaction is a lary angiomatosis, and deep fungal infections (Fig. generalized inﬂ ammatory response to a 15.3c ). A patient with extremely low CD4 counts, distant skin disease (typically tinea, aller- below 50 cells/mm 2 , may have abnormal presenta- gic contact dermatitis, or stasis dermatitis), tions of common infections, such as giant mol- which resolves with the treatment of the lusca and CMV-induced perianal ulcers, or unique underlying condition. infectious etiologies, including cutaneous Mycobacterium avium complex (Fig. 15.3d ) [8 ].

Diseases with Increased Incidence Helpful Hint in HIV-Positive Patients Kaposi sarcoma (KS) is not unique to HIV/ While some skin conditions are AIDS-deﬁ ning, AIDS patients. Several cases have been numerous common dermatoses are more prevalent reported in HIV-negative MSM, clinically in HIV-positive patients even with normal CD4 appearing like classic KS, an indolent dis- T-cell levels. These include inﬂ ammatory disor- ease of the distal extremities otherwise ders, such as psoriasis, and common infections, affecting elderly men of Southern and including tinea and warts. The most common con- Eastern European descent [9 ]. This occur- dition affecting HIV-positive patients is folliculi- rence is likely due to the increased preva- tis, followed by condyloma, seborrheic dermatitis, lence within the MSM population of and generalized xerosis (Fig. 15.3a ). As counts Human Herpesvirus 8, the virus most com- drop below 500 cells/mm 2, cutaneous malignancy monly linked to all variants of KS, includ- risk begins to increase, including basal and squa- ing two other variants endemic to Africa. mous cell carcinomas, cutaneous non-Hodgkin Nevertheless, HIV must always be ruled out. lymphoma, Merkel cell carcinoma, and Kaposi 15 Dermatology 267

Fig. 15.3 HIV-associated dermatoses: (a ) Seborrheic dermatitis, ( b ) Kaposi’s sarcoma, ( c ) Histoplasmosis, (d ) Giant molluscum contagiosum

Treatment-Associated Dermatoses frequently used by HIV-positive patients, espe- The advent of highly active antiretroviral ther- cially trimethoprim-sulfamethoxazole, a com- apy (HAART) revolutionized the care of HIV- mon prophylaxis against Pneumocystis jiroveci positive patients, but not without cutaneous pneumonia [12 ]. effects. The initiation of treatment may result in One notable side effect of protease inhibitors the Immune Reconstitution Infl ammatory and nucleoside reverse-transcriptase inhibitors is Syndrome (IRIS), with worsening of an infec- lipodystrophy [13 ]. It manifests as a loss of fat in tious, infl ammatory, or even neoplastic etiology the face and extremities, with a gain of fat in the [10 ]. Individual HAART medications have their upper back, breasts, and viscera. There is no own toxicities, ranging from non-specifi c rashes known method to reverse HAART-induced lipo- and other mild effects (nail darkening, alopecia) dystrophy. However, Sculptra® (poly-L -lactic to severe presentations, not limited to hypersen- acid) is an injectable synthetic fi ller that is FDA- sitivity syndromes, Stevens-Johnson syndrome, approved for the correction of facial lipoatrophy, and Toxic Epidermal Necrosis (Table 15.2 ) (Fig. providing up to 2 years of dramatic cosmetic 15.4 ) [ 11 ]. These potentially fatal eruptions may improvement via volume replacement (Fig. also be caused by non-HAART medications 15.5a, b ) [14 ]. 268 B. Ginsberg

Table 15.2 Dermatologic manifestations of commonly subtypes associated with sexual transmission are used HAART medications HPV-6 and -11 and portend no malignant poten- Medication Dermatosis tial. However, infection with oncogenic subtypes, Abacavir Hypersensitivity syndrome/ most commonly HPV-16 and -18, is clinically DRESS indistinguishable [16 ]. Emtricitabine Xerosis, rash, palmoplantar Clinical presentation of HPV infection refl ects hyperpigmentation its mode of acquisition. Condyloma accuminata Lamivudine Paronychia, alopecia, rash, pruritus (anogenital warts) are obtained during either pen- NNRTIs (i.e. Morbilliform eruption, SJS/ etrative or receptive intercourse. Appearance can Efavirenz, Nevirapine, TEN, DRESS range from skin-colored to hyperpigmented and Rilpivirine) from fl at papules to fungating masses. They Protease Inhibitors Morbilliform eruption, SJS/ develop on the penis, vulva, perineum, perianal (i.e. Atazanavir, TEN, lipodystrophy, Darunavir, Ritonavir) paronychia, periungual skin, or associated folds, and may proceed pyogenic granulomas, intraorifi cially, including intravaginally and pruritus, xerosis intra-anally (Fig. 15.6a, b ). They have also been Raltegravir Rash, SJS/TEN, DRESS described on the neovaginas of post-operative Tenofovir Rash transgender women, including one case of con- Zidovudine Pigmentation (nails, skin, dyloma gigantea, a rapidly growing, locally mucosa), rash, vasculitis, destructive, but non-malignant variant [ 17 , 18 ]. lipodystrophy, acral erythema Oral sex can also transmit HPV and lead to peri- Note: “Rash” includes morbilliform, pustular, and urticarial eruptions oral and intraoral manifestations (Fig. 15.6c ). SJS Stevens-Johnson syndrome, TEN toxic epidermal Malignant subtypes must be considered with necrosis, DRESS drug reaction with eosinophilia and sys- an HPV diagnosis, given the concern for squa- temic symptoms mous cell carcinoma. HPV is responsible for 5 % of all cancers, notably penile, vulvar, vaginal, cervical, anal, and oropharyngeal carcinomatosis [19 ]. Perivaginal and perianal condyloma may warrant an internal exam with Papanicolaou smear to assess mucosal involvement, including condyloma of neovaginas, given the many reported cases of neovaginal HPV-associated malignancy. Other less common HPV-induced malignancy-associated lesions include bowenoid papulosis and erythroplasia of Queyrat. Diagnosis of benign variants is usually made clinically. The differential diagnosis includes molluscum contagiosum, another viral STI appearing as umbilicated, dome-shaped papules (Fig. 15.6d). If the lesions are uncharacteristic, Fig. 15.4 Zidovudine-induced nail hyperpigmentation resistant to treatment, or with any concern for malignancy, a biopsy can be taken for histopatho- Human Papillomavirus logic examination for atypia. In addition, HPV typing is obtainable for these samples to assess There are approximately 120 genotypes of malignant potential. Human Papillomavirus (HPV) affecting the skin Prevention is essential for HPV given its onco- and mucosa with differing clinical appearances, genicity, with condoms being fi rst-line. Several most typically in the form of warts (papilloma, studies have shown that sex toys, even after condyloma, verruca) [15 ]. The most common washing, carry HPV at high rates; therefore, 15 Dermatology 269

Fig. 15.5 HIV-associated lipoatrophy: ( a) before, and ( b) after a series of Sculptra injections (10 vials). *Credit to Dr. Linda Franks counseling about condom use on dildos and herpes. Herpes is very common in the general vibrators should be considered [20 ]. Another way population, with one third of people experienc- of HPV prevention is through vaccination. ing a symptomatic oral or anogenital infection, Gardasil® is a quadrivalent vaccine protecting and one in six people between the ages of 14 to against HPV subtypes 6, 11, 16, and 18, account- 49 having genital herpes, many of which are ing for the majority of benign and malignant asymptomatic [23 ]. Rates in both MSM and/or lesions [21 ]. If already infected, treatment options HIV-positive patients are even higher [ 24]. include destructive therapies (liquid nitrogen, tri- While HSV-1 accounts for most cases of oral chloroacetic acid, electrodessication), cytotoxic herpes (gingivostomatitis, cold sores) and agents (podophyllotoxin), local immunoregula- HSV-2 induces the majority of anogenital tion (interferon, imiquimod), or if large or malig- herpes, both genotypes may cause either entity. nant, surgery [22 ]. In fact, HSV-1 now accounts for the majority of cases of anogenital herpes in young adults in many developed countries, including the Helpful Hint United States, Canada, and the United While perianal papules should be suspi- Kingdom [ 25]. cious for sexually transmitted diseases, Regardless of anatomic site or genotype, her- including condyloma or molluscum, the pes simplex presents as grouped vesicles, pre- diagnosis of hemorrhoids must be consid- ceded or accompanied by pain, and lasts for ered prior to biopsy or treatment to avoid approximately 1 week (Fig. 15.7a, b ). Some vascular compromise. cases present as non-healing ulcers, especially on perianal skin or in HIV-positive patients with low CD4 counts (Fig. 15.7c ). In many cases, active disease is clinically asymptomatic and yet still Herpes Simplex Virus (HSV) contagious to sexual partners, including the majority of anogenital infections [26 ]. Herpes can The Herpesvirus family comprises 8 major also affect non-orogenital mucocutaneous surfaces, genotypes, with HSV-1 and -2 producing all including the ﬁ ngers (herpetic whitlow), torso forms of herpes simplex, or more colloquially, (herpes gladiatorum), eyes (herpes keratoconjunc- 270 B. Ginsberg

Fig. 15.6 ( a) Condyloma accuminata (penis). (b ) Condyloma accuminata (perianal). (b) Condyloma accuminata (tongue). (d ) Molluscum contagiosum tivitis), central nervous system (herpes meningi- can be taken either as needed for outbreaks or as tis), or pre-existing patches of eczema (eczema chronic suppressive therapy [29 ]. herpeticum) (Fig. 15.7d ) [27 ]. Diagnosis is usually made clinically. Vesicle fl uid can be sent for viral DNA PCR, directly Syphilis visualized for cytopathic change with a Tzanck smear, or stained for immunofl uorescence with Syphilis is a bacterial infection caused by the spi- an HSV-specifi c antibody. Serologic testing is rochete Treponema pallidum. It is obtained available, and, less commonly, a lesional biopsy through sexual contact, with the primary chancre can be performed for histopathologic confi rma- occurring almost exclusively on anogenital skin. tion [28 ]. While herpes usually persists for a life- Approximately 5 % of cases of primary syphilis time, attributing to its latency in local dorsal root occur on extragenital locations, including the ganglia, treatment is with antiviral therapies and lips, perianal skin, and several documented cases 15 Dermatology 271

Fig. 15.7 ( a) Herpes simplex (genital). (b ) Herpes simplex (labialis). (c ) Herpes simplex (genital) in an immunocompromised HIV-positive patient. ( d ) Herpetic whitlow on the fi nger acquired through mutual masturbation features may include oral mucous patches and and digital-anal acts [30 , 31 ]. perléche, moth-eaten alopecia, and anogenital Primary syphilis presents approximately 3 condylomata lata. This stage is also frequently weeks after infection (ranging from 10 to 90 preceded or accompanied by systemic symptoms, days). It begins as a solitary papule that develops including fever, malaise, lymphadenopathy, and into a painless, well-circumscribed, fi rm ulcer other fl u-like symptoms. Ocular involvement (chancre), usually accompanied by local lymph- should also be ruled out. Secondary syphilis will adenopathy (Fig. 15.8a ). As this lesion is pain- spontaneously resolve in 3–12 weeks even if less, many cases often go undiagnosed [32 ]. untreated. The large variety of presentations of If untreated, the primary lesion regresses secondary syphilis has given it the reputation of within weeks and dissemination will occur simul- being the great imitator in dermatology [33 ]. taneously or up to 6 months later, resulting in Untreated cases of secondary syphilis then secondary syphilis in almost all cases. There are enter a latency phase, which may persist indefi - a variety of mucocutaneous manifestations of nitely as in 70 % of cases, or progress to tertiary secondary syphilis, with most people presenting (or “late”) syphilis after months to years. At this with generalized, non-pruritic, copper-colored, stage, organisms may invade and cause scaly papules, notably also present on the palms symptoms to major organs, including the car- and soles, and sometimes with involvement of diovascular, musculoskeletal, and central ner- the hairline (corona veneris) (Fig. 15.8b–d ). Other vous systems. 272 B. Ginsberg

Fig. 15.8 ( a ) Primary syphilis chancre. (b ) Secondary syphilis eruption. (c ) Secondary syphilis—palmar involvement. (d ) Secondary syphilis—condylomata lata

The most sensitive and specifi c diagnostic for antibodies to T. pallidum (MHA-TP) or the method for detecting primary syphilis is by direct fl uorescent treponemal antibody absorption assay spirochete visualization with darkfi eld micros- (FTA-ABS)] [34 ]. copy, although this is typically not available to Treatment for syphilis is with antibiotics, most providers. All stages of syphilis can be with dosing, course and antibiotic choice vary- detected with serologic testing for cardiolipin, a ing by stage. Penicillin is the preferred fi rst-line non-specifi c membrane lipid present in 80 % of treatment for all stages if not allergic. The treat- cases [as measured by the rapid plasma reagin ment regimen does not vary based on HIV sta- (RPR) and Venereal Disease Research Laboratory tus. After treatment, the CDC recommends (VDRL) assays]. Confi rmation is by treponemal- clinical and laboratory evaluation with non- specifi c tests [the microhemagglutination assay treponemal serologies at 6 and 12 months, with 15 Dermatology 273

vaginal infection with Trichomonas vaginalis should also be considered when there is itch without rash. Chronic pruritus and associated scratching may induce various skin changes, including lichen simplex chronicus, which should be recognized as a secondary phenomenon (Fig. 15.9 ). Diagnosis is made by culture, DNA hybridization or PCR [38 ]. Treatment is often directed at both organisms, given the high rates of co-infection, and tailored to sensitivities if available [ 39 ]. Lichen simplex chronicus, if present, is treated with topical corticosteroids. Of note, disseminated Neisseria gonorrhea may present as an arthritis-dermatosis syndrome, with hemorrhagic pustules on distal extremities, often over joints. Non-dermatologic manifesta- Fig. 15.9 Lichen simplex chronicus of the vulva tions of both diseases include pelvic inﬂ ammatory disease, from direct spread, or involvement more frequent evaluations in HIV-positive of internal organs if disseminated [40 ]. patients at 3, 9, and 24 months as well. Treponemal-speciﬁ c testing will remain positive despite treatment, so should only be used Candida diagnostically. Sexual partners may also be considered for testing [35 ]. While Candida spp., a common yeast commensal in many women, is not classically felt to be an STI, it may be spread through sexual contact, including vaginal-vaginal actions [ 41]. It can Helpful Hint affect any aspect of the anogenital region. The Any generalized eruption with involve- skin becomes beefy red with discrete satellite ment of the palms or soles is highly suspi- lesions and, sometimes, pustules. When only cious for secondary syphillis affecting the penis, it presents as balanitis or bal- anoposthitis, could become eroded, and the associated edema in an uncircumcised man may prevent foreskin retraction. In male groin infec- Gonorrhea and Chlamydia tion, the scrotum may be involved, helping to distinguish it from tinea cruris (jock itch), which Gonorrhea and chlamydia are bacterial STIs spares this area (Fig. 15.10a, b). Vulvar infec- caused by Neisseria gonorrhea and Chlamydia tions frequently are associated with curdy, white trachomatis , respectively. They most commonly vaginal discharge (Fig. 15.10c ). Fissures often cause urethritis, presenting as dysuria and accompany perianal infection [42 ]. urgency, and don’t directly cause cutaneous man- Diagnosis is made with a fungal swab and cul- ifestations other than pruritus. Therefore, they ture. Treatment is with topical antifungals alone should be considered in the differential diagnosis when only cutaneous involvement is present, but of pruritus without rash of the genitals or anus, may require systemic treatment if severe or depending on sexual practice [ 36]. Cases have refractory. Vaginal involvement requires either also been documented in the neovaginas of post- intravaginal suppositories or oral antifungal ther- operative transgender women [37 ]. In WSW, apy [43 ]. 274 B. Ginsberg

Fig. 15.10 ( a ) Candidiasis (note scrotal involvement). (b ) Tinea cruris. (c ) Candida vulvovaginitis

Hepatitis B & C nodosa (PAN), a small- and medium-vessel vasculitis presenting cutaneously as tender, ulcerat- The hepatitis B virus (HBV) is a double-stranded ing, subcutaneous nodules along vascular tracts, DNA hepadnavirus spread through sexual activ- usually of the distal lower extremities. The other ity or other contact with blood. Acute infection skin presentation of PAN is livedo racemosa, a with HBV may cause serum sickness: urticaria net-like purpura, which may occur in conjunction or, less commonly, urticarial vasculitis accompa- with or irrespective of the tender nodules. Severe nied by ﬂ u-like symptoms (Fig. 15.11a ). This systemic involvement may be present and should often precedes clinically apparent liver disease be assessed, especially renal, cardiovascular and by up to 6 weeks [44 ]. Longer standing HBV neurologic. Skin-limited PAN is more typically infection has been associated with polyarteritis associated with hepatitis C [45 , 46 ]. 15 Dermatology 275

Fig. 15.11 ( a) Urticaria in the setting of serum sickness. (b ) Lichen planus. (c ) Lichen planus, oral-ulcerative subtype

The hepatitis C virus (HCV) is a single- hands [ 48]. As opposed to PAN, the vasculitis stranded RNA ﬂ avivirus spread primarily associated with HCV is a small-vessel leukocy- through blood exposure and less commonly toclastic vasculitis due to circulating cryoglobu- through sexual activity, although still presenting lin, presenting as palpable purpura of the lower at increased rates in the MSM and HIV-positive extremities [ 49 ] Approximately 84 % of cases of populations. Associated with HCV and not HBV type II cryoglobulinemia are associated with is lichen planus, which presents as pruritic, pink- HCV infection. Finally, a rare dermatosis called purple, polygonal papules with scale [ 47 ] (Fig. necrolytic acral erythema is almost universally 15.11b ). Many cases also have oral involvement, linked to HCV and manifests as painful, well- and when ulcerative, is the most suspicious sub- demarcated, annular plaques with raised, red, type for HCV infection (Fig. 15.11c ). HCV has crusted borders on the distal extremities [ 50]. In also been linked to porphyria cutanea tarda, a all of the above conditions, treatment of the photodermatosis in which blisters develop in underlying infectious hepatitis may improve the areas of sun exposure, classically the dorsal cutaneous pathologies. 276 B. Ginsberg

Methicillin-Resistant Staphylococcus benefi t, and should only be used if the abscess is aureus associated with cellulitis or phlebitis, there are signs of systemic involvement, the patient has Staphylococcus aureus is a common bacterial relevant comorbidities or immunosuppression, or pathogen of the skin. Methicillin-resistant an I&D has already failed. Oral antibiotics should strains have been documented since the early also be prescribed for abscesses on diffi cult-to- 1960s, initially spread nosocomially, which drain sites, including the face, hands, and genita- emerged to be a community-acquired threat in lia [54 ]. the new millennium. Currently, Methicillin- Resistant Staphylococcus aureus (MRSA) may be the most common cause of purulent skin and soft tissue infections in the United States, with a Helpful Hint disproportionally higher rate in MSM and/or Local antibiograms can be obtained from HIV-positive individuals [51 , 52 ]. nearby hospitals and microbiology The most common presentation of S. aureus laboratories. skin infection, including MRSA, is as an abscess (furuncle). These may be very large and even necrotic, often causing a surrounding cellulitis (Fig. 15.12). Other types of pathologies may be mild, such as folliculitis or impetigo, or rarely more Skin as a Sign of Behaviors severe, including staphylococcal scalded skin syn- and Comorbidities drome, necrotizing fasciitis or toxic shock [53 ]. Diagnosis is made by wound culture, and The LGBT population has an increased preva- treatment is with antibiotics tailored to the sensi- lence of psychiatric comorbidities and high-risk tivities. If warranted, empiric antibiotic therapy is behaviors. As many of these entities carry a often started before sensitivities return, and stigma, the patient may be unlikely to disclose should be chosen based on patient demographics, important information that could substantially community MRSA prevalence, and local antibio- affect their health. It is therefore the physician’s grams. Topical or oral antibiotics are used in mild responsibility to recognize clues that reveal these infections, with severe cases requiring intrave- hidden practices. Even without a history, the skin nous therapy. For a simple abscess, an incision can provide signifi cant insight into underlying and drainage (I&D) is the only necessary pathologies and actions. treatment. Antibiotics do not provide additional

Substance Abuse

LGBT individuals have an increased rate of substance abuse compared to the general population, especially in the youth demographics [ 55 ]. Substance abuse directly impacts the health of the individual, and further increases the likelihood of participating in other high-risk behaviors, including unprotected sexual intercourse [56 ]. Skin manifestations of alcohol abuse have been shown to occur in 43 % and 33 % of affected men and women, respectively [57 ]. Non-speciﬁ c changes include photodistributed grey-brown Fig. 15.12 MRSA hyperpigmentation, nail changes, and increased 15 Dermatology 277

Fig. 15.13 ( a ) Lichen simplex chronicus. (b ) Prurigo nodularis. (c ) Macular amyloidosis

tis, and nummular eczema, all have increased prevalence in alcohol abusers. Oral mucosal changes include an atrophic red tongue, a sign of

vitamin B12 defi ciency, or chronic gingival infl ammation. Finally, many types of cutaneous malignancy are increased, including aggressive, infi ltrative basal cell carcinomas and oral squamous cell carcinomas [59 ]. Mucocutaneous signs of drug abuse vary based on the offending substance (Table 15.3 ). All types of substance abuse portend to increased infection rates. Polymicrobial infections involving bacteria and yeast are common and antibody- resistant strains may predominate. Infections often present locally at the place of drug entry, such as cellulitis, abscess, pyomyositis or necrotizing fasciitis. Systemic infections have cutaneous manifestations, including palmar Janeway Fig. 15.14 Spider telangiectasia lesions, digital Osler nodes and nail splinter hem- orrhages of bacterial endocarditis. Furthermore, pruritus, with possible associated secondary there is an increased transmission of HIV and changes from scratching (Fig. 15.13a–c ). viral hepatitis, each with their associated derma- Vascular changes include spider telangiectasia, toses detailed earlier in this chapter. cherry angiomas, fl ushing, palmar erythema, and prominent abdominal vasculature (caput medu- sae) (Fig. 15.14). This is particularly relevant as Body Image Concerns increased spider telangiectases in alcohol abusers are associated with higher rates of esophageal Members of the LGBT population have diverse varicosities [58 ]. Skin signs of visceral disease body image issues given the differing social pres- may be apparent, including jaundice, refl ecting sures within their individual communities. Gay concomitant hyperbilirubinemia. Common der- men are at a greater risk than their heterosexual matoses, including psoriasis, seborrheic dermati- counterparts for wanting to either be thinner or 278 B. Ginsberg

Table 15.3 Mucocutaneous signs of drug abuse the physician. They often desire unnecessary or Drug Skin manifestation extreme amounts of products and procedures, and Cocaine Vasculitis frequently are not satisfi ed with the outcomes. Raynaud’s phenomenon BDD can be classifi ed as either a delusional Acute generalized disorder, a variant of obsessive-compulsive disor- exanthematous pustulosis Snorting: warts, nasal der, or on a spectrum in between. Treatment irritant dermatitis should be targeted based on which component is Crack: palmar/digital felt to drive the patient’s thoughts and behaviors. hyperkeratosis Any patient exhibiting signs of BDD should be Methamphetamine Excoriations (from pruritus/ steered away from unnecessary products and formication) Xerosis procedures and screened for referral to psychiat- Heroin Flushing ric management. Excoriations (from pruritus/ formication) Eating Disorders Pseudoacanthosis nigricans The social pressures that induce body dysmor- MDMA/Ecstasy Acne-like eruption phic disorder in gay subcultures may also be Inhalants Perinasal irritant dermatitis responsible for the development of eating disor- Injectable drugs Tracts Ulcers ders. Approximately 10–25 % of people with eat- Pseudoaneurysm ing disorders are men, with 10–42 % identifying Local and systemic infection as gay or bisexual, above the rate of homosexual- Skin popping: depressed, ity and bisexuality within the male population round scars (3.6 %) [ 64 – 66 ]. Many cases of transgender Adulterants Levamisole: retiform purpura with ulceration women with eating disorders have also been Talc, Starch: granulomas reported [67 ]. Sclerosant: lymphedema Early malnutrition presents with scalp hair loss (telogen effl uvium), lanugo hair formation, xerosis, pruritus, and/or poor wound healing. have a more muscular physique [60 ]. This is More signifi cant nutrient defi ciencies lead to demonstrated by the increased rates of body dys- associated defi ciency syndromes, not limited to morphic disorder, eating disorders and anabolic pellagra (niacin), scurvy (vitamin C), acroderma- steroid abuse. On the opposite end of the spec- titis enteropathica (zinc), or frequently a combi- trum, obesity has proven to be a signifi cant health nation. These conditions often don’t respond to problem amongst lesbians, and a leading cause of standard dermatologic remedies, and regress increased morbidity and mortality [61 ]. only with the re-institution of that which was defi cient [68 ]. Body Dysmorphic Disorder Bulimia nervosa may be more diffi cult to clin- Dermatologists encounter individuals with body ically appreciate than anorexia nervosa as not all dysmorphic disorder (BDD, dysmorphophobia) patients develop signifi cant weight loss. One at an elevated level compared to many other study found that gay men were two and a half medical specialties, affecting 9–14 % of all der- times more likely to engage in binging and purg- matologic clinic patients [62 ]. BDD is defi ned as ing activity than heterosexual men [ 69 ]. the feeling of being deformed or misshapen, even Cutaneous signs of these activities include facial with all evidence of the contrary [63 ]. Individuals petechiae from retching, interdigital intertrigo, become fi xated on certain aspects of their body, paronychia, and the development of calluses and most commonly the face, breasts, genitalia or scars on the dorsal knuckles of fi ngers used to hair. Patients present with complaints beyond purge (Russell’s sign). Mucosal signs include what is evident on exam and are often unable to erosions, poor dentition, and salivary gland perceive the alternative even after being told by enlargement. 15 Dermatology 279

Anabolic Steroid Abuse Obesity Anabolic steroids may be considered a drug of As opposed to gay and bisexual men and transgen- abuse in the gay male population. While not used der women who show increased rates of psycho- to induce euphoria, there are two principle rea- pathology with the goal of weight loss or toning, sons why gay men take advantage of the muscle- lesbians experience elevated rates of obesity. building property of corticosteroids. Social Obesity alone is associated with various skin pressures have lead to a culture in which men pathologies, including skin tags, striae distensae desire the perfect, stronger body. In addition, (stretch marks), and hyperhidrosis (increased individuals with AIDS may utilize these chemi- sweating). The physical burden of excess mass cals to counteract their disease- associated muscle may lead to pressure-induced plantar wasting [70 ]. hyperkeratosis, friction-induced dyspigmentation, Abuse of anabolic corticosteroids leads to an and the growth of polymicrobial intertrigo within increased prevalence of acne vulgaris. Steroid- semi-occlusive skinfolds. Impairment in lym- acne, contrary to classic acne vulgaris, has a phatic and venous fl ow may lead to lymphedema, stronger predilection for the torso in addition to stasis dermatitis, lipodermatosclerosis, and leg affecting the face (Fig. 15.15 ). Other dermato- ulcers, some of which are irreversible [ 72]. logic manifestations include male-patterned hair Obesity is associated with elevated rates of insu- loss of the scalp (androgenetic alopecia) with an lin resistance and diabetes mellitus. Dermatologic increase in quantity and coarseness of hair on the signs range from the minor but common symptoms body (hirsuitism). This is in conjunction with of acanthosis nigricans and non-scarring bullae to other physical fi ndings, not limited to gyneco- less commonly occurring eruptive xanthomas and mastia and testicular atrophy [ 71 ]. widespread granuloma annulare (Fig. 15.16). Even more infrequent but severe dermatoses may develop, including scleredema and necrobiosis Helpful Hint lipoidica diabeticorum [73 ]. Any muscular patient with signifi cant acne on their trunk without much facial involve-

ment should raise suspicion for anabolic steroid use.

Fig. 15.15 Steroid acne Fig. 15.16 Acanthosis nigricans and skin tags 280 B. Ginsberg

Skin Signs of Depression and Anxiety Helpful Hint Depression and anxiety affect members of the It is mindful to always pay attention to the LGBT community at rates higher than the gen- patient as a whole, even during history eral population, and often exist concomitantly. taking, as they may unconsciously perform On the skin, signs of scratching or picking the automatisms that have induced their without an underlying cause for itch are often dermatologic condition. the fi rst signal. Such neurotic excoriations occur in the setting of depression and anxiety, and the actions are frequently unbeknownst to the patient and thus diffi cult to stop. Repeated manipulation can induce secondary changes or Intimate Partner Violence even traumatic ulcerations that in turn can itch and lead to a diffi cult to manage itch-scratch Intimate partner violence (IPV) is a large prob- cycle (Fig. 15.17a ). Patients may also scratch lem in the LGBT community. It is has been cred- at pre-existing lesions, including acne (acne ited as the third most severe health issue for gay excoriée) [74 ]. men, following AIDS and substance abuse, and is Self-manipulation can also be directed at thought to affect 15–20 % of gay and lesbian one’s hair and nails. Trichotillomania (hair pluck- relationships [75 ]. The prevalence among trans- ing) presents as hair loss of varying sizes in irreg- gender individuals may be more than double that ularly shaped patches or on atypical sites, of lesbian and gay people [76 ]. frequently affecting the eyebrows (Fig. 15.17b ). The most frequent sign of physical abuse on Nail changes include irregularly frayed and the skin is ecchymoses. While a common entity, shortened edges from nail biting, or median nail evidence of a non-accidental cause includes dystrophy from a habit tic, appearing like a thin unusually high numbers, abnormal shapes, and Christmas tree down the center of bilateral thumb locations in areas not prone to injury, most com- nails. Treatment of all of the above is directed at monly the head, neck, buttock and genitalia. the underlying psychiatric comorbidity, with skin Other signs of abuse include bite marks or mul- care focused on symptomatic relief of itch and tiple burns. Signifi cant anogenital trauma should open wounds. raise suspicion for sexual abuse. Any suspected

Fig. 15.17 ( a ) Neurotic excoriations. (b ) Trichotillomania 15 Dermatology 281 case of IPV should be discussed with the patient, no surprise that similar changes have been and every care facility should have information observed with exogenous preparations [78 , 79 ]. regarding where to go and who to contact if the patient desires to do so [77 ]. Sebum Production Sebum is the triglyceride-rich oil produced by the skin’s sebaceous glands and functions as a natural Transgender-Specifi c Dermatology emollient. One study examined the effects of hormones on sebum production in both transgender To the transgender individual, the body’s exterior men and women. Transgender women taking estro- proves to be an area of focus from the moment gens and anti-androgens had a rapid and sustained they realize that it is incongruent from their true reduction in sebum production, where as transgen- gender. A person often undergoes a variety of der men taking testosterone had a gradual but sig- processes to eliminate or improve upon this dis- nifi cant increased production. In this study, all cordance, which may directly or indirectly impact transgender women had improvement in acne. their skin. This section outlines dermatologic Given the reduction in the skin’s natural moistur- considerations that result from these effects, both izer, another anecdotally reported but unmeasured intentional and unexpected, and provides infor- affect would be increased xerosis, pruritus, and mation about how a dermatologist may aid in the even eczema. To combat dryness and eczema, a transitioning process. gentle skin care regimen would be advised, limiting bathing to once a day, to be done with warm water and a moisturizing soap, in conjunction with liberal Helpful Hint emollient use throughout the day. A topical ste- Some transgender patients may be reluctant roid may have to be added if the eczematous to show their chest/breast or genitalia to a changes are not controlled by these measures alone. practitioner if they are not made to feel com- In the above and similar studies, transgender fortable. As examining these areas are often men almost universally developed acne, a major- critical for disease diagnosis and cancer ity of which affected both the face and the back. screening, they should not be automatically For many people, this is only temporary, starting dismissed, but rather care should be taken to to improve by 2 years after initiating the testoster- establish a level of comfort with the patient, one. Many over-the-counter products may be tried discussing the manner and importance of the for mild acne, including benzoyl peroxide and exam before beginning it. salicylic acid washes. Some cases require the addition of a topical antibiotic or retinoid, and for more moderate-to-severe cases, an oral antibiotic. Oral retinoids are standardly used for severe or recalci- Hormone-Associated Changes trant nodulocystic acne, which while not seen in any subjects of the aforementioned studies, have Often the fi rst step in the medical management of been anecdotally observed in many patients. transitioning is via hormone therapy. Transgender men most commonly take testosterone, available Hair Growth in many forms. Transgender women most commonly The effects of hormones on hair are very evident take a combination of estrogen with an anti- in the general population, with at least 80 % of androgen, including spironolactone, cyproterone cisgender men experiencing androgenetic hair acetate, a GnRH agonist, or a 5-alpha reductase loss by age 70. Transgender men, while experi- inhibitor. In their endogenous forms, these hor- encing minimal-to-no hair loss in the fi rst few mones are well known to have an impact on years of treatment, have been shown to have mild sebum production and hair growth. It is therefore frontotemporal hair loss in one third of cases and 282 B. Ginsberg moderate-to-severe alopecia in another third after Surgery may result in scarring that could be aes- long-term testosterone supplementation. As thetically unpleasing or have associated pruri- opposed to testosterone’s effect on scalp hair, it tus. Scars may be red and atrophic or, in some causes beard and body hair to increase, both in individuals, hypertrophic or keloidal. Over-the- number and diameter, which is an often-desired counter treatments, including onion extract gel, consequence. Primary management of androge- topical vitamin E, and silicone gel sheeting have netic hair loss in transgender men is with topical demonstrated limited to no effi cacy in scar pre- minoxidil (Rogaine ® ). The use of the oral anti- vention or treatment [80 ]. Hypertrophic scars androgen fi nasteride (Propecia® ) in transgender and keloids can be reduced in size and fi rmness men has not been directly studied. Anecdotal with intralesional glucocorticoid injections, a reports note effi cacy, however caution should be very effective treatment introduced over 50 had with taking fi nasteride within the fi rst few years ago [81 ]. Larger keloids may require sur- years of taking testosterone, as it may paradoxi- gical repair. Laser therapy has revolutionized cally inhibit secondary hair growth elsewhere scar treatment, with different lasers used to and reduce clitoral/penile enlargement. A more improve the redness and contour of fl at or atro- defi nitive approach to hair restoration is with hair phic scars [82 ]. transplantation, with topical and oral regimens continued afterwards to stop further hair loss in non-transplanted scalp areas. Facial Transformation Transgender women taking estrogens and anti-androgens experience hair loss on both the For many transgender individuals, one of the beard and body. While the hair loss on the body is most sought-out goals is to be able to pass as often complete, substantial facial hair may one’s true rather than natal gender. While hor- remain even after a year of treatment, although mones play an important role in reshaping one’s typically fewer and smaller in diameter. Various face and body, the resulting effects may not be depilatory techniques are now available to elimi- satisfactory for the patient. If the patient so nate the need for shaving, an undesirable daily desires, there are many options available for routine for transgender women. For limited areas, facial transformation, both non-invasive and sur- topical efl ornithine may be used twice daily, with gical. This section presents the non-invasive, results only sustainable during use. More perma- surgery-sparing options performed by many der- nent hair removal can be achieved with a series of matologists and plastic surgeons. four-to-six laser treatments tailored to the patient’s hair and skin color, which today pro- Assessing the Masculinity or vides lasting results and requires only occasional Femininity of the Face maintenance treatments. Electrolysis is a more In order to make a face appear more masculine or time-consuming and sometimes more painful feminine, it is best to understand the differences procedure, being that each hair is targeted indi- between the classic male and female facial struc- vidually, but serves as an option for patients not ture. Many studies have explored these differ- eligible for laser treatment, including people with ences, noting varied position, shapes and sizes of white or gray hair. certain facial features (Table 15.4 ) [83 ].

Non-invasive Techniques for Facial Post-operative Scarring Transformation Surgical implants and cranioplasty are the pre- While the performance of gender conﬁ rmation dominant methods to permanently alter the shape surgery (sex reassignment surgery) is not by of the face. Non-permanent and non-invasive dermatologists, understanding the procedures is techniques may be preferred, used adjunctive to essential for managing post-operative patients. surgery, or could be the only options available for 15 Dermatology 283

Fig. 15.18 (a ) Before, and (b ) after botulinum toxin “Aesthetic Surgery of the Facial Mosaic” (Panﬁ lov)— injection into the masseter muscles for facial contouring. Figures 72.10 a and b *Credit to Dr. Wofﬂ es Wu, Singapore as obtained from

Table 15.4 Gender-associated differences in facial Masseter injections are used to smooth the structures angle of the jaw (Fig. 15.18a, b ). All effects typi- Masculine Feminine cally last 3–4 months, and sustained responses Supraorbital Protruded Flat have been noted with repeated treatments [84 ]. ridge Cosmetic fi ller is used to lift or add volume to Eyebrows Flat, thick Peaked, thin areas of the face. For transgender patients, this Eyes Squinted Open could be used to make cheeks more prominent, Nose Large, wide Small, concave lips more full, or reshape the chin to being either Cheeks (Zygoma) Large, fl at Thin, wider or more pointed. Non-permanent fi ller may pronounced last from 6 months to 2 years depending on its Lips (Vermillion) Thin Full components, most frequently hyaluronic acid, Jaw (Mandibular Squared, Smooth, obtuse angle) narrow calcium hydroxyapatite, or poly- L -lactic acid. Chin Wide, Narrow, Permanent fi llers include Silicone and Artefi ll©, rectangular trapezoidal and are used much less frequently due to the risk of granulomatous side effects [85 ]. the patient who is not a surgical candidate. Non-physician Administration Cosmetic injectables can be used to either reshape of Permanent Filler the face or help give the illusion of certain gender- It is estimated that 16–29 % of transgender identifying facial features. women have had permanent fi ller injections by Botulinum toxin , derived from the bacteria unlicensed, nonmedical personnel, who promise Clostridium botulinum, is an exotoxin that pro- desired outcomes at signifi cantly reduced prices duces muscular denervation via pre-synaptic ace- [86 , 87 ]. Furthermore, pumping parties allow for tylcholine blockade. Injections into the forehead large groups to undergo these injections simulta- and glabella can be used to give the appearance neously, leading to the sharing of equipment and of a fl atter forehead, and strategic distribution in injectables. The products are often not medical- these areas and periorbitally can lift, peak, or fl at- grade and may be admixed with other substances. ten the eyebrow. Botulinum toxin can also be Aside from silicone, there have been reports of injected laterally to the orbit, eliminating “crow’s injections with paraffi n, lanolin, beeswax, petro- feet,” and giving the illusion of a more open and leum jelly, tire sealant, and various oils [88 – 90 ]. feminine eye. Injection into the nasal columella In addition, sterility is limited and organisms may provide some lift to the tip of the nose. may reside in the equipment or fi ller itself. 284 B. Ginsberg

Fig. 15.19 ( a) Granuloma from silicone injection. ulomas and angioedema from non-medical injections into *Credit to Dr. Derek Jones as obtained from “Facial the lips and cheeks rejuvination” (Goldberg)—Figure 5.14. ( b) Silicone gran-

With silicone injection, the most common com- Helpful Hint plication is granuloma formation at the site of Always rule-out or treat a concomitant injection, appearing as a fi rm, sometimes red, bacterial infection, including atypical nodule. Granulomatous reactions have occurred mycobacteria, before initiating immunosup- from other injected materials, some at distant sites pressive therapies for the management of due to fi ller migration [91 ]. Angioedema can fi ller complications. develop, felt to be from a protein contaminant rather than the silicone itself [92 ]. Large volume injection into breasts or hips may occlude vasculature, leading to lymphedema and venous compro- Ethical and Legal Considerations mise [ 93]. Due to the lack of sterility, infection is not uncommon, and cases of atypical mycobacte- There are no laws that govern when and how rial infection have been seen [94 ]. Sadly, there physicians perform gender confi rmation proce- have been several documented cases of multisys- dures on their patients. However, most practitio- tem organ failure and death with large volume ners operate based on the standards of care as set injection for body contouring (Fig. 15.19a, b ). forth by the World Professional Association for Treatment is based on the resultant reaction, Transgender Health [96 ]. The criteria for all with multiple approaches frequently required chest surgeries are that the patient be the age of [95 ]. Infection must always be suspected, ruled- consent and have mental health professional out, and even empirically treated, with broad- documentation of persistant gender dysphoria, coverage that includes atypical mycobacteria. with additional guidelines for genital surgery. Other treatments for cutaneous disease include Although facial surgeries do not require any of glucocorticoid injections and surgical excision for the above criteria, mental health professionals granulomas, antihistamines for angioedema, and may aid in helping the patient to make an a variety of anecdotal systemic agents for more informed and well-timed decision about any severe disease. Patients often necessitate chronic facial procedure, even for those that are not treatment and have poor cosmetic outcomes. permanent. 15 Dermatology 285

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Available at www.wpath.org Urologic Issues in LGBT Health 16 Matthew D. Truesdale , Benjamin N. Breyer , and Alan W. Shindel

• Describe lower urinary tract symptoms and how Purpose they may manifest in LGBT patients (PC5) • Describe sexual function and dysfunction in In this chapter we will provide a brief primer on LGBT patients (PC5) urologic care with a focus on the particular needs • Discuss opportunities for screening for uro- of LGBT persons. It is our hope that this manu- logic malignancy in LGBT patients (PC3, script will be of use to primary care physicians PC4) who will see LGBT persons with urologic issues and to urologists who may not be familiar with issues germane to the LGBT community. We will Urologic Healthcare for the LGBT address general urologic issues but will focus on Patient urologic issues for which there is evidence of signiﬁ cant differences between LGBT and non- A safe and welcoming environment is the foun- LGBT patients. dation of productive encounters between health care providers and patients. In Western societies, heterosexuality and gender identity concordant Learning Objectives with genital sex is the presumed norm. Individuals who are sexually attracted to members of the • Identify at least three ways in which urologic same sex (e.g. lesbian, gay, bisexual) and persons healthcare is sensitive for LGBT patients whose biological sex differs from their gender (PC2, PBLI1, PBLI1, ICS2) identity (transgender) are often collectively referred to as members of the LGBT (lesbian/ gay/bisexual/transgender) community. A few key issues must be addressed when considering the M. D. Truesdale , M.D. (*) B. N. Breyer , M.D., M.S. “LGBT community”: Department of Urology , University of California, San Francisco, San Francisco , CA , USA 1. While sexual expression is a key difference e-mail: [email protected]; between LGBT and non-LGBT persons, [email protected] LGBT persons may differ from their hetero- A. W. Shindel , M.D., M.A.S. sexual peers in non-sexual ways (e.g. social Department of Urology , University of California, Davis , Sacramento , CA , USA support structures). Holistic assessment of the e-mail: [email protected] particular needs of an LGBT person includes

© Springer International Publishing Switzerland 2016 289 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_16 290 M.D. Truesdale et al.

understanding of LGBT issues that may not patient is able to share this information without specifi cally relate to sexual activity. fear of recrimination [ 2]. Openness between 2. Although many refer to the “LGBT commu- patient and provider is critical to building of rap- nity”, it is important to recognize that there is no port and trust, which is fundamental to the thera- single unifi ed LGBT community; rather, there peutic relationship [3 ]. Information on sexuality are diverse communities of lesbian, gay, bisex- and gender is of particular relevance to urology ual, and transgender persons who frequently as this specialty is concerned with medical issues have a common interest in advocacy and educa- germane to the genitals and sexual activity. tion of the public at large about sexual and In establishing rapport with patients it is criti- gender diversity. cal to use inclusive language and to avoid 3. LGBT is the most familiar acronym to most assumptions in eliciting the medical and sexual individuals. The terms “queer” or “question- history. Specifi c examples include avoidance of ing” have been adopted by some individuals gender-specifi c pronouns when referring to a who do not identify as heterosexual nor as les- patient’s sexual partner(s) and not presuming that bian, gay, bisexual, or transgender. The acro- an individual is heterosexual. Conversely, a prac- nym LGBT is sometimes extended to read titioner should not presume that an individual’s LGBTQ; for the sake of convenience we will professed identity is concordant with their behav- restrict use in this manuscript to LGBT while ior. Up to 7 % of American women 18–59 years acknowledging that some gender/sexuality of age report a sexual history with another variant persons may not identify with the term women; over half of these women identify as het- “LGBT”. Medical concerns related to patients erosexual [4 ]. Similarly, estimates indicate that affected by differences of sex development over 70 % of self-identifi ed lesbians have a his- are discussed in Chap. 22 . tory of sexual relationships with men; as many as 6 % of lesbians in one study reported sex with a male partner within the past year [5 ]. In a similar Talking to LGBT Patients fashion, there exist a population of men who report heterosexual orientation but engage in sex- Personal issues and potentially embarrassing ual activities with other men [6 ]. Because there is issue regarding sexuality and urinary function) often discrepancy between professed orientation are routinely discussed during urologic consulta- and behavior (historical or current), some tion. During the urologic visit, it is critical for a researchers favor the descriptive terms “men who patient to feel empowered to share important have sex with men” (MSM) and “women who aspects of his/her history without fear of judg- have sex with women” (WSW) to terms such as ment or alienation from the provider. The intrin- gay or lesbian, respectively. sic sensitivity of urologic issues is compounded when they must be discussed in the context of a patient with a non-normative sexual or gender Urologic Issues identity. It is thus imperative that the provider strive to create an open and judgment-free envi- Urinary Function ronment so that key pieces of the patient’s history can be incorporated into the evaluation and plan Normal urine production, storage and transport of treatment. depend on the functioning and coordination of the Because patients who do not disclose their kidneys, ureters, bladder, and urethra (Fig. 16.1 ). sexual orientation and/or gender identity are at The kidneys continuously fi lter the blood, risk of worse health outcomes, health care pro- producing urine as the excretory byproduct. viders must elicit these issues with sensitivity to Urine is transported by peristalsis of the ureters ensure optimal patient care [ 1 ]. The provider from the kidneys to the urinary bladder, where it is should facilitate an environment where the stored until it can be conveniently evacuated [ 7 ]. 16 Urologic Issues in LGBT Health 291

vided into urgency incontinence (loss of urine with sudden overpowering urge) and stress incontinence (loss of urine with ValSalva or other increase in intraabdominal pressure) [7 ]. During urination, the brain receives sensory input that the bladder is full, triggering the cas- cade of events leading to micturition. The brain sends a signal to the urethral sphincters to relax followed by contraction of the detrusor muscle, which surrounds the bladder. Squeezing of the detrusor muscle forces urine out of the bladder and through the urethra. Normal voiding depends on detrusor contraction, simultaneous relaxation of both urinary sphincters, and a low resistance urethra allowing for unobstructed urine fl ow. Failure of any of these mechanisms may lead to a variety of lower urinary tract symptoms ( LUTS). LUTS are common in both men and women and can lead to signifi cant impairment in quality of life [8 , 9 ]. LUTS are commonly divided into “obstructive” or “irritative” categories [2 , 10 ]. Fig. 16.1 This coronal view of the urinary tract shows the kidneys, which fi lter blood to create urine. Urine drains out through the ureters to be stored in the bladder, Obstructive prior to evacuation (Image Courtesy, J. Ehrenfeld) 1. Weak urinary stream. 2. Need to strain (Valsalva maneuver) with The bladder is a compliant hollow organ lined urination. with mucosa overlaid on a muscular layer (the 3. Incomplete emptying, or a sensation of urine detrusor). The healthy bladder is compliant, remaining in the bladder at the completion of meaning it can fi ll at low pressures and accom- a void. modate a large volume of fl uid. The urethra is the tube which urine passes from the urinary bladder Irritative during micturition. In men, the urethra passes 1. Urinary urgency or the strong and immediate through the prostate, which is a gland responsible need to urinate without delay or warning. for the production of seminal fl uid [7 ]. 2. Urinary frequency defi ned as the need to void In both men and women urine is held in the multiple times in an excessive and bother- bladder by action of the internal and external ure- some way without a normal time interval gen- thral sphincters. The internal sphincter is located erally <1–2 h. in the vicinity of the bladder neck and consists of 3. Nocturia or voiding multiple times during the involuntary smooth muscle under the control of night. the autonomic nervous system. The external uri- 4. Post Void Dribbling nary sphincter is located in the proximal portion of the urethra; this sphincter is contracted to pre- The most common cause of obstructive symp- vent unwanted leakage. The external urethral toms is increased urinary outfl ow resistance sphincter is under voluntary control. Normal along the urethra. For men, this often is the result storage of urine depends on compliance of the of an enlarged prostate or a urethral stricture bladder, relaxation of the detrusor muscle, and (i.e. a scar of the urethral lumen from past injury adequate capacity to coapt the urethra. Failure of or infection). In women obstructive symptoms any of these mechanisms leads to incontinence can be due to kinking of the urethra, which can (involuntary loss of urine). Incontinence is subdi- result from prolapse of the bladder or other 292 M.D. Truesdale et al. organs through the vagina, displacing the path of LUTS are a signifi cant impediment to overall the urethra and increasing outfl ow urinary resis- quality of life and represent a substantial cost in tance. In severe cases obstructive LUTS can pro- terms of healthcare expenditures and loss of produce a form of incontinence called “overfl ow ductivity [12 ]. Loss of urinary control may also incontinence” in which the bladder does not contribute to social isolation and depression [13 ]. completely empty and urine dribbles out from the Aside from symptomatic bother, inability to ade- urethra when intravesical pressure becomes high quately void predisposes patients to urinary tract enough to exceed urethral closure pressure [11 ]. infection, urolithiasis, and in extreme cases renal Irritative symptoms often have a more compli- failure due to back pressure on the kidneys. cated pathophysiology but are generally due to an over-activity of the detrusor muscle; this stimu- lates a spasm-like sensation that triggers a sensa- LUTS in Men tion of needing to void. Detrusor overactivity may be secondary to spinal injury, neurodegen- The prostate is the organ most commonly associ- erative conditions, bladder irritation from infl am- ated with LUTS in men, primarily due to benign mation or infection, or it may be idiopathic. prostate hypertrophy (BPH, also referred to as Benign Prostate Enlargement BPE ). In BPH there is enlargement of the prostate gland, lead- Helpful Hint ing to compression of the urethra and narrowing It is important to recognize that there is of urethral caliber (Fig. 16.2 ). This tends to often signifi cant overlap between obstruc- restrict urine outfl ow. BPH is strongly associated tive and irritative symptoms; the etiology with age although the degree of bother from BPH of a patient’s LUTS may be multifactorial does not always correlate with the degree of glan- and may require urologic investigation to dular enlargement. While enlargement of the accurately diagnose [10 ]. prostate plays an important role, local and systemic infl ammation may also contribute to symp-

Fig. 16.2 Sagittal Section of the male pelvis. The prostate surrounds the urethra but does not protrude into the urethral lumen. In the setting of BPE or BPH (not shown) the urethra is compressed by the enlarged prostate and urine fl ow is restricted (Image Courtesy, J. Ehrenfeld) 16 Urologic Issues in LGBT Health 293 toms [14 ] and possibly even to hypertrophy by Although the physiology of LUTS is similar inducing cells to multiply and grow [15 ]. This amongst all men regardless of sexual behavior, synergistic effect may accelerate prostate growth specifi c risks have been identifi ed in MSM. MSM and progression of LUTS in men. have a higher rate of STI compared to the general The most common infl ammatory triggers in population [26 , 27 ]. Breyer et al. reported that the prostate include pathogens like viruses and MSM with a history of gonorrhea, urinary tract bacteria. Men with a history of urinary tract infec- infections, and prostatitis were more likely to tions and/or sexually transmitted infections (STI) report LUTS compared to their MSM peers [ 28 ]. are more likely to develop LUTS [ 16]. Progressive In a related study Breyer et al. reported that men growth in the size of the prostate is also a contrib- with AIDS were more likely to report moderate uting factor to LUTS in men. Diabetes , obesity to severe lower urinary tract symptoms as and the metabolic syndrome have all been linked compared to non-HIV infected men as well as to an increase risk of LUTS [17 ]. men with HIV but not AIDS (Fig. 16.3 ) [28 ]. HIV infection is another important risk factor Similarly, depression is more prevalent in the for LUTS. In a urodynamic study of HIV infected LGBT community and has been identifi ed as a men with LUTS it was determined that the under- predictor of LUTS in MSM [28 ]. For these rea- lying cause of LUTS in 61 % of these men was sons, MSM should be screened for LUTS and neurological (e.g. cerebral toxoplasmosis and counseled accordingly [29 ]. A common screen- HIV encephalitis [18 ]. These data are from an era ing tool for urinary symptoms in men is the before the introduction of Highly Active International Prostate Symptom Score ( IPSS ) Retroviral Therapy (HART) and hence these neu- (also known as the American Urologic rologic entities are much less common in con- Association Symptom Score ) [30 ]. temporary HIV infected persons. In contemporary series HIV associated LUTS are thought to be related to pro-infl ammatory nature of the disease process, increased risk of UTI, and/or neuro- Helpful Hint pathic injury to the detrusor nerves [19 , 20 ]. While LUTS in men are commonly attrib- Major depression is common in men with uted to prostate pathology, bladder instabil- LUTS. Depression has been shown to increase ity may occur in men. Potential etiologies infl ammatory markers in patients and it is thought include neurologic lesions, chronic obstruc- that these effects contribute to the pathophysiol- tion from BPH, urinary tract infections, and ogy of LUTS [ 21 , 22 ]. A study by Johnson et al. idiopathic causes. These possibilities should in 2010 found that men suffering from depression be considered when evaluating a male had higher urinary symptom scores (worse void- patient with LUTS. ing symptoms) as compared to healthy controls [23 ]. Breyer et al. also found a signifi cant association between depression and suicidal ideation and lower urinary tract symptoms [ 24]. In addi- LUTS in Women tion to the infl ammatory response induced by the depressive state, it is also hypothesized that the Symptoms and etiologies for LUTS and inconti- pathologic synthesis and regulation of serotonin nence in women differ markedly from what is observed in depressed individuals may place observed in men, largely due to anatomic differ- these same individuals at risk for developing ences between genders. Obstructive LUTS are idiopathic detrusor overactivity [25 ]. Since the relatively infrequent in women but irritative detrusor muscle contraction is responsible for symptoms occur at a high rate and women are at normal voiding, instability of this muscle could a much higher risk of incontinence than men due lead to increased urinary symptoms. to markedly lower urethral resistance. Symptoms 294 M.D. Truesdale et al.

Percent Prevalence of LUTS in MSM by HIV/AIDS Status, (p<0.01)

HIV(+)/AIDS(+)

HIV(+)/AIDS(-)

HIV(-)/AIDS(-)

Severe LUTS (IPSS 20-35) Moderate LUTS (IPSS 8-19) Mild LUTS (IPSS 0-7) 0% 10% 20% 30% 40% 50% 60% 70% 80%

Fig. 16.3 Prevalence of LUTS in MSM by HIV/AIDS Status

are often a result of changes in the pelvic fl oor (Shindel, unpublished data). However, the high musculature, which can occur after childbirth. prevalence of LUTS/incontinence in women in These changes can cause kinking of the urethra general dictates that WSW be screened and resulting in obstructive symptoms, which can appropriately treated for LUTS/incontinence. then evolve to include overactive symptoms from incomplete emptying of the bladder. In addition, following menopause, changes in Treatment of LUTS estrogen levels can result in the vaginal mucosa to become thinner and more friable. For, some Treatment options for lower urinary tract symp- women this can be manifested in irritation with toms range from behavioral modifi cation to med- voiding and result in increased urinary frequency ications to surgical interventions. Picking the and even recurrent urinary tract infections. appropriate therapy depends on the individual Lesbian and bisexual women have higher rates needs of the patient and should be based on the of obesity compared to heterosexual women [31 ], patient’s reported symptoms. Treatment should a condition that has been associated with greater be initiated if symptoms are bothersome or if risk of LUTS [ 32 ]. At the same time, lesbian symptoms are presenting a risk to a patient’s women are less likely to have a history of preg- health (e.g. worsening renal function, recurrent nancy, which is a risk factor for incontinence. urinary tract infections, urolithiasis). Whether WSW have a signifi cantly different Behavioral interventions are often the fi rst line prevalence for LUTS/incontinence compared to of therapy for LUTS. Men or women with bother- their heterosexual peers is unclear; unpublished some LUTS can try to void regularly (i.e. every 3 data from our group indicate that the prevalence h) or perform double voiding which means void- of LUTS and incontinence in WSW is generally ing to presumed completed, waiting, and then similar to what is observed in non-WSW females attempt to void again immediately to excrete any 16 Urologic Issues in LGBT Health 295 remaining urine from the bladder. Such behaviors modern alpha blockers anejaculation is more can improve bladder emptying and decrease common (~14–35 %) [ 33 , 34 ]. Ejaculatory LUTS. Other interventions include decreasing disturbance may be of great signifi cant to oral fl uid intake in the evening and at night to MSM as ejaculation has been shown to be an decrease the severity of nocturia. Changing the important sign of sexual gratifi cation in this dosing of diuretics to earlier in the day can also population [35 ]. improve nighttime urinary symptoms. Finally, 5-alpha reductase inhibitors ( 5ARI , e.g. fi nas- avoiding bladder irritants like caffeine, citrus, teride, dutasteride) inhibit the enzyme 5-alpha alcohol, carbonated beverages, and spicy foods reductase which converts testosterone to dihy- can help to decrease bladder over activity. drotestosterone, the primary active androgen in the prostate. This results in decreased growth of the prostate and can even cause the Helpful Hint prostate to shrink in size up to about 20 %. Behavioral interventions can often improve 5ARI are most effective in men with very urinary symptoms without the potential large prostates. 5ARI have also been shown in risks of medication or surgery. a randomized controlled trial to signifi cantly reduce the risk of BPH progression (e.g. urinary retention, requirement for surgery, UTI, renal failure) when used as monotherapy or in For LUTS refractory to behavioral modifi cation, combination with an alpha blocker. Men on three classes of medications are frequently this medication generally will have a halving prescribed. The fi rst three categories are spe- of serum PSA (prostate specifi c antigen) so cifi cally indicated for natal men and are not this must be taken into consideration when FDA approved for use in natal women. interpreting the screening test for prostate cancer. This medication does not work imme- Alpha-blockers (e.g. terazosin, doxazosin, tam- diately and may need to be taken regularly for sulosin, sildosin, alfuzosin, etc.) block adren- 6 months before noticeable improvements are ergic nerve endings which are responsible for seen. Reported side effects include decreased contraction of smooth muscle in the vicinity sex drive, smaller amount of ejaculate, erectile of the internal urethral sphincter and prostate; dysfunction, and gynecomastia [36 ]. this has the effect of increasing the luminal Tadalafi l is a selective inhibitor of the enzyme diameter of the prostatic urethra during void- phosphodiesterase type 5. This drug was ini- ing and improving urinary fl ow. Symptoms tially approved for management of erectile can improve immediately but generally take dysfunction (ED) in men but has also estab- 2–3 weeks for noticeable relief. Side effects lished effi cacy in the management of LUTS in including weakness, orthostatic hypotension men with BPH when taken as a daily dose. and anejaculation. The rates of orthostatsis/ While the subjective benefi t of tadalafi l for weakness are markedly lower in modern LUTS is established, treatment with this drug selective alpha blockers. However, alpha has not been shown to improve objective mea- blockers may have a synergistic hypotensive sures such as urine fl ow rate and post void effect when taking with inhibitors of phospho- residual urine. Side effects of tadalafi l include diesterase type 5 (PDE5I) that are used to pro- congestion, stuffy nose, headache, and myal- mote penile erection (e.g. sildenafi l, vardenafi l, gias [37 ]. tadalafi l, avanafi l); patients should be cau- Anticholinergics (e.g. oxybutynin, tolterodine, tioned about this potential drug interaction solfenacin, darifenacin, trospium) block cho- and advised to take these classes of medica- linergic nerve endings which are responsible tions at least 4 h apart in time. Although ortho- for initiation of bladder contraction and can be static symptoms are markedly less with helpful for patients with overactive bladder 296 M.D. Truesdale et al.

symptoms. By decreasing the intensity of blad- towards heterosexuals and have not been validated der contractions, patients with irritative LUTS in the LGBT population [ 42, 43]. may be able to postpone voiding and decrease Taking an appropriate sexual history is funda- urinary frequency. The medication works mental to promoting sexual wellness and the fun- quickly and its effects are generally noticed in damental skills relevant to taking a sexual health the ﬁ rst days to weeks of stable dosage. Side history in cis-gendered heterosexual persons effects include dry mouth, dizziness, constipa- apply to sexual health history in LGBT persons. tion and drowsiness. There is some concern However, normalizing statements (e.g. “Many of that these drugs may precipitate urinary reten- my patients…”, “Some people have sex with tion in patients with pronounced urethral women, some with men, some with both, and obstruction. Anti-cholinergics should not be others with neither.”) and open ended questions used in persons with narrow angle glaucoma (e.g. “What questions do you have about your and should be used with caution in elderly per- sexual health?”) are of particular importance in sons using other anti-cholinergic or nervous comfortable sexual health inquiry for LGBT per- system active drugs due to increased risk of sons. “Yes/no” questions can still be useful in mental status change [38 ]. initiating the conversation (e.g. “Do you have any concerns or questions about sexuality that you For some patients, medications and behavioral would like to address during this visit?”) Further changes are not sufﬁ cient to treat LUTS. These questioning as to the type of sexual activity the patients should be referred to a urologist for patient engages can be important for many counseling and discussion of surgical treatment aspects of the urologic assessment ranging from options. Examples of surgical treatments include risks for sexually transmitted infections to coun- Transurethral Resection of the Prostate ( TURP ) seling for treatment of prostate cancer. Asking in men with BPH, urethral sling surgery for the patient if they engage in oral, anal, or vaginal incontinence (primarily in women but useful in sex and clarifying if the behavior is receptive or some cases for men), and intravesical injection of insertive can accurately characterize the patient’s botulinum toxin in patients of any gender who sexual activity. have refractory bladder overactivity [39 ].

