Principles of Trans Care, WPATH Standards of Care 7, DSM and ICD: A Case Based Discussion

1. Principles of Trans Care, WPATH Standards of Care 7, DSM and ICD:A Case Based Discussion Dan Karasic, MD HS Clinical Professor of Psychiatry, UCSF Psychiatrist, UCSF Alliance Health Project, Transgender Life Care Program and Dimensions Clinic, Castro Mission Health Center Dan.karasic@ucsf.edu

2. A San Francisco Perspective

3. San FranciscoTransgender Health Services http://www.sfdph.org/transgenderhealthservices

4. Transgender Health Coordination Existing Services 09/2013 Projects Point Person Action Steps SITUATION Target Area Identify system barriers to input correct Gender ID and Name Inventory of DPH E-Charting Systems Heather Weisbrod/Maria X Martinez Data/ Electronic Med Records Barry Zevin Transgender Registry 1. Tom Waddell Urban Health, TG Tues. 2. Dimensions Youth Clinic 3. Castro Mission HC 4. Consortium Clinics: Lyon Martin, Mission Neighborhood HC, PHP Women’s Clinic @ SFGH , Native American HC, St. James) 1. Robyn Stukalin 2. Deborah Brown, Esteban Rodrigez 3. Deborah Brown, Linette Martinez Develop e-charting workarounds Medical Educate clinic staff to implement charting workarounds 1. South Van Ness Behavioral Health 2. Transgender Life Care Program (Castro Mission) 3. Dimensions Behavioral Health 4. Alliance Health Project 5. Tom Waddell 6. Walden House 7. Iris Center 8. CBHS Pre-treatment Group with Amber Gray 9. Trans:Thrive 12 week treatment program 1. Katy Davis 2. Laurie Lenrow, Heather Weisbrod 3. Amy Peterson 4. Michelanna Baker, Dan Karasic 5. Robyn Stukalin 6. ? 7. ? 8. Amber Gray 9/ Kate Franza To foster healthy transgender communities in San Francisco , these efforts hope to improve the quality and continuity of care and services available throughout the DPH network. The Transgender Health Coordination Team identifies existing resources and develops recommendation towards an action plan for coordination and collaboration. Mental Health/ Substance Abuse Treatment Ensure that new e-systems accommodate transgender preferred name/gender Jail Services Pursue Jail Services Contacts for development of trainings for Jail Staff Leslie Levitas, Kate Monico Klein Jail Services interested in staff trainings Transgender Advisory Group (TAG) Meetings Jenna Rapues, Seth Pardo Community Health Promotion Transform San Francisco Partnerships: El/La, Trans: Thrive, Instituto de la Raza Jenna Rapues, John Melichar Distribute Guidelines when completed and work toward DPH wide adoption Barry Zevin DPH Best Practices, Transgender Pt Care Policy and Guidelines Conrad Wenzel SFDPH Transgender Services Web Site Dean Goodwin/John Ainglsy SF HIV Health Services TG Best Practices System wide Adoption of Sex and Gender Guidelines Maria X Martinez, Jenna Rapues Sex and Gender Guidelines (CASPER) Training Julie Graham Gender Trainings for DPH Staff: 101, 102, 101.5 Ensure all DPH staff has access and completes gender trainings HIV Health Services SPNS Grant, Clinic @ API for Transgender Women of Color Royce Lin, Robyn Stukalin Research 1. TEACH 2 (Transwomen) 2. Shine (Transfemale Youth) 3. STRIPE (Transmen) Henry Raymond Fisher Erin Wilson Establish Pop. Estimates

5. SFDPH Transgender Health Model (Zevin) • SFDPH Philosophy • “Any Door is the Right Door” • Harm Reduction Approach • official policy of SFDPH since 2000 • Goals: • HIV Prevention • Access to healthcare for underserved populations • Facilitate treatment of HIV and other chronic conditions • Culturally competent care

6. SFDPH Transgender Health Model • Prior to 1993: • Focus on mental health care • Selection of “stable” patients for transition related care • Many people resorted to street or unscrupulous doctors for hormones • Patients did not access other healthcare due to feelings of discrimination Zevin B.

7. SFDPH Transgender Health Model • After 1993 Focus on Primary Care • 1993 Tom Waddell Clinic Transgender Tuesdays • “They came for hormones, they stayed for the care.” • Intake criteria – self defined as transgender • Informed consent model for prescribing hormones • Multidisciplinary model in community health center setting • > 1000 patients treated since 1993 with very positive outcomes • Dimensions clinic for youth • Other primary care and mental health programs with inclusive criteria • Zevin B.

