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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.