Helpful Hint Sexual Behavior and Health There is great variability in sexual expression amongst LGBT persons; it if helpful to Clear and important differences exist regarding understand the exact sort of sexual activity sexual behavior between heterosexual and LGBT the patient engages in. patients. Perhaps most important for clinicians is understanding the important and unique differences in sexual dysfunction among these populations in order to properly screen and treat LGBT The Sexual Response Cycle persons. Data regarding same-sex sexual behavior has been dominated by the role sexual behavior Williams Masters and Virginia Johnson are cred- and dysfunction on the impact of HIV transmis- ited with the ﬁ rst large scale systematic investiga- sion in MSM [ 40, 41]. Existing studies on sexual tion of sexual response in men and women. From function/satisfaction are often qualitative in nature, their observations Masters and Johnson devel- include small populations, and utilize non-vali- oped a four phase sexual response cycle consist- dated metrics or single item questions to elucidate ing of Arousal, Plateau, Orgasm, and Resolution information. This last limitation stems from the [44 ]. The sex therapist Helen Singer Kaplan fact that the majority of validated instruments for modiﬁ ed this linear response cycle to incorporate assessment of sexual function use language geared a desire phase which precedes arousal [45 ]. 16 Urologic Issues in LGBT Health 297

Alternative models for sexual response in women the brain by the spinal cord during ejaculation that are more circular in nature have been pro- [ 47 ]. This area contains dopaminergic nerve cells posed by several experts [46 ]. While these newer controlled by dopamine—a neurotransmitter models have some merit the linear response mod- linked with rewarding behaviors—and may els remain very useful for classifi cation of sexual explain why genital and anal stimulation is so disruptions. An outline of the physiological strongly pleasurable and rewarding [48 ]. events associated with difference phases of the Penile erection is the best understood aspect of sexual response cycle (omitting plateau) and male sexuality and the issue most amenable to classifi cation of specifi c disruptions of these treatment. Erection of the penis occurs via dilation phases is presented in Table 16.1 . of the cavernous arteries, which supply blood to the corpora cavernosa of the penis. The vascular events that drive penile erection are mediated by a Helpful Hint complex interplay of the cavernous nerves which In virtually all cases of sexual problem/ innervate the cavernous arteries. Release of nitric dysfunction there are both biological and oxide from these nerves activates vascular guanyl- psychological factors at play. ate cyclase, which in turns produces downstream molecular events that trigger muscular smooth relaxation in the arteries supplying the penis. With vasodilation, penile blood fl ow increases and the Sexual Function in Natal Men erectile tissue of the penis becomes engorged. As this tissue expands and becomes tumescent the Much has been uncovered in recent years regard- emissary veins which drain the corpora cavernosa ing the complexities involved in male sexual are compressed against the tunica albuginea of the behavior. From arousal to erection to ejaculation, corpora cavernosa; this has the effect of restricting sexual function requires a complex coordination blood fl ow out of the penis and leads to rigid penile of incoming and outgoing stimuli all presided erection [49 ]. over by the brain. Brain imaging studies of men Due to variation in sexual practice patterns the during sexual activity have identifi ed the mesodi- anus, prostate, and rectum are relevant to MSM encephalic transition zone (an area in the center as many (but not all) MSM engage in anal sex. of the brain) as the area which receives sensory The prostate is clearly a “sexual” erogenous zone information from the genitals, anus, rectum and and one that can provide sexual pleasure follow- prostate during sexual activity that is carried to ing digital stimulation or through anal receptive

Table 16.1 The sexual response cycle in biologically female and male persons and common nomenclature for sexual issues of each phase Biologically male Biologically female Physiological signs Disruption classifi ed Physiological signs Disruption as: classifi ed as: Desire Pupillary dilation, Hypoactive sexual Pupillary dilation, Hypoactive sexual tachycardia, tachypnea desire disorder tachycardia, tachypnea desire disorder Arousal Penile erection, scrotal Erectile dysfunction Vulvar and clitoral swelling, Sexual arousal contraction, nipple vaginal lubrication and disorder (genital or erection lengthening, nipple erection subjective) Orgasm Ejaculation, muscular Premature ejaculation, Muscular contractions in Female orgasmic contractions, delayed ejaculation, vagina, uterus, anus, disorder satisfaction, pleasure anorgasmia satisfaction/pleasure Resolution Detumescence of the Priapism Cessation of vaginal Persistent genital penis, return to resting lubrication and lengthening, arousal disorder state return to resting state 298 M.D. Truesdale et al. intercourse though researchers know little on the One major diffi culty in studying erectile dys- innervation pathways involved. It is important function in MSM is the fact that the standardized that patients be educated about the critical role questionnaires commonly used in contemporary that the prostate plays in sexual activity espe- ED research are validated for use in heterosexual cially if the patient engages in anal receptive encounters only. Coyne et al. did validate a ver- intercourse. sion of the International Index of Erectile Function The neurologic and vascular systems are (IIEF) in a population of HIV infected men who essential components of erectile response; hence, have sex with men. This instrument was used by vascular diseases (e.g. diabetes, hypertension, Shindel et al. in an internet survey of sexual func- hypercholesterolemia, tobacco use, obesity, lack tion in MSM. It was determined that ED was of exercise) and nervous system lesions (e.g. associated with increasing age (Fig. 16.4 ), AIDS, spinal cord transaction, cavernous nerve injury and LUTS [54 ]. LUTS and younger age were during pelvic surgery) are major risk factors for associated with greater risk of PE [54 ]. ED. Other common causes of trouble with erections include medication side effects (particularly beta blockers, thiazide diuretics, and anti- Premature Ejaculation and Other depressants), testosterone defi ciency, and psy- Sexual Concerns chosocial issues within the patient or between patient and partner (s) [49 ]. A number of other sexual problems may occur in men, including premature ejaculation (PE, defi ned most recently by the International Society Sexual Dysfunction in MSM for Sexual Medicine as ejaculation occurring in 1 min or less of penetration and associated with Erectile Dysfunction loss of sense of control and distress) [ 55]. It is noted that the defi nition applicable only to coital Existing data suggest that rates of erectile dys- intercourse. The intent of these authors was not function ( ED ) are higher in gay/bisexual men be to exclusionary; however, it was concluded compared to their heterosexual peers. Bancroft that there was currently insuffi cient objective evi- et al. reported on a sample of 2937 men and dence to incorporate non-coital intercourse into found that only 42 % of gay identifi ed men the defi nition of PE. Until data on clinically rele- “never” experienced ED as compared to 54 % of vant PE in MSM is available it is advised that heterosexual men [50 ]. An internet study investi- clinicians and researchers use the same ISSM cri- gated sexual wellness in osteopathic and allo- teria for the diagnosis of PE in MSM [55 ]. pathic medical schools in North America and Most contemporary reports suggest that the compared rates of self reported sexual dysfunc- prevalence of early ejaculation is similar to tion. It was determined that ED was more preva- slightly less in MSM compared to their hetero- lent amongst gay or bisexual identifi ed men as sexual peers [50 , 51 , 56 , 57 ]. Early ejaculation compared to heterosexual men [51 ]. This fi nding associated with bother is reported by between 15 of increased ED among MSM was also echoed in and 34 % of MSM [54 , 58 , 59 ]. Controversy per- a study by Vansintejan et al. out of Belgian. The sists on the true burden of clinically relevant authors found that almost half of MSM sampled early ejaculation in general, let along in reported some diffi culty with getting an erection. MSM. Most studies suggesting a ~30 % preva- Factors associated with ED included increased lence are based on single item reporting of sub- age, single relationship status, versatile or pas- jective experiences rather than the most stringent sive sex role, and decreased libido [ 52 ]. Because criteria and hence it is likely that the true preva- gay men have a higher prevalence for tobacco lence of clinical PE is less than 5 % [55 , 60 ]. and drug use compared to heterosexual men, MSM with severe voiding symptoms, HIV their risk of ED is likely to be greater [53 ]. infection, and who experience social recrimination 16 Urologic Issues in LGBT Health 299

60 +

50-59

Age (years) 40-49

30-39

18-29

0 5 10 15 20 25 30 35 Percent Prevalence of ED in MSM by Decade of Life Severe ED (IIEF-EF 1-10) Moderate ED (IIEF-EF 11-15) Mild ED (IIEF-EF 16-24)

Fig. 16.4 Prevalence of ED in MSM by decade of life appear to have lower risk of early ejaculation lence of HIV [63 – 65 ]. Research by Hart attempted compared to their MSM peers [59 , 61 , 62 ]. to identify differential risk factors for ED compar- Aside from ED and PE, men may experience ing HIV negative and positive MSM. The authors bothersome declines in sexual desire (aka hypo- found an increased risk of ED among HIV(+) men active sexual desires disorder or low libido), (21 %) as compared to HIV (−) (16 %) despite the diffi culty attaining orgasm (anorgasmia), disrup- HIV (+) cohort having a younger median age. Risk tion of ejaculation (retrograde ejaculation or ane- factors for ED in HIV (−) men were older age (age jaculation), and Peyronie’s Disease (an acquire 55+ versus age ≤40; 112 % increase), Black race deformity of the penis). These issues are less well (88 % increase), and cumulative years of cigarette understood but can pose a signifi cant impediment smoking in pack-years (9 % increase). In HIV (+) to sexual satisfaction. A careful history can help men, risk factors were years of antihypertensive elucidate the exact nature of sexual complaints in use and cumulative years of antidepressant use. men; it should be borne in mind that many sexual Interestingly, HAART adherence years and CD4+ concerns may be comorbid. cell count were not found to signifi cantly predict likelihood of ED [53 ]. The authors suggested that it the HIV—related medical comorbidities which Sexual Dysfunction, HIV, and AIDS may explain the increased prevalence of ED as opposed to a direct effect of the virus. Additional AIDS has been identifi ed as signifi cant risk factor potential factors Testosterone defi ciency is com- for developing ED and/or premature ejaculation mon in HIV positive persons and this may predis- amongst MSM. Hypotheses for the etiology of this pose to declines in libido and erectile capacity connection range from prolonged use of HART, [66 , 67 ]. Finally, the substantial psychosocial exposure to opportunistic infections and, low CD4 stressors of HIV infection (stigma, concern about counts although these associations have been infecting others, etc) may contribute to sexual inconsistently demonstrated to increase the preva- issues in HIV positive persons [68 ]. 300 M.D. Truesdale et al.

In a study by Shindel, greater prevalence of on management of ED in men [70 ] and to national erectile dysfunction was identifi ed in men with and international organizations dedicated to sex- progressive HIV infection 40–59 years of age as ual wellness in men such as the Sexual Medicine compared to HIV-negative men of similar age. Society of North America ( www.smsna.org ) and When the authors controlled for other variables the International Society for Sexual Medicine including age, number of sexual partners, and ( www.ISSM.info ) condom use they found that HIV alone was not a risk for ED but HIV with AIDS was associated with greater odds of ED [69 ]. ED in HIV Positive Men Neither HIV nor AIDS was associated with an increased prevalence of early ejaculation in this The issue of ED in HIV positive men is one of study. Interestingly, use of phosphodiesterase 5 marked public health consequence as ED has (PDE5) inhibitor drugs was found to be more been associated with failure to utilize safer sex common among HIV-infected men. In addition, practices (i.e. condoms) [68 ]. The treatment of HIV (+) men were more likely to have sought ED in HIV positive persons has been controver- medical attention for sexual dysfunction as com- sial in the past due to concerns that this might pared to HIV (−) MSM [69 ]. promote sexual transmission of the virus [71 ]. A pilot study by Goltz attempted to identify any possible increased risk for contracting STIs Management of Sexual Concerns amongst MSM receiving therapy for erectile dys- in Gay Men function. The authors found that 1/3 of the sample had engaged in unprotected anal sex at the Medical therapies for ED include oral phospho- last erectile dysfunction medication use. Risks diereterase type 5 inhibitors (PDE5I), vacuum for engaging in unprotected sex were younger erection devices (VED), intracavernosal injection age and receiving the medication from the sexual therapy (ICI), intraurethral prostaglandin sup- partner [72 ]. positories, and surgical implantation of infl atable While counseling on safer sex practices should or malleable penile prostheses [69 ]. accompany provision of erectogenic therapy in PDE5I drugs are the fi rst line agents of choice all contexts, there are no data suggesting that in medical management of ED. In the United treatment of ED in and of itself increases risk of States four PDE5I are currently available; silde- HIV infection. Treatment of ED may help some nafi l (Viagra® ), vardenafi l (Levitra® or Staxyn ® ), men with marginal erectile capacity retain erec- tadalafi l (Cialis® ), and avanafi l (Stendra® ). Other tions despite condom use, thus facilitating safer PDE5I are approved for use in other regions of sex [73 ]. Respect for persons and social justice the world. These drugs are highly effective but are fundamental tenets of medical practice and must be taken at least 1–2 h before planned inter- indicate that HIV positive men with ED receive course. Potential side effects include congestion, appropriate counseling and treatment for sexual headache, fl ushing, visual disturbance, and issues, including ED [74 ]. myalgia. Side effects are typically mild and self- limited. PDE5I should not be used in patients taking nitrate based therapy for angina and Management of Other Sexual should not be taken within 4 h of alpha blocker Problems in Men medications [ 70 ]. Second and third line therapies for ED are Hypoactive sexual desire disorder, orgasmic dys- often effective in cases where oral pharmacother- function, and Peyronie’s Disease (a condition of apy fails [70 ]. A complete discussion of these acquired deformity of the penis) are present in modalities is beyond the scope of this chapter but gay men but are poorly characterized. Management interested readers are referred to recent publications of these concerns in gay men should follow 16 Urologic Issues in LGBT Health 301 established treatment protocols, including attention Tracy and Junginger developed a version of the to general health, relationship status, and medica- Female Sexual Function Index (FSFI) for use in tions that may contribute to sexual issues (e.g. lesbian women. The FSFI explores six domains beta blockers, thiazide diuretics, antidepressants, relevant to female sexuality; Desire, Arousal, anti-androgens, etc). It should be borne in mind Lubrication, Orgasm, Satisfaction, and Pain. that there is only one FDA approved medical ther- Women with lower scores on this index were apy for Peyronie’s Disease (injectable collage- identifi ed to have “higher risk for sexual dysfunc- nase) and no approved pharmacotherapy for any tion.” In the initial validation study, older age was other sexual concern in men. associated with decreased sexual desire and overall sexual function. Stress was associated with worse sexual function whereas satisfying rela- Sexual Function in Natal Women tionship with a partner were associated with better sexual function [79 ]. Scientifi c understanding of female sexual Shindel et al. utilized a version of this FSFI in response lags far behind where we stand with an internet study of sexual function in 1566 respect to understanding of male sexual response. WSW. Risk of distress sexual problems was cal- In general the same molecular and vascular events culated using previously established cut-off scores occur during female sexual arousal although the for the FSFI which were shown to approximate end result is markedly different from what is endorsement of sexual dissatisfaction in this observed in men [75 ]. The clitoris becomes erect cohort. After multivariable adjustment nulligravid in a fashion similar to the penis but does not women, women with OAB, and women with no become as rigid due to size and the relative thin- partners or non-female partners were found to be ness of the clitoral tunica. Vasodilation also plays at greatest risk of distress sexual issues [61 ]. an important role in promoting vaginal engorge- There is a common perception among both pro- ment, lengthening, and lubrication [75 ]. There are viders and patients that STI risk is low in same-sex no glandular elements within the vagina that pro- encounters between women. This may predispose duce lubrication. However, with increased vascu- WSW to entirely preventable STI. A study on bar- lar engorgement of the vaginal submucosa oncotic rier use in WSW was derived from this same data pressure leads to production of a transudative set and indicated that many WSW do not use bar- fl uid that is passed through aquaporins on the riers during sexual encounters, even outside the vaginal mucosa into the vaginal lumen [76 , 77 ]. context of a monogamous relationship [80 ]. These Vascular and neurologic health factors in data speak to the need for education on safer sex women have not been clearly and universally practices for WSW [5 , 81 , 82 ]. linked to sexual distress/dissatisfaction as they Shindel et al. found that while almost a quarter have been in men although women with severe of the WSW sample reported symptoms of sexual injuries (e.g. spinal cord injury) do have marked dysfunction, only 11 % had actually sought help impairments of sexual function [78 ]. from a physician for these problems [61 ]. This highlights the importance of sexual health screening by physicians to help identify at risk patients Sexual Dysfunction in WSW and provide intervention to help improve sexual health in general but particularly in WSW. Public health concerns about HIV spawned inter- Biomedical treatment options for sexual dys- est from the research community on sexual well- function in women in general are very limited; a ness in gay men; sexual wellness in lesbian and selective estrogen receptor modulator has been bisexual WSW remains very poorly studied in approved for management of dyspareunia from the mainstream biomedical literature. There is a vaginal penetration [83 ]. Other pharmaceuticals dearth of validated tools for the quantitative are used off label by some experts. A discussion assessment of sexual function in lesbian women. of these medical treatment modalities is beyond 302 M.D. Truesdale et al. the scope of this chapter but interested readers are cancer include prostatectomy, external beam referred to recent publication on this topic and radiation therapy, brachytherapy and hormone the International Society for the Study of deprivation therapy. Although these interventions Women’s Sexual Health (www.ISSWSH.org) for can result in excellent disease free survival ben- more information. Attention to psychosocial fac- efi t, they also can result in signifi cant comorbidi- tors and relationship context remains an important ties. The most common side effects resulting consideration for sexual concerns in women. from prostate cancer treatment include ED, loss of ejaculation, painful anal receptive intercourse, urinary incontinence, and penile shortening. Genitourinary Malignancy These side effects can have important consequences on quality of life for all men. Prostate Cancer in MSM Although MSM and heterosexual men have similar concerns regarding prostate cancer and Prostate cancer is the number one noncutaneous desire for cure, there are several unique differences cancer in men with a lifetime risk of the malig- regarding sexual behavior, which can impact the nancy of almost 17 % [84 ]. No study has ever experience of the potential side effects. Although demonstrated an increased risk or incidence of anal intercourse is not an exclusively gay male prostate cancer in MSM. However, MSM are practice nor is it practiced by all MSM, it is more known to be less aware of the pathophysiology of frequent in MSM. Anal penetration requires a more prostate cancer and the impacts of its treatment as rigid erection than vaginal penetration due to anal compared to their heterosexual counterparts [85 ]. muscle tone. Hence, even a small decrease in the Many factors contribute to this knowledge gap fi rmness of the erection may have a greater impact between MSM and heterosexual patients regard- on sexual performance for MSM who penetrate ing prostate cancer and the effects of its treatment. their partner anally (tops) as compared to hetero- The aforementioned concerns about disclosure of sexual men engaging in vaginal intercourse. Anal gay identity to a provider may dissuade some receptive partners (bottoms) may experience plea- MSM from mentioning their particular concerns sure from stimulation of the prostate gland. Loss of about sexual function to their provider [86 ]. the prostate to surgery, rectal wall fi brosis from Furthermore, the vast majority of survey tools for radiation, or anatomical changes in the pelvis assessment of treatment response after prostate which predispose men to anodyspareunia may cancer have a heterosexist focus (e.g. question- exert a disproportionate infl uence on sexual enjoy- naires that ask if erection is suffi cient for vaginal ment for MSM who bottom. penetration) [87 ]. Despite an obvious impact of prostate cancer treatment on anal intercourse the paucity of research on this behavior makes counseling Helpful Hint extremely diffi cult. Clinicians should ask patients All men (including gay and bisexual men) (particularly MSM) preoperatively about the are at risk for prostate cancer. Screening for importance of insertive and receptive anal inter- prostate cancer is controversial but should course to their sexual expression. Pending the be discussed with all men regardless of results of this revelation, clinicians can at least sexual orientation. introduce the possibility of side effects following treatment and may even use this clinically relevant data to inform the type of intervention recommended. Given recent trends towards early treatment of The importance of ejaculation has also been prostate cancer the majority of the negative demonstrated to be higher amongst MSM as effects of the disease arise from treatment and not compared to heterosexual men. It has been the malignancy itself. Treatments for prostate hypothesized that ejaculation is an important sign 16 Urologic Issues in LGBT Health 303 of sexual gratifi cation among MSM. Furthermore, vascular bundles involved in sexual arousal and Wassersug hypothesized that the impact of the orgasm. Prostatectomy also carries substantial HIV epidemic changed the act of ejaculation potential for urinary and sexual morbidity so there making a visible ejaculation important from a is little motivation to remove it in GAS. Despite disease transmission standpoint [ 35]. Given that this fact, the rates of prostate cancer in male to ejaculation is dependent on an intact prostate, it female transgender patients are extremely low. The is very important to counsel patients on the likeli- exact numbers are unknown but there have been a hood of ejaculation loss after surgery or radiation few case reports of transgender patients on hor- for prostate cancer. mone therapy presenting with prostate cancer [92 , Research also suggests that penis size plays a 93 ]. By defi nition, these patients have castrate more important role in the psychosexual health of resistant prostate cancer and are treated as such. It MSM, in that men with larger penises report is thought that the lower rate of prostate cancer improved health. A study by Grov et al. found among transgender patients is the deprivation of that men with “below average” penis size fared testosterone. For this reason, transgender patients signifi cantly worse on a multifaceted score of who are not on hormonal supplementation or on psychosocial adjustment [88 ]. Given the inci- incomplete blockade carry a risk of developing dence of penile shortening has been shown to be prostate cancer and should be screened similarly to as high as 68–71 % of men following radical men. Although controversial, this screening should prostatectomy with a mean decrease of 1.1– include shared decision making with a discussion 4.0 cm [ 89 , 90 ], it is important that MSM be of risks of screening based on family history. informed of this potential side effect. Following this conversation, prostate cancer Qualitative research performed by Hartman screening can include a PSA serum level and digi- et al. of same sex couples impacted by sexual tal rectal exam. The most important concept is that dysfunction following radical prostatectomy transgender patients still have a prostate and there- highlight important differences between hetero- fore carry a risk for prostate cancer which varies sexual and same sex relationships [ 91 ]. For based on the duration of hormone therapy. example, navigating changing sexual roles following surgery is a unique challenge faced by same sex couples. For some couples, sexual roles Bladder Cancer in LGBT Patients may include one partner preferring anal receptive intercourse and the other anal insertive. Following The number one risk factor for developing uro- surgery, these roles can evolve and impact the thelial cell carcinoma of the bladder is cigarette pre-surgical dynamic. Furthermore, the study smoking [94 – 97 ]. Given the increased incidence identifi ed the use of open relationship as a coping of smoking among LGBT persons as compared strategy for maintaining sexual satisfaction that to heterosexuals [98 ], there is a resultant increase has not been identifi ed previously among hetero- in risk for developing bladder cancer. For this sexual couples [91 ]. Such studies, illustrate the reason, screening LGBT patients for smoking is importance of tailored pre and postoperative critical, so smoking cessation counseling can be counseling for same sex couples focusing on appropriately initiated. their unique dynamics and needs.

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Kristen L. Eckstrand , Jennifer Potter , and E. Kale Edmiston

• Discuss the preventive, sexual health, surgical, Purpose and family-building OB/GYN health needs of individuals across the LGBT spectrum The purpose of this chapter is to provide an • Discuss the social, economic, and political overview of obstetric and gynecologic care for aspects of sexual, reproductive, and family LGBT individuals, understanding the unique dif- planning care for LGBT communities ferences between each of these communities, and how to optimize delivery of care in evolving political and healthcare landscapes. Introduction

Obstetrics and gynecology (OB/GYN) has Learning Objectives historically been defined as the provision of care to women, specifically their reproductive • Discuss the barriers in accessing and receiving organs, across the lifespan and during preg- OB/GYN care for LGBT individuals nancy. This definition alienates certain individuals from care typically provided by OB/ GYN practitioners, specifically cisgender men K. L. Eckstrand , M.D., Ph.D. (*) and transgender individuals. In actuality, OB/ Vanderbilt Program for LGBTI Health, Vanderbilt GYN encompasses the provision of care irre- University Medical Center , Nashville , TN 37232 , USA spective of sex, sexual orientation, gender Department of Psychiatry , University of Pittsburgh , identity, and natal pelvic anatomy. In addition Pittsburgh , PA , USA e-mail: [email protected] to cisgender women, OB/GYN practitioners can care for: J. Potter , M.D. Harvard Medical School , Boston , MA , USA • Transgender men (FTM) who retain natal Beth Israel Deaconess Medical Center , Boston , MA , USA pelvic structures and require routine OB/GYN care or select surgical procedures The Fenway Institute , Boston , MA , USA e-mail: [email protected] • Transgender women (MTF) who may be candidates for breast cancer screening, STI screen- E. K. Edmiston , PhD Vanderbilt Program for LGBTI Health, Vanderbilt ing, evaluation of postsurgical pelvic symptoms, University Medical Center , Nashville , TN 37232 , USA and Pap testing of neovaginal tissue if there is e-mail: [email protected] potential of HPV infection

© Springer International Publishing Switzerland 2016 309 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_17 310 K.L. Eckstrand et al.

• All individuals seeking family planning support Table 17.1 Common biases and assumptions when and prenatal and obstetrical care, including caring for LGBT and gender nonconforming patients individuals who are partners and/or prospec- • Heterosexuality tive parents • All patients use traditional labels related to sexual • All individuals who are eligible for anal Pap orientation or gender identity tests based on risk for anal HPV infection • Sexual orientation is based on appearance • Sexual orientation is based on sexual practices • Choice of sexual partners is always based on Indeed, OB/GYN practitioners provide care to sexual orientation all individuals. • Sexual engagement is always a matter of choice • Identity, attraction, and behavior don’t change across the lifespan Helpful Hint • Gender identity is equivalent to sexual orientation OB/GYN practitioners can provide care to all • Gender identity is based on natal sex or pelvic anatomy patients, regardless of sex, sexual orientation, • Gender identity depends on what interventions a gender identity, or natal pelvic anatomy. patient has chosen in transitioning • Transgender people must also be gay, lesbian, or bisexual Another important facet of OB/GYN is that the care provided requires exquisite sensitivity on organs often leads to heteronormative assump- the part of providers. As discussed in Chap. 13 , tions promoting bias, and even trauma, within gender dysphoria refers to the distress that some healthcare. people, often transgender and gender noncon- While all healthcare providers carry some forming individuals, may experience when their bias towards certain patients or diagnoses, it is body does not align with their gender identity. important for all providers to recognize and miti- Distress in this context can manifest in many gate their biases in order to provide compassion- ways, including disgust or discontent with one’s ate and comprehensive healthcare to all patients. own body. Negative body image can also occur in Key to mitigating bias for LGBT patients is to individuals who have experienced interpersonal fi rst be aware of common biases and assump- trauma [1 ], and LGBT individuals experience tions that manifest in the OB/GYN context high rates of violence and interpersonal trauma (see Table 17.1 ). [2 ]. For individuals living with trauma and/or While the terminology is discussed in detail in experiencing gender dysphoria, the patient his- Chap. 1 , here gender identity refers to a person’s tory and physical exam can be re-traumatizing. innate, deeply-felt identifi cation as a man, woman, The context for what may be traumatic varies by or another gender which may or may not corre- individual but common re-traumatizing experi- spond to the person’s external body or assigned ences in healthcare can include use of certain sex at birth. Sexual orientation refers to a person’s words or phrases to describe parts of the body, enduring physical, romantic, emotional, and/or referring to exam fi ndings as “normal”, referenc- spiritual attraction towards certain sexes/genders. ing the patient’s physical appearance, exposure It is important to distinguish sexual orientation or touching of parts of the body, and the insertion and gender identity from one another, as well as of specula, swabs, or fi ngers in the vagina or from natal sex, sexuality, and sexual practices. anus. The potential for trauma or re-traumatization Regardless of sexual orientation and gender iden- should prompt OB/GYN providers to approach tity, individuals may express their attraction or LGBT patients with the utmost sensitivity and desires toward others through a variety of sexual compassion (see section “Performing A Sensitive practices, or behaviors . Attraction may be towards History and Physical”). Despite this, the strong a certain sex (ex. male), body type (ex. mascu- association between OB/GYN and provision of line), or gender expression (ex. gender noncon- care to cisgender women with natal female pelvic forming). This summation of sexual orientation, 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 311 attraction, and behavior infl uence the overall The diversity of identity, attraction, and behav- construct of sexuality. Importantly, each of these ior across sexual orientations and gender identities constructs can change over time [3 , 4 ], requiring thus requires a patient- and family-centered that providers continually assess these items to approach to care that takes each of these dimen- maintain patient rapport, evaluate risk, and sup- sions into account. Depending on a patient’s port health. motivations for accessing the healthcare system, Gender identity can also be expressed through the relative importance of these items to the behavior , from modifying gender expression to patient and/or their immediate care may vary. seeking medical or surgical interventions. Unlike Adept practitioners will not only understand aspects of sexuality that may change over adult- these dimensions, but also be able to apply them hood, gender identity tends to be stable after seamlessly in the healthcare setting. childhood [5 ]; however, one’s understanding of This chapter aims to support this level of com- their own gender identity and gender expression petence among all health professions providing may change as norms within societies and cul- OB/GYN related care to LGBT patients, including tures evolve. Figure 17.1 describes some of the understanding the barriers to OB/GYN care and complex language and interplay between iden- health disparities faced by LGBT patients, recom- tity, attraction, and behavior as it relates to sexual mendations for preventive screening, routine orientation and gender identity. gynecologic care, fertility, and reproduction.

Fig. 17.1 Interplay between identity, attraction, and behavior as it relates to sexual orientation and gender identity. Figure provided by K. Eckstrand 312 K.L. Eckstrand et al.

Barriers to OB/GYN Care individuals have not been discriminated against in healthcare but have experienced discrimination in While the general barriers to accessing and other settings, fear of potential discrimination or a receiving healthcare for LGBT communities are general sense of distrust of the healthcare system discussed in Chap. 2 , understanding barriers perti- can also lead to avoidance of care. nent to OB/GYN care in particular will support When accessing care, implicit biases or assump- improved provision of care to LGBT patients in tions (see Table 17.1 ) can cause challenges in pro- this context. In general, LGBT individuals are vider-patient interactions that contribute to patient more likely to delay emergent, primary, and pre- discomfort or distrust. Biases and assumptions ventive care [6 –8 ]. This is due to signifi cant barri- leading to distrust or felt disrespect can occur at ers to care that include felt or perceived stigma and any point during the patient- provider encounter: discrimination, prior negative experiences within health care, unequal access to health insurance, dif- • Intake & Waiting Room : clinic forms not fi culty fi nding a provider competent in addressing allowing for disclosure of sexual orientation the unique needs of LGBT patients, mispercep- or gender identity, or negative encounters with tions about risk, and general health systems chal- front desk or clinical support staff lenges in providing care for LGBT patients. • Introductions: not ascertaining or applying Because of OB/GYN’s focus on sexual and appropriate terminology for gender identity, reproductive health, conversations and elements of pronouns, name, sexual orientation, and/or the physical examination may make patients feel partner status particularly vulnerable, and when an interaction • Patient History : assumptions confl ating iden- does not go well, this outcome will pose an addi- tity, attraction, and/or behavior (i.e., provider tional barrier to receiving state-of-the-art health asks a patient who identifi es as lesbian about care. Understanding the nature and impact of contraception before inquiring about sexual interpersonal stigma is crucial in order to achieve orientation and sexual behavior) or not trust- truly supportive and productive provider- patient ing a patient’s response to questions relationships. Interpersonal stigma describes inter- • Physical Examination : not using the language actions between individuals whereby one person is that a patient has used for themselves or stigmatized [9 ]; this can include explicit discrimi- assuming the exam may not be traumatic nation such as abuse or violence, or implicit biases that can unconsciously shape attitudes or behav- Clinicians need to be able to mitigate their iors. The felt experience of interpersonal stigma own biases and assumptions within patient- when receiving OB/GYN care promotes patient provider encounters such that when errors occur, reluctance to access care. For example, LGB they are able to re-establish rapport rather than women who felt they were discriminated against continuing to alienate patients from engaging when receiving healthcare were less likely to have fully in care. Clinicians also serve as role models had a Pap test in the prior year [10 ]; this kind of for clinic staff; modeling appropriate, respectful reaction to stigma is especially pronounced among behavior—including apologizing and mitigating androgynous/gender nonconforming LGB women bias—is a critical component of leading an inter- [ 11]. Indeed, the relationship that gender noncon- professional team to support patient care. forming or transgender patients have with their Even when providers have a professional and bodies can pose a signifi cant barrier to care— compassionate bedside manner, the lack of pro- especially if a provider is unaware or dismissive of vider training can still result in inequitable care. this relationship during any part of the clinical From the time of enrollment in undergraduate encounter. For many LGBT people, a history of medical education through postgraduate (resi- negative experiences with healthcare providers dency) and continuing education years, a dearth can evoke re-traumatization when accessing care, of instructional materials are available to support resulting in an avoidance of care. Even if LGBT clinician competence in providing care to LGBT 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 313 patients [12 , 13 ]. This training defi cit is also pres- • Transgender women are not at risk for devel- ent in other health professions [14 , 15 ]. The lack oping prostate cancer of training encompasses clinical knowledge, the • Intimate partner violence between partners facts and information necessary to provide com- identifying as LGBT does not occur or is rare petent patient care to LGBT patients within health • Transgender men taking cross-gender hor- systems; addressing negative attitudes or uncon- mone therapy cannot get pregnant scious bias that may affect a provider’s behaviors • LGB women do not need contraception towards an LGBT patient; and facilitating the development of a broad spectrum of skills that are Structural concerns further contribute to the necessary to provide competent care for an LGBT disparities in care. For example, while access to patient. This lack of training is apparent across comprehensive health insurance is improving for specialties, including OB/GYN, however LGBT individuals, signifi cant barriers still improved training itself can support a healthcare remain that adversely affect LGBT patients, par- infrastructure welcoming of all LGBT individuals ticularly those requiring OB/GYN care. These in healthcare, from patients to providers [16 , 17 ]. barriers center on the fact that insurance covers Improved training itself can further address the sex-specifi c, rather than person-specifi c, health barrier of misperception of risk among patients maintenance and disease. For example, insurance and providers. Misperception of risk can be may cover Pap tests for a transgender man with understood through the discrepancies between (1) natal female pelvic organs while he is insured as what patients believe, (2) what providers believe, female, but not if he is insured as male. Similarly, and (3) what evidence demonstrates. Within OB/ transwomen taking long term cross-gender hor- GYN, one example of risk misperception is HPV mone therapy may not be able to get coverage for infection and cervical cancer among lesbian, gay, mammography. Gender-affi rming surgical proce- and bisexual (LGB) women. Studies have demon- dures are variably excluded, largely based on strated that LGB women are less likely than het- societal bias that these procedures are not medi- erosexual women to believe they can be infected cally necessary and represent unnecessary expen- by HPV, which leads to a decrease in HPV vacci- ditures. However, preliminary evidence suggests nation uptake and receipt of Pap tests [18 ]. Most gender transition is helpful in improving mental providers do not ask about sexual orientation, health [23 ] and presumably, other aspects of qual- thereby failing to apply orientation as a useful ity of life. Beyond transgender-specifi c exclu- marker in identifying risk, despite evidence that sions, many insurance companies don’t cover LGB women are at increased risk for breast can- certain assisted reproductive technologies— cer [19 –21 ]. Indeed, one small study among which can be the primary roadblock to same-sex women diagnosed with breast cancer demon- couples building families. strated that no providers asked about sexual orien- Electronic health records (EHRs) can be used tation [22 ]. Other misperceptions about risk in the to support continuity of care and clinical deci- LGBT community commonly held between sion making when caring for LGBT patients. patients and providers can include: There is substantial controversy regarding documentation of sexual orientation and gender iden- • LGB women do not need preventive vaccines tity (see Chap. 7 ); however, EHRs can be used to such as HPV, hepatitis A/B record gender identity, pronouns, name, sexual • LGB women do not need to be screened for STIs orientation, and/or partner status, which can • LGB women and transgender men do not need remind all team members participating in a to be screened for cervical cancer patient’s care how to best establish and/or main- • Transgender women and transgender men are tain rapport. Further, EHRs can support evi- not at risk for developing breast cancer dence-based clinical decision-making to address • Transgender men are not at risk for developing the above misperceptions about risk by integrating ovarian or endometrial cancer screening protocols appropriate for each indi- 314 K.L. Eckstrand et al. vidual’s unique circumstance into the EHR. practice, a statement affi rming their presence, Disclosure and improved care are integrally and empowering patients to begin the encounter. linked: for example, women—even younger For example, “Good morning, my name is Dr. women [ 24]—who disclose their sexual orienta- Smith and I am one of the gynecologists here. I tion are 2–3× more likely than women who do know we haven’t met before, but I understand you not disclose their orientation to adhere to cervi- have some concerns you’d like to discuss so I’m cal cancer screening recommendations [ 25– 27 ]. glad you came in. How can I help you today?” It Asking about and documenting sexual orienta- can also be helpful to ask patients in advance if tion and gender identity in EHRs in a systematic there are ways that the experience can be made way can support improved preventive care. more comfortable (ex. not standing between the patient and the door), and to request that they inform you if they feel uncomfortable during any Performing a Sensitive History part of the encounter. and Physical Exam Based on the patient’s response to this initial inquiry, further conversation can explore con- Performing a sensitive history and physical exam cerns that the patient voices. It is important to should be a priority for all patients. This is par- keep the past medical history relevant to the ticularly true when working with patients who patient’s presenting concerns, rather than asking are likely to have experienced trauma and/or who questions purely out of curiosity. If patients may be uncomfortable with their bodies, and appear confused, explaining why certain ques- when the chief complaint is related to a sensitive tions are being asked can facilitate disclosure of topic (e.g. pain during sex, abnormal bleeding, sensitive information. As some patients may feel galactorrhea, etc.). Of utmost importance during disgust or shame around certain words used to both the history and physical is for the patient to describe parts of the body, asking what terminol- feel they are in control of the encounter. This ogy they would like to have used can help patients locus of control can include environmental fac- talk more openly about their concerns. For exam- tors, interpersonal factors, and personal factors ple, some patients may want to say “chest” rather (see Table 17.2 )—each of which can be facili- than “breasts” or front or back “hole” when refer- tated with a sensitive history and physical exam. ring to the vagina or anus. Using the patient’s language throughout the encounter is not only supportive, but reduces confusion and helps to History elucidate a more thorough history. As the patient is telling their story, pay atten- When beginning a clinical encounter, particularly tion to their body language and responsiveness. with new patients, it is helpful to begin with Do they become restless or cross their arms? introductions, informing patients of the scope of Do they break eye contact or look at the ground?

Table 17.2 Factors contributing to patient locus of control Environmental Interactional Internal • Door open or closed • Nonverbal communication (e.g., • Self-acceptance • Location of provider relative to self eye contact) • Agency, • Presence of a support person of one’s own choosing • Choice of language (e.g., use of decision- making • Visibility of exam equipment (ex. specula) pronouns, anatomical terms) capacity • Temperature of the room and equipment • Provider listening/responsiveness (e.g., warming of speculum and/or lubricant) • Physical touch (e.g., obtaining • Degree of physical vulnerability (e.g., appropriate permission before proceeding) draping, patient position on exam table, etc.) • Time spent in clinical encounter 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 315

Do they become withdrawn or avoid answering procedure. It may be helpful for some patients to questions? Does the tone of their voice change? be able to make eye contact with the provider These can all be signs that the patient is uncom- during the exam. Anal Pap tests can be performed fortable. In these circumstances, it can be helpful with a patient lying on their side or in the same to refl ect back to the patient that it looks like they position as the speculum exam, so allow patients are having a diffi cult time and ask what is causing to choose what they prefer. Some patients may distress. Offering tissues or a glass of water, ask- want a support person to join them in the room. ing if they need a moment alone or what else they Finally, before beginning the exam, emphasize to think might be helpful can all be ways to help the patient that they will be in control throughout establish trust. the experience and can ask to stop the exam at any time. When performing the exam itself, unless Physical Exam explicitly requested otherwise by the patient, always explain what you propose to do next and The physical exam—and the pelvic exam in give ample warning about the next part of the particular—can be extremely diffi cult, even body to be touched. If the patient becomes vis- traumatic, experiences. If there is no urgent ibly distressed during any part of the exam, ask need to perform an exam based on the patient’s what you can change to make the exam more chief complaint, deferring it until a later time is comfortable. Some patients may not be able to appropriate. Performing physical exams only articulate how to improve the exam, so asking a when clearly needed and always with the more directed question such as, “Do you want express permission of the patient is crucial in me to stop the exam?” can provide the patient building trust. an option that they can answer non-verbally. Before beginning an exam, explain to patients Once the exam has been completed, offer what procedures will be performed and why, and patients the opportunity to debrief about the what to expect in terms of how and where parts of experience. the body will be touched. Remember to continue using patients’ preferred anatomical terminology throughout this explanation. After outlining the OB/GYN-Related Health Disparities exam, ask patients if there are parts of the exam and Screening Recommendations that they are concerned about, and whether there among LGBT Populations are things that would make the exam easier. Some patients may have had a similar exam before and OB/GYN practitioners can address many of the if so, ask what made the experience comfortable health disparities faced by LGBT individuals. for them. For other patients, offering options to While the disparities affecting LGBT individuals ease the exam can be helpful. For example, some vary by sexual orientation and gender identity, patients may prefer to have the exam completed they also depend on natal and current sex anat- as quickly as possible whereas others may want omy, sexual and behavioral risk factors, use of the exam to be done slowly. In certain circum- exogenous sex steroids, and many other factors. stances, patients can be offered an antianxiety Based on the available literature, this section will medication (e.g., short-acting benzodiazepine) in focus on population-level disparities affecting order to perform the exam most comfortably. If a LGB cisgender women and transgender men and speculum exam is required, ask patients if they women, while acknowledging the research cave- would prefer to insert the speculum themselves. ats arising from not accounting for gender non- Some patients may also wish to observe the conformity among LGB cisgender women and exam; offering a hand mirror for the patient to sexual orientation among transgender individu- hold and rest on the inside of their leg so that they als. Other infl uencing factors will be discussed can observe may help to relieve anxiety about the relative to the specifi c disparities below. 316 K.L. Eckstrand et al.

Lifestyle Factors refl ective listening, and affi rmation to engage patients in evaluating specifi c behaviors relative Throughout this section, lifestyle factors infl u- to their personal values, the potential benefi ts of encing heightened risk among LGBT populations change, and structuring goals for change. Among for certain OB/GYN-related health conditions gay and bisexual men, motivational interviewing are discussed. Briefl y, these include: has been shown to reduce sexual-risk taking and substance use [ 31 ]. More generally, motivational • LGBT individuals are more likely to smoke interviewing has been shown to be effective to [28 , 29 ] reduce tobacco, alcohol, and illicit substance • LGB cisgender individuals are more likely to use, support weight loss, and increase physical drink heavily or have had diffi culties with activity—all behaviors that reduce risk for alcohol in the past [28 , 29 ] chronic disease [ 32 ]. As discussed previously, • Cisgender lesbians are more likely to be over- “outness” to providers has the potential to help weight [28 ] reduce risk and keel patients’ engaged in care. • LGB cisgender women have higher rates of However, irrespective of the preferred outcome nulliparity, more sexual partners, older age at from a risk reduction standpoint (ex. healthy fi rst childbirth, and fewer pregnancies [19 – 21 ] weight, tobacco cessation), supporting patient control in goal setting and healthcare is extremely Why these risk factors may be present for indi- important for the clinical encounter among vidual patients is complex. For example, the LGBT individuals [ 33, 34 ]. explanations for LGB cisgender women being overweight include that they may be “protected from pervasive cultural messages about the ideal Cancer female body by lesbian cultural values” [30 ], an overweight appearance may affi rm certain aspects Breast Cancer of gender expression, and/or overeating may be a While some studies have not found elevated risk coping mechanism. Similarly alcohol and tobacco [35 , 36 ], increasing evidence over the past decade use among LGBT communities may be coping suggests that LGB cisgender women are at mechanisms used to manage minority stress (see increased 5-year [28 ] and lifetime risk for breast Chaps. 2 , 4 , and 13 ), or they may be part of com- cancer due to higher rates of nulliparity, lower munity culture in a certain geographic location. It rates of abortion, fewer pregnancies, lower rates is important to determine an individual’s motiva- of breastfeeding, and older age at fi rst childbirth, tions for engaging in lifestyle behaviors despite as well as higher rates of obesity, smoking, and negative health consequences. Discussing this alcohol use [19 – 21 ] (see Table 17.3 ). Indeed, information with patients provides information according to the National Health Interview that is crucial for devising successful intervention Survey, women cohabitating with other women strategies and educational approaches. had greater age-adjusted risk for fatal breast can- Lifestyle modifi cation can be helpful in cer [37 ]. While studies on the actual incidence reducing risk for certain health conditions, how- and prevalence of breast cancer among LGB cis- ever supporting behavioral risk modifi cation as a gender women are limited, preliminary research practitioner requires understanding how patients does show that 1-year incidence rates for breast are and are not able to change, their own expec- cancer in premenopausal women are slightly ele- tations of themselves, how to best support their vated in both lesbian and bisexual women com- change and, most importantly, how to be an ally pared with heterosexual women [38 ]. during the change process. Motivational inter- Despite this heightened risk, evidence suggests viewing is one strategy for understanding and that LGB cisgender women are less likely than engaging patient-centered change. It is a non- heterosexual women to have health insurance or judgmental practice using open-ended questions, to have had regular screening with mammography 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 317 ]) 52 , ] (continued) 51 53 ]) 43 ]) ]) 50 50 , , 49 49 ]) 45 with penile rming surgery ] ]) ]) 43 39 39 ]) 43 ]; UCSF [ 42 people ages 21–65 OR Pap test plus HPV test every 5 test plus HPV every people ages 21–65 OR Pap years for people ages 30–65 (USPSTF Grade A [ had gender-affi who have technique [ inversion transgender individuals if additional risk factors (BRCA2 if additional risk factors transgender individuals etc.) are present (AJR history, family mutation, positive [ mammography as for natal females (UCSF [ (USPSTF Grade B [ modalities (USPSTF Grade D [ account genetic mutation (BRCA1/2) and patient values account genetic mutation (BRCA1/2) and patient values (USPSTF Grade C [ • 3 years for test every with a cervix: Pap all individuals For • in patients vault visual inspection of the vaginal Regular • Biennial mammography is recommended in MTF • Primary HPV screening in people ages 25–29 [ • and exam annual chest wall/axillary FTM should receive • 50–74 years Biennial screening mammography for women • screening Do not screen as there are no effective • into Screening mammography before age 50 should take • for all genders (CDC [ HPV vaccine ] 41 , 40 ] 18 ] 29 , 19 ] ] risk for breast cancer ] 48 – 21 41 – , 46 , 19 40 ] ] 24 41 44 , 40 ] 54 ] ] and lifetime [ 38 28 ] 37 ] 55 1.01–10.21) [ cytology [ cytology (IRR, 1.06; 95 % CI, 1.06–1.06) and bisexual (IRR, 1.10; 95 % CI, (IRR, 1.06; 95 % CI, 1.06–1.06) and bisexual [ 1.10–1.10) women bisexual or heterosexual women [ women or heterosexual bisexual • No increased risk of cancer [ • No increased risk of breast cancer [ • 3.2, CI = breast cancer (HR Greater age-adjusted risk for fatal • mammography [ Decreased receipt of regular • of cervical cancer No studies on incidence/prevalence • [ to be diagnosed at a later stage and fatal Cases more likely • on incidence/prevalence No studies available • test with unsatisfactory a lifetime Pap Greater odds of having • in both lesbian One-year incidence rates of breast cancer elevated • of cervical cancer No studies on incidence/prevalence • tests compared with receipt of Pap lower have Lesbian women Transmen Transmen • No studies of risk/screening Transwomen Transwomen • No studies of risk/screening Transmen • tests [ rates of Pap Lower LGB women • No studies on risk, incidence/prevalence • for all genders (CDC [ HPV vaccine LGB women LGB women • [ uptake rates of HPV vaccine lower have LGB women Community Research (compared to general population) Screening recommendations Transmen Transmen • No studies on risk, incidence/prevalence Transmen Transmen Transwomen • • No studies on risk, incidence/prevalence No studies on risk, incidence/prevalence LGB women • are at higher risk [ LGB women a Cancer incidence, prevalence, and screening recommendations in LGBT populations receiving OB/GYN care OB/GYN care and screening recommendations in LGBT populations receiving Cancer incidence, prevalence,

a b Vulvar/Vaginal Vulvar/Vaginal cancer Breast cancer LGB women • Increased 5-year [ Ovarian Ovarian cancer Cervical cancer Table Table 17.3 318 K.L. Eckstrand et al. ]) 50 , 49 e of natal pelvic structures that these e of natal pelvic structures that these ina screening menopausal bleeding to a healthcare provider menopausal bleeding to a healthcare provider • test based on risk and patient preference for Anal Pap • screening test / recommendations No available • abnormal or post- Educate patients to report any • for all genders (CDC [ HPV vaccine ] ] 59 ], obesity 61 56 , 29 , 28 American Journal of Roentgenology ] ] 63 63 AJR ] , , 60 62 62 ] (PCOS), and decreased use of oral contraceptives [ ] (PCOS), and decreased use of oral contraceptives 58 ], higher rates of nulliparity and polycystic ovarian syndrome ovarian ], higher rates of nulliparity and polycystic , 28 57 intercourse [ intercourse [ receptive intercourse than heterosexual or lesbian women [ or lesbian women intercourse than heterosexual receptive increased risk to smoking/alcohol use [ [ [ intercourse [ • No studies on incidence/prevalence • to engage in anal are 2.5 times more likely women Bisexual • No studies on incidence/prevalence • No studies on incidence/prevalence Transmen Transmen • engaged in unprotected anal 25 % of transgender men have Transmen Transmen • No studies on risk, incidence/prevalence LGB women LGB women • theoretical however No studies on risk, incidence/prevalence, Community Research (compared to general population) Screening recommendations Transwomen Transwomen • engaged in unprotected anal have 80 % of transgender women (continued) United States Preventive Services Task Force, Force, Services Task United States Preventive

a Anal cancer LGB women • engaged in lifetime anal receptive 17.2 % of lesbians have Endometrial cancer Neovaginal cancer is rare, but may occur in transwomen depending on the surgical technique used for construction of the neovag depending on the surgical may occur in transwomen cancer is rare, but Neovaginal Transwomen are not at risk for ovarian cancer, cervical cancer, endometrial cancer, and unwanted pregnancies due to the absenc pregnancies and unwanted endometrial cancer, cervical cancer, cancer, are not at risk for ovarian Transwomen USPSTF Table 17.3 Table a b conditions affect conditions affect 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 319 in accordance with ACS guidelines [19 , 29 , 64 ]. While systemic barriers to care may contribute to Helpful Hint this disparity, misperception of risk may also All LGB cisgender women should receive infl uence the decreased rates of screening. In one mammography screening in accordance small sample (n = 150 LGB cisgender women, with guidelines from the United States 400 heterosexual cisgender women), LGB cis- Preventive Services Task Force (USPSTF). gender women, compared with their heterosexual counterparts, had lower intentions to obtain mammography (OR 0.40, CI 0.21–0.75) [65 ]. Less information is known about the contri- In this sample, the relationship between sexual bution of risk factors, incidence, and prevalence orientation and intent to obtain screening was of breast cancer in individuals who are transgen- mediated by the beliefs that they are less likely to der. The fi rst report of breast cancer in a transgen- ever get breast cancer and perceived greater dis- der individual was published in 1988, presenting advantages of mammography [65 ]. This fi nding the case of a transgender woman who had been has yet to be replicated and thus may also be an receiving cross-gender hormone therapy (CGHT) effect of the specifi c sample size and population. [68 ]—subsequently causing controversy over the One study found that a targeted intervention of ethical implications of providing estrogen in the 2 h sessions once per week for a month that pro- context of increasing risk for estrogen dependent moted breast cancer prevention among LGB cis- cancers. Since that publication, others have reported gender women signifi cantly increased rates of cases of breast cancer in both transgender men mammography screening (OR 2.13, CI 1.9–2.40) [ 69 , 70 ] and transgender women [22 , 23 , 25 , 26 ]. [ 66 ]. However, even in the absence of such an While no studies have systematically looked at intervention, LGB women who report more trust risk for breast cancer, two studies examining in their medical provider are more likely to report incidence of breast cancer have been published. intention to receive mammography, suggesting The fi rst study examined the electronic health provider trust is an important component of sup- records of 3,102 transgender individuals, fi nding porting breast cancer prevention among LGB cis- that risk for breast cancer was lower in transgen- gender women [65 ]. der men (5.9 per 100,000 person- years) and Breast cancer screening recommendations transgender women (4.1 per 100,000 person- [39 ] for average-risk LGB cisgender women are years) compared with cisgender women, but equivalent to those for their heterosexual coun- within expected norms for cisgender men [ 40 ]. terparts (see Table 17.3 ): The second study of 5,135 transgender individuals similarly did not fi nd an increased incidence • Biennial screening mammography for women of breast cancer, but did report that all cases in 50–74 years (USPSTF Grade B) transwomen were identifi ed at a late stage and • Biennial screening mammography before age were fatal [41 ]. Another study found that among 50 years should be an individual patient’s transwomen, breast cancer occurs at a younger decision informed by discussion of risk assess- age and is more commonly estrogen receptor ment and careful consideration of the patient’s negative than in cisgender males [42 ]. values regarding specifi c benefi ts and harms Because of the paucity of data on the incidence (USPSTF Grade C) and prevalence of breast cancer among transgen- • The USPSTF recommends against clinicians der individuals and the long-term effects of any teaching women how to perform breast self- masculinizing or feminizing cross-gender hor- examination (Grade D) mone therapy , there are limited recommendations • The family history should be regularly updated for breast cancer screening for transgender indi- and patients with histories suggestive of a viduals. The UCSF Center for Transgender genetic predisposition to breast cancer should Excellence and the American College of be referred for genetic counseling (NCCN [67 ]). Roentgenology (ACR) address mammography 320 K.L. Eckstrand et al. screening for transgender women, recommending context includes providers, where disclosure of that transwomen who have received feminizing sexual orientation to providers is related to hormone therapy for 5 or more years and have greater perceived social support [74 ]. This is additional risk factors, such as a BRCA mutation important not only for medical providers, but also or positive family history, undergo routine mam- surgical providers. For example, when discussing mography screening [39 , 42, 43, 71]. Fortunately, reconstructive surgery of the breast, LGB women it has been demonstrated that both mammography may voice different aspects of decision-making and breast sonography are easily performed in other than aesthetic appearance that are integral transwomen even if they have received breast to their sexual orientation, including body implants [72 ], so presence of implants should not strength and physical functioning. Similarly, deter regular screening. Among transmen, the transgender individuals may have a unique rela- UCSF Center for Transgender Excellence recom- tionship with their bodies that requires personal- mends annual chest wall/axillary exam and mam- ized decision-making and care regarding type of mography as for natal females [ 43]. This is reconstruction procedure elected or whether to recommended for several reasons: transmen may even undergo reconstruction at all. Surgeons who have chest tissue that may have been exposed to focus on the aesthetic appearance of the breast, estrogen during a typical feminizing puberty; without discussing other aspects of reconstruc- transmen may not be able to afford, or even want, tion important to patients, may “other” LGBT breast reduction surgeries or cross gender hor- individuals [76 ]. mone therapy and therefore may still have breast tissue; and breast tissue, particularly in the axilla Cervical Cancer and around the nipple-areola complex, can still be Similar to breast cancer, LGB cisgender women present even after top surgery. Risk assessment are at elevated risk for cervical cancer compared tools such as the Gail Model [ 73] have only to heterosexual cisgender women due to certain been validated in cisgender women and should risk factors. These include cervical infection by not be used to estimate risk in transgender indi- the human papilloma virus (HPV), multiple past viduals. Therefore, the best approach currently or current sexual partners, early age at fi rst coitus, is for providers to engage transgender patients history of sexually transmitted infections (STIs), in a discussion of breast cancer risk and allow and decreased use of safer sex techniques [ 10 , 19 , patients to participate in decision-making about 20 , 29 , 77 ], as well as other factors that may whether or not and how often to undergo mam- weaken the immune system over time including mography screening. obesity and cigarette smoking [ 9]. Two common assumptions among patients and providers infl u- ence the perception of risk for cervical cancer: Helpful Hint that cisgender lesbian women have not, or do not All individuals retaining breast tissue with currently, engage in vaginal intercourse with any lifetime estrogen exposure should be men, and that penile-vaginal intercourse is screened for breast cancer based on risk. required to transmit HPV. Contrary to these beliefs, 75–80 % of lesbian women have had sexual intercourse with a cisgender male in their lifetime [60 , 78 ]. Lesbian women can also partner Among women who have been diagnosed with transwomen, who may have a penis. with breast cancer, coping mechanisms for LGB Furthermore, HPV can be transmitted between cisgender women (and likely transgender indi- female sex partners who have never had penile- viduals) are consistent with those of their hetero- vaginal intercourse with men [79 – 81]. Ten per- sexual counterparts, including the importance of cent of WPW who have never had prior social support for positive coping [74 ] and sup- penile-vaginal intercourse with men have cervi- port from partners [75 ]. Social support in this cal cytological abnormalities [ 82 , 83 ]. Research 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 321 on risk for cervical cancer in transgender men This may be in part due to age and education, as retaining a cervix is limited, although some stud- some studies demonstrate that Pap test screening ies report higher levels of tobacco use and history is lower among younger women [ 24 , 46 ] while of sexual violence [6 , 56 ]. the screening gap is less pronounced among Because of these risks, all individuals who older, well-educated LGB cisgender women retain a cervix should follow current cervical [ 25 , 26]. And, while 45 % of LGB women ages cancer screening guidelines : 18–26 have initiated HPV vaccination and 70 % of those starting the vaccine series have fi nished • Screen women aged 21–65 years with cytol- [85 ], uptake of the HPV vaccine is lower ogy alone (Pap test) every 3 years or, for among lesbian cisgender women [18 ]. women aged 30–65 years who want to lengthen Similarly, transgender men retaining a cervix the screening interval, screen with a combina- have a 37 % lower odds of receiving routine Pap tion of cytology and human papillomavirus tests compared with cisgender women [ 54 ]. (HPV) testing every 5 years [ 51 ] (USPSTF Further, when Pap tests are obtained, transgender Grade A) men have a 10 times higher odds of having a Pap • All natal females between the ages of 9 and 26 test with unsatisfactory cytology [ 55]. Length of and all natal males between ages 9 and 21 time on testosterone is associated with an unsatis- should receive the three dose series of the factory Pap test result [55 ], and testosterone can 9-valent HPV vaccine (if available, otherwise cause atrophy of epithelial cells in the cervix that use the quadravalent HPV vaccine); all natal can histologically mimic cervical dysplasia [86 ], males between ages 22 and 26 may also be suggesting that the effects of testosterone may pro- vaccinated [50 ]. duce the histological changes. However, patient • Primary HPV screening can be considered as and/or provider discomfort with the exam may an alternative to the aforementioned screening also infl uence the ability to obtain a technically methods [53 ] optimal specimen [55 ]. Irrespective of the cause, an abnormal Pap test may result in the need for While it is beyond the scope of this chapter to repeat screening. Because of the invasive nature of discuss the details of management after an abnor- a Pap test, particularly among individuals who mal Pap test or positive HPV test, all individuals may have a different relationship with their body with a cervix should receive care as recom- than cisgender females, providers should take mended by the American Society for Colposcopy extra sensitivity and care when explaining the and Cervical Pathology [84 ]. necessity for, and performing, a repeat Pap test.

Helpful Hint Helpful Hint All individuals retaining a cervix should be All natal females between the ages of 9 and screened for cervical cancer according to 26 and all natal males between ages 9 and current US population guidelines 21 should receive the HPV-9 vaccine; all natal males between ages 22 and 26 may also be vaccinated.

Despite these recommendations, there is disparate utilization of Pap tests and HPV vaccination among LGBT communities. Lesbian To date, no studies have reported the incidence/ cisgender women are less likely to receive annual prevalence of cervical cancer, responses to treat- and routine Pap tests [ 47 , 48 , 77] compared with ment, or experiences of survivorship among their bisexual and heterosexual counterparts. LBGT individuals. 322 K.L. Eckstrand et al.

Other Gynecologic Cancers Risk, incidence, prevalence treatment, and Little is known about ovarian, endometrial, and survivorship experiences for vaginal and vulvar vaginal/vulvar cancer in LGBT individuals. Due to cancer in LGBT communities are unknown. As heightened risk factors as discussed in the sections most vulvar and vaginal cancers are due to HPV on breast and cervical cancer, it is believed that infection, providers should follow the aforemen- LGB cisgender women are at increased risk for tioned recommendations for HPV vaccination. In ovarian cancer [44 ]. Cases of ovarian cancer in transgender women who have had genital gender transgender men taking testosterone as part of afﬁ rming surgery using the penile inversion tech- cross-gender hormone therapy have been reported nique (see Chap. 20), the majority of the neova- [87 , 88 ], leading some to hypothesize that andro- gina is keratinized epithelium but some urethral gens may increase risk for ovarian cancer in trans- tissue may be present. As a result, there is still a gender men [89 ]. No studies have addressed risk, small risk for cancer of the neovaginal vault [90 ]. incidence and/or prevalence; however, such studies Pap tests of the neovaginal vault are not recom- would probably not change management as current mended due to the low risk; however, periodic recommendations recommend against screening for visual inspection for lesions is recommended ovarian cancer as no screening method has yet been [ 43]. Similar to other cancers, HIV infection can found to be effective. Similarly, no studies have increase risk for cancer of penile tissue [ 91 ]; as evaluated response to treatment for ovarian cancer transwomen are at increased risk for HIV infec- or survivorship experience in these populations. tion [92 ], HIV status may prompt the desire for Similarly, the increased incidence of smoking more routine visual inspection. Conversations and alcohol use [28 , 29 , 56 ] and obesity [28 ], with patients to understand risk and desire for higher rates of nulliparity and polycystic ovarian screening of the vaginal vault in the absence of syndrome (PCOS) [57 , 58 ], and decreased use of evidence showing that such screening is of any oral contraceptives [59 ] may increase the risk for proven value should be used to help guide pre- endometrial cancer in LGB cisgender women ventive care. and transgender men. No studies to date have discussed the risk, incidence, prevalence, treatment, Gynecologic Cancer Survivorship or survivorship. As a result, until there is a better Survivorship concerns following gynecologic understanding of endometrial cancer in LGBT cancer are incredibly important to address, and communities, any vaginal/genital bleeding after little research is available discussing survivor- menopause or testosterone-induced cessation of ship concerns in LGB women and transgender menstruation should be evaluated by a healthcare men. In general, survivors of gynecologic cancer provider. Patients experiencing any abnormal face an overall reduced health status, including bleeding (e.g. after menopause, during perimeno- concerns related to physical, sexual, psychoso- pause, after testosterone-induced cessation of cial, and structural health [93 – 97 ]. While these menstruation, heavy/prolonged bleeding, irregu- symptoms typically improve over time, improve- lar bleeding cycles, etc.) should be encouraged to ments may not be seen until 5–10 years after contact their healthcare provider immediately. treatment. Further, the severity of these symptoms varies with type of treatment, with surgical and radiotherapeutic interventions each causing Helpful Hint dysfunction. For example, radiotherapeutic inter- Change to any abnormal bleeding should be ventions are associated with long-term bowel, evaluated at any time. Abnormal bleeding bladder, and sexual dysfunction [93 ] whereas includes bleeding occurring more often than more radical surgical interventions are associated every 21 days, bleeding lasting longer than 8 with decreased sexual activity, function, and days, very heavy bleeding, bleeding occur- satisfaction [98 ]. Early age of diagnosis, lower ring between menses in premenopausal socioeconomic status, and disease comorbidity women, and any bleeding after menopause. also decrease quality of life. A completed review of survivorship is beyond the scope of this 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 323

Table 17.4 Permission, limited information, specifi c suggestions, and intensive therapy (PLISSIT) model conversations about sexuality and intimacy Step Purpose Example questions Permission Invite patient to discuss sexual health • “I would like to check in to see how you are doing with respect to sexuality and intimacy. Is that okay with you?” Limited Normalize sexual health and any concerns • “After cancer treatment, many people are information concerned about sex and intimacy. How has your experience been?” Specifi c Provide easy, action-oriented methods to • “Vaginal dryness can often be helped with suggestions incorporate lubricant before and during sex” Intensive Offer referral or resources if the patient is not • “It sounds like it might help to talk with an expert therapy comfortable or more expert advise is required in sexual health. May I provide a referral?” chapter; however survivorship concerns that may these concerns [97 ]. One such model for address- differ between LGBT and heterosexual cisgender ing these concerns is the PLISSIT model, where populations will be discussed. providers use the framework of “Permission, Long-term physical symptoms that can affect Limited Information, Specifi c Suggestions, and quality of life following gynecologic cancer Intensive Therapy” for discussion (see Table 17.4 ). include bladder and bowel dysfunction, fatigue, Based on the concern, endocrine therapies (e.g. neuropathy, early menopause, ovarian failure and vaginal estrogen for vaginal dryness, transdermal infertility. Ovarian failure and infertility, particu- testosterone for libido), lubricants, or other treat- larly in younger individuals and those who have ment options can be discussed. not yet had children, can cause distress, depres- There is a range of psychosocial concerns that sion, and decreased sexual functioning [99 ]. LGB can occur after gynecologic cancer, including cisgender women often have children at a later depressive or anxiety disorders, worry or fear of age than heterosexual cisgender women, and recurrence, body image concerns, coping with the therefore may be less likely to have children or invasiveness of treatment, and diffi culty returning have had fewer children at the time of infertility. to a sense of normalcy. Body image concerns may For transmen, the loss of fertility may be a con- be more common in people who have previously cern, however what may be most challenging is experienced gender dysphoria or other body- the potential for long-term dysfunction to be a related concerns. Similarly, the invasiveness of constant reminder of a part of their body that they procedures can themselves be traumatic and re- may cause distress/dysphoria. traumatizing in individuals with a history of Sexual health is an important part of many peo- trauma. As discussed in previous sections, these ple’s lives, including individuals who are LGBT, experiences are more common among transgen- and should continue to be so after surviving cancer der individuals and LGB cisgender women. These [ 96]. However, sexual function can be impaired experiences are compounded by fi nancial diffi cul- across all stages of the sexual response cycle after ties, access to caregivers, and employment con- cancer treatment. Decreased lubrication, inability cerns. Older LGB women, and likely transgender to achieve orgasm, and pain or discomfort during individuals, are more likely to experience poverty receptive sexual activity, are common among when compared with heterosexual cisgender indi- gynecologic cancer survivors. Radiotherapy and viduals and even cisgender gay men [100 ]. surgical interventions (e.g. hysterectomy, sal- Further, LGBT individuals as a whole are less pingo-ophorectomy, etc.) can produce dimen- likely to have a partner, children, or an identifi able sional changes of the vaginal vault, and can close relative to call for help [101 ] and are thus result in complications such as fi brosis or fi stula less likely to have a stable caregiver. development that impact certain sexual prac- Social support and partner support are incred- tices. It is recommended that providers working ibly important components of survivorship for with survivors of gynecologic cancers discuss individuals recovering from gynecologic cancer 324 K.L. Eckstrand et al.

