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Disclosures Goals

Affirming Care for People with  I have no financial conflicts to disclose By the end of this hour, you will be able to: Traits:  Appreciate the diversity of intersex traits, and the conditions associated with them

Lessons from LGBTQ Health  Describe the traditional approach to people with intersex traits and its impact on health Katharine Baratz Dalke, MD MBE (she|her)  Implement an affirming approach to Director of the Office for Culturally Responsive Health Care Education physical and behavioral health care for Assistant Professor of and Behavioral Health Penn State College of Medicine people with intersex traits

October 9, 2020

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Why Learn About What are intersex traits? About Language… Intersex?

Group of congenital variations relative to endosex traits It’s complicated… People with intersex traits…

 Sex chromosomes, , and/or internal or external  Hermaphroditism genitalia  Are common (1 in 100 - 2000)  Intersex/uality, intersex traits/conditions*  May also see variations in secondary sex traits  Benefit from quality medical care  Differences of Sex Development*  Included among sexual and diverse/minority  May receive care in SGM health settings populations  Endosex  Are rarely intentionally included in SGM health  Present at any time across the lifespan

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Endosex female Endosex male Endosex female Endosex male

XXY Karyotype XX XO XY Karyotype XX XY XY/XX Quantity or function Hormones variance Hormones Estrogens Androgens Testes Ov aries Gonads Internal genitalia Fallopian tubes ductus deferens Testes Uterus & cerv ix Ovotestes seminal v esicle Ovaries Epididymis Upper v agina Uterus/ ejaculatory duct Fallopian tubes ductus deferens Internal genitalia Overview of Intersex Traits Uterus & cervix seminal vesicle Upper vagina ejaculatory duct Prostate Glans length External genitalia Vulv a/Labia / Scrotum Urethra Clitoris Penis External genitalia Vulva, Labia Scrotum

Breast dev elopment /chest tissue Voice change Breast development Voice change Secondary sex traits Menstruation Menstrual cycle Genital enlargement Secondary sex traits Menstruation Genital enlargement Pubic & axillary hair Hair patterns Pubic, axillary, hair Pubic & axillary hair Pubic, axillary, facial hair 7 8 9

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Classification of Intersex Variations History of Intersex

Chromosomes Gonads Hormones Genitals

• Klinefelter • Gonadal • • Mϋllerian Syndrome Dysgenesis Insensitivity agenesis Traditional Medical (XXY) (Swyer’s Syndrome (MRKH) • Turner Syndrome) (AIS) • Hypospadias Approaches Syndrome • Ovotesticular • Congenital • Penile ▪ Before the 1960s (XO) DSD Adrenal agenesis or • Mosaicism Hyperplasia microphallus to Intersex Traits (XX/XY) (CAH) • 5-alpha ▪ From the 1960s to the 1990s Reductase Deficiency (5- ARD) ▪ From the 1990s to the Present

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History of Intersex ▪ From the 1990s to now

In practice: ▪ Activism and support groups ▪ Surgical complications ▪ Prior to the 1960s ▪ Gender assignment influenced ▪ Culture of shame, secrecy, by surgical technique and and stigma ▪ Limited diagnostic tools Gender capacity for heterosexual History of intercourse ▪ Limited surgical options Theory Intersex ▪ Medical Care Shifts ▪ Multidisciplinary teams ▪ Diagnostic and surgical ▪ More conservative surgical ▪ From the 1960s to the 1990s information withheld from approach ▪ Developments in genital surgery patients, and many parents ▪ Disclosure of diagnoses ▪ Gender theory ▪ Human Rights Framework ▪ “Concealment” model of care

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Legacy of the Old Model Legacy of the Old Model

Interventions Continue Today: Disclosure of Diagnoses: ▪ In infancy The Clinical Needs of ▪ Gonadectomy People with Intersex Traits ▪ Information routinely withheld from patients and families up through early 2000s ▪ Clitoral reduction ▪ Before ability to assent

▪ ▪ With insufficient psychosocial support ▪ Propagated shame, stigma, and isolation

▪ Hypospadias surgery ▪ To address distress ▪ Patients continue to grapple with these ▪ Hormonal interventions

