Clinic for Gender Variant ChildrenClinic for Gender Variant ChildrenOpened Boston 2007Opened Boston 2007

Treatment offered to adolescents for at least Treatment offered to adolescents for at least 3 years prior to this3 years prior to this

Treatment optionsTreatment options

UK: No physical intervention until child is 16UK: No physical intervention until child is 16

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

Belgium: New clinic opened in 2005 following Dutch Belgium: New clinic opened in 2005 following Dutch protocolprotocol

Germany: New clinic opened in 2006 following Dutch Germany: New clinic opened in 2006 following Dutch protocolprotocol

Treatment optionsTreatment options

Norway: Follow Dutch protocolNorway: Follow Dutch protocol

Rest of Europe: Often no intervention before 18 years Rest of Europe: Often no intervention before 18 years of age, but this is changing rapidlyof age, but this is changing rapidly

Canada: Offers early suspension of puberty Canada: Offers early suspension of puberty

Australia: Offers early suspension of puberty Australia: Offers early suspension of puberty

USA: Intervention dependent upon individual clinician. USA: Intervention dependent upon individual clinician. Currently between 8 - 10 MD’s openly treat children Currently between 8 - 10 MD’s openly treat children under 18, inc Dr Spack at Children's Hospital Boston, under 18, inc Dr Spack at Children's Hospital Boston, who has been treating adolescents for over 3 yearswho has been treating adolescents for over 3 years

Clinical management of gender identity Clinical management of gender identity disorder in adolescents – published June disorder in adolescents – published June 2006, Amsterdam Gender Clinic2006, Amsterdam Gender Clinic

http://www.eje-online.org/cgi/content/full/155/suppl_1/S131http://www.eje-online.org/cgi/content/full/155/suppl_1/S131

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

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

Amsterdam Gender Clinic cont…Amsterdam Gender Clinic cont…

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

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

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

Facts about GnRH analogue:Facts about GnRH analogue:

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

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

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

CancerCancer EndometriosisEndometriosis IVFIVF

A brief historyA brief history

Dennis to Denise – gender dysphoria from an Dennis to Denise – gender dysphoria from an early ageearly age

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

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

at all timesat all times Age 11 – pronoun change to female and Age 11 – pronoun change to female and

statutory name change statutory name change

Puberty….Puberty….

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

Meeting with endocrinologists Dr Viner Meeting with endocrinologists Dr Viner and Dr Brain from Portman Clinicand Dr Brain from Portman Clinic

Treatment offered then withdrawn by Treatment offered then withdrawn by Leeds endocrinologistLeeds endocrinologist

Dr Norman SpackDr Norman Spack

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

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

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

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

Norman Spack history continued…Norman Spack history continued…

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

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

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

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

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

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

HeightHeight Psychological statusPsychological status Pubertal statusPubertal status

Criteria for treatmentCriteria for treatment

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

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

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

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

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

Criteria for treatment cont…Criteria for treatment cont…

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

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

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

Tests and evidence needed:Tests and evidence needed:

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

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

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

Tests and evidence needed: Tests and evidence needed: cont…cont… Any other supporting documentation – for example Any other supporting documentation – for example

information from school counsellors, therapists, etcinformation from school counsellors, therapists, etc

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

haemoglobin, cholesterol, karyotypes (chromosome haemoglobin, cholesterol, karyotypes (chromosome analysis)analysis)

Genetic males:Genetic males: morning testosterone levelmorning testosterone level

Genetic females:Genetic females: morning estradiol levelmorning estradiol level

Procedure:Procedure:

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

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

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

Medication:Medication:

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

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

CostsCosts

Travel to and from the USATravel to and from the USA Flights every 6 months – approx £290 to £400 ppFlights every 6 months – approx £290 to £400 pp Hotel accommodation – approx $450 (£225)Hotel accommodation – approx $450 (£225)

Medication Medication £135 per depot injection –administered every 28 days£135 per depot injection –administered every 28 days

Hospital costsHospital costs Initial consultation on first visit - $1000 (£500)Initial consultation on first visit - $1000 (£500) Follow up visits - $500 (£250)Follow up visits - $500 (£250)

* If you do not have a letter confirming diagnosis then a * If you do not have a letter confirming diagnosis then a four hour evaluation will be needed on your first visit, four hour evaluation will be needed on your first visit, which will raise the cost significantlywhich will raise the cost significantly

Additional InformationAdditional Information

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

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

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

Contact detailsContact details

Dr Norman SpackDr Norman Spack Email: Email:

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