TRANSGENDER HEALTHCARE Barry Zevin, MD Conrad Wenzel, MSW Disclosures Dr. Zevin is an employee of the San Francisco Department of Public Health There are no other relevant financial or personal relationships that could cause bias in this presentation No medications used as feminizing / masculinizing therapy for transgender patients are FDA approved for this indication 1
Why Focus On Trans Healthcare? The Lived Realities 56% reported verbal harassment in public places 61% experienced physical assault 64% experienced sexual assault 2
Nearly 4 times more likely to have household income of less than $10,000 per year compared to the general population. Health Conditions Associated with Transgender Identity Hx of assault, victimization, abuse, discrimination Depression, Substance use disorders, Trauma, Suicidality HIV infection Barriers to healthcare / Discrimination in medical settings 3
Prevalence 1:11,900 1:45,000 MTF 1:30,400 1:200.000 FTM Conventional prevalence based on presentation to specialized centers.3% to 1.4% of the general population Based on community surveys % even higher if includes ambivalent gender identities Numbers seen in healthcare settings rising At least 2000 seen in SFDPH settings over past 5 yrs Based on ICD-9 codes and TG marker in registration Implications for HIV and Other Prevention Are behavioral risks for HIV and other problems concentrated in.01% who present for specialized transition related care or spread through much much larger trans* population? Risk in this population still imperfectly understood Discrimination appears to effect larger population African American and other minority populations at higher risk 4
Access to care (NTDS) Experienced refusal to provide care Postpone care due to discrimination by provider Healthcare Discrimination 28% report harassment in medical settings 20.9% report healthcare providers used harsh or abusive language 7.8% report health care professionals were abusive or physically rough 2% reported violence in the doctor s office 5
Healthcare Discrimination Patients will not disclose that they are transgender if they feel unsafe. This can result in compromised medical care. Ex: Doctors won t offer pap screens if they don t know a person has a cervix or prostate exams if they don t know a person has a prostate Access to care 50% of sample reported having to teach their medical providers about transgender care 6
Health outcomes HIV 2.64% reported having HIV, a rate 4 times high than the general pop. at 0.6% HIV rates higher for transgender people who have had experiences of homelessness than those who have not (7.12% vs 1.97%) Trans Responsive Care is Possible (and not too difficult) 7
Know your patients legal protections The Gender Nondiscrimination Act, CA Discrimination illegal in housing, employment, and public accommodations HIPAA transgender identity is protected health information Disclose is a violation of HIPAA Know what s covered Medi-cal: Since 2001 Medi-Cal prohibited from categorically denying coverage for transgender people, including surgeries Medicare: covers medically necessary hormone therapy, exclusion on surgery lifted 5/2014 Other insurance in CA: Can t discriminate if medically necessary VA: Covers everything except surgery Other states: various policies 8
How to Make The Clinic More Welcoming Physical Environment Gender neutral bathrooms Visible and welcoming signage, magazines, posters Intake Forms 2 Part Question Sex and Gender Option for legal name and name the person uses Place to designate Appropriate gender pronoun How to Make The Clinic More Welcoming Protocol for navigating electronic health records and the real live person Protocol for intervening when harassment or discrimination occurs between clients/patients Ongoing transgender trainings for staff 9
Get Familiar with the Lingo Terms are always changing Paradox of definitions: both crucial and meaningless It s ok not to know all aspects of how someone identifies in order to treat them respectfully and give them good care Know why you re asking Genderbread Person 10
Terms Transgender Cisgender / Not transgender Gender Non-Conforming Sexual orientation Gender Galaxy 11
Tips on Terms Transgender is an adjective, not a noun Ex: Gina is a transgender woman Tom is a transgender man Ex: Gina is a transgender Gina and Tom are transgenders Gina and Tom are transgendered Pronouns Honor the patient's preferred gender identity and use the pronouns and terminology that the patient prefers. Linked to not only patient feeling welcome, but provider comfort. Understand the importance Visual cues misleading with clients in transition or people who are fluid Focus is on not on offending client, not provider comfort Ask, Practice, apologize if you misstep, Do better next time rinse and repeat. 12
More Best Practices Don t try to guess or ask about a person s real gender who they are is who they tell you they are Don t discuss your beliefs about whether or not a person passes Stay focused on the issue that brought the patient in Don t ask about a person s body parts unless its clinically necessary A Note About Transgender Medical Care Anatomy Identity Transgender specific care can include: hormones and surgery 13
GUIDELINES FOR TRANSGENDER MEDICAL CARE Possible Topics Hormone Therapy Informed Consent Dosing and Monitoring Patient Education Interactions Health Promotion / Disease Prevention HIV, STD, Sexual Violence Prevention Routine Health Maintenance Special Issues Sexual functioning, fertility, tucking and binding, silicone and pumping Cancer Screening Surgery Preparation and Aftercare 14
