Collect and publish data on the children and adolescents undergoing gender transition. Idea from Jan_Rivers

While there is extensive data made available for those receiving genital surgery no data is collected for people, including children and young people starting their gender identity journey.

I propose that there is national recording of children and youth under 20 years old who are:

  • transitioned socially on advice from clinicians to live as the opposite sex,
  • provided with puberty blockers
  • provided with cross sex hormones
  • proceed from puberty blockers to cross sex hormones
  • cessation of treatment with gender medicine

While the evidence about the benefits of cross sex hormones and surgery is mixed and of poor quality a particular concern is the use of so called puberty blockers.  A seminar to Pharmac in 2017 reported that puberty blockers (argued to provide time for children to consider whether they want to continue with a transition) were used "very freely" up to age 20 so I propose that 20 be the cut-off point for this recording except for the recording of treatment cessation. The treatment of gender identity issues is highly devolved in NZ and endocrinologist prescribing is available through District Health Boards services as well as other centres such as specialist child youth health centres, student health services.  Some prescribing may also occur in privately owned GP practices and private clinics. Internationally the research evidence shows that almost 100% children provided with puberty blockers continue to cross sex hormones making it doubtful that they are really - as described by the NZ Ministry of Health - a pause button. Childhood distress about gender is being equated with being transgender rather than considering whether there are other factors such as abuse, autism, same-sex attraction which may the root cause.

If international trends apply to New Zealand the majority of this increase will be in girls and young women. The causes are unknown. There is evidence of:

  • greater acceptability of being transgender
  • social contagion and the appearance of gender issues alongside other conditions suffered by adolescent girls such as anorexia and self-harm.
  • a history of specific circumstances such as greater levels of sexual abuse and adverse childhood events (trauma) compared with peers
  • autism syndrome conditions
  • a prior declaration of same sex attraction and / or experience of homophobia

Why the contribution is important

Overseas data has shown that referral rates have increased by more than 40 times over a decade. A Wellington District Health Board (CCDHB) study has reported the data the rate of referrals for gender medicine has increased substantially without an explanation in the last decade and this data coupled together with data from an OIA shows that for the CCDHB numbers have increased some 20 fold over 10 years and had risen to 193 new referrals (of all ages)  for medication in 2019. The actual figures for all of New Zealand are unknown but if these figures hold true across the country it would mean that more than a 1000 children and young people begin medication each year. (The CCDHB service caters for less than 10% of NZ’s population and in overseas experience the majority of new cases are in children and adolescents). There is also internationally research evidence of social contagion in the decision to transition with adolescents at or after puberty in the same friendship groups making the same decision in close succession.

In the UK, Sweden, Finland and Ireland legal cases and policy advice has changed considerably in the last two years for ethical and medical reasons making it harder to get puberty blocking drugs and with a focus changing towards psychosocial support. In the UK research by the National Institute of Clincial Excellence (NICE) has shown that the evidence for puberty blockers is very low, and the NHS has changed its advice.  It no longer says that puberty blockers are safe and fully reversible. However treatment has remained the same in NZ. Children and their caregivers are told by the NZ Ministry of Health that puberty blockers provide a pause button to delay a potentially unwanted puberty and they are both safe and fully reversible. The NZ treatment regime is also very liberal with early social transition (changes to appearance, name, pronouns) which is believed to embed the belief in being the other gender.

Whereas in the whole of the UK 191 children were prescribed puberty blockers in 2019 in NZ there are recent media reports that a single Christchurch clinic has 65 children using this medicine. Again there are no figures - but a back of the envelope calculation would appear to show that prescribing rates in NZ maybe prescribing at a rate between 10* and 20* as high per head of population than the UK. 

As in the UK and other jurisdictions mentioned above a recent NZ research project has identified that there are multiple potential ethical issues (for example related to informed consent, whether prescribing is experimental and whether treatment or withholding treatment is most beneficial for children with gender issues) with the current regime. The NZ research says that there are also health unknowns (for example possible impacts on brain maturation and evidence that bone density is impacted as well as other health issues) in the use of puberty blockers.  The NZ research was undertaken by a summer scholar at Otago Medical School and as a result there is a recommends for an urgent need for extra research.  I propose that collecting basic statistics should be the first step as described above. Retrospective capture should be attempted too.

Other related issues are that in NZ there is no data to show whether, as appears to be the case in other research, almost 100% of children given puberty blockers proceed to cross sex hormones. Regret and subsequent decisions to cease treatment are also an issue and that should be tracked too, There is a small community of young people who have detransitioned in New Zealand, and there are concerns that the 'affirmative approach' could be driving overdiagnosis. Detransition often happens only after irreversible physical changes have been caused by the drugs (as well as by surgery).

by AdminOGPVH on July 22, 2021 at 08:26PM

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Comments

  • Posted by flicker2553 July 22, 2021 at 22:10

    We have an epidemic of unhappy young people. We need detailed, comprehensive data in order to properly plan strategies for addressing and minimising youth distress.
  • Posted by Mel July 23, 2021 at 07:28

    This is an important suggestion. We know that the evidence in regards to the benefits of cross-sex hormones and surgery is mixed and of poor quality and that the use of puberty blockers is being questioned in the UK and Australia. It is essential that policy is driven by evidence and research as opposed to ideology. Thank you for this excellent suggestion.
  • Posted by Doonie July 23, 2021 at 07:43

    Fully agree with this thoughtful and well researched idea. The concern I have is that some young people may end up self-medicating using online sources if they cannot have access to what they want through our present medical system. Who is to know if individuals in this country choose/are choosing to do this? How much is government policy leaning towards 'allowing' medication/surgery as a first response to the notion of gender as a social construct because it is better to have some oversight of hormone taking to change gender than none at all? I don't see enough responses from NZ clinical professionals to what is happening in this area overall, let alone with clinical implications such as these Where are the voices of psychiatrists, psychologists, counsellors in all of this?
  • Posted by Merlinnz July 23, 2021 at 07:53

    The Bell v Tavistock case in the UK High Court considered 3000 pages of evidence submitted by both parties. Tavistock has been running a gender clinic for many years where administration of PB is common. The Judges concluded there is insufficient evidence to consider PBS for children safe or reversible. The Judges stated that the treated amounts to experimentation on children. The NZ Ministry of Health website continues to describe the treatment as ‘safe’ and ‘reversible’ 7 months after the UK decision.
  • Posted by Janthorburn July 23, 2021 at 10:36

    As an ex teacher of loved ex pupils and aunty of many nieces and great nieces and nephews I urge that this data is collected. Every extended family I know seems to have a child on this medical journey and it is very concerning that so many children are being encouraged to medicalise. Over 5000% increase in UK for young women.
  • Posted by suffragette July 24, 2021 at 09:36

    I support this and would like to see this progress.
  • Posted by Litterick July 26, 2021 at 22:03

    It is scandalous that this information is not being collected.
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