By Ruth Hill of RNZ
The Ministry of Health is refusing to say if it is considering following the United Kingdom’s move to ban the routine use of puberty blockers for transgender children and teenagers.
The drugs - which delay the physical changes that come with puberty - are now limited to clinical trials in the United Kingdom. Similar restrictions are already in place in Sweden, Finland and France.
In a move heralded by the British Government as “a landmark decision” and “in the best interests of children”, the National Health Service or NHS has concluded there is not enough evidence that puberty blockers are safe to take or clinically effective for transgender children and young people.
The decision foreshadowed the release on Wednesday of the final Cass Report, an independent four-year review of specialist services for gender dysphoric youth in the UK, which found young people had been given life-changing treatment despite “remarkably weak” evidence.
Public health expert and Otago University emeritus professor Charlotte Paul said Pharmac data showed New Zealand children aged 12 to 17 were being prescribed puberty blockers at 10 times the rate as children in the UK.
Referral guidelines allowed for children as young as 8 or 9 to get blockers, she said.
“Almost everyone taking puberty blockers goes onto cross-sex hormones, so people are basically being asked as children to give consent to something that is irreversible.”
Sixteen-year-olds are considered able to make their own decisions about medical care but the current guidelines say lack of family support does not preclude younger trans children from consenting to interventions “if they are deemed competent to make an informed choice”.
Paul - who was an expert adviser to the Cartwright Inquiry into unethical practices at National Women’s Hospital in the 1980s - said Britain’s more cautious approach should give New Zealand clinicians “pause for thought”.
“Any public criticism of treatment practices can seem hostile to trans people and of course we must be sensitive.
“But a wholly understandable sympathy among doctors for children who identify as trans has led them to ignore what they have learned and seems to me to abandon normal standards of informed consent for children.”
In Britain, NHS gender identity services for under-18s are being overhauled as a result of an ongoing independent review that found serious problems, especially regarding informed consent.
An explosion in referrals has meant long wait times, cursory assessments and inadequate treatment.
Taskforce head Dr Hilary Cass - former president of the Royal College of Paediatrics and Child Health - recommended a pause on blockers in light of the short and long-term side effects, including menopausal symptoms, weaker bone density and the potential impact on fertility, sexual function and brain development.
Puberty blockers are given to transgender children and teenagers to delay the physical changes that come with puberty. Photo / 123RF
It was not known whether blockers really provided time for young people to consider their options - or whether they effectively “locked them in” to a medical pathway, she said.
The report found clinicians were “unable to determine with any certainty” which children and young people would go on to have an enduring trans identity, therefore a medical pathway was not the best way to manage gender-related distress for most.
“For those young people for whom a medical pathway is clinically indicated, it is not enough to provide this without also addressing wider mental health and/or psychosocially challenging problems.”
In her foreword to the final report on Wednesday, Cass referred to the “exceptional toxicity” of the debate.
“This is an area of remarkably weak evidence, and yet results of studies are exaggerated or misrepresented by people on all sides of the debate to support their viewpoint.
“There are few other areas of healthcare where professionals are so afraid to openly discuss their views, where people are vilified on social media, and where name-calling echoes the worst bullying behaviour. This must stop.
“Polarisation and stifling of debate do nothing to help the young people caught in the middle of a stormy social discourse, and in the long run will also hamper the research that is essential to finding the best way of supporting them to thrive.”
Addressing young people directly, Cass acknowledged that some would be disappointed she was not recommending they had access to hormones “as quickly as possible”.
“Firstly, you must have the same standards of care as everyone else in the NHS, and that means basing treatments on good evidence.
“I have been disappointed by the lack of evidence on the long-term impact of taking hormones from an early age; research has let us all down, most importantly you.”
One mother told RNZ blockers made life worse for her child.
“When puberty blockers were given it sent our child into early menopause with all the symptoms associated with that: anxiety, hot flushes and depression. And there was no discernible improvement in mental health, rather a worsening of mental health.”
Last year, New Zealand’s Ministry of Health removed a claim that puberty blockers were “safe and reversible” from its website.
However, leading youth health specialist Dame Sue Bagshaw said they were both.
“There’s not enough evidence to use most of the medicines we use, to be quite honest. That’s because for a lot of stuff in health you can’t do a random controlled trial because it’s too well accepted the standard treatment is the standard treatment. It wouldn’t be ethical [to not use the treatment].”
Most patients on blockers - up to 98 per cent - did progress to taking hormones, she agreed.
“Because most kids know what they want, most kids know who they are. And that’s confirmed with time, so they do carry on with the hormones.
“It sets them on a pathway that they have already chosen by saying they have gender dysphoria.”
Each patient must be treated as an individual, she said.
“It’s almost a kind of moral panic - ‘Oh dear, this gender issue, it’s getting out hand, we must do something!’ But it’s still only within 2 per cent [of the population].”
Health New Zealand Te Whatu Ora said its own review of the evidence on puberty blockers, which was initially expected to be completed by the end of last year, would be published shortly.
No one was available for interview, but in a written statement the clinical director of primary and community care, Sarah Clarke, said the agency was “aware” of the NHS requirement for puberty blockers to be prescribed through its clinical trial process.
The organisation had contracted the Professional Association for Transgender Health Aotearoa to update the guidelines for gender-affirming care, which would cover the use of puberty blockers, Clarke said.
“This is due to be completed by August 2024, and is a resource healthcare providers can refer to answer their questions and to learn more about gender-affirming care.”
“The guidelines will be informed by the results of an evidence review into the safety and reversibly of puberty blockers, being led by the Ministry of Health.”
PATHA has not responded to inquiries. Individual members approached by RNZ declined requests for interviews.
Management at Kidz First at Counties Manukau, which provides gender exploration and transition-related healthcare for the Auckland region, also declined to front, saying there were “too many live issues” in play locally and internationally.
Experts react
Meanwhile, Science Media Centre has sought feedback on the discussion from experts.
Paediatric endocrinologist at Starship Children’s Health Dr Ben Albert said the research was a reminder of a lack of strong evidence that treatments provided for young people with gender dysphoria were helpful. “There is a need for high-quality research to understand this better. In the meantime, support should be provided in a multidisciplinary team, and decision-making made with young people must acknowledge the uncertainty that treatments are truly beneficial.”
GP and University of Otago senior lecturer Dr Rona Carroll, a member of the PATHA executive committee, said funding for further research specific to Aotearoa would be welcomed.
“The report published today again shows how the UK is an outlier in this field, and that our practice in Aotearoa aligns with other countries such as Australia and Canada.
“Whilst more longitudinal research is needed, the evidence that does exist points to improved wellbeing when gender-affirming medications are used in line with current guidance, and distress when gender affirming healthcare is restricted.”
Clinical psychologist and neuropsychologist Dr Paul Skirrow, strategic adviser to the New Zealand College of Clinical Psychologists, urged caution in interpreting the reviews’ findings.
“Many people will assume that this research suggests that puberty blockers and hormone treatments should never be offered, which would be mistaken.”
“What research we do have, albeit of limited quality at present, appears to suggest there may be benefits overall - however, we do not currently know who specifically is likely to benefit.”
In the UK, University of Oxford emeritus professor of endocrinology Ashley Grossman said children with gender dysphoria needed very careful counselling, assistance and help.
“It may be that a small number of these children should in the long-term transition to a different sex, but routine puberty blocking treatment for this use has not yet been adequately studied.”
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