Gender Spectrum and Gender Dysphoria WPATH SOC 7 th version Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People. Gender expression and gender identity occur on spectrum Strong evidence against binary conception of gender Diversity not pathology Gender dysphoria in DSMV Gender identity disorder (DSM IV) still used as billing code etc. Natural History of Gender Dysphoria Consequences of untreated gender dysphoria Suicidality / suicide Neglect of health and healthcare needs Resorting to black market or unscrupulous MD s Unmonitored hormone therapy with adverse effects High risk sexual behavior Substance use HIV and other infectious diseases Vulnerability to victimization Attempts at self surgery or surgery by unscrupulous providers Silicone and other injections pumping parties 15
Harm related to treatment vs harm related to not treating Possible Harms related to treating Possible adverse effects of hormones or surgery Irreversible effects that will later be regretted Clinician being over-concerned with gender presentation and neglecting other areas of health 16
Possible Harms Related to Not Treating Continued misery and suffering related to being unable to express gender identity Continued suicidality, depression, substance use, victimization, etc. Continued vulnerability to HIV, STD s, etc. Clinician undervaluing of gender concerns may be retraumatizing Continued mistrust of the healthcare system Implications for HIV Prevention Ability to provide hormones in primary care setting can increase engagement in care Risk in this population still imperfectly understood Discrimination appears to effect larger population African American and other minority populations at higher risk 17
Hormone Therapy Standard vs. Informed Consent Model (WPATH SOC7) Standard Initiation of hormone Rx after psychosocial assessment by qualified mental health professional Recommendation for team care or collaborative model Psychotherapy not required Experienced hormone prescribing medical provider may meet requirement Informed consent Informed consent model Rx initiated by prescribing MD Based on clinical judgment Lack of contraindications Pt. capacity to give informed consent Informed consent 18
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 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) Hormone Therapy Feminizing /masculinizing hormone therapy is medically necessary for many Goals of therapy vary Relief of gender dysphoria may occur with varying doses and various degrees of transition Outcomes of hormone therapy have been very successful 19
General approach to prescribing Most effective when collaboration with patient, other involved clinicians, and prescriber Educate patients that not everyone who is gender nonconforming requires hormone therapy Assess and discuss possible benefits of hormone therapy Assess and discuss possible harms of hormone therapy General approach to prescribing Acknowledge limits of knowledge Patients make different decisions and have different feelings about body changes at different stages in life we are more cautious about giving treatment that causes irreversible changes Balance benefits with possible harms from patient s point of view Assure patient is making informed decision and is able to give consent 20
Hormone Therapy Various regimens proposed and used based on experience European and American regimens differ 3 theories of hormone therapy Attempt to recreate hormone milieu of opposite gender Attempt to recreate hormone milieu of puberty for opposite gender Customize to values and goals of individual patient and assess by subjective response Hormone Therapy: patient and physician values and goals Lower dose Longer time to same changes? Less adverse effects? Dose dependent effects vs idiosyncratic vulnerabilities Less risk of irreversible unwanted changes Higher dose More rapid changes and complete changes? Less risk of patient using illicit hormones 21
Feminizing hormone therapy Anti-androgens Estrogens Anti-androgens GnRH agonists Especially useful for blocking puberty in children Expensive Not covered on many formularies Spironlactone Widely used in USA Inhibits testosterone production Inhibits androgen binding Cyproterone acetate (progestin widely used in Europe not available in US) Finesteride, etc (may be useful adjunct or when others contraindicated not available) 22
Feminizing Hormone Therapy Anti-androgens - Spironolactone Gender Related Effects facial and body hair growth progression of male pattern baldness libido erections Mild breast growth (irreversible) Feminizing Hormone Therapy Anti-androgens - Spironolactone Adverse effects Mild diuretic Hyperkalemia(potentially life threatening) High risk when combined with ACEI, ARB High risk for patients with kidney disease libido, erections Risk of osteoporosis if used in long term without estrogen 23
Feminizing Hormone Therapy Anti-androgens - Spironolactone Mood, Behavioral, & Sexual Effects Effects of lowering testosterone vary widely Decreased libido & erections are desirable for some patients and undesirable for others ask! Mood and energy may drop but be offset by satisfaction with effects Feminizing Hormone Therapy Anti-androgens - Spironolactone Limitations Minimal feminization No effect on facial or other bone structure Can t reduce amount of hair follicles Interactions ACEI, ARBS, digoxin, other K+ sparing diuretics No interaction with tobacco Danger with street drug use that results in dehydration 24