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“Between a Rock and a Hard Place” Parental Legacy of the Old Model

Physical risks: ▪ Scarring and chronic pain “Do surgery, or do nothing” ▪ Urinary and ▪ Sterilization Western ▪ Lifelong HRT Intolerance of and endo/cis/hetero- “Do something!” Uncertainty ▪ Complications requiring multiple follow-up surgeries normativity

Psychological risks:

No compelling evidence that: ▪ Depression, PTSD, suicidal thoughts 1) Distress is unmanageable for parents ▪ Shame, isolation, and inadequacy ▪ Gender incongruence

Population level risks: 2) Genital surgery reduces distress relative ▪ Negat ive health outcomes due to negative care experiences to no surgery

1) Wisniewski 2017. 19 20 21

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Groups Calling for Delay What do Patients Need? What do Patients Need?

▪ US Bureau of Public Affairs for ▪ Amnesty International, Human We’re still learning! State Dept Rights Watch  Most research is clinical samples and specific conditions A different model of care, that: ▪ State legislatures ▪ Physicians for Human Rights  Little to no population research ▪ German and Swiss ethics ▪ GLMA Health Professionals  Evidence of overlaps with LGBTQ health concerns and  Affirms sexual and gender diversity councils Advancing LGBT Equality populations ▪ Australia, Chile, Argentina, ▪ American Medical Student  Majority of people are cis/het, but…  Celebrates strength of patients and  Higher rates of non-cis gender experiences Malta governments Association families  Higher rates of non-het sexual orientations ▪ World Health Organization ▪ American Academy of Family  Experiences of stigma, isolation ▪ Several UN organizations, Physicians  Reluctance to apply LGBTQ health principles and methods  Repairs trauma Special Rapporteur on Torture ▪ Indian, Colombian, Kenyan courts

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Traditional Model Affirming Model Medicalized Inclusive Physical Psychosocial Sex defined by single Sex defined by balance of factor factors Language Language Obstruction Professional and peer support Steroid replacement for CAH Flexible sex assignments Sex is binary Sex exists on a spectrum Treatment of malignancy Psychoeducation: Intersex is a natural human Ambiguous Genital Acute Gender affirming HRT for • Sex vs. gender vs. sexuality Intersex is a disorder variation genitalia difference • Sexual health and wellbeing Education on anatomy, • Family formation Gender is binary & Gender is flexible & predictable exploratory history, and records • Educating others Under-v irilized Affirming Androgen Gender affirmation Gender affirmation Genital diversity can be male or Genitals must be “normal” effect Pubertal suppression Cultural humility affirmed v irilized female Care Long-term cancer risk Resilience, normalizing Urinary function narratives Children will be ostracized Children can be prepared Chronic and distressed and supported Clitoromegaly, Glans length Sexual function Navigating difference microphallus v ariation Genital appearance Identity development Only heterosexual, A wide range of sexual Fertility preservation Decision-making in uncertainty penovaginal intercourse is activity is normal and Medical trauma normal enjoyable

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Intersex Inclusion

▪ Inclusive documents and language

▪ Ask patients what they understand about their bodies

▪ Minimize intrusive examinations and questions

▪ Ask for and mirror the person’s language

▪ Note: Medical language may be associated with trauma

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Intersex Inclusion Intersex Inclusion Case Discussion

Natalia is a 16 year-old assigned female with partial androgen insensitivity ▪ Promote person-driven goals regarding gender-affirming care syndrome who presents to discuss vaginoplasty ▪ Community is defined by a diversity of stories and identities

▪ Multidisciplinary care, including At birth, Natalia had mid-range glans length, partial labioscrotal fusion, and bilateral inguinal testes ▪ Do add the ”I,” and…

▪ Informed consent for all examinations and procedures Natalia’s testes were removed at age 2 with concern for malignancy risk, and surgery confirmed no uterus ▪ When teaching, include intersex stories or resources ▪ Ongoing education of families and patients Natalia reports considering surgery “so I can have sex.” ▪ Recognize (10/26, Inter/ACT Advocates) ▪ Refer to support groups What else do you want to know?