8. Advantages of Focus on Primary Care • Patients get care for full range of medical problems • Hormone therapy is monitored by medical staff familiar with patient’s other health issues • Primary care providers are comfortable with prescribing hormones • Requires some time investment in training • Helpful to have expert staff available for consultation • Mental health staff included in primary care team are highly accepted

9. Informed Consent Model • Ethical construct familiar to healthcare providers • Widely and successfully used in multiple settings • Requires healthcare provider to effectively communicate benefits, risks and alternatives of treatment to patient • Requires healthcare provider to judge that the patient is able to understand and consent to the treatment • WPATH SOC7 states protocols using informed consent model are consistent with SOC7 • Applies to hormone therapy • Informed consent model does not preclude mental health care • Recognizes that prescribing decision ultimately rests with clinical judgment of provider • Informed consent is not equivalent to treatment on demand (Deutsch, 2012)

10. Informed Consent Model • Practical Foundation • Mental health care for poor people scarce even for those with severe mental health disorders • Requiring mental health care has been a barrier to primary care • Requiring mental health provider to serve as gatekeeper may erode therapeutic relationship • Philosophical Foundation • We don’t ask for mental health permission for other medical treatment with equally compelling need, benefits, and risks • Respect for Autonomy is central ethical principle (Hale, 2007)

11. Informed Consent • Assessment Process • Two stage process • Screen for risk • complete a full evaluation • Establish competence & gain a fuller understanding of gender identity • Consultation is essential if uncertain

12. Informed Consent How to determine competence • Procedures, risks and benefits are explained • Patient demonstrates understanding • Other complicating factors may include: • Autism Spectrum • Psychosis • Cognitive Impairment • Informed consent is on-going; may change with patient presentation • Mental health and substance abuse can be addressed simultaneously • Societal ills influence patient presentation

13. Advantages of SFDPH Approach • Patients able to access culturally competent healthcare in timely manner • High patient acceptance • Good health outcomes Zevin B

14. Publicly funded SRS in SF • The Board of Supervisors adopted resolution number 288-12 in July 2012, encouraging the Department to ensure the provision of medically necessary gender-transition-related care. In addition, in November 2012, the San Francisco Health Commission approved the following: • Developing a new program to provide sexual reassignment and gender affirming surgery to eligible uninsured transgender adult residents • Using gender identity disorder as a clinical indication for surgical procedures and • Removing sexual reassignment surgery from the list of excluded services under the Healthy San Francisco (HSF) program.

15. Expansion of Access to Transgender Surgery • 2012 – New project offered by SFDPH with support of city and county to provide surgery for uninsured people • Referrals for surgery originate with primary care • Requirements as in SOC 7 • Focus on training additional mental health staff to meet need for assessments • Focus on patient education and preparation to assure best outcomes

16. Transgender Health Services • Surgical Treatment options embedded in larger system of primary medical and mental health care. • Since the program began accepting referrals there have been 40 total referrals for transition-related procedures. • Most commonly sought procedures include chest reconstruction and vaginoplasty. • All referrals are initiated through primary care and are reviewed by the Transgender Health Services team

17. Instructions for Patients • See a Medi-Cal or Healthy SF medical provider in San Francisco for at least 1 year. Attend appointments regularly. ● Make sure your medical provider knows that you are interested in surgery • You will need two letters of assessment from mental health providers. Your mental health provider can work with you to develop a treatment plan to work on any areas that might interfere with good surgery outcomes including: cigarette cessation, stable and reliable housing for recovery, managing substance use, stabilizing mental health concerns. • You will need to go over a patient education form with your medical provider to confirm that surgery is right for you and you know all the risks involved. • Your medical provider will complete a medical evaluation form.

18. Patient Education for Surgery for Gender Dysphoria • Education and preparation • Realistic expectation of outcomes • Identify and remove barriers to good outcomes • Specific education available for each type of surgery • Available on SFDPH public website transgender portal and in eReferral for transgender health services

19. Education and Preparation for Surgery • Discuss fertility issues with all patients considering SRS involving the reproductive system • Educate patients about the WPATH SOC7 criteria including the rationale for required evaluation and documentation of gender dysphoria and other requirements

20. Cases and discussion Cases A., B., C., and D. Discussion: Access to care and WPATH SOC 7 Gender spectrum: principles of medical and mental health care Care for trans patients/clients with co-occurring mental health issues Diagnosis: DSM 5 and ICD 11 Life Span issues

21. Gender spectrum case presentation • “A.” is a 21 yo African American, assigned male at birth. Referred by a psychotherapist in the Dimensions Clinic, which serves gender non-conforming and trans adolescents to young adults. • A. presents considering hormonal therapy. Feels facial features, body are becoming too masculine with age. Has intense discomfort with male genitalia and libido, but wants flat chest. Identifies as neither male nor female.

