Clinic for Gender Variant ChildrenOpened Boston 2007

Treatment offered to adolescents for at least 3 years prior to this

Treatment options

UK: No physical intervention until child is 16 Holland: Clinical assessment followed by physical

intervention at age 12+, Tanner Stage 2/3. To date they have treated or are treating 73 teens. None have changed their minds, or attempted suicide since been accepted into their treatment protocol

Belgium: New clinic opened in 2005 following Dutch protocol

Germany: New clinic opened in 2006 following Dutch protocol

Treatment options

Norway: Follow Dutch protocol Rest of Europe: Often no intervention before 18 years

of age, but this is changing rapidly Canada: Offers early suspension of puberty Australia: Offers early suspension of puberty USA: Intervention dependent upon individual clinician.

Currently between 8 - 10 MD’s openly treat children under 18, inc Dr Spack at Children's Hospital Boston, who has been treating adolescents for over 3 years

Clinical management of gender identity

disorder in adolescents – published

June 2006, Amsterdam Gender Clinic

http://www.eje-online.org/cgi/content/full/155/suppl_1/S131

The paper documents the treatment protocol established by Henriette A Delemarre-van de Waal and Peggy T Cohen-Kettenis. Follows progress of 54 adolescents – excerpt:

‘Since the experience of a full biological puberty may seriously interfere with healthy psychological functioning and well being, we have changed our protocol after the first follow-up studies on the 16–18-year olds.

Amsterdam Gender Clinic cont…

Adolescents are now allowed to start puberty suppressing treatment with gonadotrophin-releasing hormone analogues (GnRHa) if they were older than 12 years of age and fulfil the *same criteria. They should also have reached Tanner stage 2 or 3 in combination with pubertal levels of sex hormones.

The suppression of puberty using GnRHa is a reversible phase of treatment. This treatment is a very helpful diagnostic aid, as it allows the psychologist and the patient to discuss problems that possibly underlie the cross-gender identity or clarify potential gender confusion under less time pressure.

* refers to the WPATH criteria for a formal diagnosis of gender dysphoria

Facts about GnRH analogue:

Uses of GnRH analogue: Precocious puberty The use of GnRHa was piloted in the late 1970’s for

suspension of precocious puberty in children by Dr Crigler of the Children’s Hospital Boston and Dr Crowley at Mass General Hospital, with superb results. Fully reversible with no long term side effects, its use has become the primary treatment worldwide to combat this condition

In adults, there is extensive experience in the use of this medication where it is necessary to suppress the sex hormones. For example:

Cancer Endometriosis IVF

A brief history

Dennis to Denise – gender dysphoria from an early age

Age 5 - 6 – girl clothes at home only Age 7 – clinically diagnosed by Portman Clinic

with gender dysphoria Age 9 – grew hair and began to dress as a girl

at all times Age 11 – pronoun change to female and

statutory name change

Puberty….

Search for help inside and outside of the UK – British, Dutch and USA clinicians

Meeting with endocrinologists Dr Viner and Dr Brain from Portman Clinic

Treatment offered then withdrawn by Leeds endocrinologist

Dr Norman Spack

excerpt from an email received from Norman, following consultation with him regarding this presentation:

At the end of the list of Denise’s non-treaters, my name stands alone. The audience might like to know that:

my late father was an internationally famous educator, as principal of elite Jewish schools 1938-74. His watchword was “never give up on a kid. You never know when they will reach the point of being inspired.”

I first trained in Adolescent Medicine. However, I learned that it was important for the doctor for adolescents to be as flexible as the patients. My first exposure to trans patients were street kids and drag queens while working on a van treating streetkids and runaways. Not a healthy intro.

Norman Spack history continued…

I next encountered post-college mid-20s in my Adolescent Medicine private practice and the patients I saw in my trans practice started to ease towards late teens and early 30s.

I inherited a practice of adults mostly 30-55, which convinced me that something had to be done to permit these people to have a better chance of fitting into society

I came to Children’s Hospital fulltime in 1998 and gradually began seeing under age 18 patients, with age-trend downward

GeMS (Gender Management Service) clinic for trans and intersex patients inaugurated Feb 2007.

Clinic for Gender Variant Children Accepts international patients Individual treatment for each and every patient, to

account for fundamental differences in physical, mental, and developmental readiness, for example:

Height Psychological status Pubertal status

Criteria for treatment

To minimise costs and unnecessary visits (unfortunately in America healthcare is not free - in fact treatment for gender dysphoria is not covered by insurance for US Citizens either) adolescents should fulfil the following criteria:

A confirmed diagnosis: A diagnosis of longstanding gender dysphoria, given by

an experienced gender expert with specific experience with children/adolescents.

Increase in symptoms of gender dysphoria: During the early changes of puberty, adolescents with

gender dysphoria will experience fear of the changes happening to them, often combined with disgust and repugnance

Criteria for treatment cont…

On the cusp of needing treatment Genetic girls: breast budding should be present, at or

just around the nipple area, plus initial growth spurt. It is particularly important that girls be seen earlier in age as puberty can progress very quickly, and will then require costly chest reconstruction surgery

Genetic boys: testes should be between 4 and 8cc in volume - prepubertal development is around 2cc volume. This is BEFORE the major changes of male puberty, such as facial hair, voice breaking, Adams apple and penis enlargement

Tests and evidence needed:

A letter from the gender expert stating that pubertal suppression is in the adolescents best interests. If the therapist is not comfortable with that, a letter expressing concern for the patients wellbeing if puberty continues would suffice, or information regarding the negative effect puberty has had

Growth chart from early childhood to date Bone age scan – simple x-ray of left hand/wrist Bone density scan Medical history, inc any psychotropic medication that

has/is prescribed, plus information on any instances of self harm or suicide attempts, or similar threats should genetic puberty go forward

Tests and evidence needed: cont…

Any other supporting documentation – for example information from school counsellors, therapists, etc

Blood test results for all: CBC, morning LH and FSH, liver function,

haemoglobin, cholesterol, karyotypes (chromosome analysis)‏

Genetic males: morning testosterone levelGenetic females: morning estradiol level

Procedure:

Injections administered by GP or practice nurse. If GP not supportive then staff at Children's Hospital will teach you how to administer the injection properly

Ongoing support provided by Dr Spack by email, and if needed by phone

Blood tests every 3 months Bone age scan yearly Bone density yearly Consultation with Dr Spack in Boston every 6 months

Medication:

Medication: Triptorelin (Decapeptyl 3.75mg) found online at http://www.rxtrustpharmacy.com

Prescription required from Dr Spack, order online, takes approx 3 weeks to arrive, store in fridge

Costs

Travel to and from the USA Flights every 6 months – approx £290 to £400 pp Hotel accommodation – approx $450 (£225)‏Medication £135 per depot injection –administered every 28 daysHospital costs Initial consultation on first visit - $1000 (£500)‏ Follow up visits - $500 (£250)‏* If you do not have a letter confirming diagnosis then a

four hour evaluation will be needed on your first visit, which will raise the cost significantly

Additional Information

Hospital policy: To be able to accept international patients, Dr Spack

must follow the hospitals basic guidelines regarding costs of initial consultation and further visits, but he is aware that this is a major financial liability, therefore his final comment to me by email regarding costs was as follows:

“You may indicate that if people can get to me, I will do whatever I can to make their evaluation financially possible. There is too much at stake and inevitably we will find an "angel" to enable us to expand our services and cover all who are in need.”

Contact details

Dr Norman Spack Email:

norman.spack@childrens.harvard.edu Telephone: 00 1 617 355 5070 Fax: 00 1 617 730 0194