TRANS HEALTH CARE 2013: A VIEW FROM THE FRONTLINES ACHA ANNUAL MEETING BOSTON 2013 Norman Spack, M.D. Co-Founder, GeMS-DSD Program Endocrine Division Boston Children’s Hospital Associate Clinical Professor of Pediatrics Harvard Medical School Norman Spack MD Boston Children’s Hospital I have no financial relationship(s) to disclose within the past 12 months relevant to my presentation. AND My presentation does include discussion of off-label use of GnRHa agonists DEFINITIONS GENDER IDENTITY = PRIVATE EXPRESSION OF GENDER ROLE (PSYCHOLOGICAL, EMOTIONAL GENDER IDENTIFICATION) GENDER ROLE = PUBLIC EXPRESSION OF GENDER IDENTITY OBSERVATIONS FROM ADULT TRANS PATIENTS Challenge of gender attribution-being “read” Genotypic skeleton: habitus, height, acral size Male pattern hair loss in MTF Lengthened vocal cords in MTF Small fortune on electrolysis ($120/wk) Significant prevalence of family stress counterphobic social/gender behavior High prevalence of psychiatric Dx & Rx, including 1 suicide; gestures; violence Getting from FTM Goals – Virilize (4 cm clitoris)-quite effective – Suppress menses (norethindrone, tamoxifen) – Remove breasts (size determines surgical method) Methods – Androgen Rx: Testosterone injections, gels (BTB), oral (never) – GnRH analogues (histrelin implant) – Oophorectomy, Hysterectomy (laparoscopic) GIVING “T” SUBQ (per the late Jack Crawford) WARM BOTTLE SLIGHTLY IN HAND USE 3 cc SYRINGE 25G 5/8” NEEDLE INJECT >1 cc AIR INTO BOTTLE DRAW TESTOST. DOWN SLOWLY INJECT LATERAL BUTTOCK (EASY FOR PATIENT TO SELF-INJECT) RUB INJ. SITE 15 SECS.TO DISPERSE Getting from MTF Suppress serum Testosterone via GnRHa or Estrogen (4-10 mg/d) or both (1-2 mg/d) Develop breasts Preserve scalp hair/suppress facial Spironolactone and/or Finasteride Reduce cost of electrolysis Suppress erections Limit masculine facial bone strux Voice, hgt, skeleton-> “gender attribution” The Amsterdam Experiment Treatment of adolescent transsexuals at Tanner 2-3 using GnRHa analogues to: 1) Suppress spontaneous pubertal development 2) Allow for balanced decision regarding sex reassignment 3) Achieve optimal final height and bone development 4) Prevent side effects of pubertal delay using cross-gender sex steroids ~ age 16 The HPG axis and Puberty ? kisspeptin neurons kisspeptin ? GnRH neurons pulsatile GnRH pituitary FSH/LH gonads testosterone, estradiol secondary sexual characteristics PUBERTY GeMS Requirements Tanner 2-5 IN COUNSELING WITH GENDER THERAPIST > 6 MONTHS REFERRAL LETTER FROM THERAPIST, RECOMMENDING MEDICAL Rx SUPPORT OF BOTH CUSTODIAL PARENTS NO SEVERE PSYCHOPATHOLOGY Demographics for All Patients since 1998 Total Biological Females Biological Males N (%) 128 (100) 67 (52.3) 61 (47.7) Age of presentation, mean ± SD* 15.0 ± 3.6 15.3 ± 3.5 14.6 ± 3.7 - 4.1 ± 1.4, median 5 3.6 ± 1.5, median 4 Tanner stage, mean ± SD and median** * No significant difference between biological sexes, p=0.25 by Student t-test. ** Significant difference, p=0.012 by Wilcoxon rank-sum test. Psychiatric History N (%) With psychiatric diagnosis before CHB evaluation* 62 (48.4) On psychiatric medications 43 (33.6) With prior psychiatric hospitalizations 11 (8.6) History of self-mutilation 28 (21.9) History of suicide attempt 12 (9.4) * 13 patients presented with more than one psychiatric diagnosis. Histrelin implant What Do We Know and Infer About Transgender College Students? Very mixed bag requiring different approaches by health services – Some will have declared their gender dysphoria at a very young age: Persist at puberty and receive optimal pubertal suppression Arrive on campus on cross-sex hormones Possibly “bottom surgery” for MTF’s, “top surgery” for FTM’s Have the luxury of “going stealth” – Some will have been discouraged via “reparative Rx,” but persist as trans at college Parental guilt at home – Some will receive hostile family response; “thrown away” These students suffer from “PTSD” and non-treatment Some, in middle or high school will confuse gender dysphoria with sexual orientation, then realize they are transgender Hopefully, these students will have had counseling and hormonal rx – Occasional student may have suppressed his/her gender dysphoria feelings until away from home Some may have previously behaved in a very “cisgender” way (i.e. super-macho behavior in true MTF) A student may have witnessed first community of gender-non-conformity at college: a major challenge for the health service, counseling in a vacuum – Experience in counseling and evaluation students with gender dysphoria is essential – Consider parent triangulation and potential splitting; “this happened because of college!” – Some students who are comfortable in their newly-expressed gender role and on hormonal rx find that their fellow students do not understand how a