22. Case history • A. reports dropping out of university due to mood swings and heavy drinking • Works off and on in restaurants to pay rent, but spends much of time at home, drinking up to 750ml vodka plus wine/day • Reports several day periods of edginess, racing thoughts, insomnia, alternating with periods of depression, hopelessness, fatigue, SI

23. Psychiatric and developmental history • No history of past psychiatric treatment • Reports in childhood preferring play with girls and being perceived as feminine • Father, who was in and out of prison, was physically and emotionally abusive, with A.’s perceived femininity as a child; good relationship with mother.

24. Sexuality and relationships • Identifies as bisexual. Was in relationship with trans man when seen initially, then with a cis woman, and now in stable relationship with a cis man

25. Treatment: Stabilization of psychiatric illness • A. was diagnosed with Bipolar Disorder, Type II and alcohol dependence. Treated with a mood stabilizers. (First lamotrigine, then low-dose risperidone was added. Later changed to quetiapine, which has been effective for mood swings.)

26. Treatment: Alcoholism and hormonal therapy • Encouraged to address alcohol dependence. Was not interested in sobriety but agreed to reduce use. Issue addressed in therapy and support group, but A. has not attended 12 step meetings. • Sobriety was not a pre-condition for hormones, but A. informed that primary MD would not initiate hormonal treatment for gender dysphoria if liver enzymes (ALT/AST) were elevated, which motivated A. to reduce drinking

27. Treatment: Hormonal therapy Multiple weekly sessions with psychotherapist as well as several sessions with psychiatrist, to stabilize psychiatrically and determine best course of gender treatment. A. was started on spironolactone, an anti-androgen. Low-dose, and later full-dose estradiol was added.

28. Case: Effects of hormonal therapy • Estradiol and spironolactone reduced libido and discomfort with masculine features. Keeps small beard initially, but appearance gradually becomes more feminine.

29. Case: Change of name • Legally changes to a different male name, with female middle name, and preferred to be called by androgynous shortening of last name. Starts using female pronoun, and feminine pronunciation of her first name. Changes gender on driver’s license to “F.” • Law in California (and federally) allows legal gender change without surgery

30. Improvement in functioning with treatment • Completes a prestigious internship presenting as male; gets some comments from co-workers about androgyny and breast growth. • Returns to school, comfortable presenting as female. In stable, supportive relationship. • Still drinks 1 bottle wine/evening, but not drinking during day. Mood remains stable on quetiapine. • Plans support group for genderqueer African American youth

31. Two years later • Returns for psychiatric consultation on medications: Seroquel is too sedating • Started on lithium carbonate • Presents as female; identity genderqueer • Married, stable relationship • Working full-time • Moderate drinking (by pt report)

32. Three years later (September 2013) • Returns seeking vaginoplasty • San Francisco now provides for transgender surgery for low income people • Presentation female but still identifies as genderqueer • Is comfortable with chest; seeks “flat” genital area

33. Genderqueer pt’s reasons for seeking surgery • Has dysphoria about penis, consistent since initial presentation. • Wants “flat” genitalia, not necessarily female, but seeking vaginoplasty as best available treatment for dysphoria.

34. “A” seeking surgery: Psychosocial • Bipolar disorder well-controlled on lithium. • Binge drinks about once a week. • Working full-time as cook. • Married; stable housing and can be assisted post-surgery by husband

35. Case Discussion • Access to care • Informed consent model and SOC 7 • Medical and mental health care across the gender spectrum

36. Access to care • Patients at Dimensions Clinic seen regardless of ability to pay. • Respectful and welcoming environment: Transgender staff, bilingual staff, support groups, and informal peer support • Dimensions Clinic uses “informed consent” model, but with strong mental health presence • Universal education of staff

37. Access to surgery • San Francisco now provides trans surgery through Healthy San Francisco and San Francisco Health Plan (managed MediCal) • California Department of Managed Health Care, California Department of Insurance, Covered California inclusive of trans care • San Francisco clinics use informed consent model for hormones, and WPATH SOC 7 for surgery

38. Closing the gap: WPATH SOC 7 and the “Informed Consent” model • Community clinics, often using a team approach, are providing hormonal therapy without a letter from a mental health professional • Assessment is more than just having the capacity to understand risks/benefits: experienced medical providers use clinical judgment that hormonal therapy is indicated • Clinics often have mental health providers for referral when indicated by intake staff or medical provider

39. SOC 7: Access to care • WPATH SOC 7 brings “informed consent” clinics under SOC. These clinics do not require a letter from a mental health professional to start hormones, which lowers barriers to care. However “informed consent” clinics are expected by SOC to refer those with mental health issues for treatment.