[102 ]. As discussed previously, older LGBT indi- have been made, HPV vaccination is recom- viduals are less likely to have a partner, but may mended. There are no screening recommenda- have good social support networks. Social and tions regarding the use of anal Pap smears; partner support are particularly benefi cial if the however, for patients at higher risk, providers can support network is stable across diagnosis, treat- discuss risk and the available screening options ment, and recovery, if support is focused on emo- with patients. If screening is desired or strongly tional support rather than fi nancial or practical recommended based on risk, HPV-associated support, and if patients do not feel as though they anal dysplasia or intraepithelial neoplasia (AIN) are a burden to those around them [93 ]. Certain can be detected using an anal Pap test. Anal pap patients also fi nd support in their chosen faith or tests are easily performed: in the ability to engage in activities that provide a sense of accomplishment [95 ]. Survivorship 1. Request that the patient refrain from anal recep- planning that includes these factors is important, tive intercourse for 24 hours prior to the test particularly among LGBT patients who may not 2. Place the patient in the lateral recumbent posi- have the same support networks as heterosexual tion or dorsal lithotomy position if also per- or cisgender individuals. forming a cervical Pap test 3. Moisten a Dacron swab with sterilized or non- Anal Cancer sterilized water Risk for anal cancer is similar to other HPV- 4. Spread the area around the anus the with the associated cancers, where unprotected receptive index and thumb of the non-dominant hand anal intercourse, multiple sex partners, smoking, 5. Insert the Dacron swab into the anus until it hits and immunosuppression increase the likelihood the wall of the rectum, approximately 5-6 cm of anal cancer. In addition, a history of chronic 6. Rotate the swab several times, placing fi rm local infl ammation and pelvic radiation increase lateral pressure on the swab handle risk. It is important to remember that lesbian and 7. Slowly withdraw the swab from the anal bisexual cisgender women are at risk for anal canal, being sure to sample the squamocolum- cancer if they have engaged in anal intercourse. nar (transition) area Twenty-six percent of young WSW have engaged 8. Place the swab in methanol-based preservative- in anal intercourse [103 ] and 17.2 % of lesbian transport solution and agitate for 60 s cisgender women have engaged in at least one 9. Preserve the specimen until time of lifetime act of anal intercourse [60 ]; bisexual cis- interpretation gender women are 2.5 times more likely than heterosexual or lesbian women to have engaged in The interpretation of anal cytology is less sen- anal intercourse [ 61 ]. HPV anogenital co- sitive and specifi c than that of cervical cytology infection is common, even in the absence of anal [ 106 ]; however it is recommended that all patients intercourse, where 42.4 % of women who present with any form of anal dysplasia, including atypi- with high-grade cervical intraepithelial lesion cal squamous cells of undetermined signifi cance, (CIN2+) also have concurrent HPV infection undergo high resolution anoscopy [107 ]. [104 ]. Even among cisgender women without a Therefore, it is important for providers who per- known gynecologic neoplastic process, 8 % of form anal Pap tests have the ability to perform or women have concurrent cervical and anal HPV refer to providers trained in HRA should the test infections [105 ]. Transgender individuals engag- reveal atypical results. ing in receptive anal intercourse are also at risk for anal cancer. Approximately 80 % of transgender women and 25 % of transgender men have Sexually Transmitted Infections engaged in unprotected anal intercourse [62 , 63 ]. While the incidence/prevalence of anal cancer The details of STI transmission, epidemiology, in LGB cisgender women and transgender indi- and treatment are discussed in detail in Chap. 14; viduals is unknown, and no consensus statements however, they will be discussed briefl y here as 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 325 they relate to OB/GYN care. When discussing prevalence of BV among WPW even among STIs, it is important to distinguish sexual orienta- women who participated in safe sex practices, tion and gender identity from sexual practices. suggesting the multifactorial nature of BV is a Sexual orientation and gender identity develop larger driver of infection [114 ]. Treatment is rec- across the lifespan, and sexual practices vary ommended in women who are experiencing widely even among women who partner exclu- symptomatic infection and up to date treatment sively with women [ 108 ], thus assumptions about recommendations can be found on through the sexual practices based on identity are inadequate CDC [ 115 ]. Additional management should to assess risk. Further, social determinants of focus primarily on early identifi cation of symp- health also infl uence STI risk and acquisition in tomatic infection through patient education, LGBT communities. A thorough and sensitive smoking cessation, and discussions with sexual sexual history, as discussed in Chap. 6 , will help partner(s) about seeking testing and practices guide and support risk assessment, diagnosis, reducing risk for BV. treatment, and prevention. Among women who partner with women, 75–80 % have had sex with cisgender men [60 , Helpful Hint 78 , 108]. Of that 80 %, approximately 40 % fi rst Risk for STIs and subsequent counseling is had sex with cisgender men before the age of based on sexual behavior, however this 16, and 38 % have had more than 6 male sexual information should be obtained in a man- partners. Further, among WPW, 57 % have had ner respectful of sexual orientation and more than 6 female sexual partners [ 108 ]. This gender identity suggests that young WPW are at high risk for STIs due to early sexual debut and number of sexual partners [109 ]. Specifi cally, young women who identify as bisexual or are unsure of LGB cisgender women are also at risk for their sexual orientation have 40 % higher odds other STIs. Herpes virus ( HSV ) infections differ for STIs [46 ]. This risk is partially explained by by the gender of sexual partners. Among women high rates of sexual coercion , emotional dis- who identify as heterosexual, the rate of HSV-2 tress , and substance use [110 ]. Interventions to infection is 23.8 % compared with 3 % of women promote safe sex practices, self-acceptance and who have no history of male sexual partners acceptance by friends and family, as well as [116 ]. When contrasting by self-identifi ed sexual reduction in substance abuse can be helpful in orientation, HSV-2 seropositivity occurred in reducing STI risk and promoting healthy devel- 8.2 % of women who identify as gay or lesbian, opment in young women questioning their sexual 35.9 % in women who identify as bisexual, and orientation. 45.6 % of women who identify as heterosexual Across all age ranges, LGB cisgender women but who have had a lifetime sexual encounter have higher rates of bacterial vaginosis [108 , with another woman [116 ]. In contrast, HSV-1 111 ], which is not universally considered to be an seropositivity is common across sexual orienta- STI. Sexual practices transmitting vaginal fl uid tions, often due to oral transmission of the virus (ex. a sexual partner with BV, vaginal lubricant in early childhood. Among WPW, HSV-2 sero- use, sharing vaginal sex toys) and receptive oral- positivity is associated with increasing number of vulvovaginal sex increase transmission of BV male partners, whereas HSV-1 is associated with [111 , 112]. However, transmission is multifacto- increasing number of female sexual partners rial and also depends on an individual’s [117 ]. HSV seropositivity does not indicate the BV-associated bacteria profi le (ex. G. vaginalis, location of infection, however, as both HSV-1 A. vaginae, Leptotrichia spp., Megasphaera-1 , and HSV-2 can infect the oral and genital regions. Lactobacillus crispatus ) and current smoking Clinically, it can be important to identify the viral status [ 112 , 113]. Despite this, one targeted inter- subtype of genital HSV as it affects patient coun- vention on safe sex practices did not change the seling and management. HSV-1 infection is likely 326 K.L. Eckstrand et al. to be more severe during the fi rst episode but Barrier Protection, Contraception, have fewer recurrences, and is less likely to be and Unwanted Pregnancy shed asymptomatically. In contrast, HSV-2 is more likely to recur and be shed asymptomati- Barrier protection methods (e.g. “male” and cally—which is believed to be the primary mode “female” condoms, dental dams, latex gloves, of transmission [ 118 ]. First-time clinical epi- etc.) can reduce STI transmission. Among an sodes of genital herpes can be treated with antivi- international sample of women who partner with ral agents, although patients should be informed women (n = 1557 participants), 87.3 % reported that even though the infection may not recur, it never using barrier protection when receiving could still be spread to partners through asymp- oral sex, 63.4 % when receiving sex toy stimula- tomatic shedding. For patients who have recur- tion, and 88.1 % when receiving digital sex [122 ]. rent infections, antiviral agents can be taken daily In a larger sample (n = 3116 participants), approx- to prevent symptom recurrence and lower risk of imately 60 % of women who partner with women transmission to partners. However, all patients reported using shared sex toys with a partner and should be aware of their capacity to spread the 25–30 % did not clean the sex toys before shar- virus through oral or genital contact, even in the ing [ 123 ]. These studies suggest that mispercep- absence of active lesions. tion of risk and lack of education can play a role Rates and infection patterns of gonorrhea and in non-use of barrier protection; however, addi- chlamydia in LGB cisgender women are largely tional obstacles include the cost of dental dams unknown. While one large study suggests that and reduction in sexual pleasure often associated lesbian women have slightly higher rates of chla- with barrier methods. mydia than bisexual or heterosexual women The diversity of sexual behaviors and lack of [119 ], this fi nding has not been consistent across use of barrier protection within the LGBT com- other studies [108 ]. Samples in these studies munity, combined with the elevated risk for sex- were geographically limited, suggesting that ual coercion, assault, and commercial sex work, rates of disease may be due to geographic loca- make unwanted pregnancy and contraception tion, socioeconomic status, and sexual networks. highly relevant topics for OB/GYN practitioners. However, in patients who acquire an STI, there is Moreover, evidence suggests that these topics are a greater likelihood of HIV acquisition. All increasingly important among younger LGBT patients who present with symptoms consistent individuals. Whereas cisgender lesbian women with an STI should also be offered testing for over 40 are less likely to have been pregnant, other STIs, including HIV. given birth, had a miscarriage, and/or had an abor- Less is known about STI risk in individuals tion [ 28] compared with their heterosexual coun- who identify as transgender, as most of the terparts, LGB cisgender adolescents are more research has focused on the increased incidence likely to have sex under the infl uence of alcohol, of HIV/AIDS among transgender women (see have multiple sexual partners, have unprotected Chap. 14). Engagement in commercial sex work, sex, and experience unwanted pregnancy [110 ]. male preference in sexual partners, unemploy- This is particularly true among bisexual cisgender ment, disclosure of gender identity, abuse based women, who have the earliest sexual debut, high- on gender identity, and depressive symptoms are est numbers of male partners, greatest use of all associated with higher risk of HIV, and there- emergency contraception, and highest frequency fore likely other STIs [ 120 , 121 ]. Because of the of pregnancy termination [109 ]. However, behav- similarity in natal pelvic anatomy, risk and man- iorally bisexual LGB adolescent females are also agement for STIs in transgender men is similar to more likely to use hormonal contraception com- that of cisgender women and, as discussed previ- pared with lesbian and gay female teens [59 ]. ously, the sensitivity of the physical exam should To date, there have been no studies on be of utmost importance. unwanted pregnancy among transgender men. 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 327

However, the high rates of sexual assault among While the pathogenesis of PCOS is beyond transgender individuals [124 ] suggest that there the scope of this text, both androgen and estrogen is a signifi cant likelihood for unwanted preg- excess are characteristic of the disease process. nancy. Patient misperception about the contra- As a result, some studies have hypothesized that ceptive effects of testosterone may also result in the incidence of PCOS might be increased among unwanted or unplanned pregnancy. Irrespective transgender men taking testosterone; this has of the outcome of the pregnancy, navigating been supported by several [ 58 , 89 , 127] but not pregnancy as a pregnant male can be a challeng- all studies [128 ]. ing experience both psychologically and socially. Irrespective of incidence, it is important for In this setting, clinicians can provide an affi rming providers to understand how sexual orientation environment, particularly if patients can be and gender identity may impact PCOS treat- engaged in care throughout the pregnancy. ment. While diet and reduction of insulin resis- Among all LGBT individuals, sensitive sexual tance are mainstays of treatment, many history taking (see Chap. 6 ) can be used to discuss individuals also take oral contraceptive pills pregnancy risk and desire to prevent unwanted (OCPs) to regulate their periods. For individu- pregnancy. If patients are interested in pregnancy als whose sexual practices are unlikely to result prevention, contraceptive methods and their in pregnancy or who may not be sexually active effectiveness should be discussed. For transgen- with men or who do not wish to have a period der men who do not want to carry a pregnancy, because of male gender identity, the idea of hysterectomies are a viable option to discuss OCPs may be stigmatizing or personally chal- [ 125], but barrier methods should still be used for lenging. Providers should engage patients in a STI protection. thorough discussion of the patient’s expecta- Contraception options and their effectiveness tions of treatment and how to include consider- should be discussed with all eligible patients. ation of their identity to optimize treatment at For transmen, discussion can include the fact that an individual level. contraception can affi rm gender identity.

Trauma Polycystic Ovarian Syndrome While interpersonal violence is discussed in Polycystic ovarian syndrome is a common endo- detail in Chap. 10 , OB/GYN providers should be crine disorder that can affect individuals who familiar with the high rates of emotional, physi- have ovaries. While there is a genetic component, cal, and sexual trauma faced by LGB cisgender obesity is the most highly recognized lifestyle women and transgender individuals. Beginning factor associated with the development and at a young age, women under the age of 18 who symptom severity of PCOS [ 126]. The higher identify as bisexual or have sexual partners of rates of obesity in LGB cisgender women have multiple genders are more likely to experience led some to believe that the incidence of PCOS is parental physical abuse, physical dating violence, higher in LGB cisgender women. To date, only and emotional victimization [129 ]. LGB cisgen- one study (n = 618; 254 lesbian women, 364 het- der female youth are also more likely to have erosexual women) has examined this hypothesis, been forced to have sex by a male partner [109 , fi nding higher rates of PCOS in lesbian-identifi ed 129 ]. Beyond trauma in family and relationship women [57 ]. Interestingly, lesbian women with spaces, there is a strong likelihood that younger PCOS had higher androgen levels compared with LGBT individuals having diffi culty at school, heterosexual women with PCOS, which also may with 81.9 % of LGBT youth reporting verbal be due to differences in obesity and insulin resis- harassment at school [130 ]. Among adults, 46 % tance observed among lesbian women. of bisexual women report having been raped in 328 K.L. Eckstrand et al. their lifetime and greater than 50% of transgender discomfort with the topic, and clinical time individuals report being assaulted or raped by an constraints [134 ]; however, patients do want to intimate partner [ 124 , 131]. Even when seeking talk to their providers about sex, but often don’t support, transgender men are more likely than because they fear a judgmental reaction [135 ], cisgender people to experience violence in and prefer their provider to initiate the conver- domestic violence shelters [132 ]. sation [136 ]. Patient support begins with the For individuals who have a history of trauma, understanding that sex and sexuality are impor- the health care environment can be triggering. tant aspects of personhood for many individu- Events such as sitting in a waiting room with als, and sexual health is an integral aspect of strangers, to disclosing sexual orientation and/or holistic care. gender identity, to exposing and having areas of The sexual response cycle, which comprises the body examined can cause a heightened state of the physical and emotional changes that occur anxiety or even the re-experiencing of trauma. The during sexual stimulation and arousal, is a key manifestations of anxiety may be misinterpreted aspect of the conversation when discussing sex- by providers as unfriendly, defensive, withdrawn, ual health with patients. The sexual response or threatening. Reacting to these perceived emo- cycle consists of four phases: tions can exacerbate the experience of trauma in a way that can be detrimental to the patient-provider • Excitement (Phase 1) results from arousing relationship and subsequent provision of health- mental, emotional, or physical stimuli that in care. Approaching patients in a non-threatening turn result in an increase in heart rate, respira- way, using a calm but compassionate demeanor, tory rate, and blood pressure; an accompany- and understanding how to de- escalate challenging ing increase in blood fl ow to erectile tissue situations are crucial to engaging patients with a (clitoris, penis); lubrication of the vagina; and trauma history in their own healthcare. Providers upward movement of the testicles toward the can also support resilience, the ability to adapt to perineum adversity and recover from trauma, in a variety of • Plateau (Phase 2) refers to an intensifi cation of ways above and beyond creating a welcoming the sensations that build during Phase 1, and is environment. Providers can empower patients to often accompanied by an increasing sense of take ownership of their own healthcare, creating pleasure during ongoing sexual stimulation; an internal locus of control that supports patients contraction of the pubococcygeus muscle; to feel in control of their health [33 ]. Finally, nor- contraction of the urethral sphincter of the malizing identities and experiences to promote penis; secretion of pre-ejaculatory fl uid from patient self-acceptance and a positive LGBT the penis; increased lubrication of the vagina; identity can empower patients in their own lives and swelling of the outer vagina outside of the healthcare system [34 ]. • Orgasm (Phase 3) represents the culmination of the plateau phase, with the occurrence of peak sexual pleasure accompanied by rapid Sexual Health and Satisfaction muscle contractions of muscles in the pelvis, including the vagina, uterus, and anus; ejacu- While previous sections of this chapter have lation from the penis discussed risky sexual encounters and disease • Resolution (Phase 4) occurs after orgasm and prevention, management, and treatment, a full is the return of the body to it’s pre-excitation discussion of sexual health includes positive state, including the detumescence of the penis sexuality and sexual relationships. Providers may not always feel comfortable discussing The stimuli promoting this response cycle, the concerns about sexuality, often citing lack of experience during each phase, and the transition training [133 ], fear of being intrusive, concern between phases vary widely across individuals irre- about how to respond to divulged information, spective of sexual orientation and gender identity. 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 329

This latter point is important for patients, in that may be the only providers in certain areas of the sexual behaviors don’t defi ne one’s sexual orienta- country. The American Academy of Child and tion and sexual orientation doesn’t defi ne what Adolescent Psychiatry, American Academy of sexual acts are pleasurable. For example, some Family Physicians, American Academy of individuals may enjoy penetrative sexual practices Pediatrics, American Psychiatric Association, whereas others may primarily prefer other forms of American Medical Association, and American stimulation (e.g. clitoral stimulation). Some indi- Society for Reproductive Medicine have all viduals choose to use sexual aids (vibrators, dildos, affi rmed policies in support of LGBT families. prostate stimulators, etc.) or engage in certain sex- The present section discusses the medical aspects ual practices (BDSM, kink, etc.). From a clinical of LGBT family building as it relates to OB/ standpoint, it is important to not only educate GYN care, whereas the medico-legal concerns of patients in how to minimize risk in these practices, LGBT family building are discussed in Chap. 9 . but also to be supportive of consensual sexual prac- It is important for providers to support LGBT tices that patients fi nd enjoyable. individuals seeking medical support during family Using validated sexual health scales can be building not only in accessing reproductive ser- helpful in understanding and determining sexual vices but also in validating family composition. health concerns. For example, the Female Sexual This validation is important throughout preg- Function Index [137 ] evaluates certain aspects of nancy and during birth, as many LGBT individuals the sexual response cycle (desire, arousal, lubrica- may fear engaging in the birth process or intimacy tion, orgasm pain, satisfaction) whereas the that heterosexual couples can enjoy without dis- Female Sexual Distress Scale [138 ] evaluates crimination [142 ]. This is particularly true for patient distress from sexual complaints. Other transgender men, where there is generally a lack of scales can be used to look at relationship cohesion resources for transgender men desiring and/or car- (Dyadic Adjustment Scale [139 ]) and intimacy rying a pregnancy. The experience of pregnancy as (Personal Assessment of Intimacy in Relationships a male can be incredibly challenging, as there are [140 ]). While the names of these questionnaires diffi cult gender stereotypes to overcome both inter- presume female gender identity and a monoga- nally and externally [143 , 144 ]. mous, two-partner relationship structure, they can apply to anyone with natal female pelvic structures and interpersonal relationships. As previ- Foster Parenting/Adoption ously introduced, the PLISSIT scale (see Table 17.4) is a simple way of initiating a patient-cen- Briefl y, the process of foster parenting and adop- tered dialogue about sexuality. tion is state and jurisdiction dependent, and may restrict adoption based on marital status and sexual orientation. Currently, all states allow a single Fertility and Reproduction LGBT individual to petition to adopt or foster a child, however not all states allow joint adoption Family building is an incredibly important part of by same sex couples. Sometimes adoption or fos- the lives of many individuals. External support ter agencies require letters of recommendation, for family building is often required, irrespective which can be an easy way for providers to sup- of sexual orientation and gender identity. Some port LGBT families. individuals may object to LGBT family building, including providers. One study, published in 2010, demonstrated that 14 % of OB/GYN pro- Alternative Insemination viders would discourage assisted reproductive technologies in LGB women partnered with Alternative insemination (AI) can be used to women. While this is more common among male support a pregnancy in any person with the natal and religiously-affi liated providers [141 ], these anatomy to carry a pregnancy, including cisgender 330 K.L. Eckstrand et al. women and transgender men. Individuals electing S u r r o g a c y to receive alternative insemination will decide whether to receive sperm from a known or Gay or bisexual cisgender men may opt to become unknown donor. Selection of donor sperm may be fathers using surrogacy, where an individual with done through licensed sperm bank, where individ- the capacity to carry a child carries the pregnancy uals may choose sperm based on donor criteria for the intended parents. This can include gesta- (eye color, racial/ethnic background, educational tional surrogacy, where the pregnancy can result attainment, etc.). Sperm can then be frozen and from the transfer of a fertilized embryo, often stored until the time of insemination. Donor with the sperm of one of the intended fathers, insemination is typically performed via one of sev- created through in vitro fertilization (IVF) to the eral techniques beyond the scope of this chapter, intended surrogates. Traditional surrogacy, but typically during the natural menstrual cycle where the surrogate is inseminated artifi cially or hours before the ovum is released. However some naturally, can also be used. Surrogacy is typi- individuals may opt to enhance ovulation and like- cally a more costly endeavor, and thus can be lihood of pregnancy success with the selective unattainable for many same-sex male couples estrogen receptor modulator, clomiphene. [ 148, 149 ]. Transgender women can also be sperm donors if gametes are stored prior to the initiation of cross gender hormone therapy [145 ]. Transgender Conclusion men can carry pregnancies, even after having received cross-gender hormone therapy [143 ]. OB/GYN clinicians have a host of opportunities Unlike transgender women, transgender men can to enhance care and promote the health of indi- initiate hormone therapy and then cease hor- viduals of diverse sexual orientations, gender mones in order to become pregnant, and oocytes identities and gender expressions. As discussed do not have to be stored in advance. Testosterone above, LGBT individuals are at increased risk for treatments are usually delayed until after delivery numerous OB/GYN related concerns and dispari- in order to carry a healthy pregnancy to term. ties in health outcomes, which should prompt The success of AI depends on the type of providers to consider how to modify their own insemination procedure, age of patient, presence practice to support the health of patients identify- and degree of endometriosis, egg quality, and/or ing as LGBT. This care begins with learning how damage to the fallopian tubes. Importantly, while to empower patients to be in control of their own some have suggested that risk factors such as healthcare throughout the healthcare experience, obesity and tobacco use may challenge the suc- to reduce the potential for re-traumatization, and cess of alternative insemination, studies have to create a safe environment that supports patients shown that there is no difference in pregnancy to return for future evidence-based care. OB/ rate, live birth rate, or miscarriages between LGB GYN providers also have a unique opportunity to cisgender women and heterosexual cisgender support LGBT individuals in building families. women [146 ]. As with all individuals who are In addition, the breadth of health concerns relying on alternative insemination to conceive, encountered in OB/GYN practice allows provid- the loss of a pregnancy can result in a heightened ers to serve as a bridge to help patients in need sense of grief for LGBT families due to the connect to other key health care specialties, such increased time/resources necessary for concep- as mental health (Chap. 13 ) and primary care and tion and the degree of planning required [147 ]. prevention (Chap. 8 ). Comprehensive OB/GYN Furthermore, AI can be quite costly (between care that is sensitive to sexual orientation, gender $300 and $700 per cycle, with numerous cycles identity, and gender expression can therefore be usually required) and individuals may not have pivotal in promoting the overall health of LGBT the resources to attempt AI multiple times. individuals. 17 Obstetric and Gynecologic Care for Individuals Who Are LGBT 331

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146. Nordqvist S, Sydsjö G, Lampic C, Åkerud H, Elenis 148. Norton W, Hudson N, Culley L. Gay men seeking E, Svanberg AS. Sexual orientation of women does surrogacy to achieve parenthood. Reprod Biomed not affect outcome of fertility treatment with donated Online. 2013;27(3):271–9. sperm. Hum Reprod. 2014:det445. 149. Riggs DW, Due C. Gay fathers’ reproductive jour- 147. Peel E. Pregnancy loss in lesbian and bisexual neys and parenting experiences: a review of research. women: an online survey of experiences. Hum J Fam Plann Reprod Health Care. 2014;40(4): Reprod. 2009:dep441. 289–93. P a r t V Transgender Health Interdisciplinary Care for Transgender Patients 1 8

Christopher A. McIntosh

Nevertheless, there is good reason to consider Learning Objectives speciﬁ cally why interdisciplinary care for transgender people is important. For this chapter, the • Describe the importance of communication term “interdisciplinary” as opposed to “multidis- between providers in transgender care (KP1, ciplinary” will be used because the former implies ICS1, ICS2, ICS3, Pr1, Pr2) communication between the providers [4 ]. Such • Discuss strategies to respectfully engage with communication is important because the inter- transgender patients and provide an environ- ventions sought by some transgender people to ment for optimal care (ICS1, ICS4, PR1, Pr2) relieve gender dysphoria by necessity cross disci- • Identify at least three strengths each interdis- plines. Subsequent chapters in this section of the ciplinary team role brings to comprehensive book will address in detail hormone and surgery holistic health care for transgender patients treatments for gender dysphoria. Often the physi- (IPC1, Pr3) cians providing such treatments may have only very basic, if any, training in the behavioral sciences. The latter is necessary in order to assess for Introduction gender dysphoria and to look for mental health issues that ought to be addressed prior to or con- Interdisciplinary care for transgender patients is currently with the gender concerns [1 ]. This chap- advocated by every major health body that has ter will look ﬁ rst at some basic principles of care published comprehensive care guidelines [1 – 3 ]. for the transgender patient, then explore the roles Some reasons for this are obvious and some are of the individual disciplines in their care. not. In modern health care we value interdisciplinary care in general, and have evidence for it’s effectiveness in a number of areas (rehabilitation: The Basics: What All Providers Need [ 4]; primary care: [5 ]; geriatrics: [6 ]; mental health: to Know [7 – 9]) and so in thinking equitably, we would want such care for transgender people as well. Language and Terminology

A ﬁ rst step in the engagement of transgender C. A. McIntosh , M.Sc., M.D., F.R.C.P.C. (*) people in care is to understand the importance of Centre for Addiction and Mental Health, University of Toronto , Toronto , ON , Canada language. Gender is built into the grammar of the e-mail: [email protected] English language, and an individual crossing or

© Springer International Publishing Switzerland 2016 339 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_18 340 C.A. McIntosh blurring societal gender lines will run into pitfalls Sometimes transgender individuals who suffer related to language, as will the health care provider from gender dysphoria (see below) will try to par- working to build a therapeutic relationship [10 ]. tially alleviate this by using alternative language How an individual feels about their name is for their sexed body parts, (e.g. FTM individuals important to determine. Many transgender indi- who refer to their “chest” rather then breasts). If viduals dislike their birth name because most fi rst this is noticed in early discussions, it can improve names evoke an associated gender (e.g., Robert, the relationship for the provider to follow their Tiffany) though some do not (Robin, Leslie). lead. Primary care providers in particular should Growing up, they may have preferred a shortened pay attention to this and ask about preferred lan- version of their birth name, or a nickname. Ask a guage, as it may facilitate a patient’s comfort with patient about their preferred name of address and breast and genital examination. (This is frequently have a clear place for indicating this preferred deferred by many transgender patients [11 ].) This name on the medical record. guideline obviously is meant for patient communication; standards of medical documentation will require conventional terminology. Helpful Hint Administrative staff should be given clear instructions to use the preferred name. If a Helpful Hint person does legally change their name, Preferred terms used to refer to transgender make sure you promptly update your docu- people do evolve over time. For example, mentation to refl ect this. the “-ed” suffi x on the term “transgendered” is now by convention dropped. For this chapter the terms “trans woman” will Pronouns are another area of attention. At describe a person wishing to transition some point in their transition process, a transgen- from male to female (MTF), and “trans der individual will usually ask to be referred to by man” will describe a person wishing to the pronouns, titles and gendered nouns associ- transition from female to male (FTM). ated with the preferred gender role (he, she, Ms, Mr, man, woman, daughter, son). This is a signifi cant and important step for the individual, and Distress Associated for individuals seeking certain gender change with the Transgender Experience surgical interventions, is a required part of eligibility requirements for their treatment (see Broadly speaking the unique distress that many below). As such it is important that these requests transgender people have relates to both body be acknowledged and respected. It is understood experience and environmental experience. These that doing so is not meant to be a denial on the two kinds of experience are distinct, but they part of the health care provider of medically sig- interact (Fig. 18.1 ). One important kind of distress nifi cant information about the patient’s biological associated with body experience is called gender sex. Nevertheless a respectful therapeutic rela- dysphoria . This is the distress that generally moti- tionship that acknowledges these language issues vates transgender people to seek out hormone and is key to earning the patient’s trust. At times, surgery interventions to more closely align their individuals who identify with an alternative gen- sense of their psychological gender with their der may ask to be referred to by a gender neutral experience of their body. Dysphoria can occur for pronoun (e.g. the singular “they”) or a pronoun of the typical gender role socioculturally associated their own invention. Trying one’s best to accom- with one’s sex, for one’s genitals , or for one’s sec- modate these requests can go a long way in ondary sex characteristics (body hair, body shape, developing and maintaining the therapeutic pitch of voice), and for individuals seeking hor- relationship. mones and surgery, typically all three. 18 Interdisciplinary Care for Transgender Patients 341

Fig. 18.1 Two types of distress associated with the transgender experience

interest in applying the model as well to trans- Helpful Hint gender people. Meyer and other researchers have Gender Dysphoria as a diagnosis is identifi ed a number of mechanisms of minority described by the fi fth edition of the stress experience including prejudice events (out- Diagnostic and Statistical Manual (DSM-5 right discrimination, abuse and violence) [ 14 ], [12 ]; see American Psychiatric Association stigma [ 15 , 16 ], concealment of one’s minority 2013 for criteria). It should be noted that status, and internalized homophobia and trans- the DSM-5 explicitly states that having a phobia [ 17 , 18 ]; (see Fig. 18.1 ). transgender identity itself is not a mental Minority stress theory postulates that the higher disorder, it is the psychological distress of rates of certain mental health disorders in the gender dysphoria that is considered a mat- LGBT population [19 ]) compared the general ter for clinical attention. population are not a result of any innate psychopathology associated with being lesbian, gay, bisexual or transgender (as wrongly argued in past One important kind of environmental experi- debates, see Drescher [20 ] for a review) but due to ence is minority stress . Transgender people expe- the psychological effects of discrimination. rience chronic minority stress as they try to make Both minority stress and gender dysphoria can their way in a world that enforces rigid gender adversely affect health and wellness in transgen- roles and that often views them with hostility and der people. Interventions such as socially transi- scorn. Meyer [ 13 ] has conceptualized a minority tioning, or treatment with hormones or surgery to stress model for lesbian, gay and bisexual masculinize or feminize the body alleviate gen- individuals, and there has been considerable der dysphoria in most cases. Minority stress, as 342 C.A. McIntosh well as other environmental stressors such as motivation to groom oneself is a common symp- issues with relationships, fi nancial hardships, and tom among their depressed patients, and that general life satisfaction may improve somewhat there is a responsibility to treat patients equita- as the gender dysphoria improves, but often more bly. As Penny recovers, Maria ensures safe and assistance is needed in these areas, and sometimes appropriate grooming materials are available patients may be disappointed that gender inter- and provides Penny with privacy. ventions did not ameliorate these other stressors, and may have made some worse. Achieving the best possible outcome from The Primary Care Physician or Nurse transitioning is a primary goal of interdisciplin- Practitioner ary care for the transgender patient, and one where mental health professionals in particular The primary care physician (PCP) or nurse prac- can be very helpful (see below). titioner (NP) will often be the health care provider charged with coordinating the care of the transgender patient by referring to appropriate Members of the Interdisciplinary providers. As such they are the control center of Team the interdisciplinary team and other professionals involved in the care of the transgender individual In this section, a description of the clinical role of should maintain open lines of communication the team member is followed by an illustrative with them. An important role of the PCP or NP is clinical vignette. For brevity’s sake I have limited to maintain a holistic picture of the transgender the number of professionals though one could patient’s overall health, so that preventative easily include others. health considerations like cancer screening, smoking cessation, and metabolic issues are not lost in the patient’s drive to move forward with a The Nurse transition process. Jerome, a young trans man is following up Nursing professionals play a crucial role in pro- with his nurse practioner Charles about the prog- viding an optimal environment for culturally ress of his transition. He has been doing very well competent health care for the transgender patient. on weekly intramuscular injections of testoster- In many health care settings, nurses are the fi rst one, which have caused cessation of menses and and most frequent professional contact during an the development of facial hair and a vocal pitch episode of care. Nurses can set the tone for pro- in a tenor range, all of which are much appreci- fessional, respectful care standards on a clinical ated by Jerome. Charles indicates that he has team which can go a long way to improving a received a copy of the letter from Jennifer, the patient’s experience of the health care system clinical psychologist who recently assessed his [21 ]. Home care nurses and nurses at long-term readiness to proceed with chest surgery, and it is care facilities with training in culturally compe- very positive. The only issue to be addressed is tent care can ensure that the transgender individ- Jerome’s half pack per day smoking habit. Both ual has a positive experience in accessing these Charles and Jennifer have worked with Jerome’s services. preferred surgeon, Eleanor, and know that she Maria, an inpatient mental health nurse will want him to quit, to reduce risks related to assesses Penny, a trans woman admitted from the intubation during the surgery and healing of the emergency department with a several week his- incisions. Jerome agrees and mentions that he tory of profound depression. Later at the nursing and a new friend he met at a trans youth support station, a team member makes an unfl attering group have decided to quit together. Charles comment about Penny’s growth of facial hair. offers nicotine replacement therapy but Jerome Maria reminds the team member that lack of declines. 18 Interdisciplinary Care for Transgender Patients 343

The Internist , Endocrinologist or decreased libido and erections. Rebecca realizes Other Hormone Prescribing Physician that she may have to discuss the issue of sex further with her wife and discloses that she feels There are a number of good guidelines published intensely dysphoric during intercourse, but fears regarding the endocrine care of transgender her wife will leave if she cannot maintain their individuals, and Chapter __ in this volume is sexual intimacy adequately. Lesley sends Rebecca also devoted to this topic. One signifi cant chal- to get baseline bloodwork and books a follow-up lenge for the endocrinologist is to identify gen- to discuss things further, as well as providing a der dysphoria diagnostically and assess readiness referral to a family therapist. issues that ought to be addressed prior to or concurrently with treatment. The ability to do so with confi dence is aided by having ready access The Surgeon to a mental health practitioner. The importance of having confi dence in the diagnosis and readi- Surgeons who perform gender confi rming surgery ness is counter-balanced by the understanding may have been trained in a number of surgical dis- that substantive delays in care can be agonizing ciplines. Plastic surgeons typically perform breast for the patient experiencing severe gender dys- augmentation for trans women, mastectomy and phoria. There may also be harm reduction con- male chest reconstruction for trans men, and geni- siderations if, for example, a patient is obtaining tal operations for both trans men and trans women. hormones from another non-medical source. Gynecologists perform hysterectomy for trans Antiandrogens such as cyproterone and spirono- men. Urologists may provide orchiectomy for lactone (for trans women) or peptide gonadotro- trans women and be involved in urethral extension pin releasing hormone agonists (GnRH-A) such for genital surgeries for trans men. as leuprolide and buserelin (for both trans men [Chapter __ in this volume discusses surgical and trans women), which reduce the ongoing interventions in detail.] effects of endogenous sex hormones, can be Interdisciplinary communication is of consid- considered as a bridging treatment if there are erable importance for surgical care . Most sur- readiness and/or diagnostic issues that need to geons are not well trained in mental health, and it be clarifi ed. is recommended that they depend on mental Interdisciplinary communication is important health professionals for the diagnosis of gender on a number of issues related to hormones that dysphoria and assessment of eligibility and readi- may cross discipline lines, such as smoking ces- ness. Eligibility criteria for surgery depend on the sation and estrogen, and mental health side surgery being sought. Gonadal surgery (hysterec- effects of hormones (which, if they occur at all, tomy, orchiectomy) generally requires 1 year of are usually transient and mild, though may be prior treatment with exogenous hormones. Genital more signifi cant in individuals with certain pre- surgery requires a minimum of 1 year of full-time, existing mental health diagnoses, especially if continuous experience living in the new gender not stabilized). As well, liaising with the surgeon role. Surgical standards of the World Professional on the issue of presurgical hormones may be Association for Transgender Health (WPATH) important, depending on the type of surgery. stipulate that chest surgeries require one letter and Rebecca, a married trans woman in her late gonadal and genital surgeries two letters from thirties is seeing Lesley, an endocrinologist, for assessing behavioral health professionals [1 ]. the fi rst visit to discuss hormone therapy. Lesley Other important lines of interdisciplinary takes a careful history and fi nds out that Rebecca communication in surgical care are with the pri- and her wife of 15 years remain committed to mary care physician or internist in preparing the staying in their marriage and plan to remain sex- patient medically for surgery and with the ually active. In discussing the benefi ts, risks and endocrinologist regarding the issue of hormone side effects of hormones Lesley mentions treatment or discontinuation prior to surgery. 344 C.A. McIntosh

Ilan is a gynecologist who stops by to check on ied experience of gender dysphoria, but also the Joseph who is one day postoperative from a lapa- environmental experience of minority stress and roscopically assisted vaginal hysterectomy and its psychological consequences. bilateral salpingo-oopherectomy. He is recover- Hormone and surgery interventions address ing very well and is suitable to be discharged the gender dysphoria, but what about factors home later today. Ilan dictates a discharge sum- related to minority stress, not to mention other mary with copies sent to Joseph’s primary care psychosocial stressors? physician and endocrinologist. Assessment of readiness to proceed with transition is a key role of the mental health provider and helps to identify collaboratively with the The Mental Health Practitioner patient areas that ought to be addressed prior to or concurrently with transition. Patients often The mental health practitioner plays an important have good insight into these areas already, but and active role in interdisciplinary care of the sometimes do not. Insight may be hindered by a transgender patient. Mental health practitioners strong belief that transition will resolve these can come from a variety of training backgrounds, other issues, be they mental health issues, fi nan- such as psychology, psychiatry, and social work. cial issues, discrimination from employers or The role of the mental health practitioner can family members, or other important concerns. include clinical assessment for gender dysphoria An important counterweight to minority stress and/or mental health conditions that may also be is resilience or positive adaptation in the face of a source of clinical attention. Other roles can signifi cant adversity [ 13 , 24 ]. Development of include treatment of identifi ed co-occurring con- resilience may be a necessary treatment goal for ditions, family interventions to aid in discussing many patients. Resilience in transgender people is the issues with family, and supportive treatment a relatively new area of study, but those studies through the process of transitioning. published identify a few clinically noteworthy Many transgender people have a negative associations: Testa et al. [25 ] identifi ed that prior view of mental health practitioners, who they awareness of the existence of other transgender may perceive as being hostile or pathologizing of people as well as actual engagement with them, their experience. This can present a challenge in were independently associated with measures of developing a therapeutic relationship. It is impor- improved affect and psychological comfort, sug- tant to recognize that historically the relationship gesting transgender community connection may between the mental health fi elds and transgender be important in developing resilience. Other stud- people has been characterized by misunderstand- ies have identifi ed supportive family [26 , 27 ] and ing and that individuals may indeed have good personal spiritual growth [ 27 , 28] as resiliency fac- reason to be wary [22 ]. tors, suggesting a role for family therapy and sup- Issues that a mental health practitioner can portive chaplaincy on the interdisciplinary team. help the patient to explore with psychotherapy Robert is a psychiatrist assessing Karen, a include: self-esteem, past traumas and their trans woman referred by her family doctor due to effects on current functioning, anxiety about their a signifi cant history of depression. Robert takes a gender role presentation, relationship issues with careful history to identify the factors contributing partners, coming out to family and friends, and to the depression, which Karen believes is related other challenges [23 ]. only to the gender dysphoria she has for her geni- The holistic approach that mental health prac- talia. From the interview, Robert formulates an titioners employ in looking at the multifactorial understanding of Karen’s depression as multifac- sources of a patient’s distress make them essen- torial, where the gender dysphoria is only one tial members of the treatment team. As identifi ed contributor. Together they come up with a com- previously in Fig. 18.1, distress associated with prehensive treatment plan that addresses biologi- the transgender experience is not only the embod- cal, psychological, social and spiritual factors. 18 Interdisciplinary Care for Transgender Patients 345

The Social Worker (see Hamblin and Gross [30 ] for a review). While personal spiritual growth can promote resilience, Social workers may play the role of a mental and religious affi liation is associated with posi- health clinician on the interdisciplinary team (see tive psychological functioning in the general above) and are also invaluable for their attention to population, this is clearly contextual when it social factors that may be exacerbating a client’s comes to LGBT individuals. Doctrinaire teaching distress. Because of discrimination, transgender about the immorality of homosexuality (often people can be socially marginalized. Transgender confl ated with gender identity) in some conserva- people who are homeless or underhoused may tive religious communities can be a signifi cant face special challenges in accessing appropriate source of psychological distress. services, as shelters are frequently divided by gen- As such transgender individuals with religious der [29 ]. Transgender people in abusive situations faith may be experiencing signifi cant confl ict may be reluctant to access needed services such as about transition and what it means personally to police protection because of either perception or them, as well as to their family and faith commu- past experience that police offi cers will be dis- nity. Having a supportive chaplain on the inter- criminatory. Such marginalization may also lead disciplinary team can be a great boon to these transgender people to have a poor understanding patients. of what their legal rights are in cases of eviction or Mark, a family therapist working with Julia, a family confl icts such as child custody disputes. trans woman, and her wife Ruby, refers to chap- Options for welfare and disability pension support laincy because the couple is trying to reconcile may also be areas where clients need the assis- their conservative Christian upbringing with the tance of a social worker. client’s need to transition to relieve her gender Transgender people benefi t from connection dysphoria. Sara, the chaplain, works with Julia with other people in the trans community and a and Ruby to explore what their core spiritual val- social worker can be extremely helpful to a client by ues are, how important (or not) doctrine is to being up to date on the latest community resources their faith, and how they will address reaction and support groups both in-person and online. from the other members of their congregation. Marjorie is a social worker in a women’s shelter assessing Lucas, a young trans man who recently became homeless after his parents kicked The Speech-Language Pathologist him out of their house after he came out to them as trans. Lucas is devastated by their reaction Vocal changes can be a desired but involuntary and having diffi culty fi guring out what to do next. consequence for trans men taking testosterone or He initially went to a men’s shelter but left an aspiration for trans women hoping to feminize because it was “scary”. Marjorie welcomes their voices. In both cases the services of a speech Lucas and ensures other staff are aware of his language pathologist are valued. Voice may be preferred name and pronouns. She refers to a overlooked by health care providers but is often of social work colleague who does counseling with considerable importance to the patient. Improved trans youth, and works to help him access hous- satisfaction with voice can lead to signifi cant ing and vocational resources. gains in self-esteem, confi dence, and comfort in the preferred gender role. Screening questions about use of the voice in the patient’s occupation The Chaplain or hobbies can identify situations in which referral to a voice specialist is appropriate. Some advo- As hypothesized by Follins, Walker and Lewis cate a modifi ed approach to testosterone therapy [24 ], religious affi liation for transgender individ- in trans men who are professional singers. For uals can be “bittersweet”, with parallels to what such individuals a singing coach experienced in is known about religious faith in LGB individuals working with trans men or adolescent boys going 346 C.A. McIntosh through puberty may be very helpful. Trans quences so dietary interventions to prevent or women who use their voice occupationally (sig- manage these disorders may be advised. nifi cant telephone work or vocal interaction with Surgeons often have obesity limits for their clients or colleagues) can suffer from vocal strain patients in order to optimize the outcome of the if they are attempting in a haphazard way to femi- intervention and minimize risk associated with nize their voices. the surgery and the anaesthesia. These guidelines Caitlin, a trans woman who has been on estro- may be more strict for surgeons operating at pri- gen and spironolactone for 3 years, has been sat- vate plastic surgery centers compared to those isfi ed with many of the changes that hormones operating at hospitals. It can be a frustrating have wrought, but remains highly dissatisfi ed experience for a patient to meet other criteria, but with her masculine sounding voice. She is be limited by weight issues. Obese patients referred to Gina, a speech language pathologist, unable to lose suffi cient weight with diet modifi - who teaches her about the many factors that lead cation and exercise should be evaluated for pos- to a gender perception of voice, which is illumi- sible bariatric interventions. nating for Caitlin because she had always Tom is a trans man who has begun testoster- assumed pitch was the only factor. Gina puts one therapy, which has been very helpful in together a number of vocal exercises for Caitlin relieving his gender dysphoria, but has led to sig- to begin working on. nifi cant weight gain, especially in his abdomen. He is referred to Allison, a dietician working on his primary care team. Allison works with Tom to The Dietician examine his dietary patterns and to plan for some reasonable goals to work on, including increas- Healthy eating is of course a laudable goal for ing his level of physical activity. Tom reports that everyone, but there are specifi c areas in which he had previously enjoyed going to the gym, but attention to eating and nutrition in transgender has felt awkward doing so since he has begun to care is important. The prevalence of eating disor- appear more masculine, and has developed anxi- ders among transgender people is unknown, ety about change rooms. though Vocks et al. [31 ] did show that both the trans men and trans women in their sample had higher scores on some eating disorder symptoms The Occupational Health scales compared to cisgender individuals. or Vocational Professional In clinical practice it is not uncommon to hear how eating and body image interacts with issues Work issues come up frequently in transgender of gender identity and gender dysphoria. For trans care. The interventions sought to relieve gender men, a lean build may be prized in order to empha- dysphoria, especially surgical interventions, are size musculature, reduce fat stores in breast tissue expensive and, unfortunately, often not covered or hips, or to induce amenorrhea. On the other by public or private health insurance (see below). hand, some trans men recognize that obese males As such earning enough money to cover living have gynecomastia and therefore such a build can expenses as well as save for the future is a high support their appearance as male. Trans women priority for many. This goal can be undermined may want to lose weight due to cultural pressures by the experience of discrimination in job inter- to be thin, to minimize muscle bulk or to fi t better views or the workplace. A vocational therapist into women’s clothing. Consultation with a regis- can be very helpful in helping an unemployed tered dietician on these matters can help with iden- transgender patient manage the challenges of tifying realistic goals and healthier behaviors. fi nding work. As well, hormone interventions of both kinds Professionals in a workplace’s occupational have weight gain, hypertension, lipid abnormali- health department can play a crucial and highly ties and Type II diabetes as potential conse- valued role in supporting their transgender 18 Interdisciplinary Care for Transgender Patients 347 employees by initiating educational interventions inclusion in health insurance plans is also the for colleagues and liaison with human resource subject of ongoing advocacy [34 ]. Insurance and professionals to ensure trans-positive workplace benefi ts professionals can be a part of an interdis- policies. It is important to recognize that working ciplinary health team by examining their policies in the preferred gender role can be a component and supporting change toward greater transgen- of treatment for gender dysphoria. For some indi- der inclusion. viduals a social transition to the preferred gender One area that is important to consider in this role may be suffi cient for relief of their distress. regard is the issue of cosmetic versus medically For many others who eventually seek genital sur- necessary procedures. Policies sometimes are gery, a “full time, continuous, gender role experi- restrictive with respect to procedures tradition- ence” of at least 1 year is considered a minimal ally associated with cosmesis, such as electroly- requirement for proceeding (WPATH Standards sis or chest/breast reconstruction procedures. It is of Care, version 7: [ 1 ]). Documentation of this important to recognize that when the medical gender role experience from employers may be goal is relief of gender dysphoria, then these pro- required by the patient seeking genital surgery, cedures are indeed medically necessary. which may take the form of a brief letter indicat- Additionally, policy restrictions on travel outing the employee presents to work in the pre- side of state, provincial or national jurisdictions ferred gender role and is addressed by their for care should be modifi ed for these procedures preferred name. as the number of medical professionals who per- Dora is an occupational therapist in the form these procedures (especially the genital employee health offi ce of an automobile manu- operations) are relatively few. facturing company. She is approached by a human resources offi cer about Sandy, who has informed the company she plans to present as Program Models female to the workplace after she gets back from of Interdisciplinary Teams a brief leave of absence. Dora invites Sandy to come in for a visit with her to plan for a smooth Because of the inherently interdisciplinary nature workplace transition. of transgender care, programs that emphasize the interdisciplinary team should be the gold standard of care. Patients should not be left with the The Insurance or Benefi ts burden of coordinating their care and convincing Professional the various health professionals involved to communicate with each other. Coverage of transition related medications and There are several North American models of procedures is an ongoing challenge for transgen- such care: der individuals. In the United States, many transgender people were denied basic health insurance The University of California San Francisco based solely on being transgender, a practice now (UCSF) Center of Excellence for Transgender illegal under the Affordable Care Act. Even in Care is an interdisciplinary service where countries that have publicly funded health insur- clinical coordination of care between medical, ance, like Canada, coverage can be vulnerable to surgical and mental health services is modeled, political whims, as when coverage for gender and other advocacy and support services are reassignment surgery was delisted as a benefi t in readily available. Ontario between 1998 and 2008 [32 ]. http://transhealth.ucsf.edu/ However, many employers now provide insur- The Mazzoni Center in Philadelphia similarly offers ance coverage for transgender health and a recent clinical, mental health and support services for report from the Williams Institute indicates that transgender individuals in a coordinated fashion. they can do so at little to no cost [ 33 ]. Transgender http://mazzonicenter.org 348 C.A. McIntosh

The Sherbourne Health Centre in Toronto, gender-nonconforming people, version 7. Int Ontario, has been an innovator in the ﬁ eld of J Transgend. 2011;13:165–232. 2. Hembree WC, Cohen-Kettenis P, Delemarre-van de LGBT and particularly transgender health. It Waal HA, Gooren LJ, Meyer 3rd WJ, Spack NP, also has adapted a widely available interdisci- Tangpricha V, Montori VM. Endocrine treatment of plinary care model available in the Ontario transsexuals persons: an Endocrine Society clinical called the Family Health Team (FHT) to the practice guideline. J Clin Endocrinol Metab. 2009; 94:3132–54. purposes of better coordinated transgender 3. Royal College of Psychiatrists. Good practice guide- health [5 ]. lines for the assessment and treatment of adults with http://sherbourne.on.ca/lgbt-health/health- gender dysphoria; 2013. http://www.rcpsych.ac.uk/ services/ publications/collegereports.aspx 4. Momsen AM, Rasmussen JO, Nielsen CV, Iversen http://www.health.gov.on.ca/en/pro/pro- MD, Lund H. Multidisciplinary team care in rehabili- grams/fht/ tation: an overview of reviews. J Rehabil Med. 2012;44:901–12. 5. Rosser WW, Colwill JM, Kasperski J, Wilson L. Progress of Ontario’s Family Health Team Model: Summary A Patient-Centered Medical Home. Ann Fam Med. 2011;9:165–71. Transgender care can be complex because issues 6. Tinetti ME. Preventing falls in elderly persons. N of assessment, treatment and support necessarily Engl J Med. 2003;348(1):42–9. 7. Craven MA, Bland R. Better practices in collaborative cross the areas of expertise of different health mental health care: an analysis of the evidence base. care providers. Thus an interdisciplinary team, Can J Psychiatry. 2006;51 Suppl 1:1S–72S. that is, a team made up of providers of different 8. Meadows GN, Harvey CA, Joubert L, Barton D, Bedi disciplines who also communicate well with each G. Best practices: the consultation–liaison in primary- care psychiatry program: a structured approach to other, can make a tremendous difference to an long-term collaboration. Psychiatr Serv. 2007;58: individuals patient care experience and outcome. 1036–8. This chapter described a basic approach to engag- 9. Rubin AS, Littenberg B, Ross R, Wehry S, Jones ing the transgender patient in care and explored M. Effects on processes and costs of care associated with the addition of an internist to an inpatient psy- types of distress associated with the transgender chiatry team. Psychiatr Serv. 2005;56:463–7. experience. The composition of an interdisciplin- 10. Langer SJ. Gender (dis)agreement: a dialogue on the ary team and the roles of team members was out- clinical implications of gendered language. J Gay lined, though an exhaustive list might include Lesbian Ment Health. 2011;15:300–7. 11. Feldman J, Spencer K. Gender dysphoria in a 39-year- some members left out here for brevity’s sake. old man. CMAJ. 2014;186:49–50. While work in this area can be challenging, it 12. American Psychiatric Association. Diagnostic and also has great rewards in being able to help an statistical manual of mental disorders. 5th ed. individual alleviate distress and improve their Arlington, VA: American Psychiatric Publishing; 2013. quality of life. It is also brings the great pleasure 13. Meyer IH. Prejudice, social stress, and mental health of working with talented colleagues. in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129:674–97. 14. Garnets LD, Herek GM, Levy B. Violence and vic- References timization of lesbians and gay men: mental health consequences. J Interpers Violence. 1990;5:366–83. 1. Coleman E, Bockting W, Botzer M, Cohen-Kettenis P, 15. Crocker J. Social stigma and self-esteem: situational DeCuypere G, Feldman J, Fraser L, Green J, Knudson construction of self-worth. J Exp Soc Psychol. G, Meyer WJ, Monstrey S, Adler RK, Brown GR, 1999;35:89–107. Devor AH, Ehrbar R, Ettner R, Eyler E, Garofalo R, 16. Steele CM. A threat in the air: how stereotypes shape Karasic DH, Lev AI, Mayer G, Meyer-Bahlburg H, intellectual identity and performance. Am Psychol. Hall BP, Pfäfﬂ in F, Rachlin K, Robinson B, Schechter 1997;52:613–29. LS, Tangpricha V, van Trotsenburg M, Vitale A, 17. Meyer IH, Dean L. Internalized homophobia, inti- Winter S, Whittle S, Wylie KR, Zucker K. Standards macy, and sexual behavior among gay and bisexual of care for the health of transsexual, transgender, and men. In: Herek GM, editor. Stigma and sexual orien- 18 Interdisciplinary Care for Transgender Patients 349

tation: understanding prejudice against lesbians, gay ple of color who have survived traumatic life events. men, and bisexuals. Thousand Oaks, CA: Sage; 1998. Traumatology. 2011;17:34–44. 18. Hill DB, Willoughby BLB. The development and 28. Golub SA, Walker JJ, Longmire-Avital B, Bimbi DS, validation of the genderism and transphobia scale. Parsons JT. The role of religiosity, social support, and Sex Roles. 2005;53:531–44. stress-related growth in protecting against HIV risk 19. Cochran SD, Mays VM. Lifetime prevalence of sui- among transgender women. J Health Psychol. cide symptoms and affective disorders among men 2010;15:1135–44. reporting same-sex sexual partners: results from 29. Spicer SS. Healthcare needs of the transgender home- NHANES III. Am J Public Health. 2000;90:573–8. less population. J Gay Lesbian Ment Health. 2010;14: 20. Drescher J. I’m Your Handyman: a history of repara- 320–39. tive therapies. J Homosex. 1998;36(1):19–42. 30. Hamblin RJ, Gross AM. Religious faith, homosexual- 21. Beemer BR. Gender dysphoria update. J Psychosoc ity and psychological well-being: a theoretical and Nurs Ment Health Serv. 1996;34:12–9. empirical review. J Gay Lesbian Ment Health. 2014; 22. McIntosh CA. Psychotherapy and transgender and 18:67–82. transsexual people: bridging the gap. Workshop pre- 31. Vocks S, Stahn C, Loenser L, Tegenbauer U. Eating and sented at Annual Meeting of GLMA. San Juan, Puerto body image disturbances in male-to-female and female-to- Rico; 2007. male transsexuals. Arch Sex Behav. 2009;38(3):364–77. 23. Fraser L. Depth psychotherapy with transgender peo- 32. Ajandi J. Neoconservativism and health care: access ple. Sex Relatsh Ther. 2009;24:126–42. and equity for people who are transgender, two-spirit, 24. Follins L, Walker J, Lewis MK. Resilience in Black and intersex. J Res Women Gender [Digital Journal]. lesbian, gay, bisexual, and transgender individuals: a Accessed at: https://digital.library.txstate.edu/handle/ critical review of the literature. J Gay Lesbian Ment 10877/4429 Health. 2014;18:190–212. 33. Herman JL. Costs and benefi ts of providing transition- 25. Testa RJ, Jimenez CL, Rankin S. Risk and resilience dur- related health care coverage in employee health ben- ing transgender identity development: the effects of efi t plans: fi ndings from a survey of employers. Los awareness and engagement with other transgender people Angeles, CA: The Williams Institute; 2013. http:// on affect. J Gay Lesbian Ment Health. 2014;18:31–46. williamsinstitute.law.ucla.edu/research/transgender- 26. Koken JA, Bimbi DS, Parsons JT. Experiences of issues/costs-benefits-providing-transition-related- familial acceptance and rejection among transwomen health-care-coverage-herman-2013/ . of color. J Fam Psychol. 2009;23(6):853–60. 34. Transgender Law Center. Organizing for transgender 27. Singh AA, McKleroy VS. “Just getting out of bed is a health care. San Francisco, CA; 2012. http://transgen- revolutionary act”: the resilience of transgender peo- derlawcenter.org/issues/health/orgguide Medical Transition for Transgender Individuals 19

Asa E. Radix

Purpose Terminology

The purpose of this chapter is to provide an Transition refers to the process of affi rming a overview of medical transition (feminizing and gender identity that is different from the birth- masculinizing regimens) for transgender assigned gender role. For some individuals this individuals may be a social transition, involving changes in gender roles and expression without the need to medically feminize or masculinize their bodies. Learning Objectives For others however transition includes the use of cross-gender hormone therapy and/or surgical • Describe the terminology, process, and con- procedures that fall under the umbrella of gender sent challenges for cross-gender hormone confi rming surgeries [1 ]. therapy (KP1, KP3, KP5, PC3, PC6) Social transition may include items such as • Discuss the physiological changes, time frame changing names, pronouns and appearance to associated with hormonal transition, and align with the affi rmed gender. Non-medical inter- potential adverse outcomes (PC4, PC6) ventions for transgender men may include “bind- • Defi ne the appropriate clinical and laboratory ing” or compressing the breasts, and “packing” monitoring while on transition regimens (PC6) material in the groin area to create a more mascu- • Identify at least 3 insurance/reimbursement line appearance. For transgender women, non- concerns and other structural barriers for medical interventions may include pushing the medical transition (SBP1, SBP4, SBP6) testicles into the inguinal canal area and placing the penis between the legs, held in place by tape or tight underwear, a process known as “tucking”. Medical transition is the use of cross-gender hormone therapy to induce the secondary sex characteristics of the affi rmed gender while suppressing those of the natal sex. For transgender men this usually requires the use of testosterone. * A. E. Radix , M.D., M.P.H. ( ) For transgender women, combinations of estro- Callen-Lorde Community Health Center , 356 West 18th Street , New York , NY 10011 , USA gens and androgen blockers are typically used. e-mail: [email protected] Although hormones have been used for medical

Table 19.1 Surgical transition procedures deemed cosmetic procedures and not medically Feminizing procedures Masculinizing procedures necessary [5 ]. A white paper produced by the Hormones (estrogen) Hormones (testosterone) Human Rights Campaign Foundation researched Androgen blockers Androgen blockers organizations that voluntarily completed ques- Breast augmentation Chest masculinization tionnaires for the Corporate Equality Index. The Vaginoplasty Hysterectomy Labiaplasty Salpingo-oophorectomy Foundation identifi ed only 206 private sector Orchiectomy Phalloplasty employers and 5 public entities (University of Tracheal shave Metoidioplasty California and the University of Michigan, the Facial bone reduction Vaginectomy cities of Minneapolis, New York, and San Rhinoplasty Scrotoplasty Urethroplasty Francisco) that offer transition inclusive cover- Testicular prostheses age [6 ]. A needs analysis among transgender persons revealed that 47 % were uninsured [ 7 ], much higher than the national average, and highlighted transition for over seven decades, these are the diffi culty both insured and uninsured partici- considered “off label” use in the USA. pants had accessing health care services. Surgical transition refers to a wide array of sur- The U.S. Department of State changed their gical procedures (Table 19.1 ). The most common policy in 2011 allowing gender marker changes surgery undertaken by transgender men is mastec- on passports without the need for surgical inter- tomy, also known as “top surgery”. Genital sur- ventions. Medical providers can assist their trans- gery (“bottom surgery”) for transgender men gender patients with obtaining vital gender includes creation of a phallus (phalloplasty or appropriate and affi rming identity documents, metoidioplasty) as well as hysterectomy and thereby improving access to health care, educa- oophorectomy. Transgender women may undergo tion and job opportunities. The medical provider breast augmentation, facial feminization as well as need only confi rm that the client has received genital surgery to create a neovagina using penile appropriate clinical treatment for gender tissue (penile inversion vaginoplasty) or resected transition. sigmoid colon tissue (colo-vaginoplasty).

Helpful Hint Barriers to Care There are resources available to assist your clients locating trans-inclusive health A recent national survey demonstrated that peo- insurance plans. ple of transgender experience are less likely to https://www.hrc.org/resources/entry/ utilize both preventive and emergency medical ﬁ nding-insurance-for-transgender-related- care [2 ]. Reasons include high rates of discrimi- healthcare nation in health care settings, including being denied care, being less likely to have medical insurance or afford care and encountering medical providers who are not knowledgeable about Utilization of Transition-Related their unique health issues. The lack of gender Health Services appropriate identiﬁ cation may also limit access to medical services. In a recent Behavioral Risk Factor Surveillance In the USA, transition-related health care is System survey conducted in Massachusetts, addi- often excluded from commercial health insur- tion of a question on gender identity allowed ance plans and Medicaid, the nation’s largest researchers to estimate the prevalence of being public health plan for over 57 million low income transgender at 0.5 % [8 ], a far greater prevalence persons [3 , 4]. Transition related health costs than previous studies that determined transgender were not tax deductible until 2010 as they were identity based on undergoing surgical transition. 19 Medical Transition for Transgender Individuals 353

Community based surveys determine that over providers and advocates were also increasingly 60 % of transgender persons have taken cross-sex critical of the restrictive guidelines, stating that it hormones [2 ], with highest rates among transgen- negatively impacted on patient autonomy and der women and those over age 50, however many held transgender patients to a different standard transgender and gender nonconforming persons than non-transgender clients, even for compara- (up to 41 % of natal females) do not plan to initi- ble irreversible procedures [13 ]. ate hormones [9 ]. The most recent version of the standards of care (WPATH version 7) allows for a more individualized and ﬂ exible approach to medical Helpful Hint transition and has no mandatory eligibility or Transgender people may not wish to readiness criteria. These changes reﬂ ect new undergo medical or surgical transition—be knowledge such as evidence highlighting posi- careful not to make assumptions tive clinical outcomes and low rates of adverse effects, including regret [1 , 14 ].