trans individual in their affirmed role can be gay or lesbian ~55% of MTF’s and 25% of FTM’s – Not all trans individuals desire surgery and a small number reject hormonal rx MTF’s who either reject “bottom surgery” or are waiting until they can afford it are at risk for STD’s and HIV if engaging in passive anal-receptive intercourse – Unprotected NOW means unprotected in the PAST – Some reject the binary notion of gender and see themselves on a continuum, sometimes moving between male and female Initially “gender queer;” in time, many will find themselves affirming a male or female gender If such a student is severely gender dysphoric: may need to be referred for >weekly counseling The student who accepts binary roles but unsure of identity Continually questions his/her gender identity Feeds off the introspective process of college education, particularly courses about gender identity and role In time, perhaps after some experimentation, student is likely to get his/her questions answered with potential help from health service counseling Special circumstances: – The gender-non-conforming student who has Asperger’s Syndrome 10% of our new patient population Has not shown nor expressed gender issues until past ~2 years Extremely obsessive about desire to be the opposite gender Parents confused: Is this just another obsession? Pubertal patients do seem relieved by pubertal suppression – Faculty gender transitions: If it goes well, it is a tribute to everyone involved When it goes badly, nowadays it goes to court The future: Looking brighter than ever – More students arriving at colleges s/p counseling, Rx, surgery – More self-insured universities covering even surgical care – More insurers adding riders to provide coverage – DSM-VI may delete transgenderism as a psychiatric condition; therefore, medical/surgical benefits will be paid – Every medical student, house officer will be trained in gender issues, even child psychiatrists – Transgender individuals will no longer face legalized discrimination in the USA – Optimal care provided in Holland and USA will be modeled by national health services everywhere NEW ACADEMIC PROGRAMS FOR TRANSGENDER YOUTH TORONTO- SICK KIDS L.A. CHILDREN’S- MYRON BELZER SEATTLE CHILDREN’S- DAN GUNTHER BOSTON CHILDREN’S UCSF CHILDREN’S HOSP CHILDREN’S HOSP OF BRITISH COLUMBIA NYU MEDICAL CTR. MAINE MEDICAL CTR. CHILDREN’S MEMORIAL HOSP, CHICAGO SOON: COLUMBIA U, KANSAS CITY,?DALLAS Resources SUGGESTED READINGS Brill S, Pepper R. The Transgender Child: A Handbook for Families and Professionals, 2008. San Francisco: Cleis Press, Inc. Brown ML and Rounsley CA, True Selves: Understanding Transsexualism. 1996. San Francisco: Jossey-Bass Publishers. Ettner, Monstrey S, and Eyler AE(eds.) Principles of Transgender Medicine and Surgery . 2007. New York: The Haworth Press. Endocrine Society Manual of Clinical Practice for Treatment of Transsexual Persons. Journal of Clinical Endocrinology and Metabolism, Sept. 2009. SUGGESTED WEBSITES Gender Identity Resource and Education Society of UK (GIRES): http://www.gires.org.uk Gender Spectrum Education and Training: http://www.genderspectrum.org International Foundation for Gender Education: www.ifge.org Parents, Families, and Friends of Lesbians and Gays (PFLAG): http://community.pflag.org Trans Youth Family Allies (TYFA): http://imatyfa.org World Professional Association for Transgender Health (WPATH): http://www.wpath.org PERSONAL REFERENCES: Spack NP, Edwards-Leeper L, Feldman HA, Leibowitz S, Mandel F, Diamond DA, Vance SR. Characteristics of children and adolescents with gender identity disorder referred to a pediatric medical center. Pediatrics 2012; 129(3): 418-425. Perrin E, Smith N, Davis C, Spack N, Stein MT. Gender variant and gender dysphoria in two young children. J Dev Behav Pediatr. 2010. 31(2):161-4. Spack, NP, Clinical Crossroads, Management of Transgenderism. JAMA 2013.209 (5): 478-484. Hembree WC, Cohen-Kettenis P, Delemarre-van de Waal HA, Gooren LJ, Meyer WJ, Spack, NP, Tangpricha V, and Montori VM. Endocrine Treatment of Transsexual Persons: An Endocrine Society Clinical Practice Guideline. J Clinical Endocr Metab, 2009. 94 (9): 3132-54. Edwards-Leeper L and Spack NP. Gender Identity Disorder. In Augustyn M et al (eds.). The Zuckerman Parker Handbook of Developmental and Behavioral Pediatrics for Primary Care, 3rd edition. Philadelphia, Lippincott Williams & Wilkins, 2010. Spack NP and Edwards-Leeper, L. Medical Treatment of the Transgender Adolescent. In Fisher M, et al (eds,) Textbook of Adolescent Health Care , American Academy of Pediatrics, 2011. Shumer D and Spack N. The Approach to Transgender Youth. Levitsky, Lynne (Ed.) Current Opinion in Endocrinology, Diabetes and Obesity. Wolters Kluwer/Lippincott Williams and Wilkins 2013. 20:69-73.