40. SOC 7 and Hormone Therapy Elimination of 12 weeks of psychotherapy or 12 weeks living in role of “opposite sex” Presence of persistent gender dysphoria is basis for hormonal treatment Hormonal therapy indicated for gender dysphoria across the gender spectrum

41. SOC 7 and Surgery • SOC 7 requires one mental health assessment for chest surgery and two for genital surgery • Criteria for each surgery include: • Persistent, well-documented gender dysphoria • Capacity for informed consent • If significant medical or mental concerns are present, they must be (reasonably) well-controlled

42. SOC 7 and Surgery: Hormones • Chest surgery for trans men: Hormone therapy not a prerequisite • Breast augmentation in trans women: Hormone therapy recommended for at least 12 months (for better outcome) • Genital surgery: 12 continuous months of hormone therapy (unless not clinically indicated)

43. SOC 7 and Social Transition • Social transition is not a requirement for hormones, chest/breast surgery, hysterectomy/salpingo-oophorectomy, or orchiectomy • For vaginoplasty, metoidioplasty, phalloplasty: 12 continuous months of living in a gender role congruent with gender identity

44. Transition across the gender spectrum • Pts present with discomfort with incongruity of physical body and/or expected social gender role with their gender identity and/or preferred gender expression. • Medical and/or social transition can help relieve this discomfort and/or bring more life satisfaction • Intermediate place on gender spectrum for some fits better with sense of self and/or life circumstances.

45. Approach • Rather than impose a given narrative on patient, assist patient in finding own path.

46. Access to Care and the SOC 7: Patients with Co-occurring Mental Illness • SOC 7 allows for simultaneously addressing gender dysphoria with co-occurring mental health and substance abuse issues

47. Care for trans patients with co-occurring mental illness • Patient empowerment and autonomy in recovery-oriented care • Patient-derived narratives of gender expression and identity, with support of gender spectrum • Simultaneously addressing mental illness, substance abuse, and gender dysphoria is often necessary, while working to optimize functioning in trans people with co-occurring psychiatric illness

48. Hormonal therapy and severe mental illness • Hormonal therapy safe and effective for gender dysphoria in patients with severe mental illness • Hypomania/mania with testosterone is rare, even with supraphysiologic doses • Occurred in 2/50 cis men given 600mg/week testosterone. (Pope, et al, Arch Gen Psychiatry 2000) • Reduced mental health symptoms overall in trans men with testosterone treatment; weekly injections better tolerated than every 2 weeks. (Davis& Meier, 2013) • Risk/benefits must be weighed, including mental health improvement with relief of gender dysphoria, and harm from withholding care.

49. Diagnosis Binary diagnostic criteria in ICD 10 and DSM IV not helpful in patient “A.” DSM 5 Gender Dysphoria diagnosis includes gender spectrum. Treatment goals for Gender Dysphoria are alleviating gender dysphoria and improving functioning

50. Diagnosis: New DSM 5 criteria DSM5.org Gender Dysphoria (in Adolescents or Adults) A marked incongruence between one’s experienced/expressed gender and assigned gender, of at least 6 months duration, as manifested by 2 or more of the following indicators: 1. a marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics (or, in young adolescents, the anticipated secondary sex characteristics) 2. a strong desire to be rid of one’s primary and/or secondary sex characteristics because of a marked incongruence with one’s experienced/expressed gender (or, in young adolescents, a desire to prevent the development of the anticipated secondary sex characteristics) 3. a strong desire for the primary and/or secondary sex characteristics of the other gender 4. a strong desire to be of the other gender (or some alternative gender different from one’s assigned gender) 5. a strong desire to be treated as the other gender (or some alternative gender different from one’s assigned gender) 6. a strong conviction that one has the typical feelings and reactions of the other gender (or some alternative gender different from one’s assigned gender)