Standards of Care for Medical The Informed Consent Model Transition During the 1990s, several health centers and Provision of cross-sex hormone therapy in the USA health care professionals in the United States, and other countries has usually followed the stan- including the Callen-Lorde Community Health dards of care, fi rst published by the Harry Benjamin Center in New York City and Howard Brown International Gender Dysphoria Association Health Center in Chicago, questioned the need (HBIGDA) in 1979 and its subsequent revisions. for the psychotherapy and the mental health letter HBIGDA, now renamed The World Professional before accessing cross-sex hormones. The cen- Association for Transgender Health (WPATH), ters believed that transgender identity was not recently released its seventh version of the Standards pathological and that requirements for mental of Care for the Health of Transsexual, Transgender, health evaluation and eligibility letters were and Gender Nonconforming People [1 ]. unnecessary and created barriers to care. Policies Early versions of the standards of care required that historically limited hormones and other med- a mental health evaluation to determine eligibility ical therapies to those determined to be “real” and readiness of transgender clients to initiate transsexuals often resulted on patients employing cross-sex hormones. In some instances family autobiographical narratives that conformed to the members were interviewed to verify that the client heteronormative and gender binary biases of their had gender dysphoria [10 –12 ]. The process of tran- healthcare providers [15 ]. Medical providers sition was termed “triadic therapy” and required a were justifi ably concerned that these stringent period of “real life experience” and psychotherapy requirements for mental health assessments could before proceeding to hormones and surgery. After result in clients adjusting their stories to meet the a period of evaluation the mental health profes- eligibility and readiness criteria, an issue that has sional would provide a letter that stated the indi- recently been described in the literature [16 ]. The vidual had met the eligibility criteria and could philosophy of the informed consent model was proceed with medical interventions. This letter based on patient autonomy, self-determination, became the necessary pathway for many transgen- informed decision making and harm reduction. der persons to access hormonal transition. Instead of a mental health provider determining The requirements for psychotherapy presented eligibility for medical transition, the primary care particular challenges for transgender persons in provider is responsible for screening clients for the United States, especially for those who were serious mental and medical concerns and discus- uninsured and of limited income. Healthcare sion the known risks and benefi ts of treatment. 354 A.E. Radix

If the client is able to make an informed decision gonadotropin releasing hormone (GnRH) ana- regarding the treatment plan, then cross-sex logue, e.g., leuprolide acetate, no sooner than hormone therapy is initiated. The informed con- Tanner stages 2–3 [18 ]. This has additional advan- sent model integrates transgender care fi rmly into tages of preventing the irreversible secondary sex a primary care and health promotion model characteristics of the natal sex to develop (e.g., instead of in a mental health framework. beard growth and deepening of the voice in natal The authors of the recently published WPATH males and breast growth in natal females), making standards of care specifi cally addressed the it easier for transgender youth to present socially informed consent models implemented by in the affi rmed gender. The treatment is also fully Callen-Lorde and other centers such as The reversible, and puberty will resume if the puberty- Fenway Health Center and The Tom Waddell suppressing medications are discontinued. When Health Center. They stated that despite a greater on treatment, close anthropometric monitoring, as emphasis on the roles of mental health providers well as evaluations of bone age, bone density and in the standards of care, the informed consent hormone levels are required. At approximately models are “consistent with” the current version age 16, cross-sex hormone therapy can be initi- of the SOC. Furthermore, they acknowledge that ated. Due to the complex medicolegal and psy- although a mental health screening is indicated, chological concerns regarding treatment of psychotherapy is not an absolute requirement for transgender adolescents, medical providers hormones, and furthermore recognize that for should seek assistance of clinical experts in this some this may be an unnecessary hurdle [1 ]. fi eld. The discussion of medical transition below refers to hormone therapy for adults.

DSM-5 Initiating Hormones The conceptualization of gender identity has changed over time, with a move towards The goal of medical transition is to induce the depathologization of transgender identity. The secondary sex characteristics of the afﬁ rmed sex. newly released Diagnostic and Statistical Manual This is done through a combination of reducing of Mental Disorders, Fifth Edition (DSM-5) [ 17 ] the endogenous hormone levels of the natal that replaced the diagnosis of gender identity (genetic) sex and by replacing with those of the disorder with that of gender dysphoria, sup- reassigned sex (see Fig. 19.1 ) [18 ]. ported the concept that transgender identiﬁ cation could be regarded as part of human diversity without an automatic need for psychotherapeutic The Medical Intake intervention. During the medical intake the medical provider should assess the transgender client for any medi- Adult and Adolescent Guidelines cal conditions that may be exacerbated by the initiation of cross-sex hormones and evaluate The guidelines for medical transition usually their ability to make an informed decision about differentiate between treatment of adolescents medical treatment. and adults [1 , 18 ]. Medical transition for adolescents usually requires a team approach consisting • The medical history, ask about: of experienced psychotherapists, endocrinologists – Coronary artery disease and pediatricians or adolescent specialists. Going – Cerebrovascular disease through puberty may cause extreme suffering for – Hormone-related cancers, e.g. breast, uterine the transgender adolescent. Treatment is initiated – Hepatitis with puberty-suppressing medications, usually a – Thromboembolic disease 19 Medical Transition for Transgender Individuals 355

Fig. 19.1 Hypothalamic- pituitary-gonadal (HPG) Hypothalamus axis (Source: - K. Eckstrand) + GnRH -

- Pituitary -

+ FSH + LH

Testicles Ovaries

Estrogen / Testosterone Progesterone

– Gallstones fertility). Clients should be given advice – Erythrocytosis about options, including cryopreservation of – Migraine headaches ova, and semen storage. Contraceptive needs – Depression, anxiety, or psychosis should be discussed with transgender men. – Alcohol, tobacco, and other drug use – Assess that the patient’s goals and under- (The presence of hormonally responsive standing of cross-sex hormone therapy cancers and/or active thromboembolic dis- matches the general nature and purpose of ease are considered contraindications to ini- treatment tiation of cross-sex hormones. Re-evaluate – Assess and provide psychosocial support after the condition has stabilized). and referrals as needed • The physical exam should evaluate for the – Explore patients’ social transition needs conditions noted above. such as peer support, psychotherapy, doc- • Baseline laboratory testing: umentation needs e.g., identifi cation – Complete blood count documents – Lipid profi le – Basic metabolic panel: BUN, creatinine, electrolytes Helpful Hint – Prolactin level (for transgender women Transgender men who have sex with men already on hormones) should be counseled about the possibility of – Screening for HIV and sexually transmit- pregnancy when on testosterone. Discuss ted diseases contraceptive options including condoms, • Mental Health and Informed consent depot-medroxyprogesterone acetate – Identify mental health issues that may neg- (DMPA) and Intrauterine Devices (IUDs). atively impact initiation of hormones – Discuss risks and benefi ts of hormonal regimens and confi rm patient can provide Documentation informed consent to treatment Many programs have created consent forms for – Discuss fertility and reproductive health clients to sign before initiating cross-sex hor- (cross-sex hormones may negatively impact mones that lists all potential complications of 356 A.E. Radix treatment. Regardless of whether a form is used, Transgender clients may obtain their hor- the medical provider should fully document all mones via the internet or through friends (so discussions held during the visit. called “black market” or “street” hormones) and have access to drugs not commonly found in the USA. They may be unaware of correct dosing, potential drug interactions and adverse effects. Helpful Hint A full inventory of all medications taken should Examples of consent forms for feminizing be obtained during the intake. and masculinizing therapy can be found Many guidelines allow for a range of estrogen here: to be used, e.g., for oral estradiol (Estrace® ) a http://transhealth.ucsf.edu/trans?page= usual range of 2 mg/day to 6 mg/day is used. For protocol-hormone-ready intramuscular use e.g., estradiol valerate http://www.southwindwomenscenter.org/ (Delestrogen® ), the usual range is 5–20 mg im wp-content/uploads/2013/10/Masculinzing- every 2 weeks (or 2–10 mg im every week). Hormone-Therapy- Informed-Consent.pdf Spironolactone is usually dosed at 100–200 mg http://www.southwindwomenscenter.org/ per day, however doses up to 300 mg per day may wp-content/uploads/2013/10/Feminizing- be used (Table 19.2 ). Hormone-Therapy-Informed-Consent.pdf Initial Dosing • Initiate the lowest doses of estrogen and spironolactone with evaluation in 4 weeks. At this Initiation of Cross-Sex Hormones time the dose can be increased to the mainte- (Feminizing Regimens) nance (average) dose.

For feminizing regimens, most published guide- Follow-Up lines recommend a combination of estrogen with • Patients should be evaluated every 2–3 months androgen blockers [1 , 18 ]. Estrogen can be taken in the ﬁ rst year and then every 6 months to in different forms, including 17-beta-estradiol monitor for adverse effects. (transdermal, oral or intramuscular preparations). • If spironolactone is used as the androgen Conjugated equine estrogen and ethinyl estradiol blocker, close attention should be paid to elec- (the main constituent in combined oral contracep- trolytes (potassium) and blood pressure tive pills) were previously used in feminizing (assess for hypotension) regimens, however these are now discouraged due • Serum testosterone and estrogen levels should to increased risk of venous thromboembolism be maintained in the average female range [ 19]. The androgen blocker used most frequently (serum testosterone <55 ng/dl, serum estradiol in the USA is spironolactone, however in Europe 200 pg/ml). Measure levels every 3 months cyproterone acetate is predominantly used. until stable • Serum prolactin should be monitored once each year

Helpful Hint Effects of Therapy Ask clients about previous and current hor- • Breast development starts within 3 months mone use, including agents not obtained by with maximum effect in 3 years prescription (e.g., internet-based and • Slowing of androgenic hair loss through friends) • Fat redistribution (smaller waist, wider hips) starts within 3 months with full effect by 3 years 19 Medical Transition for Transgender Individuals 357

Table 19.2 Feminizing regimens Starting dose Average dose Maximum dose Estrogens Estradiol oral 2 mg/day 4 mg/day 8 mg/day Estradiol valerate intramuscular 5 mg IM every 2 week 20 mg IM every 2 weeks 20 mg IM every 2 weeks Estradiol patch (preferred over age 45) 25 mcg/day 100 mcg/day 200 mcg/day Conjugated Estrogen 1.25–2.5 mg/day 5 mg/day 5 mg/day Not recommended Ethinyl estradiol Not recommended Androgen blockers Spironolactone oral 50 mg/day 200–300 mg/day 400 mg/day Finasteride oral 1 mg/day 1–5 mg/day 5 mg/day Adapted from the Callen-Lorde Transgender Health Protocols, 2013

• Testicular atrophy starts within 3 months may exist between estrogens and Non- • Decrease in erections starts within 3 months nucleoside reverse transcriptase inhibitors • Reduction in muscle mass starts within 3 (NNRTIs) and the Protease inhibitors (PIs). months Most boosted PIs decrease ethinyl estradiol • No effect on voice pitch levels. The effects of Non-nucleosides vary, • No effect on beard hair—electrolysis may be e.g. nevirapine decreases estrogen levels, etra- required virine and rilpvirine increase ethinyl estradiol levels, whereas efavirenz appears to have no effect on levels. There are no known drug- After Orchiectomy drug interactions between ethinyl estradiol • Lower doses of estrogens are recommended, and the antiretroviral classes of NRTIs/ usually half of the dose used before surgery. NtRTIs, integrase inhibtors, CCR5 antago- • Anti-androgens (spironolactone) can be nists or fusion inhibitors. DHHS recom- stopped. mends that oral contraceptives and unboosted • Clients may wish to continue dihydrotestos- amprenavir (or fosamprenavir) not be co- terone blockers if androgenic hair loss administered due to a decrease in amprenavir continues. serum concentrations; therefore, unboosted fosamprenavir should probably be avoided with estrogens in feminizing regimens. HIV Infection Consider monitoring estradiol levels when ini- • HIV disease is not a contraindication to femi- tiating or changing anti-retroviral therapy. nizing hormone therapy. In fact, hormone therapy may improve engagement and retention in care [20 ]. There are no speciﬁ c data on interactions between the doses of estrogens Helpful Hint commonly used in feminizing regimens and Although Finasteride is not very effective antiretroviral regimens. Most of the available as an androgen blocker, it may be used if data is based on studies with oral contracep- spironolactone is not tolerated or used tives (ethinyl estradiol). Metabolism of estro- together with spironolactone to slow androgens occurs via the cytochrome P450 enzyme genic hair loss system, thus potential drug–drug interactions 358 A.E. Radix

Table 19.3 Masculinizing Regimens Hormone Starting dose Average dose Maximum dose Testosterone (cypionate or 100 mg every 2 weeks 200 mg every 2 weeks 200 mg every 2 weeks enanthate) intramuscular Or 50 mg every week IM Or 100 mg every week IM Or 100 mg every week IM Transdermal Testosterone gel 1 % 2.5 g daily 5–10 g daily 10 g daily Testosterone patch 2.5 mg/daily 5 mg/daily 7.5 mg/daily Adapted from the Callen-Lorde Transgender Health Protocols, 2013

Initiation of Cross-Sex Hormones • Vaginal atrophy 3–6 months (Masculinizing Regimens) • Deepening of the voice within 6–12 months

Testosterone therapy is used for masculinization [1 , 18 ]. Testosterone can be taken in different Adverse Effects of Cross-Sex forms, including transdermal, oral or intramuscu- Hormone Regimens lar preparations (Table 19.3 ). Cross-sex hormone therapy is usually well tolerated Initial Dosing and has a low risk of adverse events. • Initiate the lowest dose of testosterone with evaluation in 4 weeks. At this time the dose Cancer can be titrated to the maintenance (average) Both short and long term follow-up of transgender dose persons receiving cross gender hormones demon- • Testosterone cypionate is usually suspended strate that there appear to be no increase in cancer in cottonseed oil while Testosterone enanthate outcomes, including breast, uterus or prostate is suspended in sesame oil; enquire about cancer [14 , 21 – 23 ]. Prostate cancer may be more allergies before initiating treatment aggressive when diagnosed in transgender women who have taken cross-sex hormones and Follow-Up androgen blockers, however data are limited. • Patients should be evaluated every 2–3 months The PSA level is low when on androgen blockers in the ﬁ rst year and then every 6 months to and is not very useful for monitoring. monitor for adverse effects. • Close attention should be paid to lipids and Cardiovascular Risk hemoglobin. For clients receiving oral Several studies have shown that cardiovascular testosterone, the liver (transaminases) should and cerebrovascular mortality is increased, partic- be closely monitored. ularly among transgender women on hormones • Serum testosterone should be maintained in [21 , 24 , 25 ]. The studies were not adjusted for risk the average male range. Serum testosterone factors (such as tobacco use and HIV) that are goal is 320–1000 ng/dL. Measure levels every highly prevalence in this population. Ethinyl estra- 3 months until stable diol and conjugated equine estrogens are associ- • Measure serum testosterone level half-way ated with higher rates of cardiovascular disease between injections and are no longer recommended. Clients should be counseled about the risks of tobacco use and Effects of Therapy smoking cessation prioritized. Close monitoring • Acne and oily skin starts 1–6 months, usually and treatment of traditional risk factors, e.g., resolved within 2 years hyperlipidemia and hypertension. Transdermal • Facial hair starts in 6–12 months estrogens may convey a lower risk of cardiovascu- • Fat redistribution starts 1–6 months lar disease and are the preferred route for older • Menses cease within 2–6 months clients or those with elevated cardiovascular risk. 19 Medical Transition for Transgender Individuals 359

Venous Thromboembolism Cancer Screening Estrogen is a risk factor for venous thromboembolism, especially oral ethinyl estradiol. For women Transgender individuals should continue cancer at increased risk e.g., due to mobility issues or screening following standard guidelines for their tobacco use, transdermal estrogen is preferred. natal sex if organs exist.

Hyperlipidemia Breast and Cervical Cancer Screening High triglycerides have been seen in transgender Transgender men who have a cervix should persons receiving testosterone or estrogen. follow cervical cancer screening guidelines for Transgender men may experience a lowering of natal females. Breast cancer screening should the HDL cholesterol [26 ]. continue for those who have not undergone mastectomy. For those who have undergone mastec- Erythrocytosis / Polycythemia tomy, the potential still exists for breast cancer Elevated hematocrits have been seen in transgen- occurring in remaining breast tissue. In addition, der men receiving testosterone, thus levels should aromatization of testosterone to estrogen occurs be monitored at least every 6 months. The testos- and may be a risk for estrogen-receptor positive terone dose should be decreased or discontinued if breast cancer. A recent study has revealed a lower the hematocrit increases above 50 %. Therapeutic risk of breast cancer among transgender men phlebotomy has also been used to treat this con- who have undergone mastectomy, in line with dition however there are no guidelines for when that for natal men [22 ]. Guidelines however still and how often to perform phlebotomy. The usual recommend that breast cancer screening continue goal is a hematocrit of 45 %. as per natal females [30 ]. Although the risk of breast cancer does not S k i n appear to be elevated in transgender women with Testosterone increases skin oiliness and acne in a history of estrogen therapy compared with natal transgender men, especially in the ﬁ rst year. Mild males [ 22], some guidelines recommend fol- fronto-temporal androgenic hair loss may also lowing breast cancer screening recommendations occur with long term testosterone use [27 ]. for natal women due to concerns about long term estrogen use [18 , 30 ]. Hyperprolactinemia and Prolactinomas There is no established role for cervical cancer Prolactin levels usually increase in transgender screening in transgender women who have under- women receiving estrogen. Prolactin levels should gone vaginoplasty procedures, however annual be monitored at least yearly as there have been visual inspection of the neovagina is recom- reports of prolactinomas occurring after long-term mended to evaluate for other issues, for example estrogen use. Serum prolactin levels over 50 ng/mL genital warts or ulcers. are uncommon and usually respond to reducing the Screening for other cancers, e.g. lung and estrogen. If persistent elevations occur, the possi- colon, remain the same as for non-transgender bility of a prolactinoma should be considered persons.

Ostoepenia and Osteoporosis Bone density appears to be preserved in transgen- Helpful Hint der men receiving testosterone, however transgen- • The Prostate speciﬁ c antigen level der women have a higher prevalence of osteopenia, (PSA) is falsely low among transgender even before initiating hormones [ 28 , 29 ]. The women receiving androgen blockers and endocrine society guidelines recommend screening therefore is not useful for screening those at average risk starting at age 60. For those • After vaginoplasty, the prostate is exam- who have undergone gonadectomy (orchiectomy ined by palpation of the anterior neo- or oophorectomy), there is a high risk of osteoporo- vaginal wall sis if cross-sex hormones are discontinued [18 ]. 360 A.E. Radix

Summary 5. O’Donnabhain RG. Rhiannon G. O’Donnabhain, Petitioner v. Commissioner of Internal Revenue; 2010. 6. Fidas D, Green J, Wilson A. Transgender-inclusive This section provided an overview of medical health care coverage and the corporate equality index. transition (feminizing and masculinizing therapy) Washington, DC: Human Rights Campaign whereas the following section will focus on Foundation; 2012. options for those who undergo surgical transi- 7. Xavier JM et al. A needs assessment of transgendered people of color living in Washington, DC. Int tion. The following on-line resources are avail- J Transgend. 2005;8(2–3):31–47. able to provide further information on provision 8. Conron KJ et al. Transgender health in Massachusetts: of culturally competent healthcare to clients of results from a household probability sample of adults. transgender experience. Am J Public Health. 2012;102(1):118–22. 9. Kuper LE, Nussbaum R, Mustanski B. Exploring the diversity of gender and sexual orientation identities in an online sample of transgender individuals. J Sex Appendix Res. 2012;49(2–3):244–54. 10. Walker PAB, Jack C, Green R, Laub DR, Reynolds CL, Wollman L. Standards of care: the hormonal and Resources for Transgender Care surgical sex reassignment of gender dysphoric persons. Arch Sex Behav. 1985;14(1):79–90. • Callen-Lorde Community Health Center: 11. Levine SB, Brown GB, Coleman E, Cohen-Kettenis http://www.callen-lorde.org P, Hage JJ, Van Maasdam J, Petersen M, Pfäfﬂ in F, Schaefer L. Harry Benjamin International Gender • Fenway Community Health: www.fenway- Dysphoria Association’s The standards of care for gen- health.org der identity disorders. Int J Transgend. 1998;2(2). • Howard Brown Health Center: http://www. http://web.archive.org/web/20070502001025/ howardbrown.org/hb_services.asp?id=37 http://www.symposion.com/ijt/ijtc0405.htm 12. Meyer W, Bocting W, Cohen-Kettenis P, Coleman • University of Minnesota, Center for Sexual E, DiCeglie D, Devor H, Gooren L, Hage JJ, Kirk Health: http://www.phs.umn.edu/clinic/trans- S, Kuiper B, Laub D, Lawrence A, Menard Y, gender/home.html Monstrey S, Patton J, Schaefer L, Webb A, Wheeler • Tom Waddell Health Center: www.sfdph.org/ C. The Harry Benjamin International Gender Dysphoria Association’s Standards of Care for dph/comupg/oservices/medSvs/hlthCtrs/ Gender Identity Disorders, Sixth Version. Int TransgenderHlthCtr.asp J Transgend. 2001;5(1). http://www.symposion. • UCSF Center of Excellence for Transgender com/ijt/soc_2001/index.htm Care: http://transhealth.ucsf.edu/trans?page= 13. Hale CJ. Ethical problems with the mental health evaluation standards of care for adult gender variant protocol-00-00 prospective patients. Perspect Biol Med. 2007; 50(4):491–505. 14. Gooren LJ, Giltay EJ, Bunck MC. Long-term treatment of transsexuals with cross-sex hormones: extensive personal experience. J Clin Endocrinol Metab. References 2008;93(1):19–25. 15. Nieder TO, Richter-Appelt H. Tertium non datur – 1. Coleman E, Bockting W, Botzer M. Standards of care either/or reactions to transsexualism amongst health for the health of transsexual, transgender, and gender- care professionals: the situation past and present, nonconforming people, version 7. Int J Transgend. and its relevance to the future. Psychol Sex. 2011; 2011;13:165. 13 SRC – GoogleScholar. 2(3):224–43. 2. Grant JM, Mottet LA, Tanis J. National Transgender 16. Pimenoff V, Pfäfﬂ in F. Transsexualism: treatment Discrimination Survey Report on Health and Health outcome of compliant and noncompliant patients. Int Care. Washington, DC: National Center for J Transgend. 2011;13(1):37–44. Transgender Equality and the National Gay and 17. American Psychiatric Association, A.P.A.D.S.M.T.F. Lesbian Task Force; 2010. Diagnostic and statistical manual of mental disorders: 3. Lombardi E. Enhancing transgender health care. Am DSM-5. 2013; Available from: http://dsm.psychiatryon- J Public Health. 2001;91(6):869–72. line.org/book.aspx?bookid=556 4. Gehi P, Arkles G. Unraveling injustice: race and class 18. Hembree WC et al. Endocrine treatment of transsex- impact of medicaid exclusions of transition-related ual persons: an Endocrine Society clinical practice health care for transgender people. Sex Res Soc guideline. J Clin Endocrinol Metab. 2009;94(9): Policy. 2007;4(4):7–35. 3132–54. 19 Medical Transition for Transgender Individuals 361

19. Asscheman H et al. Venous thrombo-embolism 25. Wierckx K et al. Prevalence of cardiovascular dis- as a complication of cross-sex hormone treatment ease and cancer during cross-sex hormone therapy of male- to- female transsexual subjects: a review. in a large cohort of trans persons: a case-control Andrologia. 2014;46(7):791–5. study. Eur J Endocrinol. 2013;169(4):471–8. 20. Yehia BR et al. Retention in care and health out- 26. Elamin MB et al. Effect of sex steroid use on cardio- comes of transgender persons living with HIV. Clin vascular risk in transsexual individuals: a system- Infect Dis. 2013;57(5):774–6. atic review and meta-analyses. Clin Endocrinol 21. Asscheman H et al. A long-term follow-up study of (Oxf). 2010;72(1):1–10. mortality in transsexuals receiving treatment with 27. Wierckx K et al. Short- and long-term clinical skin cross-sex hormones. Eur J Endocrinol. 2011; effects of testosterone treatment in trans men. J Sex 164(4):635–42. Med. 2014;11(1):222–9. 22. Gooren LJ et al. Breast cancer development in trans- 28. Van Caenegem E et al. Low bone mass is prevalent sexual subjects receiving cross-sex hormone treat- in male-to-female transsexual persons before the ment. J Sex Med. 2013;10(12):3129–34. start of cross-sex hormonal therapy and gonadec- 23. Gooren L, Morgentaler A. Prostate cancer incidence tomy. Bone. 2013;54(1):92–7. in orchidectomised male-to-female transsexual per- 29. Van Caenegem E et al. Bone mass, bone geometry, sons treated with oestrogens. Andrologia. 2014; and body composition in female-to-male transsexual 46(10):1156–60. persons after long-term cross-sex hormonal therapy. 24. Dhejne C et al. Long-term follow-up of transsex- J Clin Endocrinol Metab. 2012;97(7):2503–11. ual persons undergoing sex reassignment surgery: 30. Unger CA. Care of the transgender patient: the role cohort study in Sweden. PLoS One. 2011;6(2), of the gynecologist. Am J Obstet Gynecol. 2014; e16885. 210(1):16–26. Surgical Treatments for the Transgender Population 20

Randi Ettner

Purpose Introduction to Gender Affi rming Surgery The purpose of this chapter is to provide an overview of the various surgical interventions in The fi rst recorded description of a surgical the treatment of gender dysphoria, and what con- attempt to change an individual’s sex was stitutes appropriate use of these protocols. reported in Germany, in 1931. But the agony of severe gender dysphoria was frequently relieved by earlier, crude surgical attempts which often Learning Objectives amounted to mutilation [1 ]. Ancient people witnessed the castration of • Identify at least fi ve historical and contemporary animals, and the subsequent cessation of mascu- medical, legal, religious and ethical objections to linization. This process, when applied to human gender-confi rming surgeries (KP4, SBP1, SBP4) males, resulted in the creation of Eunuchs— • List the surgical procedures specifi c to male- known to exist since Biblical times [2 ]. While to-female patients and female-to-male patients many Eunuchs were individuals who intention- and defi ne the criteria for providing surgical ally underwent castration to relieve gender dys- interventions (PC3, PC4) phoria, others were boys, involuntarily castrated • Discuss the role of surgery in supporting to preserve voice quality [3 ]. transgender individuals, process for accessing Modern surgical sex reassignment surgery surgery, and possible complications of surgery (also known as gender-affi rming surgery) began, (PC3, PC5) in earnest, in the twentieth century. The surgical • Identify at least three strategies for collaborat- treatment of wounds, necessitated by the trau- ing with medical and mental health providers matic injuries sustained in World War I, led to for comprehensive health care before, during, signifi cant advances in soft tissue reconstructive and after surgical treatment (Pr3, IPC1) surgical techniques. The simultaneous discovery of the synthesis of sex steroid hormones allowed for the previously impossible acquisition of sec- * R. Ettner , Ph.D. ( ) ondary sex characteristics [2 ]. This aggregation New Health Foundation Worldwide , 1214 Lake Street , Evanston , IL 60201 , USA of hormones and surgery gave hope to those e-mail: [email protected] struggling with gender dysphoria.

Controversies Surrounding Surgery “sex-change” operation [7 ]. One might presume that informed consent would constitute a better In 1953, media coverage of Christine Jorgensen’s legal defense than that of therapeutic benefi t. “sex-change surgery” captured the public’s atten- However, most courts held that informed consent tion. While a few surgeons in Mexico, Casablanca, was invalid if a patient was mentally incompe- and South America were willing to perform reas- tent. As the majority of professionals of that era signment surgery, most hospitals prohibited the believed that transsexual patients were suffering procedure. Opposition to sex reassignment sur- from psychopathology, the patient was viewed as gery arose rapidly, in tandem with Ms. incompetent in the eyes of the law. In 1978, a Jorgenson’s fame. The “ Christine operation ” New York court deemed the operation “an exper- generated legal controversies, religious opposi- imental form of psychotherapy by which mutilat- tion, and moral outrage. But it was the psychiat- ing surgery is conducted on a person with the ric community that was most vociferous in intent of setting his mind at ease” [7 ]. challenging the viability of surgery as a legiti- It was not only the medical and legal commu- mate treatment [4 ]. nity that spoke out against surgical treatment for gender dysphoria. Negative public perception intensifi ed as prominent individuals and religious Ethical Objections to Surgery spokespersons vigorously protested sex reassignment. Indeed, opposition arose from many Even as newly-formed gender clinics opened sources. Janice Raymond, a cultural feminist, their doors to transsexual patients (in this chapter, attacked the treatment on the grounds that it rein- the term transsexual applies to patients with gen- forced stereotypic gender roles and should be der dysphoria seeking gender-affi rming surger- “morally mandated out of existence” [ 8 ]. ies), little was known about the condition they Representatives of the Catholic Church insisted purported to treat. Many early opponents viewed that chromosomes alone determine gender, and sex reassignment surgery as “psychosurgery.” chromosomal composition remained unchanged Prominent psychiatrists claimed that the desire after surgery. for surgery was a delusion, or a symptom of By the late 1970s, many of the early gender severe psychopathology. Some conceptualized it clinics closed their doors, ceding to the myriad as a psychosis: “The transsexual is unconsciously challenges and potential liability [4 ]. While it is motivated to discard bad and aggressive features standard surgical practice to remove diseased tis- and create in the fabric of the body a new ideal- sue and/or organs, or to alter structures to improve ized perfection” [5 ]. a patient’s appearance, sex reassignment did not The infl ammatory rhetoric of the debate esca- fi t neatly into either category. Surgeons perform- lated, and transsexualism was often confl ated ing sex reassignment surgery were removing with homosexuality and transvestism. Sadly, healthy tissue and altering normal structures. many people with severe gender dysphoria In some US states that constituted “mayhem”—a requesting help were committed to mental insti- felony whereby one intentionally maims a per- tutions, where electroshock and aversion thera- son, rendering a body part useless [7 ]. pies were too often the default treatments [6 ]. Those surgeons who championed the therapeutic value of surgery were accused of removing Financial Issues healthy organs on the demand of a delusional patient, and threatened with legal consequences. With the advent of an evidence-based approach to The same year that Johns Hopkins opened its pio- medical treatment, a burgeoning body of research, neer treatment program, 1966, saw an Argentinean and well-established standards of care, the scien- surgeon convicted of assault for performing a tifi c community advanced to endorse sex reassign- 20 Surgical Treatments for the Transgender Population 365 ment surgery as the appropriate and medically gluteal implants, and possibly other procedures necessary treatment for intractable, severe gender (see also Chap. 21 ). dysphoria. But the question as to whether these • Breast surgery: augmentation mammoplasty. surgeries are aesthetic or reconstructive is often • Genital surgery: penectomy, orchiectomy, still raised by third party payers. vaginoplasty, and clitoroplasty with recon- Most cosmetic surgeries are not deemed medi- struction of the labia majora and minora [2 ]. cally necessary, and thus, are paid for by the patient. Reconstructive procedures, on the other Female-to-male (FTM) surgical procedures hand, are considered medically necessary, and can include: therefore paid, in part or full, by national health systems or insurance providers. • Liposuction, lipofi lling, pectoral implants, Genital surgery for affi rmation purposes is and possible other cosmetic procedures. reconstructive surgery. It is an intervention that • Breast surgery: subcutaneous mastectomy relieves a medical condition, through removal of • Genital surgery: hysterectomy/oophorec- hormone-producing target organs. Nevertheless, tomy, reconstruction of the urethra (some- there are still many insurers who regard these times performed with metaidoplasty or surgeries as “cosmetic” or “elective” and deny phalloplasty), vaginectomy, scrotoplasty, and coverage. implantation of testicular prosthesis and/or The issue is more indeterminate in the case of erectile prosthesis [ 9 ] . non-genital gender-confi rming surgeries. For instance, is surgical reduction of a prominent Adam’s apple (chondrolaryngoplasty) in a male- Criteria for Providing Surgical to-female transperson a cosmetic procedure? If Interventions the cartilaginous structure is a telltale stigmata of masculinity, isn’t surgical modifi cation necessary Medical governing bodies throughout the world, to insure an authentic female presentation? The such as the World Health Organization, publish same rationale holds true for breast augmenta- guidelines to protect consumers from undergoing tion. Breast development—a visible secondary operations that are experimental, useless, or gen- sex characteristic—confers a female-specifi c erate unacceptably high rates of complications. body profi le that can be an essential component Three overarching conditions apply: First, and of gender transition. Most of these costly proce- foremost, a surgical procedure must demonstrate dures however, are wholly dependent on the abil- a therapeutic effect [ 10 ]. Gender affi rming sur- ity of the patient to fi nance them. The prohibitive geries meet this criterion. More than three expense of face and body surgery has led many decades of research confi rms that gender affi rm- desperate individuals to turn to high-risk alterna- ing surgery is therapeutic, and an effective treat- tives, such as the injection of silicone and the ment for severe gender dysphoria. Indeed, while engagement of disreputable providers. some transgender patients may not desire gender affi rming surgery, surgery is the only effective treatment for others. Gender-affi rming Surgeries The therapeutic benefi ts of genital reconstruction are twofold: First, removal of the testicles Male-to-female (MTF) surgical procedures can eliminates the major source of testosterone in the include: body. Second, the patient attains body congru- ence resulting from normal appearing and func- • Facial feminization surgeries, liposuction, tioning female genital and urinary structure. lipofi lling, voice surgery (thyroplasty), thyroid In a 1998 meta-analysis , Pfaffl in and Junge cartilage reduction (chrondrolaryngoplasty), reviewed data from 80 studies, spanning 30 366 R. Ettner years, from 12 countries. They concluded that and after genital surgery is relatively low, and “reassignment procedures were effective in most complications are minor [27 , 28 ]. Lawrence relieving gender dysphoria” [ 11]. Numerous investigated complications in 232 MTF patients subsequent studies confi rm this conclusion. In who underwent affi rmation surgery, and con- 2007, Gijs and Brewayes analyzed 18 studies cluded that signifi cant complications were published between 1990 and 2007, encompass- “uncommon” [21 ]. A study comparing results ing 807 patients. The researchers concluded: during the period 1965–1995, revealed superior “Summarizing the results from the 18 outcome outcomes in those patients undergoing surgery studies of the last two decades, the conclusion after 1985 [29 ]. Clearly, improvements in surgi- that sex reassignment surgery is the most appro- cal techniques advanced considerably thereafter, priate treatment to alleviate the suffering of resulting in shortened hospital stays and improved extremely gender dysphoric individuals still post-operative care. stands: Ninety-six percent of the persons who The literature regarding regret after surgery underwent surgery were satisfi ed and regret was has remained remarkably consistent over time. rare” [12 ]. Few people regret undergoing affi rmation sur- Patient satisfaction is an important measure of gery. Among those who report remorse, poor sur- effective treatment. Studies have shown that by gical outcomes are a major factor in their relieving the suffering caused by severe gender dissatisfaction. In fact, quality of surgical results dysphoria, virtually every aspect of a patient’s appears to be one of the best predictors of overall life improves. This includes enhanced interper- satisfaction with affi rmation surgery and post- sonal relationships and improved social function- operative adjustment [30 ]. ing [13 – 17 ], improvement in self-image and body-image [17 , 18 ], better integration into the family [19 ], and improvement in initiating and WPATH Standards of Care sustaining intimate relationships [13 , 17 , 19 –25 ]. The fi rst Standards of Care (SOC) for the treat- A second criterion mandates that a surgical ment of gender dysphoria were published in procedure must not be experimental or investiga- 1979. At that time, the few professionals who tional. Surgery for gender dysphoria is not offered care to the transgender population formed experimental. Such surgeries have been per- the Harry Benjamin International Gender formed for decades, and are endorsed by the Dysphoria Association, named for the endocri- American Medical Association, the Endocrine nologist who identifi ed the condition. Concerned Society, the American Psychological Association for the safety of patients compelled to pursue and other professional bodies. Resolution 122 illicit or unsafe treatments, members drafted the (A-08) of the American Medical Association fi rst Standards of Care. Revised in 1980, 1981, states that experts have “rejected the myth that 1990, 1998, 2001, and 2011, the frequent itera- these treatments are ‘cosmetic’ or ‘experimen- tions refl ected the rapid acceleration of scientifi c tal’ and have recognized that these treatments knowledge, the refi nement of medical protocols, provide safe and effective treatment for a serious and the evolution in techno-cultural environ- health condition” [ 26 ]. ments. Even the name of the organization was Finally, a surgical procedure must be safe. changed to World Professional Association for Although there is an element of risk in any proce- Transgender Health (WPATH), to acknowledge dure, the benefi t must outweigh the risk. the diversity of gender identities and to reject a Complications that arise from surgery must be pathologizing ethos. relatively few and easily managed. The WPATH Standards of Care are explicit in Gender affi rming surgery satisfi es this condi- promulgating the necessary and suffi cient criteria tion. The rate of complications occurring during that must be met for surgical interventions: 20 Surgical Treatments for the Transgender Population 367

Criteria for Surgeries • Age of majority in a given country; • If signiﬁ cant medical or mental health con- Criteria for Breast/Chest Surgery (One cerns are present, they must be reasonably Referral Required) well controlled. • 12 continuous months of hormone therapy as Criteria for Mastectomy and Creation of a appropriate to the patient’s gender goals Male Chest in FTM Patients (unless hormones are not clinically indicated • Persistent, well-documented gender dysphoria; for the individual). • Capacity to make a fully informed decision and to consent for treatment; The aim of hormone therapy prior to gonad- • Age of majority in a given country (if younger, ectomy is primarily to introduce a period of follow the SOC for children and adolescents); reversible estrogen or testosterone suppression, • If signiﬁ cant medical or mental health con- before the patient undergoes irreversible surgical cerns are present, they must be reasonably intervention. well controlled. These criteria do not apply to patients who are having these procedures for medical indications Hormone therapy is not a prerequisite. other than gender dysphoria.

Criteria for Breast Augmentation (Implants/ Criteria for Metoidoplasty or Phalloplasty in Lipofi lling in MTF Patients) FTM Patients and Vaginoplasty in MTF • Persistent, well-documented gender Patients dysphoria; • Persistent, well-documented gender • Capacity to make a fully informed decision dysphoria; and to consent to treatment; • Capacity to make a fully informed decision • Age of majority in a given country (if younger, and to consent to treatment; follow the SOC for children and adoclescents); • Age of majority in a given country; • If signifi cant medical or mental health con- • If signifi cant medical or mental health concerns are present, they must be reasonably cerns are present, they must be reasonably well controlled. well controlled. • 12 continuous months of hormone therapy as Although not an explicit criterion, it is recom- appropriate to the patient’s gender goals mended that MTF patients undergo feminizing (unless hormones are not clinically indicated hormone therapy (minimum 12 months) prior to for the individual). breast augmentation surgery. The purpose is to • 12 continuous months of living in a gender role maximize breast growth in order to obtain better that is congruent with their gender identity. surgical (aesthetic) results. Although not an explicit criterion, it is recom- Criteria for Genital Surgery (Two Referrals) mended that these patients also have regular vis- The criteria for genital surgery are specifi c to the its with a mental health or other medical type of surgery being requested. professional [31 ].

Criteria for Hysterectomy and Salpingo- Oophorectomy in FTM Patients and for Orchiectomy in MTF Patients Helpful Hint • Persistent, well-documented gender dysphoria; Facial feminizing procedures and liposuc- • Capacity to make a fully informed decision tion do not require letters from providers and to consent to treatment; 368 R. Ettner

Surgery for the Male-to-Female Variations of Borou’s inversion technique are still Patient in use today [2 ]. Due to the infl uence of Harry Benjamin, and A History of MTF Genital Surgery his seminal work The Transsexual Phenomenon , and despite intense pressure, Johns Hopkins In the 1950s, surgeries for congenital aplasia and Clinic began to perform reassignment surgery, other genital anomalies were successfully exe- soon to be followed by Stanford and Chicago cuted, and reported in the literature. Such surgeries County Hospitals [4 ]. The Hopkins surgeons ini- provided a template for the fi rst attempts to create a tially used partial skin grafts to line the neovagi- vagina in MTF patients. The few surgeons who nal cavity, but later utilized penile skin, applied as attempted the procedure did so in two stages. First, a full thickness graft. Ultimately, they employed a the male organs were removed. After a lengthy variation of Borou’s method, whereby the posteri- convalescence, the second stage was performed, orly pedicled penile skin was used to form the lin- where skin from the buttocks or thighs was har- ing. The Chicago group utilized the anteriorly vested and grafted to construct a neovagina [2 ]. pedicled fl ap to line the neovagina [2 ]. The publicity storm created by the Jorgensen While the techniques varied in these early sur- case caused thousands of individuals to request geries, the goal of surgery did not. The aim was, these surgeries. Ms. Jorgensen received an ava- and is, to create a perineum and genitalia that are lanche of letters from individuals pleading for normal in appearance and function. The surgeon help and information. Having undergone surgery must modify the urethra so that the urinary stream in Denmark, European doctors were besieged is appropriately directed, create a neovagina of with requests for the procedure [4 ]. The thorny suffi cient depth to allow for sexual intercourse, legal issues, and uncertainty regarding diagnostic and preserve sensation. criteria, caused surgeons to eschew the procedure. The deluge of mail became onerous, and created a problem for the Danish government: Modern Surgical Techniques The doctors who converted the sex of ex-GI George Jorgensen to Christine Jorgensen have Vaginoplasty done four more such operations, the last within the Creation of the neovagina ideally involves pro- year. Two men were in their forties. One was mar- ducing a lining that is moist, hairless and fl exible. ried. All were Danish. The Danish government will no longer permit surgery of foreigners. The There are fi ve different techniques used to attain wide-spread publicity given the Christine case is this result: responsible for the decision. Since the Christine operation, the doctors have received about 2,000 • Non-genital skin grafts : Skin is harvested letters from all over the world. About twenty-fi ve per cent have come from the U.S. from individuals from the abdomen and used as a full-thickness with assorted sex problems [ 32 ]. skin graft. This allows for ample depth and width and does not introduce the problem of As a recourse, people in need of surgery hair within the neovagina. The scarring at the fl ocked to Casablanca to enlist the services of Dr. donor site however, is a drawback to this tech- Georges Burou, a French gynecologist. Borou nique, as is the absence of lubrication and became renowned for operating on several diminished sensation. famous Parisian female impersonators. In 1973, • Penile skin graft : This technique has several after having performed 3000 reassignment sur- advantages. The skin is hairless, and there is no geries, he presented his novel technique to an obvious scarring at the donor site. There is less audience at Stanford University Medical School. shrinkage of the skin, when compared to non- Borou is credited with inventing the anteriorly genital grafts. However, grafts have a greater pedicled penile skin fl ap inversion technique: tendency to shrink than fl aps, and this neces- With proper dissection of the penile skin, a sus- sitates persistent dilation post-operatively to tainable graft is constructed to line the neovagina. keep the neovagina patent. 20 Surgical Treatments for the Transgender Population 369

• Penile-scrotal skin fl aps : Currently, variations Vulvoplasty of this technique are employed routinely by In the early era of affi rmation surgery, the pri- most surgeons, and considered to be the “gold mary focus was on construction of a neovagina. standard.” There are distinct advantages to using As surgical acumen advanced, patients and sur- penile skin fl aps. They tend to contract less than geons sought refi nements in the aesthetics of the grafts—although dilation is still necessary— labia complex and clitoris. When the common and they are hairless. Additionally, sensation is inversion technique is employed, labia majora maintained through innervation. The disadvan- are formed from the resected scrotal skin. tage is that there may be an inadequate amount Oftentimes, surgeons perform a “Zplasty” proof penile skin available. Therefore, scrotal skin cedure after the vaginoplasty—a simple proce- fl aps or grafts are also used which requires hair dure that excises tissue and creates the anterior removal prior to surgery. commissure covering the neoclitoris. Some sur- • Non-genital skin fl aps : Use of skin from the geons feel that this procedure is best performed thigh has been reported in the literature, but after the swelling and edema in the perineal only in cases of revision surgery due to a pre- complex have resolved. vious unsatisfactory vaginoplasty. While there Creation of a neoclitoris proved challenging to is less risk of skin contraction and a reduced surgeons, and high rates of clitoral necrosis—33 necessity of dilation, there are many draw- %—occurred when tissue of the glans of the backs to this approach. The procedure is tech- penis was utilized. Various grafts were tried in nically complex, and there is scarring at the the search for an alternative functional neoclito- donor site. The new skin obtained is bulky in ris. Presently, most surgeons use the dorsal por- comparison to genital skin fl aps. tion of the glans penis and the dorsal neurovascular • Pedicled intestinal transplant : The use of pedicle, but clitoroplasty and construction of cecum and sigmoid (colocolpopoiesis) trans- labia minora remain diffi cult structures to con- planted to line the neovagina was fi rst reported struct surgically [2 ] (see Fig. 20.2 ). in 1974. Laub employed this method routinely, and cited several advantages. For one, the length of the rectosigmoid provides ample Post-surgical Considerations depth and the texture of the tissue is similar to that of a natural vagina. This technique is the Patients are typically discharged 5–7 days after only one that allows for natural lubrication. surgery, and instructed on dilation schedules There are drawbacks to the technique, however, and care of the neovagina. Complications fol- which result from the invasion of another sys- lowing surgery can include infection or poor tem—the intestinal system—which include healing with unresolved swelling and/or bleed- bowel and colon complications as well as the ing. A potential complication of vaginoplasty is potential for damage to the fragile colonic a recto- vaginal fi stula, as the wall of the rectum mucosa that forms the lining of the neovagina. is thin and easily perforated during surgery. If Most surgeons concur that this technique is best this occurs, it requires surgical closure, and usu- utilized as a revision procedure when repairing ally heals well. a failed vaginoplasty [2 ] (see Fig. 20.1a–c ). Breast Augmentation Many patients request breast augmentation when Helpful Hint feminizing hormones fail to produce suffi cient or The penile-scrotal skin fl ap technique is desired development. Anatomical differences in most frequently employed. In the case of a the natal male and natal female breast tissue and failed vaginoplasty, the rectosigmoid pro- chest wall necessitates a somewhat different cedure is used to repair the vagina. approach in MTF patients than that used in natal females seeking augmentation. 370 R. Ettner

Fig. 20.1 ( a – c) Patients after undergoing vaginoplasty. Photographs by Loren S. Schechter, MD, FACS. Used with permission

Fig. 20.3 MTF patient after breast augmentation surgery. Photographs by Loren S. Schechter, MD, FACS. Used with permission

cage. This allows the prosthesis to be covered with more tissue and reduces the risk of capsular contraction [2 ]. Complications from this surgery are the same as for any surgical procedure: infection, poor wound healing, and/or bleeding. The augmenta- Fig. 20.2 Patient after undergoing vaginoplasty, demon- tion mammoplasty is frequently performed at the strating clitoris. Photographs by Loren S. Schechter, MD, same time as genital surgery (see Fig. 20.3 ). FACS. Used with permission

Typically, natal males have a stronger pectoral Other Feminizing Surgeries facia and pectoralis muscle, and a smaller nipple and areola. Therefore, a periareolar incision is Facial Surgery not the best choice, due to the smaller size of the Gender presentation is non-verbally communi- areola. A pocket for the prosthesis is usually cre- cated largely via visual cues. The face and body ated behind the glandular tissue or behind the habitus convey information that is intuitively and pectoralis muscle. Surgeons can choose between unconsciously processed. In the absence of cog- saline and silicone gel prostheses. Many surgeons nitively conﬂ icting evidence, a decision regard- implant the prosthesis in a retropectoral position, ing a stranger’s gender binary designation—male after detaching the muscle from the thoracic or female—is reached instantaneously. 20 Surgical Treatments for the Transgender Population 371

Facial features and proportions are intimately Nose connected with identity. For gender dysphoric There is tremendous variation in nose shape and individuals nothing is more important than size amongst individuals. However, natal females looking in the mirror and seeing a congruent tend to have less nasal prominence. Rhinoplasty refl ection. can reduce the size and improve the contour of One patient with severe gender dysphoria felt the nose. There are, of course, limitations as to that a transition was impossible because her nose the amount of reduction that is surgically possi- was “so big and manly.” No feminizing pro- ble, but an alteration of contour alone can result cess—not genital surgery or hormones—elimi- in a feminizing effect. nated the dysphoria she experienced. In this case, rhinoplasty was the most important and the most Chin therapeutic procedure performed. The chin is a feature that does differ between Although there are quantitative analyses of natal male and natal female. Natal female chins the differences in measurements between natal tend to be pointier, narrower and shorter (verti- male and natal female faces and skulls—such as cally) than those in natal males. Modifi cations to facial height—there is no agreement regarding the chin can truly feminize the lower face and can these indices, and ethnic variations make gener- range from the relatively simple insertion of an alizations meaningless. Nevertheless, certain implant to more complex bone cutting and repo- aspects of the face are reliably perceived as sitioning [2 ]. being either “male” or “female,” and this consensual validation guides surgeons performing J a w facial feminizing procedures . For more details, The natal male jaw is typically more angular than see Chap. 21 : Otolaryngology for the Trans- that of a natal female. This is due to a larger and gender Population. thicker masseter muscle. The masseter muscle can be reduced through the mouth, eliminating Forehead external excisions. The bone can also be reduced, The forehead is a feature that tends to differ in which softens the angle of the mandible [2 ]. several aspects between natal male and natal female. Natal males have brow bossing, a promi- Hair Transplantation nent forehead with an arch, while natal females Natal male pattern scalp recession or balding van- tend to have skulls that are convex, in all planes. quishes an attempt to appear natal female. Scalp Surgical alterations to the forehead can include advancement or hair transplantation can be suc- bone contouring, complex alterations of the fron- cessful in achieving a natal female hair pattern. tal sinus, forehead lift to position the brows Plugs and micrografts have been used to fi ll in higher, and/or scalp advancement to reduce the areas, and in some cases scalp reductions have distance from the brows to the hairline. When the been useful. Totally or extensively bald individu- forehead is surgically altered it can produce a als usually rely on a hairpiece. dramatic feminizing effect [2 ]. Adam’s Apple Reduction and Voice Cheeks Surgery Cheeks , in and of themselves, do not differ sig- Several surgical techniques have been reported nifi cantly in shape or prominence between natal that raise vocal pitch. In general, these proce- male and natal female. However, prominent dures shorten the vocal cords and increase vocal cheeks are universally viewed as attractive, and cord tension. While few patients undergo these can impart a feminine dimension to the face. procedures, in some cases natal male voice qual- Surgeons often use implants or other fi llers to ity can cause psychological distress and disman- provide volume in this area. In some cases, bone tle an otherwise successful gender transition as in repositioning is performed. the following example: 372 R. Ettner

Anita was a transwoman who, after several years of This is a tall order for the surgeon and it hormonal therapy, underwent surgical reassign- explains why so many variations of phalloplasty ment. Although she was attractive and pleased with her appearance, she was disturbed by her deep, have been attempted throughout the last 30 years. “obviously male” voice, which she felt “outed” her. In 1936, Bogoras performed the fi rst penile Ultimately, Anita stopped speaking when she was reconstruction using a tubed abdominal fl ap. in public. If she were in a store, for example, she Subsequent attempts involved complex, multi- would get panicky, fearing that a clerk might ask her a question. She avoided her neighbors, not stage surgeries. As surgical techniques improved, wanting to greet them verbally. She stated that the particularly reconstructive and plastic surgery sound of her voice made her “feel sick.” techniques, many refi nements evolved, includ- In cases such as this, patients may be very ing the use of microsurgery. Such improve- pleased with the results of voice surgery, particu- ments allowed for the use of distant fl aps and larly if they have already tried speech therapy [33 ]. the joining of nerves from the donor site to The reduction of the prominent thyroid carti- nerves in the perineum. While many different lage is a relatively simple surgical procedure: fl aps have been attempted and described in the The cartilage is exposed and resected. This can literature, the radial forearm fl ap is most fre- yield a great benefi t as it eliminates the need to quently employed [9 ]. “hide” this feature with clothing that covers the neck. In patients who do undergo surgical vocal Radial Forearm Flap in Phalloplasty procedures, a chrondrolarygnoplasty can be per- In this technique, the patient has previously formed at the same time [2 ]. undergone hysterectomy and bilateral salpino- oophrectomy. After a minimum of 6 months, the genital reconstruction can be performed. Most often two surgical teams operate simultaneously. Surgery for the Female-to-Male A urologist performs the vaginectomy and Patient lengthening of the urethra. After removal of the mucosal lining of the vaginal cavity, the pelvic History of FTM Genital Surgery fl oor is reconstructed to prevent rectocele—her- niation of the rectum into the vagina. The labia Creating tissue and structures is much harder than majora are then reconstructed into scrotum [9 ]. removing them, which is the case with phalloplasty. The plastic surgeon is simultaneously creating This also explains why there are no documented a fl ap from vascularized forearm tissue. The fl ap surgeries to reduce gender dysphoria in FTM is tubed, thus creating a phallus, and a small skin patients prior to the twentieth century. In 1957, fl ap and graft are used to create a corona and Gillies reported the fi rst use of a penile reconstruc- glans of the neophallus. The hollow tubular fl ap tive technique in a transsexual patient [34 ]. is transferred to the groin area for the coalescence of blood vessels, and a vein graft is used to connect arteries [9 ]. Modern Surgical Techniques As one can imagine, the forearm is severely disfi gured and must be repaired, usually with Phalloplasty grafts harvested from the inner thigh. Post- The surgeon who performs phalloplasty for the operatively, patients remain in bed for 1 week, FTM patient aims to reconstruct an authentic- after which a catheter is removed. The average appearing and sensate neophallus. The patient hospital stay for phalloplasty is usually two and a must be able to urinate in a standing position and half weeks. Tattooing, insertion of testicular to have sexual intercourse. The scrotum should prostheses, and penile erection prosthesis require be reconstructed, and the procedure should be an additional surgery. This can only be performed performed with minimal scarring or destruction after the top of the penis regains sensation, which at the donor site. usually requires at least 1 year [9 ]. 20 Surgical Treatments for the Transgender Population 373

Other techniques for penile creation have been will not be possible. There is the advantage that reported, e.g. a thigh fl ap, and none are perfect. there is no visible scarring on other areas of the There are several advantages of the forearm tech- body, and it is possible to perform phalloplasty at nique, however: For one, the skin is pliable and a late time if the patient so desires. Complications allows for a tube within a tube to be constructed from metoidoplasty most commonly involve the (the urethra within the penis). Additionally, the urethra, and can include fi stula or urethral skin on the innermost aspect is hairless and can obstruction [9 ]. be used to line the urethra, and fi nally, the fl ap is well-vascularized, which aids in tactile sensation. The Future of FTM Genital Surgery Monstrey et al reports that all patients undergo- The transfer of tissue from one body area to ing phalloplasty with a radial forearm fl ap are another, and the problems inherent in such trans- able—ultimately—to urinate standing. This has fer, is the major surgical obstacle in reconstruct- not been the case when other techniques have ing an aesthetic and functional male urogenital been used. A disadvantage of the radial forearm complex. Improvements in phalloplasty will fl ap is that the fl ap can shrink over time [ 9 ]. likely come from innovations in tissue transfer from adjacent and distant donor areas to the Complications groin. The use of perforator fl aps promises to be Fistulas and strictures and not uncommon com- an important advancement [9 ]. plications in the genito-urinary tract after phallo- Perforator fl aps, so named because they are plasty, and may require surgical repair. In addition based on vessels that perforate or traverse a mus- to the usual complications that occur with any cle, allow for a longer vascular pedicle for dissec- surgery, such as infection, vaginectomy is a dif- tion. Perforators are composed of skin, fatty fi cult procedure with a high risk of excessive tissue, and tiny blood vessels. Unlike the fl aps bleeding. Other potential complications occur as typically used in reconstructive surgery, they pre- a result of vascular compromise of the fl ap and serve the underlying musculature [35 ]. can cause arterial and/or venous thrombosis. Use of a perforator fl ap in phalloplasty would Occasionally, there is a loss of skin or partial diminish the scarring, possible disfi gurement and necrosis of the fl ap [9 ]. As smoking increases this morbidity at the donor site—typically the radial risk, most surgeons will not perform phalloplasty forearm—and has the potential to dramatically on patients who do not quit smoking a year prior reduce recovery time and complications. The to genital surgery. most promising perforator would be the antero- lateral thigh. The thickness of this fl ap, however, Metoidoplasty makes it unsuitable for creating the tube within a Phalloplasty is a complex, lengthy and costly sur- tube—the urethra. If a solution to the problem of gery, and complications occur fairly often. vascularizing the urethra can be found, the perfo- Therefore, many patients opt for an alternative rator fl ap would likely become the method of genital surgery that is less extensive and less choice for phalloplasty [9 , 35 ]. expensive. As a result of testosterone, the clitoris enlarges allowing this structure to be recon- Subcutaneous Mastectomy structed into a phallus. In metoidoplasty, the cli- For transmen, genital surgery is typically not the toral hood is lifted and the clitoris is detached fi rst, or even the most important gender- from the pubic bone, causing the clitoris to confi rming surgical procedure they undergo. extend. The urethra is extended, and scrotum are Subcutaneous mastectomy is the surgical inter- reconstructed from a fl ap of the labia majora. vention that allows one to live safely and com- Some surgeons perform vaginectomy during fortably as a male, without the telltale breasts that metoidoplasty. are anathema. This procedure will usually allow an individ- In the FTM patient, removal of the breasts is ual to void while standing, but sexual intercourse desired, but so is the creation of a male-contoured 374 R. Ettner

Fig. 20.4 ( a ) FTM patient before chest surgery. (b ) FTM patient after chest surgery. Photographs by Loren S. Schechter, MD, FACS. Used with permission

chest. Therefore, the surgical procedure image and therefore the surgeon’s experience in employed differs from mastectomy in the case performing this complex surgery cannot be mini- of disease. The goal of this surgery in reassign- mized (see Fig. 20.4a, b ). ment is to remove breast tissue and excess skin, reduce the size of the nipple, ensure proper placement of the aerola, release the inframam- Collaborative Care mary fold, and accomplish all with a minimum of scarring [9 ]. Long-term follow-up is essential for patients who Various techniques are used to perform subcu- undergo gender afﬁ rming surgeries. For patients taneous mastectomy, and there is no consensus who undergo phalloplasty, a urologist will ﬁ gure on which technique produces the best outcome. largely in the ongoing care plan. The complexity Four factors are considered relevant in determin- of creating a urethra in the bladder of these ing the most appropriate surgical technique. patients demands vigilance over time, as urina- These are: breast volume, degree of excess skin, tion through this tube can lead to future compli- size and position of the nipple-areola complex, cations [9 ]. and skin elasticity. Some cases may require a free The surgeon is a vital member of the multidis- nipple graft, where the breasts are removed and ciplinary team that provides care to the transgen- the nipple-areola complex is grafted onto the der population and brings essential technical chest wall [9 ]. expertise to the treatment. Hopefully, the surgeon Complications that can occur with subcutane- also brings an abiding respect and deep under- ous mastectomy include the formation of standing of the condition of gender dysphoria. abscesses and necrosis of the nipple. Some The emotional status of the patient, before, dur- patients require a second surgery to improve the ing, and after surgery is an important determinant aesthetic outcome. Skin elasticity may be the of the ultimate outcome. For this reason, it may most important factor in attaining a good out- be as important to consult and collaborate with come and is often sub-optimal due to prolonged the mental health professional as it is to work breast binding [9 ]. The importance of a good aes- with the urologist, gynecologist and other surgi- thetic outcome is vital to an individual’s body cal specialists. 20 Surgical Treatments for the Transgender Population 375

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Scott R. Chaiet

these procedures are familiar to the facial plastic Learning Objectives surgeon. Most are commonly performed throughout the United States on cisgender patients. Other • Understand the range of surgical procedures procedures to manipulate the shape of thyroid car- available for facial feminization surgery (PC3) tilage, a tracheal shave procedure, may require • Describe facial analysis and key differences specialized experience. This chapter will present a between the biologic male and female facial wide variety of procedures performed today in structure (PC3) facial feminization surgery, outline an approach to • Review the best practices in surgical tech- facial analysis of a biologic male patient seeking niques for facial feminization surgery (PC3) surgical consultation for feminization, and describe technical pearls of wisdom found in the literature. Before embarking on surgical alteration of the Introduction face, many transgender patients have initiated hormone therapy. The effects of hormonal sup- Facial Feminization Surgery plementation with estrogen complement the surgical process of feminization by reducing facial Facial plastic and reconstructive surgical proce- hair, altering fat distribution, and changing skin dures performed on the male to female transgender appearance and texture [ 1] Estrogen also sup- patient have been grouped together in a relatively presses testosterone, reducing the rate of growth new fi eld called facial feminization surgery. of male-pattern hair [2 ]. As stated elsewhere in Popularized by anthropologic descriptions of this book, any surgical therapy on the male to Douglas Ousterhout in the 1980s and his more female transgender patient should be performed recent patient book, Facial Feminization Surgery: in conjunction with a team of treatment profes- A Guide for the Transgendered Woman, many of sionals for mental and medical health. Facial feminization surgery is an important step for many in the transgender community, and S. R. Chaiet , M.D., M.B.A. (*) research demonstrates the signifi cant quality of life Division of Otolaryngology – Head and Neck impact. Patients score statistically higher on physi- Surgery, Department of Surgery , University of cal, mental, and social functioning outcome scales Wisconsin School of Medicine and Public Health , following facial feminization surgery compared to 600 Highland Avenue , Madison , WI 53792-7375 , USA those without surgery, a fi nding also applicable to e-mail: [email protected] genital reassignment surgery [3 ]. Surgical care can

© Springer International Publishing Switzerland 2016 377 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_21 378 S.R. Chaiet signifi cantly aid in the transition from male to patient preference is the fi rst priority, but research female and may be complemented with non-surgi- by Jeffrey Spiegel, MD, FACS provides further cal interventions. For example, speech therapy information. To determine which aspects of the alters voicing style where surgery raises the funda- face are most associated with femininity, he femi- mental pitch. Data presented later in this chapter nized frontal and lateral photographs of biologic shows the importance of these auditory alterations men in either the forehead, midface (nasal and lip congruent with feminine recognition. modifi cations), or the jaw, digitally stimulating Like other facial plastic surgery, proper pre- procedures discussed in this chapter. 100 adult operative patient counseling is imperative for research participants viewed 30 sets of three fron- successful outcomes including the management tal photographs and 30 sets of three lateral photo- of expectations. Informed consent includes a graphs and ranked which alteration made to three discussion of risks, benefi ts, and alternates to the photographs—forehead, midface, or jaw— procedure and also reasonable expectations of resulted in the most feminine result. In both views, outcomes. The transgender patient, however, may forehead modifi cation was selected in all sets for present with specifi c goals and photographs of a the most stereotypically feminine appearance. desired result, travel long distances for expert Spiegel also showed research participants hori- care, post photographs of the operative process in zontal thirds of the face of real photographs of public forums such as the internet, and share the biologic male patients, biologic female patients, experience with others in the transgender commu- and post-operative transgender facial feminiza- nity [4 ]. While these challenges should not deter a tion patients. Transgender patients who under- facial plastic surgeon from providing this care, went surgery were identifi ed as women in 82 %, careful thought and a mutual understand of expec- 87 %, and 85 % of upper, mid, and lower facial tations throughout the surgical process will result photographs. Spiegel’s landmark research showed in a more meaningful experience. that facial feminization procedures can result in recognition as a women 6 out of 7 times, and demonstrated the upper third of the face as a major Key Points determinant of femininity [5 ]. By no accident, this • Hormone therapy and mental health chapter discusses the face in a “top down” manner care complement surgical therapy of the beginning with the upper face, proceeding to the male to female transgender patient. midface and then the lower face and neck. Patients who undergo facial feminiza- Although each facial subunit will be discussed tion surgery score statistically higher on in isolation, any procedure should maintain aes- physical, mental, and social functioning thetic facial proportions to other areas of the face. outcome scales following surgery com- As a patient and physician embark on facial pared to those without surgery. feminization procedures over few or many opera- • Proper pre-operative patient counseling tions, maintaining facial proportions should and management of expectations are guide the sequence of events [6 ] . imperative for successful outcomes for all facial plastic procedures including facial feminization surgery. Key Points • Research by Jeffrey Spiegel, MD, FACS showed forehead modifi cation results in Recognition of Femininity the highest recognition of a stereotypically feminine appearance, more than It may be overwhelming for the patient, surgeon, changes to the middle or lower one or both to embark on facial feminization surgery thirds of the face. of the entire face. Where should the surgical pro- • Spiegel also demonstrated facial femini- cess begin for a male to female transgender patient zation surgical procedures result in fem- to create the most female appearance? Of course inine recognition. 21 Facial Feminization Surgery: Review of Facial Analysis and Surgical Procedures 379

