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Affirming Care for People with Intersex Traits: Lessons from LGBTQ Health

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Affirming Care for People with Intersex Traits: Lessons from LGBTQ Health 9/30/2020 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: Intersex 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 Psychiatry and Behavioral Health Penn State College of Medicine people with intersex traits October 9, 2020 1 2 3 1 9/30/2020 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, hormones, 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 gender 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 4 5 6 2 9/30/2020 Endosex female Endosex male Endosex female Endosex male XXY Karyotype XX XO XY Karyotype XX XY XY/XX Quantity or function Hormones Estrogens Androgens variance Hormones Estrogens Androgens Testes Ov aries Gonads Epididymis Internal genitalia Fallopian tubes ductus deferens Testes Uterus & cerv ix Ovotestes seminal v esicle Ovaries Epididymis Upper v agina Uterus/vagina ejaculatory duct Fallopian tubes ductus deferens Prostate Internal genitalia Overview of Intersex Traits Uterus & cervix seminal vesicle Upper vagina ejaculatory duct Prostate Glans length External genitalia Clitoris Penis Vulv a/Labia Vulva/scrotum Scrotum Urethra Clitoris Penis External genitalia Vulva, Labia Scrotum Breast dev elopment Breast/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, facial hair Pubic & axillary hair Pubic, axillary, facial hair 7 8 9 3 9/30/2020 Classification of Intersex Variations History of Intersex Chromosomes Gonads Hormones Genitals • Klinefelter • Gonadal • Androgen • 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 10 11 12 4 9/30/2020 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 13 14 15 5 9/30/2020 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 ▪ Vaginoplasty ▪ With insufficient psychosocial support ▪ Propagated shame, stigma, and isolation ▪ Hypospadias surgery ▪ To address distress ▪ Patients continue to grapple with these ▪ Hormonal interventions 16 17 18 6 9/30/2020 “Between a Rock and a Hard Place” Parental Stress Legacy of the Old Model Physical risks: ▪ Scarring and chronic pain “Do surgery, or do nothing” ▪ Urinary and sexual dysfunction ▪ Sterilization Western ▪ Lifelong HRT Intolerance of Depression and endo/cis/hetero- “Do something!” Uncertainty Anxiety ▪ 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 7 9/30/2020 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 22 23 24 8 9/30/2020 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 hypogonadism • 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 25 26 27 9 9/30/2020 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 28 29 30 10 9/30/2020 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 mental health 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 Intersex Awareness Day (10/26, Inter/ACT Advocates) ▪ Refer to support groups What else do you want to know? 31 32 33 11 9/30/2020 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 sexual attraction. 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 genders information and consent ▪ Discuss options for neov agina Researched different options for dilation, vaginoplasty,
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