Feminizing Hormone Therapy Estrogens 17β-Estradiol (oral, sub-lingual, injectable, transdermal, etc) many brand names Conjugated equine estrogens (aka Premarin, aka horse estrogen) Ethinyl estradiol (no longer used for feminization due to increased risk of thrombosis) Estrogens - Gender Related Effects Breast development (irreversible) Redistribution of body fat (partly reversible) Softening of skin Suppression of testosterone production Requires higher doses when used alone Improved mood Shrinkage of testes (partly reversible) 25
Estrogens mood, behavioral, & sexual effects Mood swings / moodiness libido many people describe feeling more comfortable or desirable sexually Emotional changes especially when starting or stopping or changing dose in sexually stimulated erections Changes in sexual interest / orientation Estrogens Adverse Effects Thrombosis Most serious and dreaded adverse effect Not common Life threatening Increased risk of deep vein thrombosis and pulmonary embolism Specific known risk factors Other thrombotic conditions rare but increased Stroke, heart attack, retinal vein or artery, others 26
Estrogens - Common Adverse effects weight, Adverse changes in lipid levels in prolactin levels nausea / vomiting, migraine / headache, melasma (skin darkening), skin irritation from estradiol patches Estrogens - Less Common Adverse Effects risk of cardiovascular events in those over age 50 with other cardiovascular risk factors especially those taking progesterones in addition to estrogens transient liver enzyme abnormalities, risk of gallbladder stones, risk of diabetes mellitus particularly in those with family history or other risk factors in blood pressure note spironolactone reduces blood pressure Impaired fertility Regret of irreversible changes 27
Estrogens - rare or plausible but have not been observed liver damage Prolactinoma Estrogens clearly exacerbate pre-existing adenoma Open question as to whether estrogens cause adenoma Usual endocrine issues due to microadenoma not relevant for transgender patients permanent sterility risk of breast cancer compared to men never exposed to estrogen risk meningioma Estrogens Limitations Degree of breast growth, fat redistribution, skin softening, etc very variable Breast growth rarely greater than B cup and structure of chest remains male Generally most changes in younger people, least in older people Height, basic body structure, facial structure don t change 28
Estrogens Interactions Estradiol Interactions with other medications not well studied at these doses No important interactions with HIV medications or other commonly used medications for other chronic diseases Cigarettes increase metabolism and decrease effectiveness of estrogens Cigarettes increase risk of DVT and other cardiovascular risks 10 things to know about feminizing hormone therapy 1. More isn t always better / less isn t always better 2. Importance of smoking cessation 3. Psychological benefit may be more than physical changes 4. Hormone therapy cannot get rid of hair follicles 5. Decision to start, continue, or increase hormones must include benefits, risk of adverse effects, and risk related to what will happen if a person does not get it 29
10 things to know about feminizing hormone therapy 6. Estrogen is not toxic to the liver or kidneys with very rare exceptions 7. Counsel patients on fertility impairment and offer sperm banking to interested patients prior to starting therapy 8. Patches or shots may be the safest for many patients over 40 or with other health issues 9. Ask about sexual functioning and expectations about erections before start or change 10. Changes related to any particular hormone or dose may take 3 months or longer to be noticeable Masculinizing Therapy: Testosterone Injectable Patch Gel or solution 30
Testosterone gender related effects Cessation of menses Voice change to a male range (irreversible) hair growth on face, chest, extremities (irreversible) muscular mass & strength (partly reversible) Redistribution of body fat (partly reversible) Clitoral enlargement (irreversible) Testosterone mood, behavioral, & sexual effects More contentment, Greater extroversion Less somatization in affective intensity libido Changes in sexual interest / orientation Increased risk behavior for STD s, HIV in population that may not have received HIV prevention services Exaggerated mood changes at beginning and end of dosing for injected testosterone 31
Testosterone Common Adverse effects weight, members to oily skin, testosterone with gel acne, Unwanted vaginal atrophy, masculinization in female partner or kids male pattern baldness, emotional changes, Sweating HDL cholesterol Snoring level, Insomnia skin irritation with Reduced fertility patch (partly reversible) Exposure of family Testosterone Less common adverse effects peripheral edema blood pressure erythrocytosis transiently abnormal liver enzymes dyslipidemia obstructive sleep apnea skin irritation with gels increased aggressiveness Not common, when occurs predictable in pts with previous hx of poor impulse control skin ulceration with patch Regret of irreversible effects 32
Testosterone - rare or plausible but have not been observed HTN liver dysfunction risk of cardiovascular disease risk of breast cancer risk of endometrial hyperplasia risk of ovarian cancer Testosterone Limitations No effect on height No effect on breast size or composition Clitoral growth not adequate for insertive intercourse Interactions Possible interactions with warfarin Decrease need for glucose lowering in diabetics 33