Facial Analysis Although there may be confl icting “normal” values since ethnic and racial variations are not Overview represented, Powell and Humphreys provide a foundation for objective facial analysis [ 7 ]. Facial analysis of the male to female transgender It should be noted that this chapter will describe patient interested in facial feminization surgery facial characteristics typical for each “gender” can be challenging, but the initial consultation is with reference to biologic sex. not dissimilar to other facial plastic surgery evaluations. Some patients will present with specifi c goals in mind for a segment or for the entire face, where others may express a general disliking of Key Points facial traits. After the initial history taking and • Facial analysis of the male to female discussion of goals, the next step in a thorough transgender patient is similar to other facial plastic surgery consultation is facial analy- facial plastic surgery evaluations and sis, complemented by high quality imaging. includes high quality photography. Photographs should include the frontal view, • Many normal values of measurements right and left lateral views with the head in the of the biologic male and female face are Frankfort horizontal plane (a line drawn from the based off work by Powell and upper border of tragus to the infraorbital rim is Humphreys in the 1980s. parallel to the ground), right and left three quarter views, and the base view. The literature contains many “normal” values of facial angles, proportions, widths and heights Overview of Facial Analysis for each gender. The origin of many are from work by Powell and Humphreys in 1984 [7 ]. The The face is traditionally divided into fi ve equal authors provide an overview of the differences vertical segments and three equal horizontal between a biologic male and female face: segments , the “vertical fi fths” and “horizontal The male’s bone structure is sterner, bolder and thirds” (Fig. 21.1 ). The vertical segments are more prominent. The dominance of the forehead, aligned with the medal and lateral canthi (cor- nose, and chin is more striking than the females. ners of the eyelid opening) and the outer heli- The zygoma and mandible produce much stronger cal rims so that each fi fth is equal to the width contours in the male as opposed to the female face. ab c

1/3 1/2 1/3 1/2

1/3 FH 1/3 1/4 1/2 1/3 1/2 1/3 1/3 1/3 1/4 2/3 2/3

Mid sagittal line

Fig. 21.1 Facial analysis with “vertical fi fths” (a ); “hori- line marked through the upper border of the tragus and zontal thirds” and further division of the lower face show- infraorbital rim ( c). With kind permission from Springer ing upper and lower lip relationship ( b ); lateral view of Science + Business Media: Morgan and Haug [8 ] horizontal thirds in Frankfort horizontal (FH) plane with 380 S.R. Chaiet of one eye. Practically, the vertical fi fths analysis is used as a starting point to measure the Key Points width of the base of the nose, identify asym- • Facial analysis using the “vertical fi fths” metry or variations within a face, and less for and “horizontal thirds” provide a start- facial feminization surgery. ing point to identify symmetry and Landmarks for the horizontal thirds are the facial proportions. trichion (hairline), glabella (forehead promi- • The upper third of the face contains many nence between the brows), subnasale, and men- key landmarks in facial feminization sur- ton (chin) [ 8]. Immediately, the relationship of gery such as hairline location, eyebrow the hairline to facial aesthetic balance is evident, position, and forehead projection. particularly in the male to female transgender • Multiple methods exist for lower facial patient. The biologic male hairline is commonly analysis to describe the relationship of higher [8 ]; there may also be male pattern bald- the upper and lower lips with the chin, ness or a receding hairline, creating an elongated but anterior chin projection should be upper third of the face. Analysis of the upper face less in the female chin. may also generate discussion of a prominent glabella and prominent supraorbital ridges, often called frontal bossing, seen on the biologic male Facial Units forehead. The eyebrow position should be carefully examined by palpation, as the biologic male Moving to the central face, nasal analysis is par- eyebrow rests below the bony supraorbital rim ticularly important when considering differences where the biologic female brow should lay at or between biologic males and females. The nasola- above it. Hairline and brow position are inti- bial angle on lateral view is formed between lines mately related in facial appearance and surgery along the nasal columella and the upper lip. The can address both simultaneously. angle defi nes nasal tip rotation and has been The lower horizontal third can be further reported as 90°–95° in biologic men and slightly divided into horizontal segments to analyze the more obtuse, 95°–110°, in biologic females [ 10 ]. ratio of the upper lip to lower lip and chin, ideally In other words, the stereotypical feminine nasal one third to two thirds. An long vertical chin tip looks turned slightly upwards. The width of height is common in the biologic male jaw, often the lower nose, the alar base, should align with accompanied by upper lip defl ation and elonga- the vertical fi fths, although may be wider in a tion seen with aging. non-Caucasian nose. A second method for lower facial analysis mea- Regarding the upper half of the nose, the male sures lips and chin projection and their harmony appearing nasal dorsum is stereotypically straight with the face. Although many chin measurements where the female dorsum has a slight concavity are reported in the literature, the Gonzalez-Ulloa when viewed from the side. The biologic female method is often cited where a tangential line nasofrontal angle measured between the nasal dor- extends downward in the lateral view from the sum and forehead is also more obtuse [11 , 12 ]. nasion (soft tissue depression above nose) perpen- Cisgender female patients seek facial plastic sur- dicular to the Frankfort horizontal plane. This line gery to reduce a dorsal convexity, a hump, to should transect the anterior soft tissue prominence achieve a feminine nasal appearance. Hump reduc- of chin (pogonion) and may indicate over- or tion is often performed in conjunction with nasal under-projection of the chin [ 9 ]. Alternately a line tip surgery to create an asthetically balanced nose, can be extended downward through the red-white called reductive rhinoplasty. Other nasal angles are vermillion lip borders of the upper and lower lips; defi ned in facial plastic surgery textbooks, but dis- anterior chin projection should rest behind this cussion of the tip and nasal dorsum will provide a line in a biologic female chin where the biologic foundation for nasal analysis and rhinoplasty sur- male chin may be at the line, or farther anterior. gery for the male to female transgender patient. 21 Facial Feminization Surgery: Review of Facial Analysis and Surgical Procedures 381

Finally, lower facial and neck analysis is made in a similar fashion to the “aging face” consultation, with careful attention to jowls, tissue laxity, neck fullness and neck skin redundancy. One aspect of the lower face unique to facial feminization surgery is the underlying bone structure of Sn the jaw, particularly the prominence of the mandibular angles as well as anterior chin shape. 35 mm Anthropologic studies show the chin is more pointed in a biologic female [12 ]. 22 mm Although there are no standard bone measurements, the angles of the mandible (posterior inferior corners of the jawbone) are wider and lower Pg creating a square shape in biologic males. Like jaw width, mid-face width is not a deﬁ ned variable but important for facial feminization analy- Fig. 21.2 sis. The biologic male zygomatic (cheek) bones Ideal lip projection from a vertical line between the upper lip junction with the nose and anterior chin. have more bulk, but lack the prominence and With kind permission from Springer Science + Business height of the biologic female face [1 ]. Frontal Media: Morgan and Haug [ 8 ] photography aids in the evaluation of facial width. Drawing in the lines of vertical ﬁ fths may help visualize the bone structure as it relates to the Facial Feminization Surgery face, and can aid in analysis of chin shape, jaw width, cheek width and contour of the mandible. Surgery of the Upper Face Finally, upper and lower lip projection can be and Hairline measured, provided that chin projection is in harmony with the face. Lip fullness is measured as Although the upper face may seem to have less the distance from each lip to a line from subna- interesting anatomy, it contains many key deter- sale (soft tissue depression under nose) to the minants for recognition of a stereotypically anterior chin prominence (Fig. 21.2 ) . feminine face [5 ]. The landmarks include hairline position, eyebrow location relative to the underlying bony supraorbital rims, forehead height between the hairline and brows, and Key Points prominence seen best from the lateral view. • The stereotypical female nose has an Browlifts are commonly performed in the slightly upturned tip, concave nasal dor- United States, with the American Society for sum, and may have a slightly smaller Aesthetic Plastic Surgery reporting nearly 30,000 shape. operations in 2013 [ 14]. The procedure can be • Lower facial and neck analysis looks at performed without addressing the hairline via an jowls, tissue laxity, neck fullness and upper eyelid blepharoplasty incision, minimally neck skin redundancy in a similar fash- invasive incisions hidden in the hairline, a long ion to the “aging face” consultation. coronal incision across the head 2–3 cm behind • The biologic male mandible is wider the hairline, or less commonly in deep furrows of with a square shape, where the zygo- the forehead. None of these approaches address matic (cheek) bones lack the prominence the distance between the hairline and brows, and height of the biologic female face. and may actually cause an unwanted elevation of the hairline. 382 S.R. Chaiet

Scalp advancement, or hairline lowering, can Forehead cranioplasty surgery can reduce be combined with a browlift by placing a tricho- supraorbital ridges and a prominent glabella, phytic incision along the hairline to approach referred to as frontal bossing. Results provide both procedures. Once the brow has been ele- excellent aesthetic change in facial feminization vated to a more feminized location, just above the surgery. The trichophytic incision and coronal bony supraorbital rims, excess non-hair bearing incisions both give surgical access for forehead forehead skin and soft tissue may be excised, reshaping (Fig. 21.3 ). with or without relaxing incisions in the galea Because of the close relationship of the fron- underneath the hair-bearing scalp for hairline tal sinuses under the frontal bone, multiple surgi- advancement. Careful attention to surgical tech- cal approaches have been described to reduce nique such as beveling the incision will improve complications. A forehead with a small promi- post-operative outcome; also, limited hair trans- nence and thick anterior table (frontal bone ante- planting can camoufl age the incision and improve rior to the frontal sinus) can be addressed with the aesthetic result along a new hairline [15 , 16 ]. burs to sculpt the forehead and orbital rims. The male to female transgender patient with Alternately, a traditional osteoplastic fl ap can be signifi cant receding hairline may forego scalp performed to remove the anterior table with an advancement all together. Depending on hair oscillating saw, re-shape the bone with burs and quality and abundance, hair transplantation can saws, and secured it back in place with mini- create a new hairline . Hormone therapy with spi- plates to newly contoured supraorbital rims [ 18 ]. ronolactone may complement surgical proce- With either approach, care must be taken to dures to diminish the male-pattern hair growth avoid injury to the supratrocheal sensory nerves [ 2]. However a hairpiece may be more practical (Fig. 21.4). and economical if limited donor hair exists. Spiegel reported a third method, also common The biologic female eyebrow shows a higher in Thailand, where the anterior table of the fron- peaked shape than the biologic male brow. The tal sinus is thinned with burrs and set back as position of the peak was historically described “islands” without mini-plating while preserving above the lateral limbus (lateral border of the iris), the underlying sinus mucosa. Due to complica- but modern studies have shown the ideal peak is tions of non-union and mobility of these frag- positioned above the lateral canthus [17 ]. During a ments, this method was abandoned. The other browlift, aesthetic contouring of the eyebrow can approaches to forehead cranioplasty resulted in be made by differential brow elevation medially no other complications in his series of 168 fore- and laterally to further feminize the upper face. head reductions [5 ].

Fig. 21.3 A prominent supraorbital ridge amenable to reduction for upper facial feminization (a ); a wide orbital rim can also be sculpted (b ). With kind permission from Springer Science + Business Media: Habal [13 ] 21 Facial Feminization Surgery: Review of Facial Analysis and Surgical Procedures 383

Fig. 21.4 View from top of head of an osteoplastic ﬂ ap of the frontal bone secured to newly contoured supraorbital rims with mini-plates after removal and shaping. With kind permission from Springer Science + Business Media: Cho and Jin [18 ]

Fig. 21.5 Pre-operative photographs of a male to female surgery including forehead cranioplasty and hydroxyapa- transgender patient with a prominent glabella ( a , c , e ); tite cement placement ( d , e , f). With kind permission from 15 month post-operative result after facial feminization Springer Science + Business Media: Hoenig [19 ]

As an adjunct to any of the three methods, Ousterhoust described contouring the forehead Key Points by ﬁ lling in the concavity above the recontoured • Scalp advancement can be added to a supraorbital rims with the bone ﬁ ller methyl browlift procedure using a trichophytic methacrylate [12 ]; today this has been largely incision along the hairline to reduce the replaced by hydroxyapatite cement due to rare height of the forehead. infections with the former material [19 ]. • Forehead cranioplasty surgery can reduce As noted throughout this chapter, surgical a prominent glabella and prominent supra- alteration of the forehead such as brow elevation, orbital ridges but must be performed with eyebrow shape change, forehead cranioplasty, care due to the underlying frontal sinuses and scalp advancement can produce a dramatic and nearby sensory nerve branches. feminizing effect (Fig. 21.5 ). 384 S.R. Chaiet

Nasal Surgery Surgery of the Midface

Rhinoplasty surgery can result in a dramatic Although the zygomas (cheekbones) have more change to facial appearance for the male to bulk in the biologic male face, they lack the female transgender patient. A full discussion of prominence to create the stereotypical feminine rhinoplasty surgery is beyond the scope of this appearance of “high cheekbones”. To contour the chapter, however there are three items notable for midface, alloplastic malar implants may be facial feminization surgery. The stereotypically placed through oral incisions above the upper female nasal dorsum displays a slight concavity teeth, through which the implant can be secured compared to the straight male dorsum and con- to the underlying bone. Osteotomies and ﬁ xation tains a supratip break. The nasofrontal angle is of the bone, or bone grafts were historically per- also wider at the junction of the nose and fore- formed to relocate the zygomas into more lateral head. Secondly, the nasal tip is slightly upturned positions but are less commonly performed today corresponding to a more obtuse nasolabial angle. [1 ]. Changes to the underlying facial structure After facial feminization rhinoplasty, a recent with bone or alloplastic implants will alter the study showed an increased in the nasofrontal topography of the overlying skin and soft tissue. angle from 141.6° to 150.5°; the nasolabial angle When lifting the soft tissue of the midface does increased from 107.4° to 115.2°; surgery also not provide enough contrast between the cheek- created a supratip break [11 ]. bones and the contour beneath, excision of buc- Lastly, nasal size should be congruent to the cal fat has been described to provide a sub-malar face. If a patient undergoes forehead reduction and concavity [16 ]. mandibular angle contouring, reductive rhinoplasty Alternately, non-surgical therapy such as techniques to the nasal dorsum and tip may be con- autologous fat or injectable ﬁ llers can help sidered to maintain an aesthetic balance and create achieve a similar feminizing change to the mid- a more petite nose. Surgical considerations include face, providing volume to the cheeks and lifting nasal bone osteotomies, tip bulk reduction with the malar soft tissue. Non-surgical procedures suture techniques and cephalic trim of the lower have seen large increases in popularity across the lateral cartilages, and alar base reduction. world in recent years due to the limited down Patients considering nasal changes in conjunc- time and healing. Whether by surgical or non- tion with facial feminization surgery should seek surgical means , prominent cheeks and a slight consultation with a facial plastic surgeon experi- hallowing of the sub-malar area under the cheek- enced in rhinoplasty to create a nose in harmony bones will result in the ideal feminine “heart- with the feminized face and simultaneously pre- shaped” face [16 , 20]. Chin shape alterations can serve nasal breathing function. complete the heart shape, and these will be discussed in the next section.

Key Points • Although a full discussion of rhinoplasty surgery is beyond the scope of this chapter, facial feminization surgery should address the tip, dorsum, and Key Points nasal size. • Cheek augmentation with implants, • The nasolabial and nasofrontal angles autologous fat or injectable ﬁ llers help are more obtuse on the stereotypically to create feminine high cheekbones. female nose. • The ideal female face is “heart-shaped” • A reductive rhinoplasty yields a smaller with prominent, wide cheekbones and nose in proportion to the feminized face. contrasting sub-malar concavities. 21 Facial Feminization Surgery: Review of Facial Analysis and Surgical Procedures 385

Surgery of the Lower Face Masseter muscle reduction, common also in and Mandible Asian biologic female patients, can lessen the wide appearance of the jaw. In addition to direct Depending on the age of the transgender patient, surgical excision, botulinum toxin (Botox) lower face and neck surgery can be quite similar injected into the masseter muscles results in mus- to aging face procedures for cisgender patients. cle inactivity for 3–4 months and can reduce Although rhytidectomy (facelift) is a common muscle bulk over time with repeated injections. procedure in the United States, the American Care is taken to inject posteriorly and inferiorly Society for Aesthetic Plastic Surgery reported in to prevent diffusion into muscles of facial expres- 2013 that only 10 % are performed on biologic sion such as the zygomatic smiling muscles [22 ]. males [14 ]. Surgical considerations specifi c to the The chin’s distinct box shape can be modifi ed biologic male rhytidectomy are incision place- in the male to female transgender patient to ment with regard to any remaining facial hair and achieve a pointier shape, to complete the ideal with regards to post-operative hematoma, thought feminine “heart-shaped” face. Genioplasty sur- to be higher due to increased skin vascularity [21 ]. gery can reposition bone pieces to create anterior A unique aspect of lower facial surgery in projection and simultaneously reduce vertical facial feminization is the underlying shape of the height; chin shape alterations may also be accom- mandible, particularly the prominence of the man- plished with an alloplastic implant. For both pro- dibular angles and the shape of the chin. As noted cedures, care must be taken to avoid injury to the earlier, there are no specifi c defi ned measurements mental sensory nerves exiting the mandible and jaw width but the biologic male lower face is to fi xate the implant/bone securely in place. If the wider. Volume of the masseter muscles overlying pre-operative teeth alignment shows overbite or the bone can further contribute to the width. underbite, referral to an oral surgeon is recom- Bone reduction softens the prominence of mended before surgery. both wide and square shaped mandibular angles . Lastly, alteration to lip volume may comple- An oral incision lateral and posterior to the denti- ment other facial feminization surgical proce- tion provides access to the angles of the mandi- dures. Usually hyaluronic acid, the fi ller provides ble. Once generous sub-periosteal dissection is volume to the lips and is easily performed in the made to retract and protect the soft tissue, bone offi ce setting with local anesthetic. Alternately, can be removed using high speed burrs or by dermal or fat grafts can add volume the lips. The osteotomies using saws and a curved osteotomes height of the upper red lip can be surgically lifted [ 16 ] (Fig. 21.6 ). with a cheiloplasty (lip lift) which simultaneously

Fig. 21.6 Reduction of a wide prominent mandible angle (a ); and resultant decrease in mandibular vertical height ( b ). With kind permission from Springer Science + Business Media: Habal [13 ] 386 S.R. Chaiet

familiar with the complex anatomy of the larynx Key Points can safely remove a prominent thyroid notch by • Reducing the width and square shape of avoiding violation of the middle and lower thirds the mandible will result in a more ste- of the thyroid cartilage through a small horizantal reotypical female appearance. incision in the anterior neck, commonly used for • Masseter muscle hypertrophy contributes other laryngeal procedures (Fig. 21.7 ). to lower facial width and can be reduced Conrad suggests an additional precaution of with Botox. placement of a Keith needle through the thyroid • Occlusion of the teeth should be care- cartilage into the laryngeal lumen, above the fully examined when considering genio- attachment of the vocal folds. Laryngoscopy con- plasty surgery to alter the appearance of fi rms its placement at 2 or 3 mm above the ante- the chin. rior commissure. Cartilage superior to the needle is safely removed and contoured with a scalpel or even saw, depending on the degree of cartilage shortens a long upper white lip, but this is generally ossifi cation. The endoscopic verifi cation with the performed with additional anesthetic. laryngoscope resulted in preservation of vocal function and maximal cartilage excision [23 ].

Other Procedures Key Points Thyroid Cartilage (Adam’s Apple) • Laryngchondroplasty or “tracheal shave” Alteration can reduce a prominent Adam’s apple. • Placing a needle through the thyroid The male to female transgender patient may desire cartilage into the laryngeal lumen and laryngchondroplasty or a “tracheal shave” to verifying its position above the vocal reduce a prominent thyroid cartilage (Adam’s fold attachment guides the surgeon to apple). The vocal folds are attached to the midpoint cartilage that can be safely reshaped. of the underside of the thyroid cartilage. Those

Fig. 21.7 Prominent thyroid cartilage (a ); and ﬂ attened, more feminine appearance after anterior tracheal shave (b ). With kind permission from Springer Science + Business Media: Habal [13 ] 21 Facial Feminization Surgery: Review of Facial Analysis and Surgical Procedures 387

Phonosurgery and Speech Therapy Key Points Male to female transgender patients may also • Vocal procedures or therapy can aid the seek surgery to change their voice, as biologic male to female transgender patient with females phonate in a higher fundamental fre- recognition of “femaleness”. quency. Auditory perception of a lower bio- • Phonosurgery alters the tension or mass logic male fundamental frequency has been of the vocal folds with the goal of raise shown to negatively effect perception. Auditory the pitch of voicing to above 155 Hz. recognition is so important, that observers • Speech therapy helps change the voic- rated “femaleness” the lowest when presented ing style and consultation is should be with an auditory only presentation of male to considered before any procedures to the female trangender patients, compared to a vocal folds. visual presentation or when observers saw combined presentations [24 ]. To combat the dichotomy between a feminized visual appearance and male phonation, Conclusion numerous phonosurgical procedures on the larynx have been reported to try and increase the Facial feminization surgery is an important part pitch of phonation above 155 Hz. Higher fun- of treatment for male to female transgender damental frequencies are produced by increas- patients. Alterations of the face help transgender ing tension or decreasing mass of the vocal patients achieve recognition as a woman, and can folds through procedures such as cricothyroid result in better physical, mental, and social func- approximation to lengthen the vocal folds, tioning outcomes following facial feminization scarring to increase stiffness, and vocal fold surgery compared to those without surgery. tissue reduction. A recent summary of phono- As in all facial plastic surgery, proper presurgical procedures to raise pitch noted signifi - operative counseling and a mutual understand of cant risks and disappointing outcomes [25 ]. Of expectations will result in a more meaningful note vocal fold elongation is a Type IV experience. Thyroplasty with Isshiki’s commonly used Patients and physicians interested in further classifi cation scheme; in contrast, the Type III reading on facial feminization surgery are Thyroplasty reduces the length of the vocal encouraged to read the excellent patient centered folds and decreases pitch for the female to male book by Douglas Ousterhout, Facial Feminization transgender patient [26 ]. Surgery: A Guide for the Transgendered Woman , Where surgical procedures to alter the voice and also review the peer reviewed literature cited have not shown impressive results, speech ther- in this chapter. apy is an important adjuvant to facial feminization surgery to change the voicing style. Confl icts of Interest and Sources of Funding None. Non-surgical therapy alone may be superior to phonosurgical procedure given disappointing outcomes that are seen throughout the literature References to raise the fundamental pitch. The transgender 1. Becking AG, Tuinzing DB, Hage JJ, Gooren patient should consult with a qualifi ed team of LJG. Transgender feminization of the facial skeleton. laryngologists and speech therapists for recom- Clin Plast Surg. 2007;34(3):557–64. mendations of voice alteration. 2. Spack NP. Management of transgenderism. JAMA. 2013;309(5):478–84. 388 S.R. Chaiet

3. Ainsworth T, Spiegel JH. Quality of life of individuals 15. Ramirez AL, Ende KH, Kabaker SS. Correction of the with and without facial feminization surgery or gen- high female hairline. Arch Facial Plast Surg. der reassignment surgery. Qual Life Res. 2011;11(2):84–90. 2010;19(7):1019–24. 16. Altman K. Facial feminization surgery: current state of 4. Spiegel JH. Challenges in care of the transgender the art. Int J Oral Maxillofac Surg. 2012;41(8): 885–94. patient seeking facial feminization surgery. Facial 17. Roth JM, Metzinger SE. Quantifying the arch position Plast Surg Clin North Am. 2008;16(2):233–8. of the female eyebrow. Arch Facial Plast Surg. 5. Spiegel JH. Facial determinants of female gender and 2003;5(3):235–9. feminizing forehead cranioplasty. Laryngoscope. 18. Cho S-W, Jin HR. Feminization of the forehead in a 2011;121(2):250–61. transgender: frontal sinus reshaping combined with 6. Ousterhout DK. Facial feminization surgery: a guide brow lift and hairline lowering. Aesthetic Plast Surg. for the transgendered woman. Omaha, Nebraska: 2012;36(5):1207–10. Addicus Books; 2009. 19. Hoenig JF. Frontal bone remodeling for gender reas- 7. Powell N, Humphreys B. Proportions of the aesthetic signment of the male forehead: a gender-reassignment face. New York, NY: Thieme Medical Publishers; 1984. surgery. Aesthetic Plast Surg. 2011;35(6):1043–9. 8. Morgan JPI, Haug RH. Evaluation of the craniomaxil- 20. Glasgold MJ, Glasgold RA, Lam SM. Volume resto- lofacial deformity patient. In: Greenberg AM, Prein J, ration and facial aesthetics. Facial Plast Surg Clin editors. Craniomaxillofacial reconstructive and correc- North Am. 2008;16(4):435–42. tive bone surgery. New York: Springer; 2002. p. 5–21. 21. Downs BW, Wang TD. Midcheek and lower face/ 9. Gonzalex-Ulloa M. Quantitative principles in cos- neck rejuvenation in the male patient. Facial Plast metic surgery of the face (proﬁ leplasty). Plast Surg Clin North Am. 2008;16(3):317–27. Reconstr Surg Transplant Bull. 1962;29:186–98. 22. Bentsianov B, Francis A, Blitzer A. Botulinum toxin 10. Zimbler MS. Aesthetic facial analysis. In: Flint PW, treatment of temporomandibular disorders, masseteric Haughey BH, Lund VJ, Niparko JK, Richardson MA, hypertrophy, and cosmetic masseter reduction. Oper Robbins KT, et al., editors. Cummings otolaryngology – Tech Otolaryngol Neck Surg. 2004;15(2):110–3. head and neck surgery: head and neck surgery. 5th ed. 23. Conrad K, Yoskovitch A. Endoscopically facilitated Philadelphia, PA: Mosby Elsevier; 2010. p. 272–3. reduction laryngochondroplasty. Arch Facial Plast 11. Noureai SAR, Randhawa P, Andrews PJ, Saleh Surg. 2003;5(4):345–8. HA. The role of nasal feminization rhinoplasty in 24. Van Borsel J, De Cuypere G, Van den Berghe male-to-female gender reassignment. Arch Facial H. Physical appearance and voice in male-to-female Plast Surg. 2007;9(5):318–20. transsexuals. J Voice. 2001;15(4):570–5. 12. Ousterhout DK. Feminization of the forehead: con- 25. Spiegel JH. Phonosurgery for pitch alteration: femini- tour changing to improve female aesthetics. Plast zation and masculinization of the voice. Otolaryngol Reconstr Surg. 1987;79(5):701–13. Clin North Am. 2006;39(1):77–86. 13. Habal MB. Aesthetics of feminizing the male face by 26. Fakhry C, Flint PW, Cummings CW. Medialization craniofacial contouring of the facial bones. Aesthetic thyroplasty. In: Flint PW, Haughey BH, Lund VJ, Plast Surg. 1990;14(2):143–50. Niparko JK, Richardson MA, Robbins KT, Thomas 14. The American Society for Aesthetic Plastic Surgery. JR, editors. Cummings otolaryngology – head and Cosmetic Surgery National Data Bank [Internet]. neck surgery: head and neck surgery. 5th ed. 2013. Available from: http://www.surgery.org/media/ Philadelphia, PA: Mosby Elsevier; 2010. p. 904. statistics P a r t V I Emerging Topics in LGBT Medicine Immigrant and International LGBT Health 22

Samantha J. Gridley and Vishesh Kothary

Purpose The Changing Demographics of U.S. Healthcare The purpose of this chapter is (1) to provide an overview of the unique healthcare needs of As we progress into the twenty-fi rst century, the LGBT immigrants in the United States; (2) to population of the United States is changing in ways highlight the political, legal, and social realities that will dramatically transform the delivery and this population faces; and (3) to contextualize management of healthcare systems. One major medical needs as they relate to patients’ diverse demographic trend is notable as part of this change: backgrounds and countries of origin. the increasing racial and ethnic diversifi cation of the U.S. population driven by immigration and the higher number of children born to immigrants. Learning Objectives The Pew Research Center estimates that, if current trends continue, the U.S. population will • Discuss differences in terminology for sexual increase from 324 million in 2015 to 441 million orientation and gender identity between by 2065, and 88 % of this increase is attributed to Western and other cultures, and the benefi t of new immigrants (both documented and undocu- adopting patients’ preferred vocabulary dur- mented) and their U.S.-born descendants. The ing a medical encounter (KP1, ICS1) country’s foreign-born population is projected to • Describe how mental, physical, and interpersonal rise from 45 million in 2015 to 78 million by health concerns of LGBT patients may differ 2065. The Hispanic community is currently the based on immigrant or asylum status (PC5) nation's largest immigrant group, expected to • Describe the complex interactions between constitute 24 % of the population in 2065 com- immigration, law enforcement, and healthcare pared to 18 % in 2015. The Asian population in systems that marginalize LGBT immigrants the United States is expected to grow even more (KP4, SBP1) rapidly, and is projected to constitute 14 % of the population in 2065 compared to 6 % in 2015 [1 ]. These patterns of demographic change will S. J. Gridley , A.B. • V. Kothary , B.S. (*) impact healthcare delivery systems in myriad Vanderbilt University School of Medicine , ways, from increased demand for multilingual Box 230, 215 Light Hall , Nashville , TN 37212 , USA e-mail: [email protected]; Vishesh. and culturally competent healthcare providers to [email protected] meeting the challenge of extending healthcare

© Springer International Publishing Switzerland 2016 391 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_22 392 S.J. Gridley and V. Kothary coverage to new immigrants and their U.S.-born which compiles data gathered by The Pew families. Undocumented immigrants, estimated Research Hispanic Center, Gallup Daily Tracking to number 11.3 million in 2014, face numerous Survey and the U.S. Census Bureau’s 2011 additional challenges in accessing healthcare ser- American Community Survey [ 4 ]. Key fi ndings vices in a timely and affordable manner [2 ]. from the report include: Comprehensive studies show that immigrants fare better than the U.S.-born on several health • There are 637,000 documented adult LGBT parameters such as better comprehensive health immigrants (2.4 % of documented adult immi- outcomes, lower disability and mortality rates, grants), of whom 30 % are Hispanic, and 35 % and higher life expectancy, with signifi cant varia- are Asian or Pacifi c Islander. tion across immigrant racial/ethnic groups. • There are 267,000 undocumented adult LGBT However, immigrants fare substantially worse immigrants (2.7 % of undocumented adult than the U.S.-born in health insurance coverage immigrants), of whom 71 % are Hispanic, and and access to preventive health services [3 ]. 15 % are Asian or Pacifi c Islander. Within this complex and multifaceted picture of • Compared to foreign-born individuals in immigrant health, LGBT-identifi ed immigrants opposite-sex couples, foreign-born individu- provide an added layer of complexity that health- als in same-sex couples are more likely to be care providers must effectively navigate in order male, and have lower incomes despite attain- to provide the highest standard of compassionate ing higher educational levels. and culturally competent healthcare. While it is even more challenging to accurately estimate the number of transgender immi- Helpful Hint grants, a report by the National Center for Immigrants fall under one of three legal Transgender Equality estimates that of the categories: documented (lawfully present approximately 267,000 undocumented LGBT in the U.S. with proper legal authorization), immigrants present in the U.S., between 15,000 undocumented (unlawfully present in the and 50,000 are transgender [ 5]. This number is U.S. without government authorization or most likely an underestimate due to the reluc- with expired authorization), and refugees/ tance of many transgender individuals to identify asylum seekers. The category under which as such before authorities. This unwillingness to a person falls has an enormous impact on publicly identify as transgender may be attrib- that person’s opportunities for employ- uted to past instances of discrimination and prej- ment, housing, freedom of movement, and udice in their homelands, and/or due to mistrust access to healthcare and government and continued fear of U.S. authorities. No data on services. the number of documented transgender immigrants is currently available. An important sub-population, one that is perhaps the most vulnerable and most likely to encounter the healthcare system under adverse circumstances, is that of LGBT refugees and asy- What Percentage of U.S. Immigrants lum seekers. Due to various factors discussed fur- Identify as LGBT? ther in this chapter, LGBT individuals face a high risk of physical, mental, and sexual violence; Confi dently estimating the number of docu- political and legal persecution; and socio-cultural mented and undocumented LGBT immigrants in isolation and ostracization in many parts of the the U.S. is a formidable challenge. An excellent world. Since the mid-1990s asylum claims based analysis of available data is presented in a report on persecution due to sexual orientation and gender by the UCLA Law School’s Williams Institute, identity/expression have become increasingly 22 Immigrant and International LGBT Health 393 commonplace, and U.S. Courts have consistently health outcomes. Even when immigrants from upheld the validity of these claims. There is no these countries are no longer bound by their laws, offi cial data maintained either by the United the anxiety and fear that these laws inculcated in Nations Human Rights Commission (UNHCR) them may carry over into their interactions with or the United States Citizenship and Immigration healthcare providers here in the U.S. Services (USCIS) on the numbers of LGBT asy- Of note, unprecedented progress has been lum seekers and those granted asylum on this made over the past decade domestically as well basis in the U.S. A report from the Heartland as globally in advancing the cause of LGBT Alliance Rainbow Welcome Initiative [6 ] e sti- equality, and many people have come to consider mates that about 3,500 LGBT refugees arrive in the LGBT rights struggle as the Civil Rights the U.S. each year, and about 1,250 LGBT indi- movement of our time. In many parts of the world viduals are granted asylee status each year (based that have been historically hostile to LGBT peo- on data from 2010). It is important to keep in ple, grassroots organizations as well as national mind that many LGBT refugees will not disclose campaigns have emerged to advocate for LGBT their identity, and others may not seek assistance equality. While many legal, political, and social from asylum agencies. changes have been made all over the world, in Another important subpopulation to consider some areas the increased visibility of the LGBT is LGBT immigrants who are HIV positive and population has unfortunately led to a backlash hence must routinely interact with the U.S. against them. healthcare system. While there are no offi cial A United Nations report from 2011 documents statistics on this subpopulation, it is a well- 76 countries in which consensual same-sex rela- established fact that gay men and transgender tionships are a crime, demonstrating just how per- individuals—in the U.S. and globally—are at vasive anti-LGBT laws still are across the globe. high risk of HIV/AIDS and carry a dispropor- In six of these countries—Mauritania, Sudan, tionate burden of the epidemic [7 ]. Given the his- Saudi Arabia, Yemen, Iran, and Shariah-governed tory of prejudice and discrimination against HIV northern Nigeria—same-sex sexual acts are pun- positive people—a prejudice that is often legally ishable by death. Those in power often justify enshrined—LGBT immigrants who are HIV pos- laws that criminalize same-sex acts and gender itive are likely to face triple marginalization due nonconforming behavior as a “necessary public to their status as immigrants (documented or health measure.” (This stance was unsuccessfully undocumented), LGBT identifi cation, and HIV argued in defense of a law criminalizing same-sex seropositivity. consensual conduct among men in the case of Toonen v. Australia in 1992 [8 ].) In reality, such laws infringe on the health rights of LGBT people Back Home: Anti-LGBT Laws because these laws engender fear of revealing and Attitudes Abroad unlawful conduct, which in turn discourages LGBT persons from seeking health care services. In order to provide sensitive and culturally com- As a result, the available healthcare providers and petent care for LGBT immigrants here in the services are ill-equipped to cater to this popula- United States, it is important to have a basic tion’s specifi c needs. Moreover, such laws make it understanding of the environment from which diffi cult for organizations to promote LGBT many of these patients come. While LGBT rights health. For example, authorities in some countries and safety vary signifi cantly across the globe, a have confi scated safer sex literature, thereby number of countries that will be discussed below impairing HIV prevention efforts. have particularly harsh laws against LGBT per- Even in countries where no formal anti-LGBT sons. The criminalization of these citizens’ laws exist, pervasive homophobic attitudes, espe- actions and identities translates into fear of being cially when espoused by healthcare providers, exposed, aversion to health providers, and poorer negatively impact the health of LGBT people. 394 S.J. Gridley and V. Kothary

Fear of being judged, chastised, or exposed legislation condemning same-sex sexual acts is through a breach of confi dentiality may deter only the tip of the iceberg of LGBT antipathy in the LGBT persons from seeking healthcare in these country. A more demonstrative example of the pal- countries. pable hostility toward LGBT Cameroonians is the The 2011 UN report also draws attention to torture and murder of Eric Ohena Lembembe, the particular health issues that transgender persons most vocal and well-known LGBT rights activist in across the globe face. Gender-affi rming surgery Cameroon, in 2013 [11 ]. and cross-gender hormone therapy are not available in many countries, and when they are, astro- Uganda nomical costs and lack of insurance coverage (or Penalties for h omosexuality in Uganda range insurance policy exclusions) prohibit many from 14 years in jail to life imprisonment. The patients from receiving the care they need. Other Anti-Homosexuality Bill proposed in 2009 sought pervasive problems include lack of professional to include the death penalty as punishment for training on transgender health issues and insensi- same-sex sexual acts in particular circumstances tivity to the needs of transgender patients [9 ]. [12 ]. The bill also endorsed imprisonment of any- With these ripple effects of anti-LGBT laws one who becomes aware that a person is gay and and attitudes in mind, we provide you with a fails to report that person within 24 h. The bill was short summary of the politico-legal climates that temporarily tabled due to international pressure, foster oppression of LGBT persons in different but it was resurrected quickly with a few revi- regions of the world. sions. This revised version dropped the death penalty for persons who engage in same-sex sexual acts and replaced it with life in prison—a punishment that Uganda’s Minister of Ethics and Helpful Hint Integrity James Nsaba Buturo claimed would be An understanding of anti-LGBT laws and more “helpful” than the death penalty because it attitudes abroad can help you understand and “gives room for offenders to be rehabilitated” address the unique reservations your patient [13 ]. The bill intensifi ed the criminalization of may have toward discussing their LGBT same-sex sexual acts both on Ugandan soil and identity with healthcare professionals. for Ugandans who engage in same-sex sexual acts abroad. According to the bill, offenders in the latter category may be extradited for punishment back to Uganda. Penalties apply not only to indi- A f r i c a viduals but also to groups who know and do not report gay people or who generally support gay Same-sex sexual acts are criminalized in 34 rights. Ugandan President Yoweri Museveni African countries. In many places, recent laws signed the bill into an act on February 24, 2014 have been stricter and more oppressive than the [14 ], but on August 1, 2014 the act was overturned laws that preceded them. The new, harsher laws by Uganda's constitutional court. Even with this are often precipitated by tacit encouragement judicial ruling, rampant violence has continued from anti-LGBT American organizations. Here is against LGBT people in Uganda. a sampling of countries in Africa with such laws: Democratic Republic of the Congo Cameroon In 2014, the Democratic Republic of the Congo In Cameroon , homosexual conduct is punishable (DRC ) had a bill sponsored in Parliament that with a fi ne and up to 5 years in jail. This law is sought to criminalize same-sex sexual acts as “acts vigorously enforced; Cameroon has arrested more against nature” [10 ]. National Assembly Member homosexual persons (or persons perceived as such) Steve Mbikayi promoted the bill as a means to than any other African country [10 ]. Unfortunately, avoid “moral depravity” and to “preserve African 22 Immigrant and International LGBT Health 395 values,” which, he insisted, “have never tolerated services. Interestingly, the political, religious, romantic relationships between persons of the and medical authorities in Iran recognize “Gender same sex” [10 ]. Identity Disorder” as a valid medical diagnosis and the government even provides fi nancial sup- Nigeria port for cross-gender hormone therapy and sex In January 2014, Nigeria’s president, Goodluck reassignment surgery. However, since homosexu- Jonathan, signed the Same Sex Marriage ality is criminalized, the government often forces Prohibition Act, which punishes persons who LGB individuals who are not transgender to attempt to enter into same-sex marriages with up to undergo sex reassignment therapies against their 14 years imprisonment. The law also prescribes up will or risk being penalized for having a same- to a decade in prison for those who “directly or sex relationship [29]. indirectly” make a “public show” of same-sex relationships [15 ]. In addition, the law incriminates Qatar LGBT rights advocacy groups and people witness- The law in Qatar categorizes same-sex sexual acts ing or aiding same-sex relationships. The cultish as an offense that is punishable by up to 7 years in drive to “morally sanitize” the country extends jail [18 ]. Curiously, only homosexual acts between beyond jargon-fi lled laws—it permeates the mind- males are deemed criminal acts by the law, set of countless citizens who say they “are ready to whereas same-sex sexual acts between adult take the law into their own hands to combat homo- females are not illegal in Qatar. sexuality” [15 ]. Even in prison, gay inmates are kept isolated from other prisoners so that they do Yemen not “indoctrinate the other inmates” [15 ]. Same-sex sexual acts are punishable by death in Yemen , and the offi cial position held by the gov- Zimbabwe ernment is that “there are no gays in Yemen” In 2013, under the presidency of Robert Mugabe— [18 ]. LGBT websites are censored, and there are who in one speech called for the beheading of no public spaces in which LGBT people can homosexuals [16 ]—the “sexual deviancy law” congregate. The invisibility of LGBT culture and passed, which extended crimes of same-sex persons in Yemen renders LGBT-specifi c health behavior to include holding hands, hugging, or care nonexistent. kissing.

Asia Middle East Russia Iran During the 2014 Winter Olympics, Russia fell In Iran , the legal code is based on Islamic law. under international scrutiny for its anti-LGBT Death is a potential punishment for same-sex legislation. In June 2013, a new law was passed sexual acts, and kissing a person of the same sex banning the “propaganda of non-traditional sex- may result in 60 lashes. In March 2013, the sec- ual relationships” to minors, and subjecting dis- retary general of Iran’s high council for human tributors of these materials to lofty fi nes [19 ]. rights described homosexuality as “an illness and Foreigners breaking this law are subject to even malady”; in May 2013, homosexual identity, heavier penalties: they are fi ned more severely beyond specifi c acts, was criminalized and and may be subject to 15 days in prison and deemed punishable by lashes as well [17]. Given deportation from Russia. This law serves as an this politically sanctioned description of gay per- amendment to the previously existing federal sons as intrinsically diseased at the core of their law mandating that children be protected from being, one can extrapolate that LGB Iranians face “information that can bring harm to their health numerous hostilities when accessing healthcare and wellbeing” [20 ]. 396 S.J. Gridley and V. Kothary

Kyrgyzstan highlights that have dramatically expanded the In March 2014, a draft bill that criminalizes rights of LGBT immigrants and their access to spreading information about LGBT issues was healthcare services include [5 ]: published by Kyrgyzstan’s national parliament. In June 2015, the bill passed a second reading in • In 2009, the Obama administration ended a parliament, with 90 members voting in favor and 22-year-old policy banning HIV positive indi- only 2 members voting against it. If the bill passes viduals from traveling to or immigrating to a third reading and is signed by the president, it the United States. Enacted in 1987 amidst a will become a law. The bill has been criticized climate of fear and ignorance regarding HIV, internationally as homophobic and blatantly the policy lacked any scientifi c or medical discriminatory against LGBT people [21 ]. basis and prevented international AIDS con- ferences from coming to the U.S. It had a detrimental effect on gay men and transgender The Americas individuals (who continue to carry a disproportionate burden of the AIDS epidemic) Despite a recent trend toward LGBT-protective engaged in binational relationships or seeking laws being passed in the Americas, some coun- to come to the U.S. for medical treatment. tries still maintain their anti-LGBT laws. • In 2011, the Department of Homeland Security issued prosecutorial discretion guidelines to Belize halt deportations of individuals with signifi - The Belize Criminal Code criminalizes “carnal cant family relationships in the United States, intercourse against the law of nature,” describing including those with “long-term same-sex any sexual act carried out without the intent to partners”. procreate [22]. A case arguing for removal of this • In 2011, United States Citizenship and law, citing its unconstitutionality, was heard in Immigration Services (USCIS) issued guid- the Supreme Court in 2013. As of 2015, a deci- ance to all refugee and asylum offi cers on sion is still pending. adjudicating LGBT refugee and asylum claims; in the past, these offi cers lacked for- Caribbean mal guidance and training in working with Same-sex sexual acts can be penalized with LGBT populations. imprisonment in Antigua and Barbuda, Barbados, • In March 2012, the DHS released new deten- Dominica, Grenada, Jamaica, Saint Kitts and tion standards titled “Performance-Based Nevis, Saint Lucia, Saint Vincent and the National Detention Standards” that seek to Grenadines, and Trinidad and Tobago. Jamaica improve the treatment of LGBT detainees. was labeled “the most homophobic place on earth” Among other provisions, the standards man- in a 2006 TIME magazine article [23 ]. date that strip searches of transgender detainees be conducted in private and allow transgender immigrants to continue to receive New Home: Recent Victories in LGBT medically necessary hormone therapy if they Immigrant Rights in the U.S. received it prior to being detained. Immigration offi cials may also not determine While the United States has not always been at the a transgender detainee’s housing based solely forefront of advancing LGBT equality, the past on their physical anatomy but instead must two decades have seen unprecedented progress in house detainees in accordance with their gen- this area, both in terms of politico-legal changes der identity. The new detention standards as well as socio-cultural shifts in public opinion also require that “all FDA-approved medica- regarding LGBT people. Some important tions necessary for the treatment of HIV/ 22 Immigrant and International LGBT Health 397

AIDS” are accessible to HIV-positive detain- Addressing the Double- ees [24 ]. Marginalization of LGBT • In April 2012, USCIS adopted new policy Immigrants and Refugees guidelines to clarify the eligibility of transgender people and their partners for family- Heartland Alliance, a leading anti-poverty and based immigration benefi ts, including human rights organization, has produced a com- changing one’s gender on immigration prehensive guide to resettling LGBT refugees documents. titled Rainbow Response . This guide identifi es • In December 2012, the Department of LGBT immigrants and refugees as a vulnerable Homeland Security (DHS) proposed regula- patient population that merits extra care from tions to implement the Prison Rape Elimination health care providers. While non- LGBT refugees Act of 2003 in immigration detention. The are usually fl eeing oppressive governments, rules propose standards for offi cials to be LGBT refugees are often seeking asylum from trained by to prevent, detect, and respond to both discriminatory laws and violence committed sexual abuse and assault in detention facilities. by their own families, friends, and neighbors [ 6]. This training includes teaching offi cials “how Not only is this population new to the U.S., but to communicate effectively and professionally they may also face the same isolation within their with detainees, including gay, bisexual, trans- ethnic community here that they dealt with in gender, intersex, or gender nonconforming their home country. For this reason, Heartland detainees”. These rules were fi nalized in Alliance deems LGBT refugees “doubly margin- February 2014 [24 ]. alized”. Health care providers are called upon to • In 2013, the U.S. Supreme Court struck make these patients feel respected and welcome at down a major provision of the Federal a time when they feel like outsiders on all fronts. Defense of Marriage Act (D.O.M.A.). The Federal government now recognizes same- sex marriages performed in states and for- Looking Through a Non-Western Lens eign countries where such unions are legal. Over 1100 legal protections of marriage that It is critically important that a physician caring were denied to same-sex couples formerly for LGBT immigrant/refugee patients be aware have now been extended to all married cou- that Western conceptions of sexuality and gender ples including immigration benefi ts such as identity may not align with their patient’s termi- the ability to sponsor a foreign same-sex nology for describing non-heteronormative spouse for legal U.S. residency, access to a behaviors or identities. The culturally competent same-sex spouse’s health insurance cover- physician will resist imposing Western labels age, and numerous other benefi ts. These onto these patients. Instead, you should ask non- legal changes will go a long way in ensuring judgmental and open-ended questions about the unity of binational LGBT families and patient’s health behaviors; then use the patient’s improving access to healthcare services for chosen terminology to shape the discussion. Be LGBT immigrants. sure to document in the medical record what the • In 2015, the United States Supreme Court in preferred term means to the patient. Remember, Obergefell v. Hodges legalized same-sex mar- every patient has the right to identify as they riage in all states of the U.S [28]. This land- choose. Working within the patient’s lexicon will mark decision will allow LGBT immigrants to help you present your medical advice in a way lawfully marry their partners and gain greater that best gets through to the patient. Doing so will access to health insurance as well as the abil- also minimize the risk of alienating the patient ity to establish lawful permanent residence with labels that carry stigmatizing connotations (“green card”) in the U.S. in their mind. 398 S.J. Gridley and V. Kothary

reported sexual activities and self- identifi ed sexu- Helpful Hint ality. About one fi fth of the sexually active young Different cultures ascribe different labels to men in the study reported same-sex sexual experi- non-heteronormative actions. Work within ences, but a substantial subgroup of these same your patient’s preferred terminology to young men did not self-identify as homosexual or help them feel comfortable and respected. bisexual. It was found that the group reporting same-sex sexual experiences “begin their sexual careers early, engage with a higher number of sex- Rainbow Response captures one reason why ual partners, both male and female; and are more patients from different countries may dissociate likely to report inconsistent condom use, as com- same-gender sexual activity from LGBT identity: pared to their heterosexually active peers” [ 25 ]. “Not everyone who has same-sex sexual partners Each of these factors contributes to a higher risk identifi es as gay, lesbian, or bisexual; there are for acquiring STIs, including HIV. Given the dis- often other cultural and societal implications for connect between same-sex sexual acts and identi- identifying as a member of the LGBT community. ties in this population, in order to adequately Consequences may include endangering oneself, address associated risk factors the provider should bringing shame or dishonor to one’s family, and ask these patients about specifi c sexual acts. experiencing diffi culty in securing employment” Within their cultural context, one cannot accu- [6 ]. As we noted earlier in “Back Home: Anti- rately deduce sexual behaviors from self-identifi ed LGBT Laws and Attitudes Abroad”, many sexuality alone. patients carry with them the stigma and fear of Another point to consider when asking patients non-heteronormative labels even after they have about their sexual practices is that the terms homo- left the country that ingrained these associations sexual, heterosexual, bisexual, or transgender may in their mind. For this reason, physicians should not translate into the patient’s native language. adopt vocabulary that the patient prefers and However, the absence of labels that correspond to allow these terms to evolve only when the patient Western vocabulary does not imply that varying feels comfortable utilizing different labels. sexual behaviors do not exist in other parts of the Because terms used to describe different sex- world; there is no culture in which a spectrum of ual behaviors vary across cultures, the culturally gender and sexual identities does not exist [6 ]. competent healthcare provider will not make Avoid miscommunication by asking whether the assumptions about sexual behavior based on a patient has sex with men, women, or both, in patient’s relationship status or how a person self- addition to asking how they self-identify. identifi es. For example, in Iraq, identifying as LGBT is “taboo, in part because it poses an immediate threat to the family unit… the founda- Helpful Hint tion on which many communities are built” [6 ]. Be specifi c! In addition to asking how the In Latin American countries, power dynamics patient self-identifi es, be sure to ask whether within same-sex sexual acts color the terminol- they have sex with men, women, or both. ogy describing those involved: “Men who pene- Do not assume that the way a patient labels trate other men are not considered to be gay; only their sexuality encompasses all you need to their male partners who are penetrated are… know about their sexual behavior . Active partners are perceived as masculine and often have wives. Receptive partners are [perceived as] more feminine and typically do not Let’s Get Comfortable partner with women” [6 ]. One study examining the context and dynamics One of the biggest ways in which you as a medi- of same-sex sexual experiences among rural youth cal provider can cultivate a trusting relationship in India found that disparities existed between with your LGBT immigrant/refugee patients is to 22 Immigrant and International LGBT Health 399 confront any discomfort you may have with omit potentially embarrassing or stigmatizing LGBT identity before a patient walks in the door. components of their history, and such omissions These patients may come from areas where work to the detriment of their healthcare. Use of LGBT status is so stigmatized that they have had an interpreter both improves patient understand- to hide or suppress their identity out of fear for ing and affords the patient the freedom to speak their safety or the safety of their loved ones. With about confi dential issues without fear of loved such vulnerable patients, it is important to refrain ones listening. from expressing discomfort with LGBT identity An additional benefi t of professional interpret- lest we deter them from continuing to seek ers is that they are trained to minimize their pres- healthcare in the future. ence during the clinical encounter and to repeat At the start of the fi rst clinic visit with an everything that is said. This interpretation tech- LGBT immigrant/refugee patient, it is a good nique allows the conversation to fl ow naturally idea to reiterate that the conversations you have between provider and patient. Ideally, the inter- with them are strictly confi dential. Stress that preter will create a situation in which you and the your goal is to provide them with the best medi- patient feel as though you are speaking to each cal care possible, and explain that answering other through the interpreter rather than talking at questions about their background and lifestyle the interpreter. Patients’ family members who helps you to tailor your care to their individual interpret will likely be less competent in facilitat- needs. Confi dentiality is not something that all ing an interaction like this during the visit. LGBT immigrants and refugees will automatically assume exists when they seek healthcare. Rainbow Response highlights the fact that dis- LGBT Immigrant/Refugee Patients trust is a natural consequence of many LGBT and Intimate Partner Violence refugee/asylees’ past experiences: “The fear of their sexual orientation or gender identity/ All providers should be on the lookout for signs expression being discovered is very real; many of intimate partner violence (IPV) in a patient’s have experienced breaches of trust and confi den- history or physical exam. IPV comes in many tiality in the past, which often led to arrest, abuse, forms: physical, emotional, psychological, verbal, and torture. While repercussions such as these and sexual violence are a few examples (see are not likely to occur in the United States, pro- Chap. 5 for details). viders must honor their feelings and appreciate LGBT survivors of abuse face “compound dis- the sensitive nature of these issues” [6 ]. crimination—prejudice against their same-sex These patients’ fear of breached confi dential- relationship and shame associated with domestic ity in a healthcare setting is not limited to provid- violence” [6 ]. Some LGBT individuals affected by ers’ role as confi dants—interpreters represent abuse may not seek help because they fear doing another group that may be seen as potentially so will show a lack of solidarity within the LGBT untrustworthy to an LGBT immigrant patient. If community [26 ]. They may also be afraid that if you are using an interpreter during a clinical they report domestic violence, society will assume encounter, reassure the patient that the interpreter that LGBT relationships are inherently dysfunc- is obligated to protect confi dentiality in the same tional or abusive [26 ]. Individuals with this fear way that you are. may remain silent in an attempt to protect the If your facility has the benefi t of professional public image of the broader LGBT community. interpreters, always utilize a professional rather Adding immigrant or refugee status into the than a friend or relative of the patient as an inter- picture makes reporting domestic violence an preter. Employing the services of someone who even more complex decision for LGBT individu- does not know the patient ensures anonymity als affected by abuse. Rainbow Response offers and encourages honesty from the patient. In the two additional reasons why this population may presence of a family member, the patient might abstain from reporting: (1) concern that their 400 S.J. Gridley and V. Kothary immigration status will be affected, and (2) • Patient understanding: Remind your patient threats by the abuser “to ‘out’ her/his partner if s/ that they are free to ask questions and that you he were to report” [ 6]. Fear of being “outed”— want them to ask for clarifi cation when they either as LGBT, undocumented, or both—is often do not understand something. Some patients exploited by abusive partners as a power play. may come from cultures in which it would be rude or disrespectful to ask questions to their doctor, or they may be embarrassed about not understanding something. Encourage them to Helpful Hint speak up! In addition, remember that inter- Detailing ways in which your clinic or hos- preters are crucial to facilitating patient under- pital works to protect individuals affected standing if the patient is not fl uent in English. by abuse from retaliation by their abuser • Accommodations : Explain that the patient has can help patients feel safe enough to report a right to request accommodations (within abuse they may have suffered . reason) to make them feel comfortable during their appointment. Rainbow Response offers the example that LGBT refugees/asylees may Addressing Barriers wish to request care from a provider of the to Successful Care same or opposite sex [ 6]. Keep in mind that medical care delves into intimate areas of peo- LGBT patients, regardless of immigration status, ple’s lives and bodies, and it is important to have unique health concerns that differ from respect cultural norms as much as possible. those of the general population, as highlighted in • Privacy : Reiterate to your patient that they Chap. 2. Limited knowledge about the U.S. have a right to see their provider alone (with- healthcare system further compounds the health out family members present) if they want. risks that LGBT immigrant/refugee patients face They can also request that their family mem- [6 ]. They may also not feel comfortable advocat- bers remain in the room if they prefer. ing for themselves when they do have medical • Past trauma and physical exams : Rainbow appointments, or they may be ashamed to reveal Response calls upon providers to take special that they do not fully understand what their pro- care to explain each step of the physical exam vider has told them [6 ]. They may come from for LGBT immigrants and to be prepared to cultures in which talking about sexual practices is address triggers of past trauma: “LGBT refu- not appropriate, even in the context of medicine gees and asylees are far more likely to be sur- [6 ]. In such cultures it is likely that comprehen- vivors of torture and/or to have suffered from sive sex education is lacking, in which case the other forms of life-threatening violence. They patient may have limited knowledge about safe may feel uncomfortable during physical sex practices and risks of STIs. Below is a list of examinations; breast exams, gynecological strategies to overcome these challenges that arise exams, pap smears, and colorectal exams are in serving LGBT immigrant/refugee patients. particularly sensitive procedures that could trigger past traumatic events. Medical staff • Referrals : You must carefully consider the should know that to make LGBT patients providers to whom you refer your LGBT more comfortable, they should move through immigrant/refugee patients for specialty care. each procedure slowly, explaining the purpose Fortunately, Health Professionals Advancing of each step” [6 ]. LGBT Equality provides a free directory of • Infectious disease concerns: LGBT refugee/ LGBT-friendly healthcare providers across immigrant patients may not have had prior the country at www.glma.org . If you would access to STI education or testing. Consider like to be included in this directory, you can offering STI screening if your patient is at risk. sign up for free at the same website. To demonstrate the lack of adequate sexual 22 Immigrant and International LGBT Health 401

healthcare in some regions of the world, and sexual abuse; and often violent persecution consider these fi ndings in a study evaluating in many parts of the world. Many such individu- STI treatment services available to transgen- als enter the United States scarred by a traumatic der patients in Pakistan: “Fewer than 45 % of past, habituated to suppressing their LGBT iden- private and public sector general practitioners tity, and deeply mistrustful of government agen- [in Pakistan] had been trained in STI treat- cies and other institutions. It is imperative that as ment after the completion of their medical a healthcare provider you are aware of the unique curriculum, and none of the traditional healers challenges faced by such patients and are well- had received any formal training or informa- equipped to treat them with the empathy, under- tion on STIs” [27 ]. Moreover, the study found standing, and compassion that they deserve. For that WHO guidelines for STI management many of these patients, revealing their LGBT were being followed by only 29 % of public identity or HIV seropositivity could have had and private sector doctors and a mere 5 % of fatal consequences in their home countries, and it traditional healers. Cost of STI drugs, diag- is understandably not easy for them to readily nostic fees, and consultations fees were found confi de in their healthcare providers in the U.S. to be further barriers to treatment. These fi nd- given the unequal power differential inherent in ings exemplify one country in which health- the provider-patient relationship. care for patients with or at risk for STIs is sub-par, but many other regions also have healthcare systems that are poorly equipped to care for at-risk patients, especially those Helpful Hint within the LGBT population. Transgender immigrants, LGBT refugees/ • In addition, keep in mind that refugee patients asylum seekers, and HIV positive immi- who are HIV positive are more likely to have grants (many of whom also identify as been exposed to TB and other latent infectious LGBT) are especially marginalized, and diseases before coming to the U.S. [ 6 ]. Be many have suffered from physical, emo- sure to screen for such infections if your tional, and sexual violence in their home LGBT immigrant/refugee patient is HIV countries as well as in the U.S. immigration positive. detention system. Acquaint yourself with the • Non-allopathic Medicine : Be sure to ask unique issues faced by these groups so you about prior medical practices, treatments, and can better empathize with these patients and medications that your patient may have provide culturally competent care to them. utilized in their home country. This includes home remedies and supplements.

LGBT Refugees/Asylum Seekers

Mental Health and LGBT As discussed earlier in the chapter, many coun- Immigrants tries around the world have laws that foster institutionalized oppression of LGBT people. When Psychological and emotional well-being, and LGBT identity and/or same-sex sexual acts are coping with past trauma/abuse are important criminalized, it opens the doors to persecution of issues to consider when interacting with immi- LGBT people by police, military, and govern- grant patients, especially with vulnerable groups ment offi cials; judiciary, public, and private such as transgender immigrants, LGBT refugees/ agencies; and even one’s own family, community, asylum seekers, and HIV positive immigrants. and religious institutions. An environment that Individuals belonging to these groups routinely engenders discrimination and prejudice against face discrimination; prejudice; physical, emotional, LGBT individuals can be detrimental to physical 402 S.J. Gridley and V. Kothary and mental health. Such traumatic experiences order to receive access to quality healthcare. All can leave a lasting impact on one’s psyche and healthcare providers should familiarize them- increase the risk for post-traumatic stress disor- selves with the diverse backgrounds, politico- der (PTSD), substance abuse disorders, general- legal challenges, and unique health needs of ized and social anxiety, and other psychological LGBT immigrants in order to provide compas- illnesses. Often, clinicians in the U.S. who work sionate, quality, and culturally competent health- with refugee populations are the fi rst to identify care to this population. these problems, and thus it is imperative that you have the requisite background knowledge and training to work with at-risk LGBT immigrant Resources populations. – Immigration Equality is a major national non- profi t organization that works in policy devel- Transgender Immigrants opment and advocacy for LGBT immigrants. Their website is an excellent resource for Transgender immigrants, e specially those who more information, and patients who need legal are undocumented, have lower rates of health assistance related to immigration can also be insurance coverage than the general population referred to them. [5 ]. Even those who are insured may lack cover- – http://immigrationequality.org/ age for trans-related health issues such as cross- – Heartland Alliance Rainbow Welcome gender hormone therapy and gender-affi rming Initiative “supports the resettlement of Lesbian, surgery. These barriers to quality health insur- Gay, Bisexual, and Transgender (LGBT) refu- ance coverage and affordable healthcare contrib- gees and asylees by offering technical assis- ute to signifi cant disparities in physical and tance to service providers and disseminating mental health for transgender immigrants. The critical resources relevant to both resettlement National Transgender Discrimination Survey staff and refugees and asylees. The Rainbow found that undocumented transgender immi- Welcome Initiative is committed to ensuring grants reported twice the rate of physical assault the successful integration of LGBT refugees in a medical setting compared to the overall sam- and asylees as they establish new lives in this ple of transgender adults (4 % vs. 2 %). The country and pursue new possibilities.” report also found a higher HIV prevalence rate – http://rainbowwelcome.org/– Gay Men's Health among transgender immigrants compared to the Crisis Inc. Immigration projecthttp://www.immi- overall U.S. transgender population (6.96 % of grationadvocates.org/nonprofit/legaldirectory/ undocumented transgender immigrants and 7.84 organization.393220- Gay_Mens_Health_ % of documented transgender immigrants com- Crisis_Inc_Immigration_Project pared to 2.64 % for the overall sample). Moreover, undocumented transgender immigrants were half as likely to know their HIV status compared to the overall sample [5 ]. Healthcare providers References working with transgender immigrant patients should be mindful of these socio-economic diffi - 1. Pew Research Center, 2015. “Modern Immigration Wave Brings 59 Million to U.S., Driving Population culties and systemic barriers to optimum health Growth and Change Through 2065: Views of faced by their patients. Immigration’s Impact on U.S. Society Mixed.” In conclusion, LGBT immigrants routinely Washington, D.C.: September. face the challenges of double marginalization 2. Passel, Jeffrey S., and D'Vera Cohn. "Unauthorized Immigrant Population Stable for Half a Decade." Pew and encounter numerous diffi culties while navi- Research Center. 22 July 2015. gating the complexities of the U.S. immigration, 3. Singh GK, Rodriguez-Lainz A, Kogan MD. Immigrant law enforcement, and healthcare systems in health inequalities in the United States: use of eight 22 Immigrant and International LGBT Health 403

major national data systems. Scientifi c World Journal. of Lesbian Business in Africa . Retrieved from: http:// 2013:512313. www.calbia-foundation.org/zimbabwe-president- 4. Gates G. LGBT adult immigrants in the United States. calls-for-the-beheading-of-gays/ Los Angeles, CA: The Williams Institute at UCLA 17. Dehghan SK (2013, Mar 14). Iranian human rights Law School; 2013. offi cial describes homosexuality as an illness. 5. Jeanty J, Tobin HJ. Our moment for reform: immigra- Guardian News and Media. Retrieved from: http:// tion and transgender people. Washington, DC: www.theguardian.com/world/iran-blog/2013/mar/14/ National Center for Transgender Equality; 2013. iran-offi cial-homosexuality-illness 6. Heartland Alliance for Human Needs and Human 18. Marriage Equality USA (2013, Aug 25). Marriage Rights. Rainbow response: a practical guide to reset- equality in the Middle East. Retrieved from: http:// tling LGBT refugees; 2014 . Retrieved from: http:// www.marriageequality.org/middle-east www.rainbowwelcome.org/uploads/pdfs/ 19. The Council for Global Equality. The facts on LGBT Rainbow%20Response_Heartland%20Alliance%20 rights in Russia; 2013. Retrieved from: http://www. Field%20Manual.pdf globalequality.org/newsroom/latest-news/1-in- 7. Lambda Legal. When health care isn’t caring: Lambda the-news/186-the-facts-on-lgbtrights-in-russia Legal’s survey of discrimination against LGBT peo- 20. Russian LGBT Network. The state Duma passed the bill ple and people with HIV. New York; 2010. Retrieved on “non-traditional sexual relations”; 2013. Retrieved from: www.lambdalegal.org/health-care-report from: http://www.lgbtnet.ru/en/content/state- 8. United Nations Human Right Committee, Toonen v. duma-passed-bill-non-traditional-sexual- relations Australia, U.N. Doc. CCPR/C/50/D/488/1992 (2014, 21. Human Rights Watch (2014, Mar 27). Kyrgyzstan: Jun 7), at http://www.globalhealthrights.org/health- withdraw draconian homophobic bill. Retrieved from: topics/health-care-and-health-services/ https://www.hrw.org/news/2014/03/27/ toonen-v-australia/ kyrgyzstan-withdraw-draconian-homophobic-bill 9. United Nations High Commissioner for Human Rights 22. Glickhouse R, Keller M (2013, May 16). Explainer: (2011, Nov 17). Discriminatory laws and practices and LGBT rights in Latin America and the Caribbean. acts of violence against individuals based on their sex- Americas Society/Council of the Americas . Retrieved ual orientation and gender identity. United Nations from: http://www.as-coa.org/articles/explainer- General Assembly Human Rights Council. Retrieved lgbt-rights-latin-america-and-caribbean#Without_ from: http://www2.ohchr.org/english/bodies/hrcouncil/ Protections docs/19session/A.HRC.19.41_English.pdf 23. Padgett T (2006, Apr 12). The most homophobic 10. Nzioka D (2014, Feb 26). Africa: a look at Africa’s place on earth? TIME Magazine. Retrieved from: anti-gay laws. All Africa. Retrieved from: http:// http://content.time.com/time/world/arti- allafrica.com/stories/201402281416.html cle/0,8599,1182991,00.html 11. Kordunsky A (2013, Aug 14). Russia not only country 24. Burns C, Garcia A, Wolgin P. Living in shadows: with anti-gay laws. National Geographic . Retrieved LGBT undocumented immigrants. Washington, DC: from: http://news.nationalgeographic.com/ Center for American Progress; 2013. news/2013/08/130814-russia-anti-gay-propaganda-- 25. Singh AK, Mahendra VS, Verma R. Exploring context law-world-olympics-africa-gay-rights/ and dynamics of homosexual experiences among 12. The Anti Homosexuality Bill, Uganda; 2009. rural youth in India. J LGBT Health Res. Retrieved from: http://nationalpress.typepad.com/ 2008; 4(2–3):89–101. fi les/bill-no-18-anti-homosexuality-bill-2009.pdf 26. Center for American Progress (2011 Jun 14). LGBT 13. Biryabarema E (2009, Dec 23). Uganda government domestic violence fact sheet. Retrieved from: http:// softens proposed anti-gay law. Thomson Reuters. www.americanprogress.org/wp-content/ Retrieved from: http://af.reuters.com/article/topNews/ uploads/2012/12/domestic_violence.pdf idAFJOE5BM0EQ20091223 27. Rahimtoola M, Hussain H, Khowaja SN, Khan 14. The Anti-Homosexuality Act, Uganda; 2014. AJ. Sexually transmitted infections treatment and care Retrieved from: http://wp.patheos.com.s3.ama- available to high risk populations in Pakistan. J LGBT zonaws.com/blogs/warrenthrockmorton/files/ Health Res. 2008; 4(2–3):103–10. 2014/02/Anti-Homosexuality-Act-2014.pdf 28. “Obergefell v. Hodges”. Encyclopædia Britannica. 15. Nossiter A (2014, Feb 8). Nigeria tries to ‘sanitize’ itself Encyclopædia Britannica Online.Encyclopædia of gays. The New York Times. Retrieved from: http:// Britannica Inc., 2015. Web. 24 Oct. 2015 . ria-uses-law-and-whip-to-sanitize-gays.html?_r=0 29. Terman, Rochelle. “Trans[ition] in Iran.” World 16. Littauer D (2013, Jul 26). Zimbabwe president calls Policy Journal, 2014. Web. 27 Oct. 2015. . Differences of Sex Development/ Intersex Populations 23

Matthew A. Malouf and Amy B. Wisniewski

Learning Objectives Why Learn About DSD?