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Natalia Natalia Natalia: 6 month f/u

Mother and grandparents “want me to be normal” Now Natalia has a clearer understanding of gender: nonbinary/femme, with Traditional model of intersex care: Affirming model of intersex care: they/them or she/her pronouns ▪ Psychosocial or medicine-led ▪ Surgeon-led Understanding of surgery: “I have no idea” ▪ Understand and offer education on ▪ Intolerant of uncertainty in decision- spectrum of sexual and gender making identities and behaviors Their sexuality is panromantic, reluctant to label . Likely interested in penovaginal intercourse, “but there are other ways.” Sexuality: “No one will be interested in me.” ▪ Recommend “normalizing” ▪ Understand context of decision v aginoplasty ▪ Allow time for processing of Romantically attracted to multiple information and consent ▪ Discuss options for neov agina Researched different options for dilation, vaginoplasty, post-op dilation No fantasies, , or sexual partners ▪ Offer dilation as first step ▪ Obtain informed consent

▪ Schedule patient, often “before college” “All together, I probably want the surgery, but I’m still trying to figure out if it’s Gender: “I guess female?” Androgynous, femme-leaning expression to make me feel good, or to make it easier for me to date. I think I’ll try dilation first.” How do you talk with Natalia about surgery? What else does Natalia need? 34 35 36

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Questions for Consideration Resources References

Peer support groups  “Trans people have to fight for surgeries that they do want, and 1) W isniewski AB. “Psychosocial implications of disorders of sex development treatment for intersex people have to fight for surgeries that they don’t  AIS-DSD Support Group (AISDSD.org) parents.” Curr Opin Urol. 2017 Jan;27(1):11-13. 2) W olfe-Christensen C, et al. “Changes in levels of parental distress after their child with want.”  OII - USA, UK, Australia aty pical genitalia undergoes .” J Pediatric Urol. 2017 Feb;13(1):32.e1-32.e6. 3) Ellens REH, et al. “Psychological Adjustment of Parents of Children Born with Atypical  How could gatekeeping help intersex people? Legal support and advocacy Genitalia 1 Year after Genitoplasty.” J Urol. 2017 Oct;198(4):914-920. 4) Timmermans S, et al. Does patient -centered care change genital surgery decisions?  How can trans advocacy be intersex-inclusive, and intersex  Inter/Act (interactadvocates.org) The strategic use of clinical uncertainty in disorders of sex development clinics. J Health Soc Behav 2018 Dec;59(4):520-535. doi: 10.1177/0022146518802460. Epub 2018 advocacy be trans-inclusive? Intersex stories Oct 10. 5) Tamar-Mattis A, et al. Emotionally and cognitively informed consent for clinical care  “The I is for invisible.”  Inter/Act Youth (interactyouth.org) for differences of sex development. Psy chology & Sex uality, 2013;5(1): p. 44-55. Epub 2013 Sep 17  What does your system do to include or erase people with intersex  "Born Both: An Intersex Life,” Hida Viloria 6) Roen K. Intersex or Diverse Sex Development: Critical Review of Psychosocial Health Care traits? Research and Indications for Practice. J Sex Research. 2019, 1-18, 2019.  ”XOXY,” Kimberly Zeiselman doi:10.1080/00224499.2019.1578331  “By focusing on bodies we don’t focus on the lived realities of 7) Ghidini F. Parental Decisional Regret after Primary Distal Hypospadias Repair: Family and  “Contesting Intersex: The Dubious Diagnosis,” Georgiann Davis, PhD Surgery Variables, and Repair Outcomes. J Urol. 2016 Mar;195(3):720-4. oppression and discrimination.” 8) Krege S, et al. Variations of sex development: The first German interdisciplinary  “Gender Revolution,” Katie Couric and National Geographic consensus paper. J Pediatr Urol 2019;15:114-23. doi 10.1016/j.jpurol.2018.10.008.  How can we talk about intersex experiences in a way that doesn’t objectify intersex bodies? Medical Education Resources

 Diversity 3.0 Learning Series (w ww.aamc.org/initiatives/diversity)

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