10 things to know about masculinizing hormone therapy 1. Importance of smoking cessation 2. Facial / body hair growth, voice deepening may occur quickly even at low doses and is irreversible 3. Male pattern baldness may occur quickly and is irreversible 4. Almost everyone can be taught to self inject testosterone but everyone needs to be taught 5. Libido can increase and sexual attractions can change with start of testosterone (think adolescent boys) 10 things to know about masculinizing hormone therapy 6. If patients have mood swings on every 2 weeks injectable testosterone may be helped by changing to every week (at ½ dose) or patch or gel 7. Testosterone usually does not cause rage, aggression, or violence (even in high doses) 8. Counsel regarding loss of fertility and possibility of ova banking 9. Uterine bleeding after being on a stable testosterone dose requires a medical work up 10. Testosterone is not a reliable contraceptive and other methods are required if patients are having vaginal sex with cisgender men 34
Transgender Surgeries What is covered How do we get it covered Covered Surgeries (HSF, Medi-Cal) Mastectomy w/ chest reconstruction Hysterectomy/ salpingo-oophrectormy Vaginectomy/colpocleisis Metoidioplasty Phalloplasty with Penile Implant Scrotoplasty Urethral reconstruction Orchiectomy Penectomy Vaginoplasty Clitoroplasty Labiaplasty Feminizing mammoplasty Genital Hair Removal prevaginoplasty/phalloplasty Not Covered: facial feminization, body contouring, tracheal shave, facial hair removal* 35
Dr. Curtis Crane Healthy SF and Medi-Cal Metoidioplasty, Vaginoplasty, Phalloplasty SF General Hospital Orchiectomy & Hysterectomy: surgery staff Chest and breast surgeries and revisions: Dr. Esther Kim For Anthem patients: Genital surgery with Dr. Maurice Garcia at UCSF Dr. Marci Bowers Medi-Cal Vaginoplasty Coming in 2016: All surgeries available at SFGH? A note about Medicare Currently there is no pathway for coverage for vaginoplasty, phalloplasty, or metoidioplasty for patients with Medicare coverage 36
Patient criteria for surgery 18 years or older 12 continuous months on hormones (unless hormones are contraindicated or not desired by patient) Surgery referrals require the following: 2 psychosocial assessments & referral letters (1 assessment for Chest Reconstruction / Breast Augmentation) Medical evaluation form Medical history and physical exam with med list How to support patient while waiting Opportunity for patients to work on further stabilizing medical conditions, housing, mental health, reduction of substance use, saving money for supplies Start hair removal 6-9 months before vaginoplasty and phalloplasty 37
Aftercare Considerations Safe and clean place to recover Medical Respite available in some areas Transportation Paratransit / Medical Taxi Support system IHHS, Health at Home Meals Project Open Hand Medical Supplies Some supplies covered by Medi-Cal VAGINOPLASTY Common Complications and Clinical Considerations 38
Normal Healing Discharge Vaginal discharge that is brownish yellow is normal in first 4-6 weeks after surgery Urine Blood in urine and at opening of urethra is generally normal, up to 6 weeks Swelling Some swelling is normal, 4-6 weeks Early Complications After Vaginoplasty Granulation tissue Infection Hematoma Urinary stenosis Fistula Wound breakdown or necrosis Pain, neuropathic pain, phantom sensation 39
Granulation tissue Usually 1 st few weeks after surgery Patient is usually still following up with surgeon Can be treated with silver nitrate sticks Infection Blanching erythema, fever, nausea and vomiting, or urinary frequency or urgency would be the most common signs of infection Wound infection UTI Respiratory Neo-Vaginal Discharge / Infection GC / CT possible but unusual BV type bacteria common but unclear if benefit to treat 40
Urinary Problems Stenosis Fistula Spraying, Change in stream is normal 41
Wound breakdown or necrosis Generally Obvious Non-dissolving (dissolving)sutures ok to clip Depression / Anxiety Usually responds to support May need more care 42
Late Complications Vaginal Stenosis Pain Numbness or neuropathic symptoms Anorgasmia What Do I Do When Patient Has a Complication Encourage patient to follow up with surgeon Some complications can be treated in primary care settings Contact surgeon to consult 43
Routine Health Maintenance for Trans* People Preventative Services Cancer Screening Base on Anatomy Pap smears for transmen with cervix consider alternative options to speculum exam Breast Cancer Screening 44
Cigarette Addiction Motivation to quit is high in population High desire to stay healthy Many hormone protocols do not allow initiation or escalation of dose without smoking cessation Success rate for smoking cessation has been very high Motivational interviewing is used Expert counseling is offered Adjunctive medications are used Relapse prevention is stressed It is possible and desirable to work on smoking even if other substance use or MH disorders are still active or severe Resources World Professional Association for Transgender Health http://www.wpath.org/ SFDPH Transgender Health Services http://www.sfdph.org/transgenderhealthservices UCSF Center of Excellence for Transgender Health http://transhealth.ucsf.edu/ Transline project- health.org/transline Vancouver Coastal Health transhealth.vch.ca 45