• Deﬁ ne culturally competent language for dis- Congenital conditions in which chromosomal, cussing differences of sex development (DSD) gonadal, hormonal and/or anatomical sex is dis- and intersexuality with practitioners and cordant within a person or vary from binary deﬁ - affected individuals and families (KP1) nitions of sex are collectively known as disorders • Describe the unique etiologies resulting in dif- or differences of sex development [ 1 ]. ferences of sex development including under- Historically, people affected by DSD were not lying genetics and endocrine function (KP2) told about their condition or associated medical • Discuss the context and challenges, both indi- and surgical treatments. This paternalistic vidual/family and systemic/cultural, in which approach is no longer acceptable, and as a result, DSD are diagnosed and treated (KP4, PBLI1, more and more people affected by DSD know ICS1, SBP5, IPC1) about their conditions and are seeking answers • Describe the medical and surgical treatments from physicians about their health and treatment for DSD, and models in which these treat- options. Additionally, some types of DSD that ments are provided (PC3, PC6, KP5, SBP6) are life-threatening now have effective therapies • Describe the medical, surgical and psychoso that affected individuals are surviving into logical outcomes for individuals affected by adulthood. The net result of both of these changes DSD and appreciate the intersections of these is that physicians of all kinds are increasingly outcomes (PC6) likely to have patients affected by some type of • Identify at least three strategies that providers DSD under their care. can assist and advocate for those affected by a Contrary to experiences of some transgender DSD (SPB5, PBLI1, PBLI2, Pr2) people who have historically been denied medical and surgical therapies, some people with DSD M. A. Malouf , Ph.D. (*) report harm from undesired medical and surgical Connecticut Children’s Medical Center, Hartford treatments they received during childhood. Hospital, University of Connecticut Health , Starting in the 1950s, physicians who treated Hartford/Farmington , CT , USA people affected by DSD followed the “optimal e-mail: [email protected] gender policy ” that supported gender assignment A. B. Wisniewski , Ph.D. within the context of optimizing reproductive University of Oklahoma Health Sciences Center , Oklahoma City , OK , USA and sexual function, as well as supporting stable e-mail: [email protected] gender development [2 ]. Unfortunately, many

© Springer International Publishing Switzerland 2016 405 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_23 406 M.A. Malouf and A.B. Wisniewski people who were patients under this era were not ing gestation and also for the ﬁ rst few months of informed of their DSD status nor of the accompa- postnatal life and produce 2 signals—the peptide nying medical and surgical treatments employed hormone Müllerian Inhibiting Substance ( MIS ) to stabilize gender development . Thus, as and the steroid hormone testosterone . These hor- unwanted side effects of such treatments revealed mones then drive the remainder of male differen- themselves over time, many patients learned of tiation including development of internal male their medical histories as adolescents or adults reproductive structures, penis and scrotum. In without the beneﬁ t education or counseling. The contrast, when a fetus does not possess the SRY result has been dissatisfaction with care, distrust gene as a result of having a 46,XX chromosomal of the medical community, and a call for change complement, the bipotential gonads differentiate in the medical approach to DSD [3 ]. into ovaries that are physiologically quiescent during gestation and postnatal life. Thus, in the absence of MIS and testosterone production, An Introduction for the Busy female fetuses develop internal female reproduc- Practitioner tive structures, a clitoris, labia and outer portion of the vagina [5 ]. For most people, genetic sex What is DSD? The term DSD resulted from the (XY), gonadal sex (testes), hormonal sex (MIS 2006 Chicago Consensus meeting and replaced and testosterone) and anatomical sex (internal outdated terminology such as “intersex” and male reproductive structures, penis and scrotum) “hermaphrodite.” For the most part, “DSD” has are concordant. been adopted by physicians and scientists; how- A person affected by DSD experiences a dif- ever, this new terminology has not been univer- ferent path in their sex development and differen- sally accepted by affected people [4 ]. Thus, when tiation resulting in discordance between their working with affected individuals and their fami- genetic sex, gonadal sex, hormonal sex and/or lies it is important to determine how they them- anatomic sex. For example, a person may possess selves wish to describe their unique experience a 46,XY chromosome complement and testes, with sex differentiation and development. but due to atypical or incomplete development of To understand DSD, it is necessary to appreci- their testes they are unable to produce the hor- ate how sex development and differentiation typi- mones MIS and testosterone. This person would cally proceeds, where multiple aspects of sex then experience development of their internal consistently follow a male or female pathway reproductive structures and external genitalia that (see Table 23.1 ). During fetal development, bipo- is not male-typical. As a result of this discor- tential gonads are established early. If a fetus pos- dance, this person has a DSD. Because sex dif- sesses the SRY gene encoded on the Y ferentiation is a complex process, atypical chromosome, then the bipotential gonads differ- development can occur due to multiple causes entiate into testes. This explains why most fetuses and result in variable presentations at the genetic, with a 46,XY chromosomal complement develop gonadal, hormonal and anatomic levels. With this testes. Fetal testes are physiologically active dur- heterogeneity of DSD in mind, it is not surprising

Table 23.1 Multiple levels of sex associated with typical male and female differentiation Internal anatomical External Chromosomal sex Gonadal sex Hormonal sex sex anatomical sex Male XY Testes MIS, testosterone Prostate, Penis, scrotum epididymides, vas deferens Female XX Ovaries None Uterus, fallopian Clitoris, labia, tubes, cervix, upper outer vagina vagina 23 Differences of Sex Development/Intersex Populations 407 that a single nomenclature to describe how peo- whereby no elective genital surgeries should be ple perceive DSD remains elusive. performed on any persons with DSD until such Along with the new terminology of DSD to individuals are old enough to provide informed describe differences in sex development and dif- consent for such procedures [8 ]. Finally, provid- ferentiation is also a new nomenclature to catego- ing mental health support to parents who make rize DSD conditions according to sex medical decisions for their child with DSD [9 ] as chromosome complement and gonadal differen- well as integrating patient- and family-centered tiation [1 ]. For example, “46,XY DSD” refers to care for DSD within the larger context of con- situations where a person possesses a 46,XY genital, chronic medical conditions [ 3 ] and ser- chromosome complement but does not experi- vice systems [10 ] are also recent suggestions for ence full masculinization of their internal repro- improving DSD care as our appreciation of sex ductive structures and/or external genitalia as a and gender development expands. result of (1) an inability to produce MIS and/or testosterone, (2) an inability of target tissues to respond to the hormones due to nonfunctioning Linguistic and Cultural Competency hormone receptors, or (3) atypical timing of tes- around DSD ticular differentiation or hormone production (i.e., a timing defect). Other classifi cations of Over the last decade, cultural and linguistic com- DSD are 46,XX DSD and sex chromosome DSD. petency (CLC) has emerged as a growing force While the prevalence of every etiology under- in the promotion of health equity [11 ]. In relation lying DSD is not well established, in general, the to LGBT health, CLC may be defi ned as the prevalence of DSD including atypical genital capacity to address the healthcare needs of indi- development at birth is reported to be 1 in 4500 viduals who identify as LGBT and their families [ 1]. For people with a type of DSD that does not (adapted from [12 ]. Tools for conducting organi- include genital ambiguity, presentation of their zational assessments [13 ] and measuring indi- condition may occur around the time that puberty vidual competency [14 ] for providing services to is expected to occur. Adolescents who present to LGBT populations have been developed. clinic with DSD typically do so in 1 of 3 ways; Intersex-identifi ed individuals and/or those diag- (1) girls with primary amenorrhea, (2) girls who nosed with a DSD and their families stand to virilize at puberty and (3) boys with delayed benefi t from these tools and increasing empha- puberty [6 ]. The education and mental health sis on provider competence. Since DSD are approach to such adolescents and their families somewhat rare and often poorly understood both will differ from that of parents of newborns with by health professionals and consumers, a genital ambiguity. competency-based model allows providers who The understanding of sex in general, and treat- may not have had previous focused training on ment for DSD specifi cally, has evolved over the DSD to still provide quality care to individuals. decades. The “ true sex” conceptualization of two Additionally, CLC promotes social justice aims sexes—male and female—determined solely by by challenging individual biases and assump- biology was replaced by the “optimal-gender tions and emphasizing language and communi- policy” of John Money in the mid-twentieth cen- cation around sex and gender. A competent tury. This newer theory posited that behavioral provider can also effectively model skills for sex could be infl uenced by learning, independent families and individuals who engage in a similar of biological sex. Early genital surgery to remove process as they learn to manage societal biases anatomical ambiguity of affected children was and linguistic barriers when communicating part of the management plan under which the about DSD to others in their lives. optimal-gender policy was employed for DSD A key component of competency is an appre- treatment [7 ]. More recently, the “full-consent” ciation for both the communicator and the audi- treatment plan for DSD has been suggested ence’s values and attitudes. Thus, it is essential to 408 M.A. Malouf and A.B. Wisniewski ask families about their background and to attend explaining these varying aspects of language in to intersecting aspects of culture. Families’ lay terms. decision-making around DSD will be shaped by their expectations, experiences and understanding of sex and gender within the religious and Helpful Hint cultural context of their social networks [15 ]. Transgender is an identity label that refers to As noted in the introduction, while “DSD” has the experience of one’s internal gender iden- been adopted by physicians and scientists [4 ], tity not matching one’s sex of rearing. Some there are a variety of terms used in conjunction individuals with DSD may identify as trans- with this population so it is important to allow gender. DSM-5 criteria for Gender Dysphoria individuals and families to self-label and to be (GD) in Children (302.6) and in Adolescents mindful of several nuances. For example, it is and Adults (302.85) have been revised. DSD important to differentiate between language used is no longer an exclusion criteria for GD and to describe a physical phenomenon, an observed is instead coded as a specifi er. behavior or an identity. “Disorder or difference of sex development” should be used to describe medical conditions only. Additionally, person- fi rst language is recommended and it is preferable to use the specifi c DSD diagnosis if it is Etiologies of DSD (Fig. 23.1) known (e.g. a child with congenital adrenal hyperplasia). In terms of behavior, “gender non- 1. The category 46,XX DSD encompasses conforming (GNC)” or “gender variant” gener- many congenital conditions in which ovar- ally refers to behaviors or statements which do ian development is atypical, genitalia are not clearly match or follow societal gender roles. masculinized due to excess androgen expo- Not all individuals with a DSD will exhibit GNC sure in utero, and/or female reproductive behaviors or identify as such, though, in some structures develop differently than expected cases, individuals may describe themselves using for unknown reasons [ 1]. In terms of num- similar language (e.g. as a gender non-conforming ber of cases, congenital adrenal hyperplasia teenager). “Intersex” is used by some individuals (CAH) due to 21- hydroxylase (21-OH) defi - to self-label and can be used to describe their ciency is the most common presentation of diagnosis, their gender, their identity or any other 46,XX DSD. aspect of themselves. It serves as an alternative to 2. The category 46,XY DSD also encompasses and challenges the socially-constructed sex many congenital conditions in which testicu- binary. lar development is atypical, genitalia are When barriers to using preferred language demasculinized due to insuffi cient androgen exist (e.g. medical billing), it is recommended exposure in utero, and/or male reproductive that these be openly discussed with patients so structures develop differently than expected they understand the intent of any communication for unknown reasons [1 ]. Unlike 46,XX DSD that uses non-preferred language. Be mindful that no single etiology of 46,XY DSD constitutes communication between providers may uninten- the majority of presentations. Additionally, tionally be shared with consumers. For new diag- the etiology underlying 46,XY DSD remains noses, it is the job of the provider to help educate undetermined in approximately half of all families and individuals about DSD. It is impor- cases of 46,XY DSD including ambiguous tant to realize that an individual’s understanding external genitalia [16 ]. of biological sex may be very different than a 3. Sex Chromosome DSD is a category that medical defi nition and time may need to be spent encompasses any condition in which the sex 23 Differences of Sex Development/Intersex Populations 409

21 22 24 26 20 Mineralocorticoids 18 23 25 O O 12 17 H (21 carbons) OH 11 HO 19 13 27 16 9 14 1 15 2 10 8 Cholesterol Aldosterone 3 H H 7 O 4 5 6 HO Cholesterol side-chain Aldosterone cleavage enzyme OH synthase OH O O Deoxy- O O Progesterone corticosterone HO Progestagens (21 carbons) 1hdoyaeAromatase 21-hydroxylase 3-beta-hydroxysteroid dehydrogenase (3 11 Corticosterone

O β O HO Pregnenolone O -hydroxylase 17α-hydroxylase

OH OH 17α-hydroxy O 17α-hydroxy O O O pregnenolone OH progesterone OH 11-deoxycortisol OH HO OH

Cortisol HO O OO 17,20 Iyase O O O Glucocorticoids Androgens (19 carbons) (21 carbons) (liver and placenta) β -HSD) Dehydroepi- Androste- Estrone OH HO androsterone O nedione HO OH 17β-HSD Estriol OH OH OH HO

Androstenediol Testosterone Estradiol HO O HO 5α-reductase Cellular location OH of enzymes

Estrogens (18 carbons) Mitochondria Smooth endoplasmic Dihydrotestosterone O reticulum H

Fig. 23.1 Enzymes, substrates and products in human ste- Wikiversity Journal of Medicine 1(1). DOI:10.15347/ roidogenesis [“Steroidogenesis” by David Richﬁ eld wjm/2014.005. ISSN 20018762.—Self- made using bkchem (User:Slashme) and Mikael Häggström. Derived from pre- and inkscape. Licensed under Creative Commons vious version by Hoffmeier and Settersr. In external use, this Attribution-Share Alike 3.0 via Wikimedia Commons— diagram may be cited as: Häggström M, Richﬁ eld D (2014). http://commons.wikimedia.org/wiki/File:Steroidogenesis. “Diagram of the pathways of human steroidogenesis”. svg#mediaviewer/File:Steroidogenesis.svg ]

chromosome complement is neither 46,XX Helpful Hint nor 46,XY. For example, a person with a Although the nomenclature for DSD is 45,X/46,XY complement would be catego- based largely upon sex chromosomal com- rized as having a Sex Chromosome DSD [1 ]. plement, genetic sex is thought to exert a The most common presentations in this cate- small impact, if any impact at all, on gen- gory are Turner Syndrome (45,X) and der development. Klinefelter Syndrome (47,XXY). 410 M.A. Malouf and A.B. Wisniewski

Practice Guidelines types of hormone replacement such as cortisol and growth hormone. Finally, transitioning medi- Recommendations for the treatment of people cal treatment for people with DSD from pediat- affected by DSD are inherently multi-disciplinary rics to adult-oriented care remains as a challenge in nature and reﬂ ective of the range of outcomes but is increasingly being recognized for optimiz- of concern, e.g. medical, surgical, quality of life, ing health outcomes [21 , 22 ]. mental health and psychosocial. All processes Surgery as part of DSD treatment is controver- surrounding treatment of DSD, from evaluation sial, and some people have called for a morato- and diagnosis to surgical decision-making must rium of these procedures [23 ]. At present, parents involve parents and, to an age-appropriate extent, can represent their child by proxy in the surgical the patient. In all cases of DSD, general clinical decision-making process, particularly when there goals include anticipating likely medical prob- is no clear evidence that the outcomes of surgical lems and determining timing of any necessary interventions are worse than not doing surgery at interventions, understanding the underlying eti- all, and also when the interest of the present-day ology and educating the family and the affected child and future adult are not identical [8 ]. individuals [ 6 , 17 , 18 ]. In the majority of cases However, claims that modern surgical techniques where a DSD is diagnosed at birth or in infancy, for DSD procedures result in better cosmetic and initial clinical goals also include deciding on a functional outcomes have not been substantiated sex of rearing. with peer-reviewed data [20 ]. A description of As DSD represents a large group of heteroge- unsatisfactory cosmetic and functional outcomes nous conditions with different causes and natural of surgical procedures for DSD employed in the histories, we will touch only on generalities of past is provided later in this chapter. If surgeries medical management here. Hughes et al. offer are part of an affected individuals treatment plan, detailed information on medical evaluation spe- then a thorough anatomical assessment is neces- ciﬁ c to particular types of DSD [19 ]. Worth not- sary to guide surgical management [24 ] The most ing, is that there has been a shift toward rearing common types of surgery for DSD are removal of more infants with 46,XY DSD as male [20 ]. In gonadal tissue that has an elevated risk for devel- terms of timing, the 2006 Consensus states that oping cancer, genitoplasty to create male or gender assignment should only occur after medi- female external genitalia that appear more typical, cal evaluation for newborns, and for older chil- and vaginoplasty to allow for vaginal intercourse dren gender should not be reassigned unless the and/or menstruation. child requests it [1 ]. Delaying assignment past At the heart of DSD care is the interface birth may represent a shift in thinking for both between multidisciplinary teams and families. families and medical staff but is an important one Guidelines for developing and implementing that can help set a paced tone for further evalua- DSD teams exist, including a sample operational tion and treatment. Medical evaluation should pathway , proposed goals for multidisciplinary occur with an experienced multidisciplinary team team meetings, and a proposed timeline of multi- that will likely include genetics, pediatric endo- disciplinary care visits [ 25 – 28 ]. Further recom- crinology, pediatric urology, pediatric surgery, mendations include auditing clinical activity, adolescent gynecology and mental health profes- conducting clinical research, and building collab- sionals. The 2006 Consensus states that, once the orative working partnerships with other DSD evaluation has occurred, all patients should teams to optimize team performance [ 6 ]. receive a gender assignment if they have not Additional guidelines for teams and individual already received one. Some, but not all, children providers are provided in Table 23.2 . will require sex hormone replacement to induce Throughout medical management, family puberty and maintain secondary sex characteris- members must take part in the decision-making, tics in adolescence and adulthood. Depending on including gender assignment [ 1]. As noted the type of DSD, some children will require other above, raising a child with a DSD may represent 23 Differences of Sex Development/Intersex Populations 411

Table 23.2 Guidelines and resources on management of DSD Target audience Organization Guideline/Resource All providers, Endocrinology Society for Endocrinology UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development. All providers ISNA/ACCORD Alliance Clinical Guidelines for the Management of Disorders of Sex Development All providers Pediatric Endocrine Society and the Hughes et al. [1 ] statement on European Society for Paediatric management of intersex disorders Endocrinology Urology European Association of Urology; Disorders of sex development. In: European Society for Paediatric Urology Guidelines on paediatric urology (2009) Counseling (MA-level) American Counseling Association ALGBTIC Competencies for Counseling LGBQQIA Individuals Psychology American Psychological Association Answers to Your Questions About Individuals With Intersex Conditions (2006) All providers World Professional Association for Standards of Care for the Health of Transgender Health Transsexual, Transgender, and Gender-Nonconforming People, Version 7 All providers, medical ethics German Network of Disorders of Sex Ethical principles and Development (DSD)/Intersexuality recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents (2010) VA providers Department of Veterans Affairs VHA Directive 2013-003: Providing Healthcare for Transgender and Intersex Veterans Policy makers, Justice/ U.S. Department of Justice: National Policy Review and Development Corrections Institute of Corrections Guide Lesbian, Gay, Bisexual, Transgender, and Intersex Persons In Custodial Settings (2013)

a shift in families’ understanding of sex and gen- surgical decisions made by parents may, in-turn, der. Prior to learning of their child’s diagnosis, impact their own mental health [31 – 34 ]. To better many parents will never have heard of DSD [29 ] support families through this process, a model of and, as a result, face a steep learning curve shared decision making has been proposed for requiring support through decision making. surgical decisions but may also be valuable at all Informed consent models of decision making, stages of DSD treatment [ 35]. An alternative to which often rely on single-episode consent and informed consent, it places emphasis on collabo- emphasize individual autonomy, are problem- ration between families and multidisciplinary atic, especially for families of children with teams and takes into account the emotions that DSD since DSD are complex and have the families experience as well as each individual’s potential to impact many family members [30 ]. value- and belief-system. Similarly, as more and The latter is an important consideration since more young people are educated about their parents often struggle with their own reactions to DSD, it is essential to include them in the deci- their child’s illness. They may view surgical sion-making process and acknowledge their own decisions as a sole solution, or alternatively, values and beliefs [36 ]. 412 M.A. Malouf and A.B. Wisniewski

An important assumption of shared decision healthy lifestyle. People with some types of making is that, with support, families are able to 46,XY DSD that include maldeveloped organs manage their own reactions in order to make such as the kidneys can have a decreased life decisions focused on long-term, child-centered expectancy despite healthy habits; however, most outcomes. Therefore, providing families with people with 46,XY DSD are expected to have a psychosocial support and assessing their under- typical life expectancy. Individuals with Sex standing of such outcomes is essential and must Chromosome DSD do experience early mortality, be the responsibility of the entire team [37 ]. usually due to cardiovascular problems associ- Beyond medical decision making, psychosocial ated with Turner Syndrome and Klinefelter support can also assist families as they raise a Syndrome. Women with Turner Syndrome also child with a DSD and help them navigate disclos- have a higher than average chance of developing ing medical history and treatment to their child hypothyroidism and celiac disease than unaf- [ 10]. While outside therapists and support groups fected women. Finally, people with any type of may play a valuable role in this process, there DSD who are unable to produce sex steroids at may be additional stigma associated with getting puberty are at risk for developing osteopenia and such support. Specifi c guidance on fi nding a sup- osteoporosis if left untreated [5 ]. port group or connecting with a mental health Surgeries for DSD include removal of gonadal clinician are provided later in this chapter. tissue that is at risk for developing gonadoblasto- Furthermore, the multidisciplinary team is ulti- mas, clitoroplasty, vaginoplasty, hypospadias mately responsible for following the child across repair and scrotoplasty. Reduced genital sensitiv- the life-span and can best assess family function- ity in women with CAH who received clitoro- ing at any given point. Best practices recommend plasty [41 ] and dissatisfaction with cosmetic the inclusion of a mental health representative outcomes for men and women with ambiguous and, where possible, an affected individual or genitalia who received genitoplasty as young parent, on the team from the start to reduce asso- children [42 ] are typical of reports in the litera- ciated stigma and provide families with an initial ture. Men with DSD report greater satisfaction psychosocial support contact [6 , 10 , 17 ]. with genital function following genitoplasty than women. Thus, just as the etiologies and natural histories of DSD are varied, so too are patients’ Medical Outcomes perceptions of genitoplasty. Despite these poor outcomes, some people with DSD report that Fertility potential varies with type of DSD. If a infancy or childhood is the best time to receive person with 46,XX DSD, 46,XY DSD or Sex surgery for DSD [43 ]. More studies are required Chromosome DSD possesses normally function- to understand such disparate perceptions of geni- ing gonads, then their fertility potential can be toplasty among people with DSD. Additionally, high. For instance, women with 46,XX DSD due information about how children with ambiguous to 21-OH defi ciency who receive appropriate genitalia who do not receive genitoplasty develop medical management are capable of maintaining is needed to assess the costs and benefi ts of these pregnancies and delivering healthy babies [38 ]. irreversible procedures. Men with 46,XY DSD due to 5α-reductase defi - ciency have fathered children [39 ] and men with Sex Chromosome DSD as a result of Klinefelter Psychological and Emotional Syndrome are able to father children with assisted Outcomes reproductive technology [40 ]. In general, people with 46,XX DSD due to Differences of sex development have the poten- 21-OH defi ciency have the same life expectancy tial to impact aspects of psychological and emo- as unaffected individuals, provided they receive tional functioning, particularly mental health and appropriate cortisol replacement and maintain a self- concept. The rarity of these conditions as 23 Differences of Sex Development/Intersex Populations 413 well as the variation between and within specifi c cifi cally, increased anxiety compared to controls DSD, make it hard to generalize across groups. [ 49]. Other samples of individuals with DSD As a result, outcomes vary from study to study have not differed from controls on broad mea- and between DSD sub-groups. Additionally, sures of mental health, PTSD and depression [50 ] cohort effects due to treatment models and chang- including those with CAIS [51 ] and CAH [46 , ing societal beliefs related to secrecy around sex/ 52]. One study on 58 women with MRKH noted gender non-conformity could infl uence individ- higher levels of anxiety but no differences in ual experiences and outcomes. The studies refer- depression compared to a standardized sample enced in the following sections have primarily [ 53 ]. Despite the heterogeneity of fi ndings, it is examined adult samples with mean ages ranging recommended that providers be mindful of the from early twenties to early thirties and include potential for poor psychological outcomes in participants as young as 18 years of age and up to these populations and work to prevent and/or their early 50s. While contemporary advances in ameliorate their impact through appropriate psy- treatment and changes to treatment models may chological and psychosocial support. have occurred prior to the birth of or during the Findings surrounding suicide and self-injury lifetime of many of these participants, their data also warrant concern due to both the prevalence may not be refl ective of the latest treatment of lethality in DSD populations and the relative guidelines [17 ]. Furthermore, research has not constancy of these fi ndings within the literature. examined whether current guidelines have been Rates of suicidal ideation in one DSD sample widely adopted and implemented, so individuals were comparable to control trauma groups groups in younger cohorts may still receive care typical who had experienced either sexual or physical of past treatment models. Therefore, providers trauma or both, with self-harm behaviors most are encouraged to assess both families and prevalent in 46,XY individuals, male- or female- patients within the context of their illness, their identifying [47 ]. Women with CAH and 46,XX- unique treatment history, cultural infl uences and and 46,XY-virilized females have also reported family dynamics, and other psychosocial or envi- increased suicidal ideation and mental health ser- ronmental stressors. vice use compared to controls [49 ]. Additionally, over one third of participants in a study of 46,XX women with CAH reported a history of a suicide Mental Health attempt [48 ]. It is recommended that all providers screen their patients for lethality concerns, even Approximately 40 % of children affected by a in the absence of other stated or documented DSD in one study met diagnostic criteria for a mental health history. psychiatric illness and an additional 20 % reported mild but non-clinical psychological concerns [ 44]. However, adolescents affected by Self-Concept DSD did not differ from controls on a measure of psychological functioning [45 ] and girls diag- In addition to the impact of DSD on mental nosed with CAH did not differ from controls on a health, these conditions have the potential to pro- measure of psychological functioning [46 ]. foundly infl uence self-concept including: gender, Data on adult outcomes are similarly incon- sexuality and dating, and self-esteem and body clusive. More than half of the participants in a image. Though the majority of individuals sample of individuals affected by DSD met clini- affected by a DSD do not experience gender dys- cal cutoffs for psychological distress, with a par- phoria (GD), rates of GD are somewhat higher ticularly high incidence of mental health concerns than in general population and certain conditions (80 %) in the CAIS subsample [47 ]. Studies on (e.g. PAIS, 5-α reductase, 17 β hydroxysteroid women with CAH have also documented broad dehydrogenase) have higher rates of GD than concerns related to mental health [48 ] and, spe- other types of DSD (e.g. CAH, CAIS; see 414 M.A. Malouf and A.B. Wisniewski

Sandberg et al. [54 ] for review). Some data also timing of puberty in non-DSD-affected popula- suggest that girls with and women with CAH tions has suggested that precocious puberty is have more typically-masculine personality traits associated, in varying patterns, with poor psy- than unaffected peers [46 , 55 , 56 ] but gender chosocial outcomes for both boys and girls [65 , variance is distinct from gender dysphoria [ 57 ] 66] while delayed puberty generally has more and conformity to gender stereotypes is not a negative impact for boys than girls [67 , 68]. It is viable treatment outcome. Instead, families and possible that sex differences related to poor body individuals should be supported in understanding image in DSD populations [45 ] are moderated by that variation in interests and personality is nor- delays in puberty. mal and that societal expectations for behavior Finally having a DSD can feel isolating [48 , (i.e. gender role) evolve over time and vary across 69]. This isolation may reinforce feelings of cultures. Similarly, parents may be concerned abnormality or inadequacy and make it hard for about their child’s future sexual orientation, and individuals to have realistic appraisals of them- there is some data to support greater variation of selves in comparison to other individuals, both sexual orientation within some DSD populations affected and unaffected. Providers should be [ 58 , 59]. Akin to gender conformity, a non- mindful of the language they use around sex and heterosexual orientation is not pathological and gender and work to help families and individu- is not a treatment goal. This is consistent with als normalize their experiences and construct policy statements from multiple professional their own defi nitions of femininity and organizations including the American Academy masculinity. of Pediatrics, the American Psychiatric Association and the American Psychological Association warning that interventions to change Exercise: Boy or Girl ?! non-heterosexual sexual orientation are contrain- dicated in practice [60 ]. Instead, parents should Now that you understand key language, the realize that non-heterosexuals can have equally underlying biology, and potential treatments fulfi lling lives as heterosexuals and that parent and outcomes for DSD, let’s try to apply this support is a critical factor in outcomes for les- understanding. bian, gay and bisexual youth [61 ]. Imagine you are a healthcare provider seeing a However, individuals affected by a DSD may 3-month old who has a 46,XY DSD owing to a have other concerns related to sexual and/or gender partial unresponsiveness to androgenic hormones identity. Some women with AIS have described resulting in a moderate degree of genital ambigu- feeling like their womanhood has been comprised ity (AKA partial androgen insensitivity syn- and fear devaluation by others [62 ]. Women with drome). This is your fourth follow-up and, CAH have also expressed concerns related to fears medically, the patient is doing well. The parents of romantic rejection and have poor body image are still in the process of making surgical deci- and lower self-esteem [50 , 63 ]. Women and girls sions and there is some disagreement between with DSD are also less likely to have been in them about sex of rearing. Just as you are about romantic relationships [45 , 49 , 64 ], and while this to conclude your visit, mom asks you for help. is not inherently pathological, it may be refl ective She has been invited to a holiday celebration at of concerns surrounding self-worth. her cousin’s house and she knows she will see a Though much of the research has focused on lot of extended family who she has purposely women affected by a DSD, research including been avoiding since the baby was born. She is boys affected by a DSD found that they had more hesitant to go since she is afraid of how people negative body image than controls [ 45 ]. will react to her child’s diagnosis and she doesn’t Surprisingly, the girls in the study affected by a know how to explain it. This is atypical for DSD did not differ from unaffected peers. This her since she and her spouse are both recent fi nding was most pronounced in individuals who immigrants and their extended family has been a do not spontaneously enter puberty. Research on strong support system for them previously. 23 Differences of Sex Development/Intersex Populations 415

They have decided to go but to leave the baby to effectively do so, individuals and families must with another relative. become comfortable with and skilled at disclos- What would you council mom to do if a fam- ing their/their child’s condition. This is challeng- ily member asks her about the sex of the baby? ing for many people, especially when they are Choose the best answer, given what you know still coming to terms with a DSD diagnosis [29 , about this family: 69 ] so it is recommended that they proceed slowly and with support and modeling from their 1. She should explain that sex is not binary but is health providers. Individuals may benefi t from a spectrum comprised of many characteristics choosing to fi rst disclose to someone they believe and that their baby has some differences that will be understanding and supportive. This could are not all that uncommon but is otherwise include extended family members or close healthy and well cared for. friends, or, in cases where these are not safe peo- 2. She should say things are too complicated to ple, a support group, a therapist, a religious explain and asks them to read a book on DSD leader, or another individual affected by a DSD and then talk later. or parents of an affected child. 3. She should avoid answering the question by Deciding what to disclose ahead of time can taking out a picture and gushing over how also make this task easier and allow individuals cute the new baby is. to enforce healthy boundaries. For example, for 4. She should pretend to take a phone call and school-age children, parents may need to share then join a different conversation. certain aspects of their child’s medical history 5. They should just decide to skip the party but with the school, especially if a school nurse needs keep the baby-sitter and go out to a nice din- to provide medication (e.g. stress dosing for ner, just the two of them. CAH). Any information provided to the school should be tailored to the needs of the child. In this example, the school nurse does not need to know Correct Answer All of the above could be cor- any surgical history and questions about genitalia rect depending upon the parent’s comfort with the are a violation of the student’s privacy. If the individual they are speaking to and their confi dence child is old enough to understand, the parent in their ability to manage the disclosure. It is impor- should also let them know what information has tant to remind parents and individuals that having been disclosed and to who. Many health provid- boundaries is healthy but that boundaries can also ers are happy to write a letter which families can be fl exible. It will take practice to adapt them to share with the school system to assist in disclos- new settings and situations. It is important for the ing this information. Similarly, providers can family to fi nd ways to engage their natural supports help write letters for adults to employers, col- to reduce isolation and to practice disclosing to oth- leges, etc. as warranted. ers. It is also valuable to link them with additional supports, including other families who are dealing with similar diagnoses. The following section Medical Care describes strategies to help individuals disclose their condition in safe, affi rming and empowering Families and individuals should be encouraged to ways and in a range of contexts. seek out specialized, multidisciplinary care consistent with current best practices [1 , 6 , 70 ] when possible. These are often located in major medi- Advocating for Competent Care cal centers that have the necessary clinical and research support. Therefore, not all individuals It is essential that families and affected individu- will have convenient access to these teams or als be able to advocate for competent and ethical access may change following relocation for care and support in a variety of settings. In order work, school, etc. In cases where DSD specialists 416 M.A. Malouf and A.B. Wisniewski are not available, medical providers should be are seeking medical advice, it may be most prudent directed to both general DSD and specialty- to contact a group that has a medical advisory board specifi c resources as described in the prior sec- associated with it and regularly updates the infor- tion on practice guidelines. Families can facilitate mation they share to refl ect current fi ndings. For care by keeping copies of medical records and other individuals who are primarily seeking peer- signing consents to allow providers to share support, joining a group that is organized by information with one another. Similarly, for ado- affected individuals can be affi rming and empow- lescents and adults, it is important that they be ering. Finally, groups communicate through vary- able to communicate any medical needs or coming ways; some groups meet regularly in person plications they have due to their condition with while others function primarily via online message providers they may be seeing for other reasons. boards. Both have benefi ts and drawbacks. In either Support groups can also be helpful in guiding case it is important to realize that each member of families and individuals to competent providers any group has had a different experience and per- and many groups keep provider listings on their sonality and to couch their communications in that website or provide them via listservs. context. The same holds true for other online resources (e.g. personal websites, blogs, youtube videos) which are often valuable resources but must be considered within their context. Helpful Hint Physicians can be patient advocates too! To ensure that family and patient voices are at Therapists, Psychologists the center of care, help coordinate meetings and Psychiatrists between patients and all providers (including primary care and specialties). This can occur Finding a mental health clinician who is trained even outside of formal DSD teams. These to work with issues related to sex development meetings should be distinct from medical may seem challenging at fi rst. However, many visits and focus on making sure families and therapists are trained to work around broader patients understand their options and that issues of sex, gender and sexual orientation and/ providers understand decisions that are made or around health conditions, and could be compe- by families and patients. These can also be tent and comfortable working with individuals used to identify gaps in knowledge or sup- affected by DSD even if this is not their specialty. port for both patients and providers and to When asked about the kind of therapist they develop a plan to address them. would fi nd most helpful, women with CAH prioritized basic therapeutic skills (listening, empathy, and acceptance) over CAH-specifi c knowledge [10 ]. It is therefore possible to fi nd a Support Groups therapist who may be effective even without expertise on DSD. However, it is important to When looking for a support group, it is important to note that if the individual or family fi nds that time remember that each group varies depending upon spent educating their therapist on DSD detracts several factors: emphasis, audience, leadership and from their sessions or serves only to satisfy the format. Some groups emphasize disease specifi c therapist’s curiosity, it is appropriate to let the issues (e.g. CARES) while others include individu- therapist know this and suggest the therapist con- als with diverse diagnoses (e.g. AIS-DSD). Some sult with colleagues or gain education on DSD groups primarily target parents while others have from an expert or professional organization. The an adult-focus. In terms of leadership and structure, focus of therapy should be on the individual’s it is important that consumers be intentional. If they and/or the family’s presenting issues. 23 Differences of Sex Development/Intersex Populations 417

Therapeutic interventions for DSD vary across child welfare, school, or other social services. the lifespan. At time of diagnosis, therapists Medical providers can be strong advocates for should work to help the family and/or individual their patients/clients but, in more complex cases, process their emotions, use positive coping strat- it is helpful to involve social workers or legal aid egies, understand medical information, partici- on the team [ 1 , 6]. When possible, it is recom- pate in decision-making, manage disclosure as mended that providers have face-to-face multi- needed, and engage DSD-speciﬁ c psychosocial disciplinary team meetings which include support. The next critical tasks when working representatives from involved agencies. Do not with families are to help them disclose age- assume that agencies will document these meet- appropriate information to their child about diag- ings. Ideally, the team should have met in nosis and treatment and to help the family advance so that they can clearly and uniformly maintain social connections with other parents of articulate any recommendations or requests and DSD children. This is critical as affected indi- provide a sound rationale for them. Always, gain viduals enter puberty and begin to learn more consent from families and individuals and about their body, about sex and increasingly review limits of conﬁ dentiality and protections compare themselves to peers. In adolescence, of privacy prior to disclosing information to out- therapists can help the individual make meaning side parties. Additionally, at least one organiza- of their diagnosis and integrate it into their iden- tion specializes in providing legal counsel and tity through exploration, education and engage- advocacy on issues related to DSD (e.g. aiclegal. ment in social support groups with peers and org), however, other organizations that deal with mentors. Finally, for adults with DSD, therapists broader sex, sexuality and gender advocacy (e.g. can help them further understand their diagnosis www.lambdalegal.org , www.aclu.org) may also and treatment history, navigate interpersonal be valuable resources. relationships and issues of disclosure and, if present, validate and treat any depression, anxiety, negative self-worth, shame or other mental health Conclusion concerns associated with their diagnosis or treatment history. As readers have likely gathered from this chapter’s discussion of the etiologies, treatments and outcomes for DSD, these conditions are not homogenous and require multidisciplinary Helpful Hint treatment tailored to the individual. Current Remember that individuals and families models of care emphasize the importance of might want to talk to a therapist about top- supporting families through decision-making ics that are unrelated to DSD but are equally and helping them develop a plan that addresses important to treat, especially since pre- their child’s medical and psychosocial needs morbid psychological issues may present a across the lifespan. Cultural values and beliefs risk for poor DSD-related outcomes. about sex and gender must be discussed as part of routine care. The language providers use when discussing these conditions plays an essential role, not only in helping families’ Schools, Social Services, Insurance understand various conditions and treatment and Legal Issues options, but also for affected individuals to understand their treatment history, to integrate In some cases, families and individuals may their condition into their identity in a way that need support around other institutional issues has meaning to them, and to believe in their like insurance coverage, adoption, custody and potential to grow into healthy, happy adults. 418 M.A. Malouf and A.B. Wisniewski

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Purpose Discrimination in Health Care against LGBTI Patients and Their The purpose of this chapter is to provide an over- Families view of how federal and state legislation, regulations, and other public policies affect LGBTI health. When considering legal and policy issues related to lesbian, gay, bisexual, transgender, and intersex (LGBTI) patients and their families, it is Learning Objectives important to remember that LGBTI individuals across the United States continue to face discrim- • List trends in policy related to LGBT health ination on the basis of their sex, sexual orienta- on the governmental (federal and state) and tion, and gender identity in many areas of their nongovernmental levels. (KP4, SBP1) lives, including from health care providers and in • Describe how speciﬁ c policy issues, including health care delivery settings. In many situations, standards for medical education and data col- no law prohibits such discrimination, and the lection, affect LGBT people and families. individuals harmed have few legal remedies. (KP4, SBP1, ICS3) Numerous surveys, studies, and reports have doc- • Identify at least 2 ways in which the Affordable umented both the widespread extent of the dis- Care Act impacts LGBT communities. (KP4, crimination experienced by LGBTI patients and SBP1) their families in health care settings and the effect • Identify at least 3 ways in which LGBT civil that discrimination has on the health and wellbe- rights priorities such as nondiscrimination and ing of LGBTI individuals. marriage equality relate to LGBT health and wellbeing. (KP4, SBP1) Discrimination and Gay, Lesbian, I. Bau (*) and Bisexual Health Independent Consultant , San Francisco , CA , USA e-mail: [email protected] In a 2009 national survey conducted by Lambda K . B a k e r Legal with nearly 5000 respondents, 29 % of Senior Fellow, LGBT Research and Communications lesbian, gay, and bisexual (LGB) respondents Project, Center for American Progress, Washington , DC , USA reported that they believe health care providers e-mail: [email protected] will treat them differently because of their sexual

© Springer International Publishing Switzerland 2016 421 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_24 422 I. Bau and K. Baker orientation, and 9 % believed providers will In another well-publicized case in 2007, refuse them treatment because of their LGB sta- Florida’s Jackson Memorial Hospital rejected tus [1 ]. These fears are well-founded: Overall, legal documents authorizing visitation and pow- nearly one in ten LGB respondents reported actu- ers of attorney for health care decisions between a ally being refused needed medical care because lesbian couple [4 ]. When Lisa Pond collapsed of their sexual orientation; 11 % reported that with a brain aneurysm during a family vacation in health care providers had used harsh or abusive Florida, hospital staff denied her partner Janice language with them, and 4 % reported that pro- Langbehn and their children access to Lisa’s bed- viders had been physically rough or abusive. side, telling Janice that they were in an “anti-gay Even professional medical associations have state .” The ensuing years of controversy and pub- formally participated in sexual orientation dis- licity over this case eventually prompted President crimination. In the mid-2000s, for instance, the Barack Obama to issue a presidential memoran- California Medical Association (CMA) ﬁ led a dum in 2010 directing the Centers for Medicare legal brief defending the right of a California and Medicaid Services (CMS) to use its regula- physician to deny fertility services to a lesbian tory authority to require all hospitals receiving because the physician disapproved of her sexual federal funding to recognize same-sex couples orientation. Fortunately, the CMA ultimately and other patient-designated support persons as reversed its position and ﬁ led a new brief sup- family members for purposes of visitation and porting the patient’s right to equal access to health care decision-making [5 ]. Since almost all health care services, regardless of her sexual ori- hospitals receive some federal funding through entation [2 ]. The California Supreme Court even- programs such as Medicare and Medicaid, this tually ruled in favor of the patient and established regulation should be implemented by most hospi- a statewide legal precedent prohibiting discrimi- tals in the United States [ 6 ]. Nonetheless, this nation by health care providers based on sexual policy development highlights the importance of orientation [3 ]. Despite the positive outcome of efforts to educate LGBTI individuals about hav- this case, however, concerns remain in jurisdic- ing advance legal directives for health care deci- tions across the country that providers may be sion-making, including powers of attorney for able to invoke so-called “conscience clauses” to health care decisions, advance directives, and evade legal bans on discrimination on the basis of physician orders for life-sustaining treatment. sexual orientation or gender identity. The CMS regulations notwithstanding, it remains a challenge to ensure that all health care facility employees, including providers and other staff, recognize and respect the rights of same- Selected Court Decisions Relevant to sex couples and LGBTI patients in general. Every LGBT Health year, the Human Rights Campaign Foundation Discrimination by health care providers compiles the Healthcare Equality Index (HEI) , based on sexual orientation prohibited: which documents voluntary responses by health North Coast Women’s Care Medical Group care organizations to a survey about their LGBT- v. San Diego County Superior Court , 44 inclusive policies and practices [7 ]. The HEI Cal. 4th 1145 (2008) documents whether participating facilities have Federal constitutional right to marriage implemented LGBT-inclusive nondiscrimination equality for same-sex couples policies, including visitation policies that recognize LGBT families, as well as training for United States v. Windsor, 570 U.S. ___, employees on LGBT health issues. In 2014 more 133 S. Ct. 2675 (2013) than 1500 health care organizations from every Obergefell v. Hodges, 576 U.S. ____, 135 state and the District of Columbia participated, S. Ct. 2071 (2015) including hospitals, community health centers, and Veterans Administration medical centers. 24 Legal and Policy Issues 423

The HEI is a useful tool to monitor the imple- or abusive language with them, and 8 % reported mentation of inclusive visitation policies. physically rough or abusive treatment. Concerns about health care discrimination and A 2011 national survey conducted by the health disparities on the basis of sexual orienta- National Center for Transgender Equality and tion are not confi ned to gay and lesbian individu- National Gay and Lesbian Task Force similarly als. uncovered catastrophic rates of health-related A 2011 report from the San Francisco Human discrimination against transgender and gender- Rights Commission thoroughly documented the nonconforming people: Roughly one-quarter of health disparities experienced by bisexual women the more than 6400 respondents reported being and men and the barriers they face in accessing denied needed treatment, being harassed in health appropriate health care services [8 ]. In compari- care settings, or postponing medical care because son to heterosexuals, lesbian women, and gay of discrimination from providers [ 10 ]. These men, bisexual people are more likely to suffer encounters with discrimination are correlated from depression and other mood or anxiety disor- with signifi cant health disparities in the transgen- ders and to report higher rates of hypertension, der population, including a lifetime risk of sui- poor or fair physical health, smoking, and sub- cide attempts up to 26 times higher than the stance use. Bisexual women in particular also general population and an HIV prevalence among experience higher rates of domestic violence transgender women of color that is among the compared to other women, and they are signifi - world’s highest [11 ]. cantly less likely to have health insurance cover- This survey also highlighted the pervasive age and more likely to experience fi nancial problem of health insurance discrimination barriers to appropriate health care services. A against transgender individuals. As discussed in 2014 report from Centers for Disease Control and more detail in the section “State Policy Related to Prevention (CDC) using data from the 2013 LGBTI Health”, private and public health insur- National Health Interview Survey also revealed ance plans, including most plans offered by signifi cant health disparities among bisexual health insurance marketplaces, most employer- women in comparison to both heterosexual sponsored health insurance plans, and many state women and gay and lesbian women [9 ]. Medicaid programs, routinely use exclusions to deny coverage to transgender insureds for medically necessary health care services that are cov- Discrimination and Transgender ered for other enrollees on the same plan [ 12 ]. Health Such rampant insurance discrimination has helped perpetuate the estrangement of many Lambda Legal’s 2009 survey also found endemic transgender people from the health care system discrimination against transgender and gender- and exacerbates the already severe health dispari- nonconforming people in health care settings. ties that the transgender population experiences . Three-quarters (73 %) of transgender respondents reported fears that health care providers would treat them differently because of their gender Discrimination and Intersex Health identity, and half (52 %) believed providers would refuse them treatment because they are transgen- A 2005 report from the San Francisco Human der or gender-nonconforming [1 ]. More than 25 Rights Commission documents a pervasive lack % of transgender respondents—substantially of awareness and understanding about intersex higher even than the 8 % incidence of discrimina- conditions [13 ], also known as differences of sex tion on the basis of sexual orientation highlighted development (DSD) [14 ]. Overall, intersex con- by the same survey—reported being refused ditions are much more common than typically needed medical care because of their gender iden- expected: Estimates of the frequency of intersex tity. Worse, 21 % of transgender respondents conditions range from one in 2000 up to one in reported that health care providers had used harsh 150 births and, according to the University of 424 I. Bau and K. Baker

California at San Francisco, 40 genital surgeries ties to take steps toward meeting them is to are performed annually in the city of San explore the use of standard Continuing Medical Francisco alone to assign a binary male or Education (CME) sessions and other professional female sex to an infant born with “ambiguous” training modules that are becoming increasingly or “abnormal” sexual anatomy. widely available about LGBTI health issues. The Commission report found no evidence Recognizing the importance of CME in incen- that intersex children beneﬁ t from “normalizing” tivizing learning and training, California has interventions, and other data suggest that the expanded state-mandated CME cultural compe- long-term consequences of “normalizing” genital tency requirements to include “understanding and surgeries are quite negative. Many intersex adults applying cultural and ethnic data to the process of report that the endocrine treatments and/or sur- clinical care, including, as appropriate, informa- geries they were subjected to as infants, children, tion pertinent to the appropriate treatment of, and or adolescents—in most cases, without their provision of care to, the lesbian, gay, bisexual, informed consent—cause scarring, pain, dimin- transgender, and intersex communities1 . ished or absent sexual function, and other physical harm, as well as psychological problems such as post-traumatic stress disorder, depression and anxiety, poor body image, and suicidal ideation. Selected LGBTI Cultural Competency Thus, a major policy principle for adult intersex Resources individuals and advocates is that, barring true American Association of Medical medical emergencies, a child’s anatomy and Colleges—Implementing Curricular and identity should not be determined in infancy by Institutional Climate Changes to Improve health care providers or parents. Rather, individ- Health Care for Individuals Who Are uals with intersex conditions should be able to LGBT, Gender Nonconforming, or Born exercise autonomy over their own bodies and with DSD: A Resource for Medical identities and should be free to make their own Educators (2014): www.aamc.org/lgbtdsd . decisions about gender, sexuality, and major U.S. Ofﬁ ce of Minority Health— medical interventions such as irreversible Culturally and Linguistically Appropriate surgeries. Services (CLAS) Standards and Implementation Blueprint (2013): www. thinkculturalhealth.hhs.gov/Content/clas. LGBTI Inclusion in Health Care asp and www.thinkculturalhealth.hhs.gov/ Education, Training, and Practice pdfs/EnhancedCLASStandardsBlueprint. pdf . A major barrier to more consistent integration of Centers for Medicare & Medicaid LGBTI issues in health care settings is a lack of Services—Special Populations Help provider and other staff training on LGBTI health (LGBT) : https://marketplace.cms.gov/tech- issues [15 , 16 ]. Studies have documented that nical-assistance-resources/special- LGBTI health issues are rarely included in medi- populations- help.html cal school curricula and, when they are, that the Agency for Healthcare Research and majority of the 5 average hours of study time Quality — Innovations Exchange https:// spent on LGBTI health are devoted almost exclu- innovations.ahrq.gov/search/node/LGBT sively to HIV/AIDS [17 , 18 ]. Further, according Health Resources and Services to the 2014 HEI, 14 % of surveyed facilities still Administration —LGBT Cultural did not provide even a minimum of employee training on LGBTI health issues. The training requirements of the HEI are not especially oner- 1 http://leginfo.legislature.ca.gov/faces/billNavClient. ous, suggesting that an easy way for these facili- xhtml?bill_id=201320140AB496 24 Legal and Policy Issues 425

are comfortable and visible in leadership positions. Competency Resources : http://www.hrsa. While the number continues to grow, as of 2014 gov/lgbt there were few “out” LGBT medical school fac- Substance Abuse and Mental Health ulty at schools across the United States [19 ] and Services Administration —LGBT Cultural only a handful of LGBT student organizations at Competency Resources : http://samhsa.gov/ any health profession school in the country [20 ]. lgbt/curricula.aspx Fortunately, there are promising develop- The Fenway Institute and Center for ments in changing the institutional climate in American Progress—Do Ask, Do Tell: A medical and other health professional education Toolkit for Collecting Data on Sexual institutions to be more supportive of LGBTI Orientation and Gender Identity in Clinical health. For example, prompted by the Group on Settings: www.doaskdotell.org . Student Affairs and the Organization of Student GLMA: Health Professionals Advancing Representatives [21 ], the leadership of the LGBT Equality—Cultural Competency Association of American Medical Colleges Webinar Series (2013): http://www.glma. (AAMC) has publicly endorsed support for org/index.cfm?fuseaction=Page.viewPage LGBTI students and faculty [22 ] and published a &pageId=1025&grandparentID=534&pare comprehensive curriculum guide for medical ntID=940&nodeID=1 schools on addressing LGBTI health issues 2 . GLMA: Health Professionals Advancing The AAMC also established the LGBT & DSD- LGBT Equality—Recommendations for Affected Patient Care Advisory Committee in Enhancing the Climate for LGBT Students 2012 and is actively collecting curricular tools and Employees in Health Professional for teaching about LGBTI health issues in Schools (2013): http://healthcareguild.com/ MedEdPORTAL [ 23 ]. In recent years, LGBTI Recommendations% health-focused programs have been established 20for%20Enhancing%20LGBT%20 at several medical schools and other health pro- Climate%20in%20Health%20 fessions schools [ 24– 27 ]. Professional%20Schools.pdf Fenway Institute —Affi rmative Care for Transgender and Gender Non-Conforming State Policy Related to LGBTI Health People: Best Practices for Front-line Health Care Staff (2013): www.lgbtheal- Under the U.S. system of government, the states theducation.org/wp-content/uploads/13- are an important source of health-related law and 017_TransBestPracticesforFrontlineStaff_ regulation. Particularly in states where progres- v6_02- 19- 13_FINAL.pdf sive social attitudes around LGBTI issues have The Joint Commission —Advancing historically been dominant, substantive legisla- Effective Communication, Cultural tion has been enacted to prohibit discrimination Competence, and Patient- and Family- based on sexual orientation and/or gender iden- Centered Care for the Lesbian, Gay, tity in the delivery of health care and health- Bisexual, and Transgender (LGBT) related services, in line with prohibitions against Community: A Field Guide (2011): www. discrimination in other state-governed or state- jointcommission.org/assets/1/18/ funded programs and services. California, for LGBTFieldGuide.pdf example, enacted legislation in 2006 prohibiting discrimination based on sexual orientation and gender identity in all state programs and services, Further, institutional climates around LGBTI including health care [28 ], and in 2008 the state issues at both health professional schools and required training on LGBT health issues in all health care facilities are strongly affected by the degree to which LGBTI-identifi ed staff themselves 2 www.aamc.org/lgbtdsd 426 I. Bau and K. Baker nursing homes and senior care facilities [ 29 ]. In all the remaining state prohibitions on same-sex 2012, California became the fi rst state to prohibit marriage and establishing marriage equality mental health providers from engaging in so- throughout the United States [34 ]. called reparative therapy to attempt to change a Marriage equality is good news for health. In patient’s sexual orientation, [30 ] and as of 2015, the early 2000s, Dr. Ilan Meyer used the term three other states and the District of Columbia “minority stress” to describe the mechanism have enacted similar bans [31 ]. whereby the stressors of social stigma and preju- After several unsuccessful attempts, California dice become embodied as poorer health outcomes enacted legislation in 2015 requiring its for members of a targeted group such as LGBT Departments of Health Care Services, Public individuals [36 ]. And indeed, studies have shown Health, Social Services, and Aging to collect data that anti-gay legislation, such as state laws denying about sexual orientation and general identity [32 ]. the benefi ts and protections of marriage to same- Efforts to expand health-related data collection sex couples, provoke increased incidence of mental about sexual orientation and gender identity— and behavioral health disorders such as depression, whether at the level of population health surveys, anxiety, and substance abuse among lesbian, gay, administrative forms for health programs, or med- and bisexual populations [37 ]. A lack of marriage ical records—continue to be a priority in other equality has also historically contributed to ele- states and at the federal level. New York, for vated rates of uninsurance among same-sex cou- example, moved administratively in 2014 to ples. Legalizing marriage for same-sex couples, on launch a statewide initiative coordinating new the other hand, not only improves health and access LGBT data collection efforts across a range of to health coverage and care for these couples but state agencies, including the Departments of also helps mitigate minority stress by contributing Health, Corrections and Community Supervision, to a more affi rming and healthier social environ- Mental Health, and Children and Family Services, ment for LGBT people generally [38 – 40]. among others [ 33]. While most legislative activity in the states to date has involved sexual orientation and gender identity rather than intersex status, Insurance Coverage for Transgender there may be future opportunities in states such as Health Needs California to advance public policies that support the autonomy of individuals with DSD [34 ]. California was also the fi rst state to specifi cally prohibit insurance discrimination against transgender people. In 2012 and 2013, the California Marriage Equality and LGBT Health Department of Insurance [41 ] and Department of Managed Health Care [42 ] (which has regulatory Though states such as California and New York authority over managed care health plans doing have more progressive histories on LGBTI issues business in California) issued regulations and than many other U.S. states, these examples will legal guidance implementing a 2005 insurance likely be instructive for similar efforts in other nondiscrimination law that includes gender iden- states as momentum in support of LGBT rights, tity [ 43 ] and clarifying that insurers may not use led largely by public acceptance of marriage exclusions that specifi cally deny transgender equality for same-sex couples, gains strength people coverage for care that is covered for non- across the country. In 2013, the U.S. Supreme transgender people [44 ]. Most, if not all, of the Court struck down the provision of the so-called treatments that transgender people may need to Defense of Marriage Act (DOMA) that prohib- medically transition are covered for non- ited the federal government from recognizing transgender people for a variety of conditions, marriages between people of the same sex [35 ], including endocrine disorders, cancer prevention and in 2015, the Court affi rmed a federal consti- or treatment, and reconstructive surgeries follow- tutional right to marriage equality, striking down ing an injury [ 45 ]. Under transgender-specifi c 24 Legal and Policy Issues 427 insurance exclusions, however, transgender indi- Health Care in Detention Settings viduals have frequently faced denials of coverage not only for care that related to gender transition, A particular challenge in the provision of health such as hormone therapy and gender-confi rming care services for transgender people, as well as surgeries, but also for “gendered” preventive for the LGBTI population generally, is detention screenings such as Pap tests and mammograms, facilities such as jails, prisons, and immigration and sometimes for any care at all [46 ]. detention [ 57, 58]. Numerous reports have docu- Expert medical bodies such as the American mented the barriers transgender people in deten- Medical Association (AMA), American Psychiatric tion settings experience in trying to access Association, American Psychological Association, transition-related health care, even when they American Academy of Family Physicians, have a diagnosis of Gender Dysphoria or are American Congress of Obstetricians and already being prescribed hormone therapy when Gynecologists, and Endocrine Society have all they enter detention [ 59, 60 ]. Similarly, people affi rmed the medical necessity of health care ser- living with HIV report diffi culties in accessing vices related to gender transition or Gender anti-retroviral medications in detention settings, Dysphoria, which is the diagnostic term sometimes and most of these facilities do not permit the dis- used to describe a transgender identity. (The diag- tribution of prevention and harm reduction aids nosis of Gender Dysphoria replaced the older diag- such as condoms or clean needles [ 61]. Finally, nosis of Gender Identity Disorder in the DSM-5, in addition to the mental health consequences of which was published in 2013.) The AMA in par- detention, LGBTI people in these facilities are at ticular has specifi cally taken the policy position that substantial risk of sexual assault, particularly health care services related to gender transition transgender women, who are frequently and should be covered by health insurance plans [47 ], inappropriately housed with the male inmate and a 2012 assessment from the California population [ 62 ]. Department of Insurance showed that access to transition-related care signifi cantly improves the health of transgender individuals on indicators such Federal Policy Related to LGBTI as mental health and HIV treatment adherence [48 ]. Health In addition to California, insurance commis- sioners in nine other states plus the District of In addition to the states, all three branches of the Columbia issued bulletins between 2012 and federal government—the executive, legislative, 2015 prohibiting transgender exclusions in insur- and judicial—play an important role in making ance [49 – 56 ]. In 2015, the Offi ce for Civil Rights and interpreting policy that affects the health of at the U.S. Department of Health and Human LGBTI populations. In the realm of the courts, Services followed suit by clarifying that Section for instance, the U.S. Supreme Court’s 2013 1557 of the Affordable Care Act, the health Windsor decision on DOMA prompted the reform law's primary civil rights provision, pro- Internal Revenue Service (IRS), the U.S. Offi ce hibits insurance plan exclusions that categorically of Personnel Management (OPM), and the deny transgender individuals access to health care U.S. Department of Health and Human Services services related to gender transition. In imple- (HHS) to issue a raft of new guidance relating to menting these requirements that plans remove the recognition of same-sex marriages for pur- transgender exclusions, future challenges at the poses such as federal income taxes [63 ], qualifi ed state and federal levels will include ensuring that retirement plans [64 ], and programs such as the health plans actually cover all of the health care Federal Employees Health Benefi ts Program services that are medically necessary for their [65 ], Medicare [66 ], Medicare Advantage [67 ], transgender enrollees and that there are enough and Medicaid [ 68 ]. Similar guidance will follow providers nationwide who provide primary and the 2015 Obergefell decision that extended mar- specialty care related to gender transition. riage equality nationwide. 428 I. Bau and K. Baker

LGBTI Health at the U.S. Department Better Understanding [74 ]. In response, NIH of Health and Human Services took steps such as compiling its own report and portfolio analysis [ 75 ], reissuing its funding Among the Executive Branch agencies, HHS in opportunity announcement on LGBTI health particular has emerged as a leader on LGBTI research [76 ], and convening several listening issues and a key player in LGBTI health policy. sessions between NIH senior leadership and During Bill Clinton's presidency, there were LGBTI health stakeholders to inform the devel- unprecedented initiatives at HHS such as the opment of an NIH-wide strategic plan on advanc- release of an Institute of Medicine report on les- ing LGBTI health research [77 ]. bian health [69 ], the beginning of efforts to initiate a more effective federal response to HIV and AIDS among gay and bisexual men and other men Recommendations from the 2011 who have sex with men (MSM), the convening of Institute of Medicine Report on LGBT the fi rst-ever agency-wide steering committee on Health health disparities related to sexual orientation (expanded in practice to include gender identity), 1. NIH should implement a research and the inclusion of sexual orientation (though agenda designed to advance knowledge not gender identity) as a disparity factor of con- and understanding of LGBT health. cern in Healthy People 2010 , the federal govern- 2. Data on sexual orientation and gender ment’s blueprint for a healthier nation between identity should be collected in federally 2000 and 2010. funded surveys administered by HHS This momentum continued for the fi rst few and in other relevant federally funded months of 2001, when the National Institutes of surveys. Health (NIH) released the fi rst program announce- 3. Data on sexual orientation and gender ment offering funding for research on “lesbian, identity should be collected in elec- gay, bisexual, transgendered [sic], and related tronic health records. populations” [70 ], and HHS supported the publi- 4. NIH should support the development cation of the Companion Document for Lesbian, and standardization of sexual orienta- Gay, Bisexual, and Transgender Health as part of tion and gender identity measures. Healthy People 2010 [71 ]. Throughout the 5. NIH should support methodological remainder of the George W. Bush Administration, research that relates to LGBT health. however, LGBTI health was sidelined at 6. A comprehensive research training HHS. Some programs, such as support for approach should be created to strengthen LGBTI-related research at NIH, even attracted LGBT health research at NIH. politically motivated attacks that had a chilling 7. NIH should encourage grant applicants effect on the development of the fi eld [72 ]. to address explicitly the inclusion or Not until the start of the Obama Administration exclusion of sexual and gender minori- did HHS again began to undertake policymaking ties [LGBT] in their samples. related to LGBTI health. Two substantive over- views of LGBT health issues serve as corner- stones of this work: In 2010, HHS released Also in 2010, shortly after CMS released the Healthy People 2020 with a new LGBT Health hospital visitation regulations described in topic area that discussed a range of LGBT health the section “Discrimination in Health Care disparities in the context of discrimination and Against LGBTI Patients and Their Families” [5 ], minority stress [73 ]. And in 2011, the Institute of Secretary of Health and Human Services Medicine released a comprehensive, NIH- Kathleen Sebelius convened an HHS LGBT commissioned report on LGBT health, The Coordinating Committee co-chaired by senior Health of Lesbian, Gay, Bisexual, and HHS offi cials. Throughout Secretary Sebelius’s Transgender People: Building a Foundation for tenure, the HHS LGBT Coordinating Committee 24 Legal and Policy Issues 429 and other internal and external stakeholders col- In another key advance, in 2014 an indepen- laborated on a range of LGBTI health initiatives, dent Departmental Appeals Board at HHS lifted and in 2011 the committee began to release the exclusion in Medicare that had barred the annual reports outlining the previous year’s activ- program from covering “transsexual surgery” for ities and laying out objectives for the next year more than 30 years [97 ]. [78 ]. Among others, these activities included:

• Collaborating with the White House on an Congressional Actions on LGBT LGBT health summit [79 ]. Health • Establishing the National Resource Center on LGBT Aging [80 ]. The Congressional record on LGBT health is sig- • Incorporating sexual orientation and gender nifi cantly thinner than the portfolio of agency identity into the Offi ce of Minority Health’s activities. The fi rst substantive legislative effort revised Culturally and Linguistically on LGBT health did not come until 2009, when Appropriate Services (CLAS) Standards, then-Representative Tammy Baldwin (D-WI) which serve as the federal government’s de introduced the Ending LGBT Health Disparities facto defi nition of cultural competency [81 ]. Act (ELHDA) [98 ]. This omnibus bill sought to • Funding the National LGBT Health Education advance LGBT health priorities such as promot- Center through the Health Resources and ing LGBT-inclusive research and data collection; Services Administration (HRSA) to help com- encouraging the routine incorporation of LGBT munity health centers serve LGBT patients [82 ]. cultural competency in programs across HHS; • Updating the Substance Abuse and Mental establishing LGBT-inclusive nondiscrimination Health Services Administration’s (SAMHSA) policies in federal health programs such as 2001 guide to substance abuse treatment for Medicaid, Medicare, the Federal Employees LGBT individuals [83 ]. Health Benefi ts Program, and health services • Establishing a joint HRSA/SAMHSA com- provided by the Veterans Administration; and mittee to identify and promote effective LGBT creating an Offi ce of LGBT Health within the cultural training modules (see [84 , 85 ]). HHS Offi ce of Minority Health. • Publishing a new resource toolkit on LGBT Though ELHDA was never passed, it repre- health issues [86 ]. sents a pivotal moment in Congressional attention • Addressing disparities related to sexual ori- to LGBT health. Prior to this bill, no federal leg- entation and gender identity in high-profi le islation had proposed to specifi cally address annual reports such as the National LGBT health disparities. In 2007, for instance, Healthcare Disparities Report [87 , 88 ], then-Representative Hilda Solis (D-CA) intro- Women’s Health USA [ 89], and the CDC’s duced the Health Equity and Accountability Act Health Disparities and Inequalities Report (HEAA) [99 ] to guide and improve federal efforts [90 , 91 ]. in areas such as data collection, culturally and lin- • Including sexual orientation and gender guistically appropriate health care, health work- identity in federal strategies around issues force diversity, high-impact minority diseases, such as multiple chronic conditions [ 92], nondiscrimination, and the social determinants of HIV/AIDS [93 ], and racial and ethnic dis- health and health disparities. This groundbreak- parities [94 ]. ing legislation on racial and ethnic minority health • Partnering with the Out2Enroll initiative [ 95 ] disparities did not include, however, any refer- to ensure that the benefi ts of the Affordable ence to sexual orientation or gender identity. Care Act reach LGBT communities. But following the introduction of ELHDA in • Publishing a report documenting the scien- 2009, each biennial iteration of the HEAA has tifi c evidence against so-called conversion refl ected a deeper understanding of intersectional therapy [ 96 ] . health disparities and recognized that racial, 430 I. Bau and K. Baker

ethnic, and other disparities cannot be fully addressed in isolation from the disparities associ- Affordable Care Act (2014): http://out2en- ated with stigmatized sexual orientation and gen- roll.org/out2enroll/wp- content/ der identity [ 100]. The HEAA is an essential uploads/2014/07/O2E_KeyLessons_ statement of the importance of addressing health FINAL.pdf . disparities, and it is a key source of health equity Kaiser Family Foundation—Health and provisions that can be incorporated into other Access to Care and Coverage for Lesbian, legislation or enacted administratively. Gay, Bisexual, and Transgender Individuals in the U.S. (2014, updated 2015): http://kff. org/disparities- policy/issue-brief/health- The Affordable Care Act and LGBTI and-access-to-care-and-coverage-for-lesbian- Populations gay-bisexual- and-transgender-individuals- in-the-u-s/ . A major piece of enacted legislation that has sig- Center for American Progress and nifi cant relevance for LGBT health is the Patient National Coalition for LGBT Health— Protection and Affordable Care Act of 2010, com- Changing the Game: What Health Care monly known as the Affordable Care Act (ACA) Reform Means for Lesbian, Gay, Bisexual, [101 ]. Though the term “ sexual orientation ” and Transgender Americans (2011): http:// appears only once in the law, in a section about cdn.americanprogress.org/wp-content/ cultural competency training for mental health uploads/issues/2011/03/pdf/aca_lgbt.pdf care providers [102 ], and the term “gender identity” does not appear at all, the law provides numerous opportunities for advocates to advance Closing the Coverage Gap LGBT health priorities with the states and with HHS, the lead federal agency charged with imple- A central premise of the ACA is expanding the menting the law [103 ]. According to Secretary availability and quality of health insurance cover- Sebelius, “the Affordable Care Act may represent age. Before the ACA’s coverage reforms took full the strongest foundation we have ever created to effect, almost 50 million Americans were unin- begin closing LGBT health disparities” [104 , 105 ]. sured [106 ], including more than 24 % of LGBT people [107 ]. In particular, one in three (34 %) of Resources on the ACA and LGBTI Populations LGBT people with incomes under $45,000 per Out2Enroll [ 95 ] is a nationwide campaign year were uninsured [108 ]. Almost half of LGBT launched in 2013 to provide information for people in this income range had put off going to LGBT people about their insurance options under a doctor for medical care they needed in the last the Affordable Care Act and train health insur- year because they could not afford it, and 31 % ance enrollment assistance personnel to work had unpaid medical debt, rising to 43 % for par- effectively with LGBT individuals and families. ents [ 109 – 113 ]. The ACA has signifi cantly expanded access to insurance coverage across the United States. Center for American Progress—Moving As of November 2015, 17.6 million people have the Needle: The Impact of the Affordable gained coverage under the ACA, reducing the Care Act on LGBT Communities uninsurance rate to 9 %—the lowest rate of unin- (2014): https://www.americanprogress.org/ surance in U.S. history and a drop of 45 % since issues/lgbt/report/2014/11/17/101575/moving- 2010 [ 149]. Uninsurance among low- and mid- the- needle . dle-income LGBT adults declined by a quarter Out2Enroll—Key Lessons for LGBT between 2013 and 2014 (from 34 % uninsured in Outreach and Enrollment under the 2013 to 26 % uninsured in 2014) [ 150 ], and the ACA cut unisurance almost in half among LGB 24 Legal and Policy Issues 431 adults—from 21.7 % to 11.1 %—in all income The intent of the ACA was that the states ranges between 2013 and 2015 [ 151 ]. would operate their own marketplaces, but the The ACA facilitates access to affordable health political environment around the reform effort insurance coverage in two main ways: It requires led a majority of states to leave marketplace gov- the states to open Medicaid eligibility to everyone ernance to HHS. This has led to a system in making up to 138 % of the Federal Poverty Level which the federal government runs the majority ( FPL ), and it establishes new health insurance of the marketplaces through HealthCare.gov, marketplaces in every state to offer fi nancial assis- while a handful of states such as California and tance in the form of sliding- scale tax credits [114 ]. New York run their own marketplaces [121 ]. Because of the Supreme Court decision on the ACA in June 2012, the states do not have to expand their Medicaid programs as the law origi- Nondiscrimination Under the ACA nally required [115 ]. As of November 2015, 30 states and the District of Columbia had expanded The Affordable Care Act extends the nondiscrimi- their Medicaid programs [116 ], making it possi- nation protections of existing federal civil rights ble for LGBT people who previously would not laws to any entity established under Title I of the have met traditional Medicaid’s stringent eligibil- ACA, administered by a federal executive agency, ity criteria to gain coverage. Expansion Medicaid or receiving federal funds—including providers also eliminates the problem that individuals with and facilities participating in Medicare or HIV would not get Medicaid coverage for HIV Medicaid. The protected classes enumerated in treatment until their health had deteriorated to the ACA Section 1557 include HIV status through the point where they became disabled by AIDS [117 ]. Rehabilitation Act and sex through Title IX, and In states that do not expand Medicaid, however, HHS clarifi ed in regulations that the sex protec- the health reform law no longer offers new options tions of Section 1557 include gender identity and to help people with incomes under the poverty sex stereotypes, such as expectations that women line access insurance coverage [118 ]. or men must dress or behave a certain way or that There is no deadline for states to decide to an individual can only be in a marriage or other move forward with the expansion, though states relationship with a person of a different sex that delay lose substantial amounts of federal [122 ]. These regulations also prohibit categorical funding: The federal government pays 100 % of insurance exclusions targeting transgender indi- the costs of expansion between 2014 and 2016, viduals; require facilities such as hospitals to treat and this percentage drops slightly before settling transgender people according to their gender iden- at 90 % in 2020 and beyond. Overall, this fi nanc- tity in policies such as room assignments; and ing arrangement means that the states pay only require insurance carriers and health care provid- approximately 7 % of the cost of closing the covers to make medically necessary health care ser- erage gap through Medicaid expansion [119 ]. vices equally available to transgender and The other major coverage initiative under the cisgender (that is, non-transgender) individuals, Affordable Care Act is the system of health insur- including preventive health care screenings that ance marketplaces in every state. The market- are typically associated with only one sex. places are intended to foster competition in Further, the ACA prohibits marketplaces, their insurance markets by allowing people to shop for employees, the plans sold through them (known as private health insurance plans through a single “qualifi ed health plans ,” or QHPs), and individuals streamlined interface that allows for easy com- and organizations providing consumer assistance parisons between different products [ 120 ]. The with enrollment from discriminating on bases that ACA’s marketplaces provide income-based include sexual orientation, gender identity, and fi nancial assistance in the form of tax credits that health status. QHPs and other plans subject to the people can use to offset the cost of their monthly ACA’s requirements must also meet a variety of premiums. other new standards. These standards prohibit 432 I. Bau and K. Baker practices such as medical underwriting, gender nicity [127 ]. Importantly, it also grants HHS rating, pre-existing condition exclusions, annual authority to collect “any other demographic and lifetime limits on coverage, and arbitrary with- data as deemed appropriate by the Secretary drawal of insurance coverage [123 ]; they also regarding health disparities” [ 128]. In 2011, require plans to treat same- and different-sex mar- Secretary Sebelius released the “LGBT Data ried couples equally in access to family and spou- Progression Plan” through the HHS Offi ce of sal coverage, allow young people to stay on their Minority Health to guide the agency in adding parents’ insurance plans until age 26, and require sexual orientation and gender identity to its data most plans to cover the “essential health benefi ts” collection efforts [129 ]. (EHBs) [124 , 125 ]. The EHBs are services and In 2013, HHS added a new sexual orientation procedures across 10 broad categories of care: question to its fl agship health and demographics instrument, the National Health Interview Survey 1. Ambulatory patient services [9 , 130]. Later that year the CDC approved a sex- 2. Emergency services ual orientation and gender identity question mod- 3. Hospitalization ule that 19 states plus Guam began using on their 4. Maternity and newborn care Behavioral Risk Factor Surveillance System 5. Mental health and substance use disorder (BRFSS) questionnaires in 2014. In many states services, including behavioral health the youth corollary of the BRFSS, the Youth Risk treatment Behavioral Survey, has also asked questions 6. Prescription drugs related to sexual orientation, sexual behavior, and 7. Rehabilitative and habilitative services and transgender status, and CDC used these data to devices publish a report on health disparities among sex- 8. Laboratory services ual minority youth in 2011 [ 131]. In 2015, HHS 9. Preventive and wellness services and chronic proposed new objectives for Healthy People 2020 disease management that would measure progress on these and other 10. Pediatric Services, including oral and vision state activities to collect data about sexual orien- care tation and gender identity [132 ].

With regard to coverage for people living with HIV, insurance plans in several states have engaged From Coverage to Care in questionable practices such as placing HIV medications in restrictive tiering arrangements that The ACA contains numerous provisions aimed require patients to pay high out-of-pocket costs at bridging the gap between coverage and care, and refusing to accept Ryan White Comprehensive particularly preventive services. In addition to AIDS Resources Emergency (CARE) Act dollars including prevention and wellness services as to pay premiums for plans purchased through the one of the 10 essential health beneﬁ ts most marketplaces. These and other concerns about the insurance plans must cover, the law requires continuing potential for discriminatory practices in insurance carriers to cover a range of preventive insurance make federal and state enforcement of services, including depression screening and the ACA’s nondiscrimination protections an HIV testing, without cost, and provides free ongoing policy priority [ 126 ]. annual checkups. Insurance carriers must also provide appropriate preventive screenings for transgender individuals, such as mammograms Federal and State Data Collection and prostate exams for transgender women and cervical Pap tests for transgender men, regard- Section 4302 of the ACA calls on all HHS- less of the individual's sex assigned at birth, funded surveys and programs to collect data on gender identity, or the gender marker on their several disparity factors, such as race and eth- insurance card. 24 Legal and Policy Issues 433

Under the ACA, the Surgeon General chairs a including undocumented immigrants and other National Prevention Council that brings together populations that include low-income LGBTI indi- representatives from 17 Cabinet agencies to viduals [ 138 ]. The law may also have unintended assess opportunities for government initiatives negative consequences for LGBTI people as a in fi elds such as criminal justice, transportation, result of the uncertainty it introduces around the and housing to partner in helping prevent illness future of condition- and population-specifi c fund- and injury and promote health and wellbeing. ing such as the Ryan White CARE Act for HIV The Council compiles an annual report that rec- care [139 ] and the Title X Family Planning ognizes sexual orientation and gender identity as Program for family planning and reproductive factors that contribute to disparities and that health services [140 ]. Finally, despite signifi cant require particular attention in prevention and decreases in uninsurance for LGB adults, research wellness initiatives. The law also established a indicates that problems with access and affordabil- $15-billion-dollar Prevention and Public Health ity remained higher for LGB adults than for non- Fund that supports initiatives such as the Racial LGB adults in winter 2014–15 [ 141], and many and Ethnic Approaches to Community Health concerns remain regarding access to appropriate ( REACH ) grants program and the Community health care services for transgender individuals. Transformation Grants program, which contributed more than $370 million between 2011 and 2013 to nutrition, exercise, and anti-smoking National Quality Improvement programs serving 130 million people [ 133 , 134 ]. Standards and Policies With regard to the provision of health care services, the ACA tripled the size of the National As attention shifts from the expansion of health Health Service Corps, which places newly quali- insurance coverage through the ACA to longer- fi ed physicians in medically underserved areas; term reform of the U.S. health care delivery sys- established an $11-billion fund to support the tem, there are numerous opportunities to integrate maintenance and expansion of community health the improvement of LGBTI health into national centers; and allocated millions of dollars to health quality improvement standards, policies, and centers to assist in outreach, education, and practices. Common frameworks for national enrollment related to the new insurance coverage quality improvement include the six aims of options available through Medicaid and the health safety, timeliness, effectiveness, effi ciency, insurance marketplaces [ 135 ]. The ACA also patient-centeredness, and equity set forth by the established a “negotiated rulemaking committee” Institute of Medicine [142 ], and the “triple aim” to make recommendations to the Secretary of of improved patient experiences of care, improved Health and Human Services regarding an update population health outcomes, and reduced costs to the “medically underserved population” desig- developed by the Institute for Healthcare nation used to defi ne Health Professional Improvement [143 , 144 ]. Shortage Areas and determine whether health Under the IOM framework, the aims of centers are eligible for funding through the patient-centeredness and equity provide numer- Federally Qualifi ed Health Center program . The ous opportunities to integrate LGBTI health committee’s 2011 report recommended that the improvement into overall quality improvement. unmet health care needs of LGBT people should For example, two leading national organizations qualify the LGBT population as a medically supporting quality improvement, The Joint underserved population [136 , 137 ]. Commission and the Patient-Centered Outcomes On the other hand, while the law signifi cantly Research Institute (PCORI), have both recognized increased funding for community health centers, it the connection between patient-centeredness and also relied on projections of expanded insurance LGBTI health. The Joint Commission published coverage to cut funding for safety net public hos- a fi eld guide in 2011 on improving effective com- pitals that predominantly serve the uninsured, munication, cultural competence, and patient- 434 I. Bau and K. Baker and family-centered care for LGBT patients and Electronic Health Records (known as “Meaningful families [145 ], and in 2013 PCORI made its fi rst Use”). This program was launched under the award investigating improvement of patient- Health Information Technology for Economic centered outcomes for LGBTI patients through and Clinical Health (HITECH) Act in 2009 and is data collection in a clinical setting [146 ]. The aim being overseen by HHS through CMS and the of equity further provides the opportunity to Offi ce of the National Coordinator for Health highlight and address LGBTI health disparities Information Technology (ONC). In October 2015, as part of efforts to address the needs of diverse ONC and CMS issued regulations requiring all patient populations [147 – 149 ]. EHR systems certifi ed under Stage 3 of LGBTI health can be advanced within the tri- Meaningful Use to have the capacity to collect ple aim framework by not only by addressing sexual orientation and gender identity data [157 ]. LGBTI disparities as part of broad efforts to Importantly, this does not require providers to col- improve population health outcomes but also by lect SO/GI information. Rather, the requirement initiatives that focus on improving LGBTI peo- applies to vendors who are building certifi ed EHR ple’s experiences of care [150 ]. Given the context systems and health institutions and practices that of continuing discrimination LGBTI individuals are using these systems as part of their participa- encounter in health care settings, for instance, tion in the Meaningful Use program. initiatives combining LGBTI nondiscrimination Large health care organizations, such as policies and more inclusive institutional practices Vanderbilt, the University of California at Davis, such as those recommended by The Joint the Veterans Administration, and Kaiser Commission’s LGBT fi eld guide with enhanced Permanente are using their EHR systems to col- provider LGBTI cultural competency can be lect demographic data that include sexual orien- important drivers for improved experiences of tation and gender identity. Many community care among the LGBTI population. health centers, such as New York City’s Callen- The National Committee on Quality Assurance Lorde and Boston’s Fenway Health, already col- also released new standards in 2014 for patient- lect sexual orientation and gender identity centered medical homes (PCMH). Echoing the information, and some are starting to mine their updated Offi ce of Minority Health’s CLAS EHRs as part of research projects looking at Standards [151 ], these standards direct practices LGBT health disparities, quality of care, and to evaluate the diversity of their patient popula- patient outcomes. The Center for American tions as part of a comprehensive health assess- Progress and the Fenway Institute developed a ment, defi ning “diversity” as “a meaningful toolkit, “Do Ask, Do Tell: A Toolkit for Collecting characteristic of comparison … that accurately Data on Sexual Orientation and Gender Identity identifi es individuals within a non-dominant in Clinical Settings,” that collects best practices social system who are underserved. These char- and provides resources for health care organiza- acteristics of a group may include, but are not tions that want to integrate sexual orientation and limited to, race, ethnicity, gender identity, sexual gender identity data collection into their record orientation, and disability” [152 ]. systems. Collecting data on sexual orientation and gen- In addition to sexual orientation and gender der identity is an important fi rst step in designing identity data collection and the use of patient data effective interventions for improving quality of to help identify and reduce health disparities, care and health care outcomes for LGBTI popula- there are a variety of strategies and interventions tions [153 – 156 ]. A key area for advancing LGBTI for integrating LGBTI health improvement into data collection in clinical settings is electronic quality improvement and disparities reduction health records (EHRs). On the national policy frameworks. For example, patient-centered medi- level, electronic data collection in clinical settings cal homes could be tailored to address the preven- is the focus of a major multi-stage initiative, the tion and care needs of LGBTI individuals and Incentive Program for the Meaningful Use of their families, particularly transgender and inter- 24 Legal and Policy Issues 435 sex people and people living with HIV. In addi- 10. National Gay and Lesbian Task Force and National tion, value-based purchasing models that achieve Center for Transgender Equality. Injustice at every turn: a report of the national transgender discrimina- the triple aim of improving population health out- tion survey; 2011, accessed at: http://www.thetask- comes, improving patient experiences of care, and force.org/reports_and_research/ntds reducing health care costs can be used to develop 11. Baral SD, Poteat T, Stromdahl S, Wirtz AL, health care delivery systems that address the Guadamuz TE. 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143. Berwick DM, Nolan TW, Whittington J. The triple standing and eliminating health disparities. The aim: care, health and cost. Health Aff. 2008;27(3): Fenway Institute; 2012, accessed at: http://www. 759–69. lgbthealtheducation.org/wp-content/uploads/12-054_ 144. The triple aim framework is used in the LGBTHealtharticle_v3_07-09-12.pdf U.S. Department of Health and Human Services 151. https://www.thinkculturalhealth.hhs.gov/pdfs/ National Strategy for Quality Improvement in Health EnhancedCLASStandardsBlueprint.pdf Care ; 2011, accessed at: http://www.ahrq.gov/work- 152. 2014 PCMH Standard 2: Team-Based Care, Element ingforquality/nqs/nqs2011annlrpt.htm C: Culturally and Linguistically Appropriate 145. The Joint Commission. Advancing effective com- Services, Factor 1 (diversity); 2014 PCMH Standard munication, cultural competence, patient- and 3: Population Health Management, Element C: family-centered care for the lesbian, gay, bisexual, Comprehensive Health Assessment, Factor 2 (family/ and transgender community: a fi eld guide; 2011, social/cultural characteristics). Available from www. accessed at: http://www.jointcommission.org/lgbt/ ncqa.org 146. Patient-Centered Outcome Research Institute. 153. Cahill S, Makadon H. Sexual orientation and gender Patient-centered approaches to collect sexual orien- identity data collection in clinical settings and in tation/gender identity information in the emergency electronic health records: a key to ending LGBT department; 2013, accessed at: http://pfaawards. health disparities. LGBT Health. 2013;1(1):1–8. pcori.org/node/20/datavizwiz/detail/3980 154. Institute of Medicine. Collecting sexual orientation 147. Wilson-Stronks A. A call to action for healthcare pro- and gender identity data in electronic health fessionals to advance health equity for the lesbian, records; 2012, accessed at: http://www.iom.edu/ gay, bisexual and transgender community. Human Reports/2012/Collecting-Sexual-Orientation-and- Rights Campaign Foundation; 2011, accessed at: Gender-Identity-Data-in-Electronic-Health- http://www.hrc.org/files/assets/resources/health_ Records.aspx calltoaction_HealthcareEqualityIndex_2011.pdf 155. Offi ce of National Coordinator for Health 148. Krehely J. How to close the LGBT health disparities Information Technology, 2015 Edition Health IT gap. Center for American Progress; 2009, accessed at: Certifi cation Criteria, 80 Fed. Reg. 62602-62759 http://www.americanprogress.org/wp-content/uploads/ (October 16, 2015) issues/2009/12/pdf/lgbt_health_disparities.pdf 156. Cahill S, Singal R, Grasso C, King D, Mayer K, 149. Krehely J. How to close the LGBT health disparities Baker KE, Makadon H. Asking patients questions gap: disparities by race and ethnicity. Center for about sexual orientation and gender identity in American Progress; 2009, accessed at: http://www. clinical settings. Center for American Progress and americanprogress.org/wp-content/uploads/ The Fenway Institute; 2013, accessed at: http:// issues/2009/12/pdf/lgbt_health_disparities_race.pdf www.lgbthealtheducation.org/wp-content/uploads/ 150. Ard KL, Makadon HJ. Improving the health care of COM228_SOGI_CHARN_WhitePaper.pdf lesbian, gay, bisexual, and transgender people: under- 157. http://doaskdotell.org/ehr/toolkit/policyissues Common LGBT Sexual Health Questions 25

Keith Loukes

Purpose Learning Objectives

This chapter will assist providers in discussing • Identify at least 5 ways in which the environ- the problematic area of sexual behaviours with ment, language and appropriate questioning their patients by outlining contextual consider- can infl uence sensitive interactions about sex- ations and by providing examples of commonly uality with patients (KP1, ICS1, ICS2) asked questions along with possible responses. • Defi ne common terms (slang) which patients may use (KP1) • Discuss common questions LGBT patients may ask their healthcare providers and their Helpful Hint answers (PC4, PC6, ICS1, ICS2) – Patient anatomy and behaviors should guide your discussions, not labels or the various ways patients self-identify. Preamble – Have educational material easily accessible in the clinical space and waiting This chapter is not about best evidence-based rooms. A pre-printed list of relevant practice, nor is it a detailed review of specifi c websites may also be a useful tool. subject matter. Quite simply, this chapter is – When discussing sensitive issues like about talking to patients, particularly LGBT sexual activity, think about timing, set- patients, and providing a script of answers to ting, and the language you use. questions they may commonly present to you about sex. I do have a few take-home points, which are essential from my own personal experience:

Use the Right Language

K. Loukes , M.D., M.H.Sc., F.C.F.P. (*) The language in this question-and-answer format Department of Family Medicine , University of is kept as basic as possible. As physicians, it is Toronto , Toronto , ON , Canada easy to forget that the person sitting before you e-mail: [email protected]

© Springer International Publishing Switzerland 2016 441 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4_25 442 K. Loukes likely did not go to medical school. (Perhaps Choose the Right Environment never had any formal education.) Or even just learned English. So unless the person receiving Where you initiate conversation and gather history your conversation has the same background as is key. Although having patients draped and you, never presume it is acceptable to use medi- gowned (or positioned in stirrups) ready for clinical words without explanation—it can be intimi- cians may be an effi cient time-saver, it is the worst dating and seen as a way of dominating the place to have a conversation and get a proper med- conversation. Finding common-denominator lan- ical history from. The more relaxed you can make guage is essential to build rapport and trust. (A apprehensive patients, the better the outcome will quick list of common slang is included as an be. Wearing their own clothes and sitting in a com- appendix to the chapter.) fortable chair under non-institutional lighting and Slang is a challenging area for providers casual artwork or posters on the wall are good because it can be seen as unprofessional. If you tools to promote honest and effective communica- can become comfortable with using slang, it tion. However, some providers may have no con- can be a useful tool to connect with patients. trol over the physical features of the space they are Through small talk you can usually gauge what in. Hospital examination rooms and Emergency kind of language people prefer and may even Department stretchers can be a particular chal- ask what words patients are comfortable in lenge. It is helpful to identify in advance areas that using during your discussion. For example, may be more appropriate for delicate history tak- some people are put off by the word “penis” ing. Try and take advantage of rooms set aside for and “vagina” and that can immediately yield counseling or quiet rooms for families before resistance and unease. Substituting words like moving the patient to a clinical room for appropri- “dick” and “pussy” might be a better fi t for ate physical examination. patients and yield a more relaxed and connected interaction. Another example would be when talking about ano-receptive sex in MSM Ask the Right Questions contact: “bottoming” is much more under- standable for most gay men. Talking to patients about sex is akin to the child- For example, I usually start off with the fol- hood game “ten questions”—you usually only lowing sentence from my personal toolbox: have so many chances to ask about personal I have to ask some personal questions and apolo- details before the person shuts off and becomes gize if that makes you uncomfortable, but it is unreceptive. Therefore asking the right questions important for me to know everything I can in order is important. Focus your questions about activ- to help. I just want to touch base with what words ity, not about preferences. What behaviors peo- you feel more comfortable with—we use the words vagina/penis between doctors/nurses, but which ple do with their anatomy is much more words are you more comfortable with? important than what they would prefer to be doing. Avoid assumptions—just because some- Notice I start with a sentence about impending one identifi es as gay or lesbian does not mean personal questions to break the ice… I fi nd that they are having physical contact only with the personally very effective. In MSM sexual situa- same sex, or even having sex at all. I always ask tions you can then follow up with: questions like: When having sex with men, do you bottom, top or Do you have intimate contact with men, women, or both? both? Do you have any sexual partners at the present or This will have much more impact than using had any in the last 3 months? clinical words which may require further Remember that “sex” means different things explanation. to different people and is a word that should be 25 Common LGBT Sexual Health Questions 443 avoided. “Do you have sex” could mean anything only recommend this procedure in extreme from coitus to physical contact. cases .

Male Questions Prostate Enlargement

General Questions What Is an Enlarged Prostate?” The prostate is a gland in the male urinary tract Penis Size that lies between the bladder and the urethra, the passage where urine exits through penis and is What Is the Average Penis Size? What Can responsible for producing a signifi cant portion of I Do to Make My Penis Bigger? the fl uid contained in ejaculate. Because it sits in There is a social demand for bigger male genita- front of the bladder and surrounds part of the ure- lia—in gay culture, some men put high value in thra, if it swells or gets larger, the prostate can fi nding a partner who has a larger than average slow or stop the fl ow of urination, the most com- penis. A study of over 1400 American men self- mon complaint due to this condition. reported an average of 14.15 cm (5.6 inches) The main cause of an enlarged prostate is sim- while erect. Media including pornography prob- ple aging. As we get older, our prostate gradually ably skews our expectation of what “average” swells, a medical condition called “hypertrophy”. should be, and drives some men to desire greater We call this Benign Prostatic Hypertrophy (BPH size. for short) because it is a natural process not due If you have a partner unhappy with your to serious illness and therefore ‘benign’. With size, you may want to find another partner. BPH, some men can experience diffi culty peeing. Many other men and prospective partners do Less frequently, the prostate can eventually block not care about size and probably will help the bladder completely, requiring emergency your low self-image. Being with someone intervention. Most men, however, have few or no who is critical of your physical attributes can symptoms, and their BPH is of no consequence. contribute to unhealthy body image issues. A urinary tract infection can also cause But should you wish to pursue options for enlargement of the prostate. Such cases often bigger apenis: happen quickly, are very painful, and can be treated with antibiotics. A third and less frequent Pumps rely on suction and can cause temporary cause of a larger prostate is prostate cancer, enlargement by engorgement of the penile tis- which can grow inside the gland causing its size sues—by drawing more blood into the penis to increase. Consult your doctor for recommen- causing it to swell larger than number. The dations when you should start routine screening effect disappears shortly thereafter as the for this. blood returns to the body. Caution should be used as blood vessels may break and cause Erectile Dysfunction bruising or discomfort. Pills and creams. There is no pill to date that What Can I Do If I Am Having Diffi culty causes penis growth. Or cream. Despite large with My Erections? What Can I Do to Get promises and larger price tags, there is no evi- Better Erections? dence these are effective. Unfortunately, this is not an uncommon com- Surgery. The only generally acceptable surgery is plaint and can interfere signifi cantly in people’s where they release the ligament inside the sex lives. There are many causes of ED, includ- body, which provides a modest (even mini- ing normal aging. It can also be seen with condi- mal) increase in length. Most urologists will tions like depression/anxiety, diabetes, and 444 K. Loukes neurological diseases like multiple sclerosis. by burning or freezing them off, or by applying Other frequent culprits of sexual dysfunction are medications (or both) until the lesions are gone. things we put into our bodies like alcohol, recreational drugs, and prescription medications Oral Sex (blood pressure medicines, anti-depressants, anti-anxiety pills to name a few). In younger per- What Infections Can I Get from Oral Sex? sons, stress and drugs/alcohol are more likely Gonorrhea, chlamydia, HPV and even syphilis culprits. can infect your mouth and throat—and therefore A doctor needs to do a careful history and a passed on to a partner if you perform oral sex on physical that includes a neurological and genital them. Condoms may reduce the risk but are rarely exam, along with some blood tests to assess if used for oral sex. have other diseases which need to be dealt with Always make sure you get your mouth and fi rst. If everything to that point looks ok, erectile throat checked (and swabbed) when you get your dysfunction drugs can be tried to try and ease STI screening done. “performance anxiety”—a condition where you worry so much about being able to achieve an Barebacking erection, you are unable to get an erection. Erectile dysfunction drugs can be costly and What Is Barebacking? should never be used when using amyl nitrate Barebacking is the common term used to describe (poppers). Always check with your doctor before anal sex without condoms. taking to help you choose which one is right for Decreasing condom use has been the focus of you. many AIDS service organizations and this rising trend is a huge area of debate in itself. Some say that the community doesn’t fear contracting HIV STI disease like they used to, as they perceive HIV infection to be benign with all of the treatments W a r t s we have available. Others hypothesize that the abundance of public education out there has What Are Anal/Genital Warts? How Do encouraged thrill-seekers to “live on the edge.” I Know If I Have Them and How Are They Treated? What is PrEP? Anal and genital warts are caused by a virus Pre-exposure prophylaxis or PrEP is a recent called the Human Papilloma Virus (HPV), a virus development in sexual medicine which reduces which has many different strains which can have the transmission of the HIV virus. It consists of different effects on different individuals—skin HIV medication taken on a regular basis by a changes, lesions and sometimes no effect at all. non-infected person to reduce their chances of Although they are generally harmless they can contracting the virus. Although it seems to be cause lesions which could progress to cancer if quite effective, in can be costly and may cause left untreated. These changes or lesions are the adverse side effects, and therefore is not for main reason why women undergo pap smears to everyone. We also recommend the continued detect problems which could lead to cancer of the usage of condoms to prevent the transmission of cervix. Similar changes can also occur in the other STIs like syphillis, gonorrhea or anus of men who have sex with men leading to chlamydia. increased risk of anal cancer, particularly those HIV+, thus an “anal pap smear” has been Is Barebacking Riskier for the Bottom or developed. the Top? Besides increased cancer risk, the lesions are a Barebacking is likely to carry higher risk to the nuisance—and contagious. They can be treated person receiving (bottom) since the skin in the 25 Common LGBT Sexual Health Questions 445 anus and rectum is more fragile than the skin on small bulb-syringe (which can be purchased in the penis. However, the risk to the top is still sig- most large drug stores). Finally, lay a towel down nifi cant, because it only takes one small nick or to protect your sheets and to wipe your hands. scratch on the top’s genitals for the HIV virus to be transmitted if you the person you are with is What Is Anal Douching? Is It Risky? HIV positive. Anal douching is a common practice for bottom (anoreceptive) partners, usually coming from the What Infections Can I Get from Sex wish to be “clean” and prevent any “mess” that Without Condoms? may result from anal penetration. Douching is Preventing infection is the main reason why con- certainly not necessary before or after anal sex, doms are recommended for use. Some of these and many couples don’t bother. Those who infections like gonorrhea, chlamydia and ordi- choose to douche can use female douching prod- nary urinary tract infections can be cured with ucts or enema kits (insertion of water into the antibiotics but if left undetected can cause serious colon by tubing). The easiest to transport and use illness or damage. Other infections like hepatitis, are probably the bulb syringes, soft plastic ball- HIV, and herpes are chronic infections and can- shaped devices with a hard plastic tip designed to not be cured—despite having treatments to con- rinse the rectum with water. Lubricate the tip well trol these infections, the best treatment is still and insert into the rectum, rinsing several times prevention. before sex. The small amount of water used is less irritating and less likely to cause long-term Why Should I Get Hepatitis Vaccines? problems. Viral hepatitis is a group of viruses that cause Frequent douching in theory can lead to con- infl ammation of the liver. They are transmitted stipation. It should be warned that douching may through your digestive tract or through your cause minor irritation or even trauma (cuts or blood. Some cause acutely to become quite sick scratches) that facilitate HIV or hepatitis and then you recover while others can cause transmission. ongoing (chronic) infections which can have seri- The prepared female douches should be ous health consequences and put you at risk for avoided since they often contain scents and other cancer. Two forms of viral hepatitis, A and B, chemicals designed to make a woman feel more have vaccines which can prevent you from catch- “fresh.” (In fact, many gynecologists will recom- ing it if exposed. Hepatitis C, a chronic virus, mend that women avoid them as well.) currently has no vaccine. Why Does It Hurt When I (Receive) Anal Sex? Sexual Activity Pain during anal sex is something to pay attention to as it can sometimes be a warning Anal Sex sign that something “down there” isn’t right. Or sometimes the anus may just be too tight to How Should I Prepare for Anal Sex allow penetration by your partner. So the Mess Is Minimal? If tightness is the issue, the key is to relax and Firstly, mess is normal. It usually cannot be become comfortable—take your time. Squeezing avoided. So have a towel handy. That being said, or bearing-down with your sphincter (for as long if you want to minimize the mess go to the toilet as you can hold it) just prior to insertion may before sex then gently clean the anus and rectum fatigue the muscle and allow easier entry. Some with soap and water. Prepackaged moist wipes guys will use muscle relaxants they buy from work better but are costly. Additionally, some pharmacies. The benefi t from this is minimal and men choose to anal douche (clean stool out of the has drowsiness as a major side effect. Some peo- rectum) using either a shower attachment or a ple use alcohol to relax before sex which may 446 K. Loukes help, however you don’t want your sex life to Of course injury is still possible should too depend on alcohol. In addition, should you drink much force occur leading to injury, resulting in too much, while intoxicated you may cause tearing and bleeding. Always make sure that injury that you are not aware during sex. before taking anything into your rectum, it is big Remember that excessive alcohol use can also enough to stretch around that object, otherwise impair your judgement around safe sex practices serious injury may occur. The ability to fi st safely and other safety issues. actually takes months to years of gentle stretch- Physical examination by a medical provider ing to be able to accommodate something as wide will rule out anything that might be causing pain in diameter as a fi st. in your rectum. Then start anal activities with your partner, using plenty of lubrication, insert- Oral Sex ing small things like fi ngers to begin with. Build up gradually to larger items, using discomfort as What Can I Do to Avoid Gagging During your guide: if it hurts, stop and try something Oral Sex? smaller again. Eventually you will train your A common problem is the gag refl ex (medically body to be able to take larger items, including known as the pharyngeal refl ex) and a frequent your partner’s penis. complaint by partners trying to perform oral sex on their partners. Some people have very brisk What Is a Butt Plug? refl exes while others have none. You gag when The word “plug” is not a plug to hold things in, the sides and back of your throat are touched by like one in a sink. A butt plug is a sex toy simi- something other than the swallowing of food. lar to a dildo; it is often bulb-shaped, tapered (This is why some people stick their fi ngers in into a smaller tip. It can be used for anal stimu- their throats when they want to vomit.) This is lation or to gently stretch the rectum in prepa- to protect you from choking on food or other ration for penetration and/or intercourse. It is objects which are not supposed to be in your important to only use one shaped in such a way mouth. that it can’t be lost inside the rectum (like hav- So avoiding contact with these areas in your ing a wide, fl at base). Should you experience throat is key so try repositioning fi rst. The impor- pain or bleeding, you should immediately stop tant thing is to keep the penis centered in your and follow up with a doctor if the pain or bleed- mouth to avoid touching the gag areas. One ing persists. largely successful strategy is to lie on your back with the head hanging over the edge of the bed, Fisting so that the neck and head are tilted backwards. (This is a position similar to that used by sword What Is Fisting? Is It Dangerous? swallowers!). Other positions may work too so Fisting is a sexual activity where a partner inserts experiment to fi nd which ones are best. their fi st into the other person’s rectum. While Throat sprays and lozenges with topical anes- this seems dangerous, the lining of the rectum is thetic in them, marketed to treat sore throats, can actually quite resistant and tough; it has to be as also be useful. These work by numbing your its primary function is for storage and passage of throat, and therefore decrease activation of the stool. Your rectum and lower bowel is basically a gag refl ex. The down side is that you can’t feel or hose-shaped layer of special membrane that taste anything, two potential motivators for per- absorbs water from what you have eaten. This forming oral sex in the fi rst place. You may also membrane or mucosa is surrounded by layers of inadvertently numb your partner's penis. muscle and tissue that propel the waste through. Lastly, concentrating on the part of the penis This makes for a relatively tough, resistant you can get into your mouth without gagging. structure. This is the most sensitive part of the penis any- 25 Common LGBT Sexual Health Questions 447 way, especially the head (glans). Use of the hands Female Questions can compliment oral stimulation and feel nice for the receiving without having to swallow his General Health whole erection. Vaginal Cleaning Cock-Rings What Are the Facts About Vaginal What Are Cock Rings? Are they Dangerous Douching? Is It Bad for Me? and Could Cause Damage? Douching is the practice of cleansing out the vagi- “Cock rings” are ring-shaped objects designed to nal area with liquid for the purpose of cleaning or encircle the penile base and scrotum, retaining removal of odor. Products can be purchased in the blood in the penis and therefore maximizing pharmacy or some women will make their own erections (by keeping the blood inside the (using things like vinegar, baking soda, soaps and expandable tissues causing the penis to stay fragrances). The practice seems to have a bit of a engorged and stiff). They also stimulate these controversial and stormy past, especially due to sensitive areas and enhance pleasure for many links to pelvic infl ammatory disease, ectopic men. pregnancy and other possible problems including Like anything, cock rings can be dangerous if the increased risk of getting an STI. It has also not used properly. Since they act by strangulating been linked to Bacterial Vaginosis, a common and the penis, it also restricts new blood from enter- treatable vaginal infection in women. ing and prolonged use of cock rings can cause In woman who have sex with women (WSW) damage to the nerves and blood vessels. (Imagine there is much less known. In general, most gyne- wrapping a tight elastic band around your hand.) cologists recommend against the practice They should therefore be used carefully, ensuring because of the above reasons. If you want to they are not too tight, and only for short periods clean your vagina, the best practice is gentle at a time. application with warm water. If soap must be used, a small amount of a simple, unscented soap Poppers is best.

What Are Poppers? Do They Really Help Breast Cancer with Anal Sex? And Are They Safe? “Poppers” is the layman’s term for amyl nitrate, Why Should I Be Concerned About Breast a chemical that is sold as a liquid and inhaled as Cancer? What Should I Be Doing? vapor. To avoid attention, it is often sold as Studies have shown that WSW (women who have room deodorizers or leather cleaner. (Amyl sex with women) have higher rates of breast cancer, nitrate is actually good for neither.) Like many likely because of lowered screening rates and the nitrogen- based chemicals or drugs, it causes presence of risk factors. It has been shown that les- smooth muscle in the body to relax—including bians are less likely to see their doctor out of fear of the muscles which surround your anus and rec- discrimination, money/insurance issues or previous tum (sphincter muscles). This can help bad experiences with health care providers (HCP). bottoming. WSW also tend to cluster some known or suspected Most common side effects include dizziness, risk factors for the cancer like overweight/obesity, headache and erectile dysfunction. It can burn if non-use of oral contraceptive pills, alcohol, and spilled on the skin. It some rare cases it can cause later-in-age pregnancies. Some woman are also serious eye damage or heart problems. It should higher risk due to genetic traits or family histories. never be combined with erectile dysfunction Know your breasts and report any changes imme- drugs like Viagra and Cialis as this can cause diately to your HCP. Average risk women between serious drops in blood pressure. the age of 50 and 74 should be receiving mammo- 448 K. Loukes grams (a special x-ray of the breast) every two years. easily treated and cured with antibiotics. Exactly Ultrasound screening may also be requested by your how or why some women get this infection is HCP if there are specifi c concerns. unclear but according to the CDC website some activities like douching, frequent vaginal sex or multiple partners may increase your risk. STI BV is mostly risky because it may increase your risk of catching STIs—particularly HSV, STIs and WSW HIV, gonorrhea, and chlamydia. Or can cause problems if occurs during a pregnancy. What Sexually Transmitted Infections Are WSW at Risk for? Trichomoniasis WSW sexual activity is generally considered low risk and infections are seen at much lower rates What Is Trichomoniasis ? than other women. Any STI is still possible, par- Trichomoniasis, commonly called “trich”, is ticularly if there is a history of sex with men— such caused by an organism called trichomonas vagi- as HIV, herpes, warts, gonorrhea, syphilis, tricho- nalis, a parasite that usually lives in the vagina, moniasis, chlamydia, hepatitis. Periodic screening urethra or on the vulva. In men, it can inhabit the should be based on past history with men, other inside of the penis of urethra. Vaginal sex with specifi c risk factors like IV drug use or developing male partners are the main source of infection, any suspicious symptoms. although some experts believe that it can be spread vagina to vagina. HIV Most people with infection do not have symptoms and know they have it. It can elevate your What Is the HIV Risk for Women (Who risk for HIV and other STIs and should therefore Have Sex with Women)? be treated if discovered. Women who have sex with women (WSW) are at less risk for HIV contraction through sexual Oral Sex activity. There are no well-documented cases to date of HIV transmission from woman to woman What Infections Can I Get from Receiving through sex. HIV infection generally occurs in Oral Sex? the WSW community through needle-sharing It is unclear exactly how risky this activity is, and sex with infected men. And there may be although it is considered to be much less than some hypothetical risk with sharing of toys. sexual activity with men. Any infections present HIV virus is also present in menstrual blood on your partner’s face or inside her mouth and so this may increase your risk of infection if throat may be transmitted to your genitals and exposed, particularly if you have open sores or cause infection. Herpes (cold sores) of the face cuts. Protect yourself and minimize your risk: are a particular concern, although in theory gon- avoid menstrual blood, do not share needles, use orrhea and chlamydia can be spread as well. condoms when sleeping with men, and always properly clean toys before using or sharing. Sexual Activity Bacterial Vaginosis Female Ejaculation What Is Bacterial Vaginosis? How Do You Get It? Why Do Some Women Produce a Lot Bacterial Vaginosis, or BV, is a common vaginal of Liquid When They Orgasm? infection where the wrong bacteria overpowers Female ejaculation is a subject of debate in the healthy background bacteria causing symptoms medical community—both gynecologists and like discharge, odor, itching and/or burning. It is urologists cannot seem to agree. Men have glands 25 Common LGBT Sexual Health Questions 449 like the prostate gland that produce most of their express that, while your “sex” is what is assigned fl uid on ejaculation, but women lack these or to you based on what you were born with. anything similar. Because of this, some experts Most people have gender identities and sexes will argue that a large female ejaculation has to that match—someone who identifi es as female be the involuntary release of urine. There is con- and was born with a female body for example. fl icting evidence around this (minimal research However, if you feel like your “insides” do not exists at all, actually). match your “outsides”—then you fi t the “trans- Why some women do and others do not is part gender” label, whether or not you choose to of the mystery. But it’s important to remember express it. that while people have similar blueprints, we all function a bit differently. Like men, when women orgasm the difference in the amount of fl uid pro- STI duced can vary greatly, from none at all to volu- mous amounts—all of which is normal. Can Transgender Persons Get Infections from Sex? Vaginal Dryness Infections do not discriminate. You can get any STI like anyone else—depending on who your Why Do I Have a Problem with Vaginal partners are, what you are doing with them, and Dryness and What Can I Do? what your current anatomy is. Vaginal lubrication varies between women but also decreases as women age, especially during and after menopause. This is caused by decreased Genderless Questions hormone levels in the body. A doctor should do a regular check-up including a quick exam to Relationship ensure there are no vaginal problems and your overall health is good. What Is an Open Relationship? Hormone Replacement Therapy (HRT) can be Open relationships are agreements between two helpful for vaginal dryness by replacing these partners where other sexual partners are permit- hormones, but at the current time it is not as pop- ted. Many couples have these understandings but ular since it might be more harmful for women develop certain rules around when it can occur than once thought (linked to increases in heart (i.e. only when traveling, no barebacking, one- disease, stroke and breast cancer). Local hor- time only, etc.). A 2010 study reported 45 % of mone creams might be a safer option, but good San Francisco couples were in agreed monoga- old-fashioned lubrication should be tried fi rst. mous relationships. Some lubrication can be irritating, so avoid those containing nonoxyl and glycerine (glycerol). Both chemical compounds have frequently S T I s caused problems for women. H e r p e s

Trans/Other Gender Can I Get Genital Herpes from Someone’s Lips? General Health Yes. Oral herpes or “cold sores” is caused by a variant of the virus that causes genital herpes and Am I Transgender? is called “herpes simplex virus” or HSV for short. Yes, if your gender identity does not match your HSV 1 is found mostly on the face and/or mouth, assigned sex. Gender identity is how you iden- while HSV 2 is a virus typically seen on the tify based on how you feel inside and how you genitals or anus. But both viruses have the same 450 K. Loukes ability to penetrate sensitive tissues, so both can Crabs pubic lice affect either place. Cunt vagina (usually considered to be offensive) While generally not harmful, the worst part Cum/Cumming ejaculation about herpes is that there is no cure. Most of the Dick penis time it is not visible and hides in your nervous Dry-humping rubbing against your partner system, periodically reappearing as blister-like with your clothes on lesions in the affected area. Caution should be Fingering stimulating and/or inserting a digit used if you’re having an outbreak, or if you feel into the anus or vagina the presence of one coming on, since most people Fisting inserting a fi st into the rectum or vagina during sexual play complain of tingling or discomfort in the area Fuck/Fucking penetrative sex prior to it’s appearance. Barriers such as con- Getting off reaching orgasm doms or dental dams and abstinence during Head oral sex, usually on the penis break-outs are the best ways of minimizing the Hand Job physical manipulation of the penis transmission of herpes. Jack off/Jerking off physical manipulation of If you or your partners have herpes, know that the penis there are medications available that you can take to Jism (sometimes spelled Gism) ejaculate treat outbreaks (decrease the duration of your Lube lubrication used for sexual penetration “fl are”) or even prevent them happening (suppres- Nuts testicles sion). This may help reduce infecting others as well. PNP or Party and Play refers to having sex under the infl uence of drugs, usually methamphetamine Glossary: Common Slang Poppers amyl nitrate or similar chemical, inhaled to relax the anal sphincter muscles or Ass/Asshole anus induce pleasure Bag scrotum Pussy vulva/vagina Barebacking having anal sex without condoms Rimming anal cunilingus or licking the anus Blowing/Blow job performing oral sex on the Sack/Nut-Sack scrotum penis Seeding ejaculating inside the receptive partner Boner erection Sucking off performing oral sex on the penis Bottom/Bottoming the sexual partner who Taint perineum receives penetration, usually referring to males Tits breasts Box vagina Top/Topping the sexual partner who penetrates, Clap gonorrhea usually referring to males Cock penis Toys sexual aids usually used for stimulation, Cock-Ring Ring or band wrapped around the like dildos, nipple clamps, etc. base of the penis and scrotum Twat vagina/vulva Appendix A: Chapter Learning Objectives in Competency-Based Medical Education

Kristen L. Eckstrand

Competency-based medical education (CBME) taxonomy of competency domains for the as an educational framework utilizing teaching health professions and competencies for phy- curricula and assessments supporting the acquisi- sicians. Acad Med. 2013;88(8):1088–94. tion of health practitioner’s competence in clini- 2. Eckstrand KL, Leibowitz SL, Potter J, Dreger cal practice. General physician competencies are AD. Professional competencies to improve already described [1], and have been adapted by health care for people who are or may be LGBT, the Association of American Medical Colleges gender nonconforming, and/or born with (AAMC) Advisory Committee on Sexual DSD. In: Hollenbach A, Eckstrand KL, Dreger Orientation, Gender Identity, and Sex AD, editors. Implementing curricular and insti- Development to describe the key features of tutional climate changes to improve health care competence in caring for individuals who are les- for individuals who are LGBT, gender noncon- bian, gay, bisexual, and transgender (LGBT), forming, or born with DSD: a resource for med- gender nonconforming, and/or born with a differ- ical educators. Washington, DC: Association of ence of sex development (DSD) [2]. American Medical Colleges; 2014. The learning objectives in this book are mapped to the Professional Competencies to Improve Health Care for People Who Are or May Professional Competencies Be LGBT, Gender Nonconforming, and/or Born to Improve Health Care for People with DSD. This is denoted in each chapter next to Who Are or May Be LGBT, each learning objective using the following Gender Nonconforming, abbreviations for the competency domains: and/or Born With DSD

• KP = Knowledge for Practice AAMC Advisory Committee on Sexual • PC = Patient Care Orientation, Gender Identity, and Sex • PBLI = Practice-Based Learning and Development Improvement • ICS = Interpersonal and Communication Competency Domain: Patient Care Skills Gather essential and accurate information about • Pr = Professionalism patients and their conditions through history tak- • SBP = Systems-Based Practice ing, physical examination, and the use of labora- • IPC = Interprofessional Collaboration tory data, imaging, and other tests by: • PPD = Personal and Professional Development 1. Sensitively and effectively eliciting relevant 1. Englander R, Cameron T, Ballard AJ, Dodge information about sex anatomy, sex development, J, Bull J, Aschenbrener CA. Toward a common sexual behavior, sexual history, sexual orientation,

© Springer International Publishing Switzerland 2016 451 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4 452 Appendix A: Chapter Learning Objectives in Competency-Based Medical Education

sexual identity, and gender identity from all populations described above (e.g., screening all patients in a developmentally appropriate individuals for inter-partner violence and abuse; manner. assessing suicide risk in all youth who are gender 2. Performing a complete and accurate physical nonconforming and/or identify as gay, lesbian, exam with sensitivity to issues specifi c to the bisexual and/or transgender; and conducting individuals described above at stages across screenings for transgender patients as appropriate the lifespan. This includes knowing when par- to each patient’s anatomical, physiological, and ticulars of the exam are essential and when behavioral histories). they may be unnecessarily traumatizing (as may be the case, for example, with repeated Competency Domain: Knowledge genital exams by multiple providers). for Practice Apply established and emerging biophysical sci- Make informed decisions about diagnostic entifi c principles fundamental to health care for and therapeutic interventions based on patient patients and populations by: information and preferences, up-to-date scientifi c evidence, and clinical judgment by: 1. Defi ning and describing the differences among: sex and gender; gender expression and gender 3. Describing the special health care needs and identity; gender discordance, gender noncon- available options for quality care for transgen- formity, and gender dysphoria; and sexual ori- der patients and for patients born with DSD entation, sexual identity, and sexual behavior. (e.g., specialist counseling, pubertal suppres- 2. Understanding typical (male and female) sex sion, elective and nonelective hormone thera- development and knowing the main etiologies pies, elective and nonelective surgeries, etc.) of atypical sex development. 3. Understanding and explaining how stages of Counsel and educate patients and their fami- physical and identity development across the lies to empower them to participate in their care lifespan affect the above-described popula- and enable shared decision-making by: tions and how health care needs and clinical practice are affected by these processes. 4. Assessing unique needs and tailoring the physical exam and counseling and treatment Apply principles of social–behavioral sci- recommendations to any of the individuals ences to the provision of patient care, including described above, taking into account any spe- assessment of the impact of psychosocial and cul- cial needs, impairments, or disabilities. tural infl uences on health, disease, care seeking, 5. Recognizing the unique health risks and chal- care compliance, and barriers to and attitudes lenges often encountered by the individuals toward care by: described above, as well as their resources, and tailoring health messages and counseling 4. Understanding and describing historical, polit- efforts to boost resilience and reduce high-risk ical, institutional, and sociocultural factors that behaviors. may underlie health care disparities experienced by the populations described above. Provide health care services to patients, families, and communities aimed at preventing health Demonstrate an investigatory and analytic problems or maintaining health by: approach to clinical situations by:

6. Providing effective primary care and anticipatory 5. Recognizing the gaps in scientifi c knowledge guidance by utilizing screening tests, preventive (e.g., effi cacy of various interventions for interventions, and health care maintenance for the DSD in childhood; effi cacy of various inter- Appendix A: Chapter Learning Objectives in Competency-Based Medical Education 453

ventions for gender dysphoria in childhood) 1. Developing rapport with all individuals and identifying various harmful practices (patient, families, and/or members of the (e.g., historical practice of using “reparative” health care team) regardless of others’ gender therapy to attempt to change sexual orienta- identities, gender expressions, body types, tion; withholding hormone therapy from sexual identities, or sexual orientations, to transgender individuals) that perpetuate the promote respectful and affi rming interper- health disparities for patients in the popula- sonal exchanges, including by staying current tions described above. with evolving terminology. 2. Recognizing and respecting the sensitivity of Competency Domain: Practice-Based certain clinical information pertaining to the Learning and Improvement care of the patient populations described Identify strengths, defi ciencies, and limits in above, and involving the patient (or the guard- one’s knowledge and expertise by: ian of a pediatric patient) in the decision of when and how to communicate such informa- 1. Critically recognizing, assessing, and develop- tion to others. ing strategies to mitigate the inherent power imbalance between physician and patient or Demonstrate insight and understanding about between physician and parent/guardian, and emotions and human responses to emotions that recognizing how this imbalance may negatively allow one to develop and manage interpersonal affect the clinical encounter and health care out- interactions by: comes for the individuals described above. 2. Demonstrating the ability to elicit feedback 3. Understanding that implicit (i.e., automatic from the individuals described above about or unconscious) bias and assumptions about their experience in health care systems and sexuality, gender, and sex anatomy may with practitioners, and identifying opportuni- adversely affect verbal, nonverbal, and/or ties to incorporate this feedback as a means to written communication strategies involved improve care (e.g., modifi cation of intake in patient care, and engaging in effective cor- forms, providing access to single-stall, rective self refl ection processes to mitigate gender- neutral bathrooms, etc.). those effects. 4. Identifying communication patterns in the Locate, appraise, and assimilate evidence health care setting that may adversely affect from scientifi c studies related to patients’ health care of the described populations, and learn- problems by: ing to effectively address those situations in order to protect patients from the harmful 3. Identifying important clinical questions as effects of implicit bias or acts of they emerge in the context of caring for the discrimination. individuals described above, and using technology to fi nd evidence from scientifi c studies Competency Domain: Professionalism in the literature and/or existing clinical guide- Demonstrate sensitivity and responsiveness to a lines to inform clinical decision making and diverse patient population, including but not lim- improve health outcomes. ited to diversity in gender, age, culture, race, religion, disabilities, and sexual orientation by: Competency Domain: Interpersonal and Communication Skills 1. Recognizing and sensitively addressing all Communicate effectively with patients, families, and patients’ and families’ healing traditions and the public, as appropriate, across a broad range of beliefs, including health-related beliefs, and socioeconomic and cultural backgrounds by: understanding how these might shape reac- 454 Appendix A: Chapter Learning Objectives in Competency-Based Medical Education

tions to diverse forms of sexuality, sexual the individuals described above (e.g., tar- behavior, sexual orientation, gender identity, geted smoking cessation programs, substance gender expression, and sex development. abuse treatment, and psychological support). 3. Identifying and partnering with community Demonstrate respect for patient privacy and resources that provide support to the indi- autonomy by: viduals described above (e.g., treatment centers, care providers, community activists, 2. Recognizing the unique aspects of conﬁ denti- support groups, legal advocates) to help ality regarding gender, sex, and sexuality eliminate bias from health care and address issues, especially for the patients described community needs. above, across the developmental spectrum, and by employing appropriate consent and Participate in identifying system errors and assent practices. implementing potential systems solutions by:

Demonstrate accountability to patients, soci- 4. Explaining how homophobia, transphobia, ety, and the profession by: heterosexism, and sexism affect health care inequalities, costs, and outcomes. 3. Accepting shared responsibility for eliminat- 5. Describing strategies that can be used to enact ing disparities, overt bias (e.g., discrimina- reform within existing health care institutions tion), and developing policies and procedures to improve care to the populations described that respect all patients’ rights to above, such as forming an LGBT support net- self-determination. work, revising outdated nondiscrimination 4. Understanding and addressing the special and employee benefi ts policies, developing challenges faced by health professionals who dedicated care teams to work with patients identify with one or more of the populations who were born with DSD, etc. described above in order to advance a health care environment that promotes the use of Incorporate considerations of cost awareness policies that eliminate disparities (e.g., and risk-benefi t analysis in patient and/or employee nondiscrimination policies, com- population- based care by: prehensive domestic partner benefi ts, etc.). 6. Demonstrating the ability to perform an Competency Domain: Systems-Based appropriate risk/benefi t analysis for interven- Practice tions where evidence-based practice is lack- Advocate for quality patient care and optimal ing, such as when assisting families with patient care systems by: children born with some forms of DSD, families with prepubertal gender nonconforming 1. Explaining and demonstrating how to navi- children, or families with pubertal gender gate the special legal and policy issues (e.g., nonconforming adolescents. insurance limitations, lack of partner benefi ts, visitation and nondiscrimination policies, dis- Competency Domain: Interprofessional crimination against children of same-sex par- Collaboration ents, school bullying policies) encountered by Work with other health professionals to establish the populations described above. and maintain a climate of mutual respect, dignity, diversity, ethical integrity, and trust by: Coordinate patient care within the health care system relevant to one’s clinical specialty by: 1. Valuing the importance of interprofessional communication and collaboration in provid- 2. Identifying and appropriately using special ing culturally competent, patient-centered resources available to support the health of care to the individuals described above and Appendix A: Chapter Learning Objectives in Competency-Based Medical Education 455

participating effectively as a member of an 1. Critically recognizing, assessing, and develop- interdisciplinary health care team. ing strategies to mitigate one’s own implicit (i.e., automatic or unconscious) biases in pro- Competency Domain: Personal viding care to the individuals described above and Professional Development and recognizing the contribution of bias to Practice ﬂ exibility and maturity in adjusting to increased iatrogenic risk and health change with the capacity to alter one’s behavior by: disparities. Appendix B: Glossary of Terms

Carolina Ornelas and Laura Potter

Term Defi nitiona Androgyne Someone whose gender identity is both male and female, or neither male nor female. A person might present as androgynous, and/or as sometimes male and sometimes female, and might choose to use an androgynous name. Pronoun preference typically varies, including alternately using male or female pronouns, using the pronoun that matches the gender presentation at that time, or using newly developed gender-neutral pronouns (e.g., hir, zie). Autogynephilic Being sexually aroused by the thought or image of oneself as a woman. Behaviorally Women who have sex with both men and women. bisexual women Beyond binary See “Gender bender”. Bi-gender See “Gender bender”. Birth defect Some people who suffer or have suffered with gender dysphoria may refer to their medical condition as a “birth defect” or a “variation from the norm”. Bisexual One whose sexual or romantic attractions and behaviors are directed at members of both sexes to a signifi cant degree. Body mass index A statistical measure of the weight of a person scaled according to height, used to estimate whether a person is underweight or overweight. BMI is weight in kilograms divided by the square of height in meters (kg/m2 ). Boi/tranny-boi People assigned female sex at birth who feel that “female” is not an accurate or complete description of who they are. Other similar terms include “Butch”, “Boychick”, “Shapeshifter”, and “Boss Grrl”. Bottom surgery See “Surgery”. Cisgender, People whose gender identity and gender expression align with their assigned sex at birth (i.e., cissexual the sex listed on their birth certifi cates). Cisgender is a newer term that some people prefer when writing and speaking about transgender and non-transgender people, with the non-transgender people being referred to as “cisgender”. In this manner, a transgender person is not singled out as being different or not normal. A similar pair of words is “cissexual” and “transsexual”. Coming out The process of accepting and disclosing one’s theretofore hidden gender identity, gender affi rmation, or sexual orientation. Cross-dresser People who wear clothing, jewelry, and/or make-up or adopt behaviors not traditionally or stereotypically associated with their anatomical sex, and who generally have no intention or desire to change their anatomical sex. Cross-dressing is more often engaged in on an occasional basis and is not necessarily refl ective of sexual orientation or gender identity. Reasons for engaging in cross-dressing may include a need to express femininity/masculinity, artistic expression, performance (e.g., drag queen/king), or erotic enjoyment. Note: In the case of persons coming to terms with their gender dysphoria, they may start wearing clothing that matches their gender identity, which some people mistakenly say is the “cross-dressing phase” of their coming out process. These people are not cross-dressing and, therefore, should not be referred to as cross-dressers, because they are wearing the clothing that matches their gender identity. (continued)

© Springer International Publishing Switzerland 2016 457 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4 458 Appendix B: Glossary of Terms

(continued) Term Defi nitiona Differences of A spectrum of conditions involving anomalies of the sex chromosomes, gonads, reproductive sex development ducts, and/or genitalia. The most traditional defi nition of intersex refers to individuals born with (DSD) both male and female genitalia, genitalia that vary from typical male or female genitalia, or a chromosomal pattern that varies from XX (female) or XY (male). A person may have elements of both male and female anatomy, have different internal organs than external organs, or have anatomy that is inconsistent with chromosomal sex. This condition is sometimes not identifi ed until puberty, when the person either fails to develop certain expected secondary sex characteristics, or develops characteristics that were not expected. According to the DSM- IV-TR, Gender Identity Disorder is not an appropriate diagnosis when a strong and persistent cross-gender identifi cation is concurrent with a physical intersex condition. However, people born with certain intersex conditions may be more likely than the general population to feel their gender assignment at birth was incorrect. The term “disorders of sex development” (DSD) is currently recommended where the medical care of infants is considered. Sometimes written as “disorders of sexual development” or “disorders of sex differentiation”. These terms are controversial and not widely accepted. Some people suggest that a better term is “variation in sex development” or “variability in sex development” (VSD), thus eliminating the negative connotation of the word “disorder”. Some people suggest that gender-dysphoric people may be intersex or have a variation in sex development because their anatomical sex does not match their gender identity, perhaps as a result of cross brain feminization or masculinization. Discrimination Differential treatment of a person because of group membership, such as sexual- or gender- minority status. Drag king An anatomical female who cross-dresses as male primarily for performance or show. Drag kings generally identity as female and do not wish to change their anatomical sex. The term is sometimes used as an insult toward a transman. Drag queen An anatomical male who cross-dresses as a woman primarily for performance or show. Drag queens generally identity as male and do not wish to change their anatomical sex. The term is sometimes used as an insult toward a transwoman. Facial See “Surgery”. feminization surgery (FFS) Female to male See “Transman”. (FTM) Gay An attraction and/or behavior focused exclusively or mainly on members of the same sex or gender identity; a personal or social identity based on one’s same-sex attractions and membership in a sexual-minority community. Gender Many people view their coming out as an affi rmation of the gender identity they have always affi rmation had, rather than a transition from one gender identity to another. They may prefer to call themselves “affi rmed females” (or just “females”) or “affi rmed males” (or just “males”) rather than “transgender” or “transsexuals” because the “trans” prefi x suggests they have changed, rather than accepted, their true gender identity. This is consistent with the concept that people do not need to have any surgery in order to affi rm their gender. Related terms are “process of gender affi rmation”; “gender-affi rmed female” (or just “affi rmed female”); and “gender- affi rmed male” (or just “affi rmed male”). Gender bender Any gender variation other than the traditional, dichotomous view of male and female. People who self-refer with these terms may identify and present themselves as both or alternatively male and female, as no gender, or as a gender outside the male/female binary. Similar terms include “bi-gender”, “beyond binary”, “gender fl uid”, “gender outlaw”, “pan gender”, “polygender”. Gender See “Surgery”. confi rmation surgery (GCS) (continued) Appendix B: Glossary of Terms 459

(continued) Term Defi nitiona Gender Distress resulting from confl icting gender identity and sex of assignment. Some people prefer dysphoria this term over “gender identity disorder” because it has a less stigmatizing impact. Gender The external manifestation of a person’s gender identity, which may or may not conform to the expression socially- and culturally-defi ned behaviors and external characteristics that are commonly referred to as either masculine or feminine. These behaviors and characteristics are expressed through carriage (movement), dress, grooming, hairstyles, jewelry, mannerisms, physical characteristics, social interactions, and speech patterns (voice). Gender fl uid See “Gender bender”. Gender identity A person’s innate, deeply-felt psychological identifi cation as a man, woman, or something else, which may or may not correspond to the person’s external body or assigned sex at birth (i.e., the sex listed on the birth certifi cate). “Sexual identity” should not be used as a synonym for, or as inclusive of, “gender identity”. Gender identity According to DSM-IV-TR, Gender Identity Disorder is the diagnosis used when a person has disorder (GID) (1) a strong and persistent cross-gender identifi cation and (2) persistent discomfort with his or her sex or sense of inappropriateness in the gender role of that sex, and the disturbance (2) is not concurrent with physical intersex condition and (4) causes clinically signifi cant distress or impairment in social, occupational, or other important areas of functioning. According to DSM-IV-TR, gender identity disorder not otherwise specifi ed can be used for persons who have a gender identity problem with a concurrent congenital intersex condition. Many people prefer the term “gender dysphoria”, developed in an attempt to eliminate the negative connotation of the word “disorder”; however, some people fi nd “dysphoria” to have a negative connotation as well. Gender minority A term to describe people whose gender expression and/or gender identity does not match traditional societal norms. “Sexual minority” should not be used as a synonym for, or as inclusive of, “gender minority”. Gender A term to describe people whose gender expression is (1) neither masculine nor feminine or (2) non-conforming different from traditional or stereotypic expectations of how a man or woman should appear or behave. Gender outlaw See “Gender bender”. Gender See “Surgery”. reassignment surgery (GRS), gender realignment surgery (GRS) Gender role The extent to which an individual’s gender expression adheres to the cultural norms prescribed conformity for people of his or her sex. Gender role Nonconformity with prevailing norms of gender expression. nonconformity Gender/gender The traditional or stereotypical behavioral differences between men and women, as defi ned by role the culture in which they live, in terms of, among other things, their gender expressions, the careers they pursue, and their duties within a family. Genderqueer An umbrella term that includes all people whose gender varies from the traditional norm, akin to the use of the word “queer” to refer to people whose sexual orientation is not heterosexual only; or a term to describe a subset or individuals who are born anatomically female or male, but feel their gender identity is neither female nor male. Gender-variant Children who are gender role nonconforming. children (continued) 460 Appendix B: Glossary of Terms

(continued) Term Defi nitiona Genital See “Surgery”. reassignment surgery (GRS), genital reconstruction surgery (GRS), genital surgery (GS) Getting clocked/ When people are not perceived as the gender they are presenting (e.g., based on their dress and read/spooked mannerisms matching according to social norms). For example: an anatomical male dressed as a female who is perceived by others as male (e.g., a stranger says “that’s a man in a dress”), or a transman who is perceived as a woman. Hermaphrodite Previously used to describe intersex; now considered pejorative and outdated. Heterosexual A term to describe individuals who identify as “straight” or whose sexual or romantic attractions and behaviors focus exclusively or mainly on members of the other sex or gender identity. Homophobia The various manifestations of sexual stigma, sexual prejudice, and self-stigma based on one’s homosexual or bisexual orientation. Homosexual As an adjective, used to refer to same-sex attraction, sexual behavior, or sexual orientation identity; as a noun, used as an identity label by some persons whose sexual attractions and behaviors are exclusively or mainly directed to people of their same sex. Intersectionality A theory used to analyze how social and cultural categories intertwine. Intersex See “Differences of sex development” Intimate partner Physical, sexual, or psychological harm infl icted by a current or former partner or spouse. violence Lesbian As an adjective, used to refer to female same-sex attraction and sexual behavior; as a noun, used as a sexual orientation identity label by women whose sexual attractions and behaviors are exclusively or mainly directed to other women. LGBT Acronym for “lesbian, gay, bisexual, and transgender”. LGBTIQQAA One of numerous variations of the basic LGBT acronym used by some people in order to be more inclusive, with “I” for intersex, “Q” for queer and/or questioning, and “A” for asexual and/or ally. Lower surgery See “Surgery”. Male to female See “Transwoman”. (MTF) Neo-vagina The technical term for when a vagina is surgically created. This term is suitable for use when having a discussion with another medical professional, but it is not a term that should be used with a client during routine offi ce visits or routine gynecological examinations. A clinician need not remind a female client that she has a neo-vagina and may instead simply say “vagina”. Nulliparity The condition of being nulliparous, or not bearing offspring. Outing The unauthorized disclosure by one person of another person’s theretofore hidden gender identity, gender affi rmation, or sexual orientation. Pan gender See “Gender bender”. Passing When people are perceived as the gender they are presenting in (e.g., based on their dress and mannerisms matching according to social norms). For example: an anatomical male dressed as a female who is perceived by others as female, or a transman who is perceived as a man. Polygender See “Gender bender”. (continued) Appendix B: Glossary of Terms 461

(continued) Term Defi nitiona Queer In contemporary usage, an inclusive, unifying sociopolitical, self-affi rming umbrella term for people who are gay; lesbian; bisexual; pan-sexual; transgender; transsexual; intersexual; genderqueer; or of any other nonheterosexual sexuality, sexual anatomy, or gender identity. Historically, a term of derision for gay, lesbian, and bisexual people. Real life Generally accepted guideline, from the Standards of Care for Gender Identity Disorders, that experience requires clients to live outwardly in the gender that matches their gender identity for a specifi ed (RLE), real life period of time (typically 1 year) prior to being eligible for genital surgery. Less often referred to test (RLT) as the “real life test” (RLT), which is considered a misleading and offensive term and, therefore, should be avoided. Serostatus (HIV Blood test results indicating the presence or absence of antibodies the immune system creates to serostatus) fi ght HIV. A seropositive status indicates that a person has antibodies to fi ght HIV and is HIV-positive. Sex (1) In a dichotomous scheme, the designation of a person as birth as either “male” or “female” based on their anatomy (genitalia and/or reproductive organs) and/or biology (chromosomes and/or hormones). Sometimes “sex” and “gender” are used interchangeably. For clarity, it is better to distinguish sex, gender identity, and gender expression from each other. Sex is typically assigned at birth based on the appearance of the external genitalia; only when this appearance is ambiguous are other indicators of sex assessed to determine the most appropriate sex assignment. (2) All phenomena associated with erotic arousal or sensual stimulation of the genitalia or other erogenous zones, usually (but not always) leading to orgasm. Sex change, sex These terms are considered by some to be pejorative and, therefore, should be avoided. See change “Surgery”. operation, sex change surgery Sex The term “sex reassignment surgery” and the lesser-used term “sex realignment surgery” are reassignment increasingly falling into disuse. See “Surgery”. surgery (SRS), sex realignment surgery (SRS) Sexual minority This term describes people whose sexual orientation is not heterosexual only. Sexual A person’s enduring physical, romantic, emotional, and/or spiritual attraction to another person. orientation May be lesbian, gay, heterosexual, bisexual, pansexual, polysexual, or asexual. Sexual orientation encompasses attraction, desire, behavior, and personal and social identity but is distinct from sex, gender identity, and gender expression. Most researchers studying sexual orientation have defi ned it operationally in terms of one or more of its components. Defi ned in terms of behavior, sexual orientation refers to an enduring pattern of sexual or romantic activity with men, women, or both sexes. Defi ned in terms of attraction (or desire), it denotes an enduring pattern of experiencing sexual or romantic feelings for men, women, or both sexes. Identity encompasses both personal identity and social identity. Defi ned in terms of personal identity, sexual orientation refers to a conception of the self based on one’s enduring pattern of sexual and romantic attractions and behaviors toward men, women, or both sexes. Defi ned in terms of social (or collective) identity, it refers to a sense of membership in a social group based on a shared sexual orientation and a linkage of one’s self-esteem to that group. A person’s sexual orientation should not be assumed based on the perceived sex of that person’s partner(s). For example, a man who identifi es himself as heterosexual may have sexual relationships with men and women. “Affectional orientation” is sometimes used as a more encompassing term. Stealth When a transgender person who has transitioned into a different sex or gender does not divulge the fact of transition. When a person has gone through gender affi rmation and does not disclose that fact to others. The risk or fear of being “outed” may be very distressing to a person who is living stealth. Some people who considered themselves transgender prior to transition believe that after they transition that are no longer transgender and, therefore, no longer have anything to reveal. Many people believe the information about their medical treatments and surgeries is private and does not need to be divulged any more than anyone else divulges their medical histories to others. Clinicians need to treat such medical information with the same required degree of confi dentiality as they would for all of their other clients. (continued) 462 Appendix B: Glossary of Terms

(continued) Term Defi nitiona Stigma The inferior status, negative regard, and relative powerlessness that society collectively assigns to individuals and groups that are associated with various conditions, statuses, and attributes. Surgery Persons with gender dysphoria may or may not have surgery and, if they have surgery, they may have one or more types of surgery, depending upon their circumstances. Numerous terms are used to describe the genital surgeries that some people may undergo, including “gender affi rmation surgery” (GAS), “gender reassignment surgery” (GRS), “genital reassignment surgery” (GRS), “genital reconstruction surgery” (GRS), “genital surgery” (GS), and “sex reassignment surgery” (SRS). The foregoing terms are purposely listed in alphabetical order in view of the strong feelings some people have with respect to what is the right or better term to use; clinicians should listen to their clients to see which terms they prefer. Sometimes, though very infrequently, “realignment” is used instead of “reassignment” or “reconstruction”. “Sex reassignment surgery” is increasingly falling into disuse as many people fi nd the term offensive. In discussion with clients, all a clinical really needs to say is “genital surgery”. Some clients may prefer to use the term “bottom surgery”. Others may call this “lower surgery”, stating that they “did not have surgery on their bottoms”. It is best to ask clients what terminology they prefer. Some people may have an orchiectomy. Some people may have a hysterectomy and a bilateral salpingo-oophorectomy. Some people may have breast augmentation. “Top surgery” is a term most often used by transmen to refer to the removal of breast tissue, relocation and resizing of nipple complexes, and chest reconstruction to a male chest structure. Some people may have “facial feminization surgery” (FFS). Some people may have a chondrolaryngoplasty (“trach shave” or Adam’s apple reduction). Some people may have surgeries to alter the pitch of their voice. Surgery is not essential for some people to resolve their gender dysphoria. Moreover, for some people, surgery is a relatively minor aspect of their gender affi rmations. Some people cannot have surgery because of, among other reasons, fi nancial constraints and health reasons. In the United States, in most states and for federal government purposes, gender-affi rmed people (transsexuals) cannot get the sex marker (i.e., “male” or “female”) changed on their identity papers (e.g., birth certifi cates, drivers’ licenses) without proof of some form or surgery. In many cases, the employees of government agencies may not be familiar with the other terms discussed in this Glossary and, therefore, clinicians may have no choice but to use the term “sex reassignment surgery” in any affi davits they sign for submission to the agencies. A few states, such as Massachusetts and New Jersey, will allow changes to drivers’ licenses with medical documentation short of surgery. Clinicians may want to ask their clients for a copy of the governing legal regulations and/or forms their clients must submit to the government to confi rm what terminology the government is currently requiring in order to minimize problems and embarrassment to their clients at the time they submit the forms. Many people consider “sex change”, “sex change operation”, “sex change surgery”, “pre-op”, and “post-op” as pejorative and, therefore, these terms should be avoided. Top surgery See “Surgery”. Tranny, trans Short for a transgender person. Its use is similar to the use of the word “queer” by some LGBT people. Some people consider the terms tranny, trans, and/or queer derogatory, especially when used by someone who is not transgender or lesbian, gay, or bisexual. Trans See “Transgender”. Trans See “Gender minority”. community Transgender An umbrella term for people whose gender identity and/or gender expression differs from their assigned sex at birth (i.e., the sex listed on their birth certifi cates). Some groups defi ne the term more broadly (e.g., by including intersex people) while other people defi ne it more narrowly (e.g., by excluding “true transsexuals”). Transgender people may or may not choose to alter their bodies hormonally and/or surgically. While “transgender” is a popularly used word and generally seems to be a safe default term to use, some people may fi nd the term offensive as a descriptor of themselves. It is best to ask clients which terms, if any, they use or prefer. Use “transgender”, not “transgendered”. (continued) Appendix B: Glossary of Terms 463

(continued) Term Defi nitiona Transgenderist An individual who lives full time in the cross-gender role and who may also take hormones, but does not desire sex reassignment surgery. Transition The process that people go through as they change their gender expression and/or physical appearance (e.g., through hormones and/or surgery) to align with their gender identity. A transition may occur over a period of time, and may involve coming out to family, friends, co-workers, and others; changing one’s name and/or sex designation on legal documents (e.g., drivers’ licenses, birth certifi cates); and/or medical intervention. Some people fi nd the word “transition” offensive and prefer terms such as “gender affi rmation” or “process of gender affi rmation”. Transman A term to describe a person who was identifi ed female at birth but who identifi es and portrays his gender as male. People will often use this term after taking some steps to express their gender as male, or after medically transitioning. Some, but not all, transmen male physical changes through hormones or surgery. Some people will refer to themselves as men of transgender experience. Some transmen do not use FTM (female-to-male) to describe themselves because they do not think of themselves as having transitioned from female to male. Some people prefer to be referred to as men rather than transmen or transgender men. Alternate terms: affi rmed male, FTM, gender-affi rmed male, man. Transphobia Dislike of, or discomfort with, people whose gender identity and/or gender expression do not conform to traditional or stereotypic gender roles. Transsexual People whose gender identity differs from their assigned sex at birth (i.e., the sex listed on their birth certifi cates). People who, often on a full-time basis, live their lives as a member of the sex opposite of their birth-designated sex. They may or may not (1) take hormones or have surgery or (2) be gender dysphoric. Use of the term “transsexual” remains strong in the medical community because of the DSM’s prior use of the diagnosis “transsexualism” (changed to “gender identity disorder” in DSM-IV). Some people suggest that “transsexual” includes only those people who are in the process of changing, or who have changed, their anatomical sex to realign with their gender identity. In order writings, such people were referred to as “true transsexuals” when they had moderate to high intensity gender dysphoria. Some people use “primary transsexual” or “early transitioner” to refer to people who have not had a signifi cant adult life in their birth gender because they started or completed their gender affi rmations during their teen years (or earlier) or at the latest in young adulthood. These people also use “secondary transsexual” or “late transitioner” for those people who start their transitions after the age of 30. [These distinctions] have resulted in some very heated discussions and are considered offensive to many people. It is highly recommended that clinicians not use these terms unless their clients bring them up in discussions. The term “transsexual” is hotly debated, and it is not certain whether people will use or reject this term. For some, it is disliked in the same way “homosexual” has become disfavored. Many people fi nd both transsexual and homosexual pejorative. “Transsexual” is considered by some to be a misnomer inasmuch as the underlying medical condition is related to gender identity and not sexuality. It is safer for clinicians not to use the term “transsexual” unless and until they are sure that it is a term their clients are comfortable with. When in doubt, clinicians should ask their clients which terms they would like the clinicians to use. Transvestite Previously used to describe a cross-dresser; now considered pejorative and outdated. See (TV) “Cross-dresser”. Transwoman A term to describe a person who was identifi ed male at birth but who identifi es and portrays her gender as female. People will often use this term after taking some steps to express their gender as female, or after medically transitioning. Some, but not all, transwomen make physical changes through hormones or surgery. Some people will refer to themselves as women of transgender experience. Some transwomen do not use MTF (male-to-female) to describe themselves because they do not think of themselves as having transitioned from male to female. Some people prefer to be referred to as women rather than transwomen or transgender women. Alternate terms: affi rmed female, gender-affi rmed female, MTF, woman. (continued) 464 Appendix B: Glossary of Terms

(continued) Term Defi nitiona Two spirit, Adopted in 1990 at the third annual spiritual gathering of GLBT Natives, the term derives from two-spirited the northern Algonquin word niizh manitoag, meaning “two spirits.” and refers to people who display characteristics of both male and female genders. Sometimes referred to as a third gender or “the male-female gender,” Two Spirit also means a mixture of masculine and feminine spirits living in the same body. This term also represents self-identity description used by many Native American gay men who do not identify as cross-gendered or transgender. Vaginoplasty A surgical procedure to construct a vagina. a All defi nitions were combined and paraphrased from the following two sources: National Research Council. The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington, DC: National Academies Press; 2011. http://blog.lib.umn.edu/sonweb/onrs/NIH- LGBT-Report_01.2013.pdf Fenway Health. “Glossary of gender and transgender terms.” January 2010 Revision. http://www.lgbthealtheducation. org/wp-content/uploads/Handout_7- C_Glossary_of_Gender_and_Transgender_Terms__fi .pdf Appendix C: Resource List and Position Statements

Laura Potter and Carolina Ornelas

© Springer International Publishing Switzerland 2016 465 K.L. Eckstrand, J.M. Ehrenfeld (eds.), Lesbian, Gay, Bisexual, and Transgender Healthcare, DOI 10.1007/978-3-319-19752-4 466 Appendix C: Resource List and Position Statements I Provider Provider resources Provider resources LGBT Provider resources LGBT Provider resources LGBT LGBT Provider resources Provider resources Provider resources L G Provider resources LGBT Provider resources LGBT Provider resources L resources, national recommendations LGBT cant Increases in cation and Treatment of cation and Treatment Inclusive Policies, Communication Protocols and Ongoing Inclusive Lead to Culturally Competent Care for Lesbian, Gay, Training Patients and Transgender Bisexual, Center Enhances Access to Easily Accessible, Welcoming and Bisexual, Medical and Social Services for Lesbian, Gay, Homeless Youth Transgender Cessation Program for Lesbian, Gay, Culturally Tailored Enhances Access and Smokers and Transgender Bisexual, Satisfaction Patient of Division Centers for Disease Control and Prevention’s Risk Behavior Adolescent and School Health: Sexual Publications and Resources Heritage Month Toolkit to Quit Smoking Quitguide LGBTQ Communities: Motivation resources Provider REALtalkDC Health Information Center, The National Women’s womenshealth.gov Screening for Proactive Convenient, Hospital HIV Clinic Offers Enabling Identifi Anal Cancer, Precancerous Lesions LGBT Access to Culturally Collaboration Improves Multiagency Bisexual, Care and Support Services for Lesbian, Gay, Sensitive Seniors and Transgender Rapid HIV Screening Into Community Health Centers Integrate Routine Primary Care, Leading to Signifi Rates Testing resources Provider Promotes Culturally Appropriate Countywide Partnership Outreach and Education, Leading to Increased Breast Cancer Minorities Screening and Earlier Detection in Underserved and Recommendations for Practice: Treatment Adapting Your with HIV/AIDS Homeless Patients LGBT Provider resources LGBT Medical society/organization for Healthcare Research and Agency Quality Title Resource type Target/subject population Accord Alliance AccordAlliance.org Provider resources, patient Appendix C: Resource List and Position Statements 467 (continued) 1. T 2. LB 3. G 4. LGBT LGBT LGBT L recommendations resources, national Provider recommendations Provider resources, recommendations National recommendations National recommendations LGBT National recommendations T National T recommendations T resources ce based care for LGBT Youth ce based care for LGBT Youth resources Provider LGBT Care of Special Populations—LGBT and Contraception Adolescent Health Care, Sexuality Reparative Therapy Practice Residents— Recommended Curriculum for Family LGBT Health National recommendations and Transgender Lesbian, Bisexual, Gay, resources, national Provider Offi LGBT Differentiation a Disorder of Sexual With Infant A Newborn Parents Adoption by Same-Sex Coparent or Second-Parent resources Provider Illicit Drug Reducing the Risk of HIV Infection Associated With Use National recommendations resources Provider LGBT I National recommendations LGBT LGBT Children, Adolescents, and HIV Adolescents Lesbian, and Bisexual Gay, Therapies) or Conversion Orientation (Reparative Sexual and Position Statement on Discrimination Against Transgender Individuals Gender Variant and Position Statement on Access to Care for Transgender Individuals Gender Variant & Gender Expression resources Patient Gender Identity, Transgender, Non-discrimination resources Patient Health Resource Guide Transgender Health Transgender WEBTREATS: Health Lesbian & Bisexual WEBTREATS: Lesbian Health Resources LGB LGBT Women Health Care for Lesbians and Bisexual Individuals Health Care for Transgender resources resources Provider Provider resources Provider National recommendations LB National recommendations LB T T resources, patient Provider T American Academy of Family American Academy of Family Physicians American Academy of Pediatrics Orientation and Adolescents Sexual National recommendations LGBT American Academy of Child and Adolescent Psychiatry American Psychiatric Association on Attempts to Change Position Statement on Therapies Focused American Psychological Association Orientation Appropriate Therapeutic Responses to Sexual American Congress of Obstetricians and Gynecologists National recommendations LGBT 468 Appendix C: Resource List and Position Statements LGBTI LGBT LGBT LGBT LGBT Patient Patient resources Provider resources resources, national recommendations LG LG Provider Provider resources Patient resources LGBT resources T recommendations resources resources Counseling Issues for Gay Men and Lesbians Seeking Assisted Technologies Reproductive Access to fertility treatment by gays, lesbians, and unmarried persons: a committee opinion Appendix of Resources for Clinicians and Patients resources, patient Provider transgender, and queer (LGBTQ) populations transgender, Nonconforming Students People and the Law Rights—Transgender Your Know State by Information—Map Non-Discrimination Laws: resources, patient Provider resources Patient T Impacts of the Affordable Care Act on LGBT Communities Impacts of the Affordable Assault ebook Sexual resources Provider LGBT resources Provider LGBT How to Be an Ally to a Bisexual Person to Be an Ally a Bisexual How LGBT Health resources Patient B resources, patient Provider The Guide to Community Preventive Services The Guide to Community Preventive Services The Guide to Community Preventive resources Provider resources Provider G LGBT Medical society/organization Title Resource type population Target/subject American Society for Reproductive American Society for Reproductive Medicine The American Academy of Otolaryngology—Head and Neck Surgery American Society of Clinical Oncology bisexual, among lesbian, gay, of HPV and its vaccine Awareness of Nurses-Midwives American College Health Care Variant Transgender/Transsexual/Gender Liberties Union (ACLU) American Civil and Gender Rights: A Guide for Trans Your Know National recommendations T American Academy of Physical Medicine & Rehabilitation of Emergency American College Physicians American Medical Association GLBT Health Resources resources, national Provider American Medical Directors Association Directors Medical American Uncomfortable Realities in LTC Gay Elders Face Resources Center Bisexual Blue Cross Shield of Minnesota Centers for Disease Control and LGBT Quit Guide (CDC) Prevention resources Provider Books on Bisexuality G resources Patient resources Patient LGBT B COLAGE COLAGE Resources Provider resources, patient Community Preventive Services Task Services Task Community Preventive Force (continued) Appendix C: Resource List and Position Statements 469 (continued) LGBT LGBTI T National recommendations National recommendations I T resources resources, national recommendations resources National recommendations Provider resources T Provider resources T recommendations T Development/Intersex Conditions Development/Intersex Persons: An Endocrine of Transsexual Endocrine Treatment Society Clinical Practice Guideline Center for Population Research in LGBT Health LGBT Aging Project National LGBT Health Education Center Information for medical professionals resources Provider LGBT resources Provider resources, patient Provider resources, patient Provider LGBT Guidelines for care of LGBT patients Health Resources Transgender Cultural Competence Webinars 10 Things to discuss with Healthcare Providers Top Provider Directory Resources for Medical Providers A Guide for Individuals: with Transgender for Working 10 Tips resources Patient National recommendations Center Law from the Transgender Health Care Providers Clinical management of gender identity disorder in adolescents: LGBT a protocol on psychological and paediatric endocrinology resources, patient Provider aspects for a Medical Treatment Providing Youth: Transgender resources Provider LGBT Misunderstood Population The GLBT National Resource Database GLSEN.org National recommendations LGBT T Patient resources resources Patient LGBT LGBT Patient resources, national The Endocrine Society Health Center and Fenway Fenway Institute Priorities for Care and Research in Disorders of Sex Gender Identity Research and Education Society Gay and Lesbian Medical Association (GLMA) Gender Spectrum Resources for Mental Health Providers GLBT National Help Center Lesbian & Straight Education Gay, (GLSEN) Network Human Rights Campaign (HRC) Talkline GLBT National Hotline & Youth resources Patient Doctor to Coming Out Your Tips National recommendations T LGBT resources Patient LGBT 470 Appendix C: Resource List and Position Statements I LGBT LGBT LBT LGBTI Provider Provider resources Provider resources LGBT resources LGBT Provider resources, national Provider recommendations recommendations resources, national recommendations Patient Patient resources Patient resources National recommendations General Provider resources LGBT LGBT resources, patient Provider resources, national recommendations T ciency Virus (HIV), Hepatitis B Virus (HIV), Hepatitis B Virus Virus ciency Human Immunodefi (HCV) through Solid Organ (HBV) and Hepatitis C Virus Transplantation HIVMA Comments on LGBT Research Committee Report People: and Transgender Bisexual, The Health of Lesbian, Gay, for Better Understanding Building a Foundation National recommendations LGBT Patient- and Family-Centered Care for the Lesbian, Gay, Care for the Lesbian, Gay, and Family-Centered Patient- (LGBT) Community: A Field Guide and Transgender Bisexual, Resources & Research resources, patient Provider Spanish: (800) 344-7432 TTY Service: (800) 243-7889 Rights Guide for Lesbian, the System: A Know-Your- Navigating Elders in California and Transgender Bisexual, Gay, Asserting Choice: Health Care, Housing, and Property— Older and Transgender Bisexual, Planning for Lesbian, Gay, Adults A Report of the National Transgender Turn: Injustice at Every Discrimination Survey to Quality Care to LGBT Clients with Dementia, How Providing Orientation and Gender Identity in Gather Data on Sexual Clinical Settings Medical society/organization Title Resource type population Target/subject Infectious Diseases Society of America of Public Health Service Guideline for Reducing Transmission Institute of Medicine the National Academies Society of North America Intersex ISNA.org resources, patient Provider The Joint Commission Communication, Cultural Competence, and Effective Advancing Lambda Legal Lambda Legal Our Work resources, national Patient Lesbian Health and Research Center (LHRC) National AIDS Hotline National LGBT Cancer Network National Center for Lesbian Rights (NCLR) LGBT Healthcare Reexamining Cultural Competence Training, Hotline: (800) 342-AIDS resources Provider National Center for Transgender Equality (NCTE)), & National Gay and Force Lesbian Task National Resource Center on LGBT LGBT Aging (continued) Appendix C: Resource List and Position Statements 471 (continued) T LGBTI LGBT T resources Provider Provider resources LGBT resources, national recommendations Patient Patient resources resources, national Provider recommendations LGBT resources National Transgender Discrimination Survey Reports Discrimination Survey National Transgender resources, patient Provider More Resources for GLBT Persons Friends, and Allies Coming out Help for Families, Be Yourself Our Daughters and Sons and Friends Family our Trans Welcoming Adolescents, Module on Gay, Module on Caring for Transgender resources Patient and Questioning Youth Transgender, Lesbian, Bisexual, resources Patient Resources, Publications LGBT resources Patient LGBT resources Patient T Patient resources LGBT resources, patient Provider LGBT Choosing Health Care Plans Resource List LGBT Kids/Youth Transgender Healthcare for Treatment Introduction to Substance Abuse A Provider’s Individuals and Transgender Bisexual, Lesbian, Gay, Patient resources Patient resources Patient resources T LGBT LGBTI Transgender Health Information Program Transgender resources, patient Provider National Runaway Safeline National Runaway National Center for Transgender Equality (NCTE) 1800 runaway.org Safeline: (800) RUNAWAY, resources Patient General Out2Enroll Coalition Our Family of Lesbians Friends and Family Parents, and Gays (PFLAG) Information and Resources Choice and Physicians for Reproductive and Health, Adolescent Reproductive Health Education Project Sexual Out2Enroll Q&A (ARSHEP) Topics (PTF) Foundation Project TurnAround [email protected] for GLBT PTFGA.org, Services and Advocacy Elders (SAGE) resources Patient resources Patient Patient resources LGBT LGBT LGBT Strong Families Strong Families The Center for Substance Abuse (CSAP) of the Substance Prevention and Mental Health Services Abuse Where to Start, What Ask: A Guide for LGBT People Administration (SAMHSA) Vancouver Coastal Health’s Transgender Transgender Coastal Health’s Vancouver Health Information Program Tom Waddell Health Center Waddell Tom Protocols for Hormonal Reassignment of Gender National recommendations T 472 Appendix C: Resource List and Position Statements T LGBT LGBT recommendations National recommendations LGBT resources National recommendations Patient resources T resources, national recommendations LGBT U.S. Department of Health and Human Services Recommended of Lesbian, Gay, the Health and Well-Being Actions to Improve Communities and Transgender Bisexual, Care Patient Primary Care Protocol for Transgender Learning Center: Guidelines and Reports LGBT Resource Center National recommendations T resources Provider T resources, patient Provider Standards of Care for the Health of Transsexual, Transgender, Transgender, Standards of Care for the Health Transsexual, and Gender Nonconforming People Trevor Resources Provider resources, patient Transgender Law Center (TLC) Law Transgender Resources resources, national Provider Medical society/organization Title Resource type population Target/subject US Department of Health and Human Services Center of Excellence for Transgender Health at UCSF World Professional Association for World Health (WPATH) Transgender Project Trevor Ask TrevorSpace, TrevorText, Lifeline, TrevorChat, Trevor (continued) Index

A Adverse childhood events (ACE) , 150 Acquired immunodefi ciency syndrome (AIDS) . Affordable Care Act (ACA) , 42 , 177 See Human immunodefi ciency virus (HIV) ACA’s coverage reforms , 430 Adult mental health federal and state data collection , 432 anxiety disorder , 208 fi nancial assistance , 431 assessment and treatment gender identity , 430 matrix of identity , 226, 227 health insurance marketplaces , 431 vs . non-LGBT patients , 228 medicaid eligibility , 431 principles , 226 medicaid programs , 431 sexual orientation/gender identity , 227 , 228 nondiscrimination , 431–432 treatment interaction , 226 , 227 prevention and wellness services , 432 body image and eating disorders , 209 REACH , 433 careful attention , 203 resources, Ryan White CARE Act , 433 culture and history , 201, 202 sexual orientation , 430 health disparities Title X family planning program , 433 internalized sexual prejudice , 206 Agency for healthcare research and quality (AHRQ) , 32 minority stress , 205 , 206 Agency on aging (AoA) , 188 risk factors , 206 5-Alpha reductase inhibitors (5ARI) , 295 mood disorders , 207 Alternative insemination (AI) , 329 personality disorders , 210–212 American academy of pediatrics (AAP) , 155 post-traumatic stress disorder , 208 American medical association (AMA) , 33 relationships American psychiatric association (APA) , 201 correlation , 213 American urologic association symptom score , 293 dating , 220–224 Anal cancer , 324 depression and despair , 212 Anal douching , 445 families of origin , 214–215 Anti-gay state , 422 friends , 215–219 Anti-retroviral therapy (ART) , 181 heterosexual community , 212 Anti-violence advocacy project (AVAP) , 136 long-term relationships and families , 224–226 Area agencies on aging (AAA) , 187 marriage and physical health , 212 , 213 Association of American Medical Colleges monogamy , 219 , 220 (AAMC) , 425 normal sex drives and behaviors , 214 psychiatric and psychological problems , 212 same-sex couple relationships , 212 B symptom , 214 Bacterial vaginosis (BV) sexual orientations and gender identities clinical presentation , 252 biological factors , 203 diagnosis , 252 careful attention , 203 epidemiology , 251 causes , 202 treatment , 253 essentialism and mutability , 205 Benign prostate enlargement (BPE) . See Benign prostate evolution and maintenance , 204 enlargement (BPE) psychoanalytic theory , 204, 205 Benign prostate hypertrophy (BPH) , 292 substance use disorders , 209 , 210 Body dysmorphic disorder (BDD) , 278 suicide , 207 Botulinum toxin , 283

C cardiovascular risk , 358 California medical association (CMA) erythrocytosis , 359 breast cancer hyperlipidemia , 359 coping mechanisms , 320 hyperprolactinemia and prolactinomas , 359 health insurance/screening , 316 osteoporosis , 359 incidence , 316 ostoepenia , 359 masculinizing/feminizing hormone therapy , 319 skin , 359 prevalence , 316 venous thromboembolism , 359 report of , 319 feminizing regimens risk assessment tools , 316 , 320 androgen blocker , 356 screening recommendations , 319 effects of therapy , 356 social support , 320 estrogen , 356 study examination , 319 follow-up , 356 systemic barriers , 319 HIV infection , 357 cervical cancer initial dosing , 356 annual and routine pap tests , 321 oral estradiol , 356 HPV , 320 after orchiectomy , 357 screening guidelines , 321 masculinizing regimens gynecologic cancer effects of therapy , 358 anal cancer , 324 follow-up , 358 endometrial cancer , 322 initial dosing , 358 impaired sexual function , 323 testosterone therapy , 358 long-term physical symptoms , 323 ovarian cancer , 322 psychosocial concerns , 323 D radiotherapy and surgical interventions , 323 Defense of Marriage Act (DOMA) , 184 , 426 social and partner support , 323 Democratic Republic of the Congo (DRC) , 394 surgical and radiotherapeutic interventions , 322 Depression , 293 survivorship concerns , 322 Dermatology vaginal and vulvar cancer , 322 Candida spp. , 273 Care coordination , 108–109 defi nitions , 263 , 264 CBME . See Competency-based medical gonorrhea and chlamydia , 273 education (CBME) HBV , 274 Centers for disease control and prevention HCV , 275 (CDC) , 62 , 423 HPV (see Human papillomavirus (HPV) ) Centers for medicare and medicaid services (CMS) , 422 HSV , 269 , 270 Chlamydia trachomatis (CT) psychiatric comorbidities clinical presentation , 239 anabolic steroids , 279 diagnostic method , 239 BDD , 278 epidemiology , 238 depression and anxiety , 280 LGV , 240 eating disorders , 278 treatment , 240 IPV , 280 Colorado anti-violence program (CAVP) , 134 morbidity and mortality , 278 Colorectal cancer (CRC) , 101 obesity , 279 Community United Against Violence (CUAV) , 134 prevalence , 276 Competency-based medical education (CBME) substance abuse , 276 , 277 interpersonal and communication skills , 453 Staphylococcus aureus , 276 interprofessional collaboration , 454–455 STIs patient care , 451–452 HIV (see Human immunodefi ciency personal and professional development , 455 virus (HIV)) practice knowledge , 452–453 oral-genital sexual activity , 264 practice-based learning and improvement , 453 prevalence , 264 professionalism , 453–454 syphilis , 270–273 systems-based practice , 454 transgender patients Continuing medical education (CME) sessions , 424 anti-androgen , 281 Cosmetic fi ller , 283 cosmetic outcomes , 283 , 284 Cross-sex hormone regimens ethical and legal , 284 adverse effects hair growth , 281 , 282 breast and cervical cancer screening , 359 masculinity/femininity , 282 cancer screening , 358 , 359 non-invasive techniques , 282 , 283 Index 475

post-operative scarring , 282 Milwaukee LGBT Community Center’s mission, sebum , 281 Wisconsin , 139 Disorders of sex development (DSD) NCAVP , 133 bipotential gonads , 406 NCCADV, North Carolina , 137 boy/girl exercise , 414–415 Northwest Network acts, Washington , 139 competent care OutFront Minnesota , 136 medical care , 415–416 SafeSpace, Vermont , 139 psychiatrists , 416 Survivor Project, Oregon , 138 psychologists , 416 Triangle Foundation, Michigan , 135 support groups , 416 VRP, Massachusetts , 135 therapists , 416 Wingspan Anti-Violence project, Arizona , 134 defi nition , 405 , 406 etiology , 408–409 fetal testes , 406 E internal reproductive structures and external Electronic health record (EHR) genitalia , 407 culture change , 85 linguistic and cultural competency , 407–408 patient survey , 86–87 male or female pathway , 406 SO/GI data medical outcomes , 412 cultural awareness and education , 87 MIS , 406 health disparities , 87 optimal gender policy , 405 health information technology , 89 practice guidelines strategy , 88 clinical goals , 410 youngest task force members , 88 delaying assignment past birth , 410 UCDHS diagnosis , 410 elevator talking points , 82 gonadal tissue, removal of , 410 Internal Public Relations , 85 heterogenous conditions , 410 key informant interviews , 83–85 informed consent models , 411 senior leadership meetings , 85 medical decision making , 412 unconscious bias , 82 medical evaluation , 410 Electronic health records (EHRs) , 313 outcomes , 410 Enzyme-linked immunosorbent assay (ELISA) , 235 puberty and secondary sex characteristics , 410 Erectile dysfunction (ED) , 298 sample operational pathway , 410 in HIV positive men , 300 teams and individual providers , 410 medical therapies , 300 prevalence , 407 psychological and emotional outcomes cohort effects , 413 F mental health , 413 Facial feminization surgery self-concept , 413–414 defi nition , 377 stable gender development , 406 facial analysis steroid hormone testosterone , 406 eyebrow position , 380 terminology , 407 facial units , 380–381 true sex conceptualization , 407 lips and chin projection , 380 46,XY DSD , 407 male to female transgender patient , 379 Domestic violence “normal” values , 379 519 Anti-Violence Programme, Ontario , 138 upper face , 380 AVAP, Missouri , 136 vertical and horizontal segments , 379 BRAVO, Ohio , 137 feminine recognition , 378 CAVP, Colorado , 134 hormonal supplementation , 377 Center on Halsted Anti-Violence Project, lower face and mandible , 384–385 Illinois , 135 midface , 384 CUAV, California , 134 nasal surgery , 383–384 Equality Advocates’ mission, Pennsylvania , 138 phonosurgery , 386 Equality Virginia , 139 speech therapy , 387 Gay Alliance of the Genesee Valley, New York , thyroid cartilage (Adam’s Apple) Alteration , 386 136–137 transgender community, and research , 377 GMDVP , 133 upper face and hairline , 381–383 LAMBDA , 133 Federally Qualifi ed Health Center program , 433 MCC, Texas , 138 Federal Medical Leave Act (FMLA) , 184 476 Index

Federal Poverty Level (FPL) , 431 fear and hate , 41 Female-to-male (FTM) patient health relevance , 40 , 41 collaborative care , 374 healthcare environment (see Healthcare environment ) genital surgery , 373 healthcare providers history of , 372 advantages and disadvantages , 45 metoidoplasty , 373 physical and social responsibility , 46 phalloplasty internalization , 39–40 Complications , 373 Highly active antiretroviral therapy (HAART) , 267 Radial forearm fl ap , 372–373 Highly Active Retroviral Therapy (HART) , 293 subcutaneous mastectomy , 373–374 Hormone Replacement Therapy (HRT) , 449 Forehead cranioplasty surgery , 382 HSV-1 seropositivity , 325 HSV-2 seropositivity , 325 Human immunodefi ciency virus (HIV) G Center for disease control , 264 Gail model , 320 clinical presentation , 235 Gay men’s domestic violence project (GMDVP) , 133 diagnosis , 235 Gender dysphoria , 340 diffuse morbilliform eruption , 266 Genioplasty surgery , 385 epidemiology , 235 Genital reassignment surgery (GRS) , 8 HAART , 267 Gonococcus (GC) . See Neisseria gonorrheae infl ammatory disorders , 266 Growing Up Today Study (GUTS) , 147 Kaposi sarcoma , 266 primary infection , 265 principle , 264 H prevention , 237 Healthcare environment, disclosure treatment , 237 barriers , 44 Human papillomavirus (HPV) confi dential information , 45 clinical presentation , 249 , 268 cultural and political infl uences , 44 , 45 condyloma/molluscum , 269 facilitators , 44 diagnosis , 249 , 251 , 268 negative HCP reactions , 44 epidemiology , 249 nondisclosure consequences , 45 prevention , 251 , 268 population-based healthcare , 43 subtypes , 268 potential and actual consequences , 44 treatment , 251 Healthcare equality index (HEI) , 32 , 33 , 422 Human Rights Campaign (HRC) , 32–33 American Cancer Society , 61 American College Health Association , 62 CDC , 62 I GLMA , 62 Immigrants Human Rights Campaign , 62 in Africa The Joint Commission , 62 Cameroon , 394 Lambda legal , 62 DRC , 394 online survey , 61 Uganda , 394 Safe Schools Coalition , 62 Zimbabwe , 395 Vanderbilt Program , 62 Americas , 396 Healthcare providers in Asia , 395–396 advantages and disadvantages , 45 Asian population , 391 physical and social responsibility , 46 documented and undocumented , 392 Hepatitis B virus (HBV) , 274 double-marginalization Hepatitis C virus (HCV) , 275 accommodations , 400 Herpes simplex virus (HSV) , 269 , 270 Heartland Alliance , 397 clinical presentation , 243 , 244 infectious disease , 400 diagnosis , 244 non-allopathic medicine , 401 epidemiology , 242 Non-Western Lens , 397–398 transmission and acquisition , 243 past trauma and physical exams , 400 treatment , 244 , 245 physical safety , 399–400 Heterosexism and homophobia privacy , 400 beyond sexual orientation , 43 professional interpreters , 399 confl agration , 43 referrals , 400 current policy , 42 stress , 399 Index 477

efugees and asylum seekers , 392 , 393 L in Middle East Legal and policy issues Iran , 395 ACT Qatar , 395 ACA’s coverage reforms , 430 Yemen , 395 Federally Qualifi ed Health Center program , 433 mental health fi nancial assistance , 431 refugees/asylum seekers , 401 gender identity , 430 transgender , 402 health insurance marketplaces , 431 prejudice and discrimination , 393 medicaid eligibility , 431 resources , 402 medicaid programs , 431 United Nations report, 2011 , 393 , 394 nondiscrimination , 431–432 U.S.Rights , 396–397 prevention and wellness services , 432 Implicit bias , 41 REACH , 433 Informed consent model , 353–354 resources , 430 Institute of medicine (IOM) , 31–32 Ryan White CARE Act , 433 Interdisciplinary care sexual orientation , 430 Chaplain , 345 Title X family planning program , 433 dietician , 346 discrimination endocrinologist , 343 in health care , 421–424 gender dysphoria , 340 , 341 intersex health , 423–424 hormone prescribing physician , 343 LGBT health , 421–423 insurance/benefi ts professional , 347 transgender health , 423 internist , 343 LGBTI health issues (see LGBTI health issues ) language and terminology , 339–340 national quality improvement standards and mental health practitioner , 344 policies , 433–435 minority stress theory , 341 Lesbian, gay, bisexual and transgender (LGBT) patient North American models , 347 adoption , 116 NP , 342 allergies , 72 nurse , 342 assessing identity , 26–28 occupational health professional , 346–347 barriers to care PCP , 342 health care access , 23 social workers , 345 health care curriculum , 25 speech-language pathologist , 345–346 health care provider , 24 surgeons , 343 insurance coverage , 24 International prostate symptom score sexual minority women , 24 (IPSS) , 293 stigma and discrimination , 24 Intimate partner violence (IPV) broader social acceptance , 115 abuse , 126–127 busy practitioner , 4–5 children , 129 cancer , 70 clinicians role , 130–131 cardiovascular disease , 70 defi nition , 125 children, outcomes , 118–120 effects , 126 cis-gender , 7 etiologies and epidemiology , 127–128 clinical environment homophobia/biphobia/transphobia , 129 confi dentiality assurance , 55 immigrants , 399 Décor and materials , 52 intervention , 132 gender-inclusive restroom , 52 domestic violence (see Domestic violence ) mission statement , 54 health risks , 132 non-discrimination policy , 55 patient safety , 132 patient fl ow , 52–54 law enforcement , 129 visitation policy , 55 medical documentation , 131 coming out , 9 methodological challenges , 128 culture, climate and advocacy physical exam , 131 AHRQ , 32 prevalence and severity , 128 AMA , 33 social services , 129 Fenway Institute , 33 , 34 GLMA , 31 , 33 health education , 34 J healthy people , 32 The Joint Commission (TJC) , 33 HRC , 32–33 478 Index

Lesbian, gay, bisexual and transgender (LGBT) patient–provider relationship , 67 patient (cont.) patient satisfaction surveys , 60 IOM , 31 , 32 PCP , 25–26 organizational change models , 35 queer , 8 patient care , 34–35 referral network , 61 practical tools , 36 refl ections , 9–11 TJC , 33 sex , 6 defi nition , 6–7 sexual orientation , 6 demographics social history , 67 economic factors , 116 sexual health history (see Sexual health history ) gender identity , 13 socioeconomic factors , 73–74 immigrants , 14 substance use/abuse , 73 Kinsey scale , 11 support systems , 74 legal issues , 117–118 surgical interventions , 71–72 sex development/intersex , 13 therapeutic relationship , 65–66 sexual orientation , 12 trans* , 9 youth , 13 transsexual , 8 drag , 8 twenty-fi rst century , 18 family medical history , 73 WSW , 7 gender dysphoria , 9 WSWM , 7 gender expression , 6 LGBTI health issues gender identity , 6 CME , 424 genderqueer , 8 federal policy GRS , 8 Congressional record , 429 healthcare organizations executive, legislative, and judicial , 427 Adolescent Psychiatry , 122 federal income taxes , 427 American Academy of Child , 122 programs , 427 American Academy of Pediatrics , 121 qualifi ed retirement plans , 427 American Psychological Association , 121–122 U.S. Department of Health and Human Services , HEI (see Healthcare equality index (HEI) ) 427–429 heteronormativity , 9 Fenway Institute and Center for American history , 3 , 4 , 14–18 Progress , 425 intake forms GLMA , 424 defi nition , 55 Health Resources and Services Administration , 424 gender identity , 56 Healthcare Research and Quality , 424 HIV testing/status , 58 Joint Commission , 425 living environment , 56 in MedEdPORTAL , 425 parent/guardian , 56 New York City Health and Hospitals relationship status , 56 Corporation , 425 safer sex techniques , 58 state policy sexual orientation , 56 in detention settings , 427 STIs , 58 insurance coverage , 426–427 vaccination , 58 Substance Abuse and Mental Health Services interpersonal environment Administration , 424 clinical interview , 59–60 training requirements , 424 discrimination reporting , 60 U.S. Offi ce of Minority Health , 424 staff sensitivity training , 58–59 LGBT sexual health questions interviewing techniques , 66–67 environment , 442 in vitro fertilization , 116 female life-course framework , 19 bacterial vaginosis , 448 marriage and health , 120 breast cancer , 447–448 medications , 72 female ejaculation , 448–449 mental health history , 72 gender identity , 449 MSM , 7 HIV , 448 MSMW , 7 open relationships , 449 obesity , 71 oral sex , 448 organizations and media , 61 STIs , 448–450 pansexual , 8 trichomoniasis , 448 patient addressing , 60 vaginal cleaning , 447 Index 479

vaginal dryness , 449 penile skin graft , 368 WSW , 448 penile-scrotal skin fl aps , 369 language , 441–442 vulvoplasty , 369 male , 445–446 Medical transition erectile dysfunction , 443–444 adult and adolescent guidelines , 354 penis size , 443 barriers , 352 prostate enlargement , 443 behavioral risk factor surveillance system , 352 sexual activity (see Sexual activity ) community based surveys , 353 STI (see Sexually transmitted infections (STIs) ) defi nition , 351 Lower urinary tract symptoms (LUTS) informed consent model , 353–354 etiology , 292 initiation of , 356–357 irritative symptoms , 291 , 292 cross-sex hormone regimens (see Cross-sex in men hormone regimens ) BPH , 292 documentation , 355–356 depression , 293 medical intake , 354 diabetes , 293 natal and reassigned sex , 354 HIV infection , 293 standards of care , 353 idiopathic detrusor overactivity , 293 Mental health practitioner , 344 infl ammatory triggers , 293 Men who have sex with men (MSM) IPSS , 293 AIDS , 299 metabolic syndrome , 293 ED , 298 MSM , 293 HIV , 299 , 300 obesity , 293 management of , 300–301 physiology of , 293 PE, 298–299 progressive growth , 293 prostate cancer , 302–303 synergistic effect , 293 Methicillin-resistant Staphylococcus aureus (MRSA) , obstructive symptoms , 291 257 , 276 treatment options Müllerian inhibiting substance (MIS) , 406 5ARI , 295 alpha-blockers , 295 anticholinergics , 295 N behavioral interventions , 294 National Coalition of Anti-Violence Programs intravesical injection , 296 (NCAVP) , 133 tadalafi l , 295 National Institutes of Health (NIH) , 428 TURP , 296 Naturally Occurring Retirement Communities urethral sling surgery , 296 (NORC) , 194–195 urinary control, loss of , 292 Neisseria gonorrheae in women , 293–294 clinical presentation , 240 , 241 Lymphogranuloma venereum (LGV) , 240 diagnosis , 241 epidemiology , 240 treatment , 242 M Nucleic acid amplifi cation testing (NAAT) , 239 Male-to-female (MTF) patient Nurse practitioner (NP) , 342 breast augmentation , 369–370 feminizing surgeries Adam’s Apple reduction and voice surgery , O 371–372 Obstetrics and gynecology (OB/GYN) cheeks , 371 attraction , 310 chin , 371 barriers , 312 facial Surgery , 370–371 behavior , 311 forehead , 371 biases and assumptions , 312 hair transplantation , 371 clinicians , 312 jaw , 371 distress , 310 nose , 371 EHR , 313 history of , 368 fertility and reproduction vaginoplasty alternative insemination , 329–330 non-genital skin fl aps , 369 foster parenting/adoption , 329 non-genital skin grafts , 368 surrogacy , 330 pedicled intestinal transplant , 369 gender identity , 310 480 Index

Obstetrics and gynecology (OB/GYN) (cont.) fi nancial resources and access , 176–177 gender-affi rming surgical procedures , 313 frailty , 174–176 health disparities , 316–324 recommendations , 174 cancer (see Cancer ) resilience , 176 lifestyle factors , 316 social networks , 177 history , 314–315 social stigma , 176 intake & waiting room , 312 goals , 192 interpersonal stigma , 312 grassroots organizations , 192 misperception risk , 313 health determinants , 171 patient history , 312 health disparities , 171 physical examination , 312 , 315 healthcare , 170 sexual health and satisfaction HIV disease dyadic adjustment scale and intimacy , 329 ART , 181 excitement phases , 328 cancer screening , 181 female sexual distress scale , 329 drug adherence rates , 180 orgasm phase , 328 lesbian and bi-sexual women report , 180 plateau phase , 328 medications , 180 PLISSIT scale , 329 phases , 180 resolution phase , 328 physical and functional health , 179 sexual orientation , 310 primary care , 180 STI implementation , 192 bacterial vaginosis , 325 informal caregiver networks , 184 barrier protection methods , 326 information dissemination , 193 contraception options , 327 integrated provider/community emotional distress , 325 collaborations , 194 genital herpes , 326 local needs , 191 HSV infection , 325 long term care issues , 186–187 PCOS , 327 NORC , 194 rates and infection patterns , 326 organizations and institutions , 190 sexual coercion , 325 outcome , 192 sexual orientation and gender identity , 325 policy , 187 substance use , 325 political and social action , 191 trauma , 327–328 population , 171 unwanted pregnancy , 326 resources , 189–190 structural concerns , 313 “senior-friendly” housing developments , 195 training defi cit , 313 service provider network , 191 Older adults services and support systems , 188 academic community partnerships , 195 sexual encounter , 179 advance directives , 186 training models , 194 advocacy efforts , 193 VtVM , 195 aging in place , 183 , 194 website , 193 assisted living settings , 187 Older Americans Act (OAA) , 187 awareness , 191 Overfl ow incontinence , 292 care framing , 183 chronic care , 188 clinical care P age matched heterosexuals , 178 Parents, families, and friends of lesbian women behavioral health issues , 178 and gays (PFLAG) , 215 life course factors , 178 PDE5I drugs , 300 sexual health , 178 , 179 Pediatric and adolescents “young-old” population , 177–178 AAP , 155 clinical issues , 182 AMA Board , 155 clinician involvement , 188 , 189 case presentation congressional recognition , 190–191 barrier methods , 144 education , 193 case wrap-up , 144–145 erectile dysfunction , 179 emergency department , 144 fi nancial issues , 185 hormonal treatment , 144 fi nancial planning , 185 physical exam/assessment , 144 functional status tool , 184 pump party , 144 geriatric care clinical setting Index 481

clinic characteristics , 152 Phosphodiesterase 5 (PDE5) inhibitor , 295 , 300 factors , 152 , 153 Polycystic ovarian syndrome (PCOS) , 327 HEADDSS, SHADDES/HEADSFIRST Pre-exposure prophylaxis against HIV (PrEP) , 106 mnemonics , 154 Prejudice events , 341 homicidal and suicidal ideation , 152 Premature ejaculation (PE) , 298–299 individual rate/risk of suicide , 154 Primary care providers (PCPs) , 342 limits of disclosure , 153 counseling patients , 107–108 negative response , 154 family models , 107 risk-based screening , 152 health promotion safety , 153 immunizations , 98 self-identifi cation , 152 mental and emotional health , 97 sexual attraction/behaviors , 153 nutrition and physical activity , 97 stereotypes , 153 sexual health , 97–98 strength-based approach , 154 patient-centered medical home , 95–96 unconscious/systematic racism , 153 patient–provider relationship , 96–97 cross-sex hormones , 155 , 156 screening test gender and sexuality development alcohol and drug use , 104 complex, dynamic, and multifactorial anal cancer , 101–102 process , 145 bone density , 103 cultural environments and communities , 146 breast cancer , 100–101 developmental process , 146 cardiovascular disease , 98 gender variant/incongruent behavior , 145 cervical cancer , 98–100 principles , 146 CRC , 101 youth risk behavior surveys , 146 interpersonal violence and personal safety , 103 health disparities , 145 lung cancer , 102 mental health mental health disorders , 106–107 anabolic steroids , 147 PrEP , 106 cognitive isolation , 150 prostate cancer , 102 community awareness , 149 STI screening , 104–106 family response , 149 testicular cancer , 102 GUTS , 147 tobacco use , 103–104 heterosexual girls and boys , 147 tools , 104 incidence and prevalence , 147 internalized homophobia , 150 resiliency , 150 Q school policy , 150 Qualifi ed health plans (QHP) , 431 sexual minority youth, parents support , 151 sexual orientation , 147 societal stigma , 150 R neurodevelopmental differences Racial and Ethnic Approaches to Community Health behavioral change , 151 (REACH) , 433 mechanisms , 151 Resource list and position statements , 465–472 physicians and health professionals , 152 population based research vs . high-risk sampling , 152 S stressors , 151 Sexual activity physical and sexual health anal sex cognitive isolation , 150 anal douching , 445 community awareness , 149 butt plug , 446 family response , 149 pain , 445 HIV infections , 148 preparation , 445 internalized homophobia , 150 cock-rings , 447 lesbian and bisexual teens , 148 fi sting , 446 resiliency , 150 oral sex , 446–447 school policy , 150 poppers , 447 sexual intercourse , 148 Sexual health history sexual minority youth, parents support , 151 CDC , 74 societal stigma , 150 pleasure , 76 transgender population , 155 practices , 75 Penicillin , 272 pregnancy planning , 76 482 Index

Sexual health history (cont.) transgender patients , 106 sex partners , 75 WSW , 105–106 STIs , 75 , 76 sexual behavior and risk , 234 violence/abuse , 76 sexual coercion , 325 Sexually transmitted infections (STIs) sexual orientation and gender identity , 325 bacterial vaginosis , 325 substance use , 325 barebacking , 444–445 trauma , 327–328 barrier protection methods , 326 Treponema pallidum behavior vs . sexual orientation , 234 clinical presentation , 245 , 246 , 248 BV diagnosis , 248 clinical presentation , 252 epidemiology , 245 diagnosis , 252 treatment , 249 epidemiology , 251 Trichomonas vaginalis , 253 , 255 treatment , 253 ulcerative lesions , 257 cervicitis , 259 unwanted pregnancy , 326 Chlamydia trachomatis urethritis , 258 clinical presentation , 239 vaginitis , 259 diagnostic method , 239 VVC , 253 epidemiology , 238 warts , 444 LGV , 240 Sexual response cycle , 296–297 treatment , 240 Social workers , 345 contraception options , 327 Speech therapy , 387 emotional distress , 325 Steroid hormone testosterone , 406 genital herpes , 326 Stress incontinence , 291 hepatitis viruses , 257 Surgical treatments HIV Christine operation , 364 clinical presentation , 235 complications , 366 diagnosis , 235 ethical objections , 364 epidemiology , 235 female-to-male (FTM) surgical procedures , 365 prevention , 237 ﬁ nancial issues , 364–365 treatment , 237 FTF patient (see Female-to-female (FTF) HPV patient) clinical presentation , 249 male-to-female (MTF) surgical procedures , 365 diagnosis , 249 , 251 meta-analysis , 365 epidemiology , 249 modern surgical sex reassignment surgery , 363 prevention , 251 MTF patient (see Male-to-female (MTF) patient ) treatment , 251 patient satisfaction , 366 HSV therapeutic effect , 365 clinical presentation , 243 , 244 WPATH standards of care diagnosis , 244 breast/chest Surgery , 367 epidemiology , 242 genital Surgery , 367 infection , 325 Syphilis . See Treponema pallidum transmission and acquisition , 243 treatment , 244 , 245 Kaposi sarcoma , 256 T molluscum contagiosum , 255 , 256 Thyroid cartilage (Adam’s apple) alteration , 386 MRSA , 257 Tinidazole , 255 Neisseria gonorrheae Toxic relationships , 133 clinical presentation , 240 , 241 Transition diagnosis , 241 deﬁ nition , 351 epidemiology , 240 medical transition (see Medical transition ) treatment , 242 social transition , 351 oral sex , 444 surgical transition , 352 PCOS , 327 Treponema pallidum Pediculosis pubis , 255 clinical presentation , 245 , 246 , 248 proctitis , 258 diagnosis , 248 rates and infection patterns , 326 epidemiology , 245 scabies , 256 treatment , 249 screening test Triadic therapy , 353 MSM , 104–105 Trichomoniasis , 448 Index 483

U external sphincter , 291 Urgency incontinence , 291 incontinence , 291 Urologic issues internal sphincter , 291 GU malignancy LUTS (see Lower urinary tract symptoms bladder cancer , 303 (LUTS)) prostate cancer , 302–303 U.S. Preventive Services Task Force (USPSTF) , 106 transgender patients , 303 healthcare , 289–290 sexual behavior and health V sexual function, men , 297–298 Village-to-Village Movement (VtVM) , 195 sexual response cycle , 296–297 Violence recovery program (VRP) , 135 sexual dysfunction , 298–301 Vulvovaginal candidiasis (VVC) , 253 in MSM (see Men who have sex with men (MSM) ) in WSW , 301–302 W sexual function, women , 301 World Professional Association for Transgender Health urinary function (WPATH) , 343