Photo: RNZ / Angus Dreaver
Leading transgender health professionals are alarmed the government is directing the Ministry of Health to consult the public over gender affirming healthcare.
The Ministry of Health Manatū Hauora has released the long-delayed puberty blockers evidence brief and a position statement which sets out its expectations for their use.
The government has signalled its intention to consider regulating the prescribing of puberty blockers in gender affirming care and tasked the ministry with consultation.
Regulatory measures could include restricting prescribing of puberty blockers in the context of gender affirming care but not its use in other contexts, the ministry said.
It has opened public submissions asking if further precautions or restrictions are needed, and what impacts this could have on young people.
Public consultation on a medical matter is inappropriate, trans health professionals say.
The looming possibility of restrictions is already having an impact on gender diverse youth, PATHA president Jennifer Shields told RNZ.
"The evidence brief has only been out 24 hours and I've already had a number of families message me quite distressed, concerned for the wellbeing of their young people, concerned about their ability to access healthcare in the future."
Shields said any further restrictions were unnecessary and would only do harm to those who need that care the most
"PATHA is concerned about the appropriateness of opening this consultation on a medical matter to the wider public particularly when the matter of gender affirming care has become highly politicised and subject to disinformation.
"I would really caution the Ministry of Health to take that into consideration when they are assessing the findings of that consultation and really would caution government in particular about the impacts that a public consulation process is likely to have on the health and wellbeing of trans people of all ages but particularly for trans young people."
It was important to take the politics out of a healthcare matter and bring it back to the wellbeing of the young people who are at the centre of the issue, she said.
"At the centre of this there are children and young people who are experiencing mental distress, who are navigating a journey of gender recognition, who really do need access to this care and I would encourage people to think about what that experience is like.
"To even have questions about your identity and whether the body you have is the right one for you and to be experiencing potential permanent changes to your body that you have no control over, knowing that there is an intervention out there that can give you the time to make a decision without those permanent changes looming over you and then to have that option taken away is really traumatic for a lot of people."
Further measures being considered by the ministry included updating clinical guidance and increasing monitoring of prescriptions.
Puberty blockers can be used as part of gender affirming care to delay the onset of puberty by suppressing oestrogen and testosterone.
They are also used for precocious puberty in children, and the ministry says the same medications can be used in adults to treat endometriosis, breast and prostate cancer, and polycystic ovary syndrome.
The evidence brief only looked at the use of blockers specifically as they related to gender affirming care.
Findings of the evidence brief
The ministry says overall, the evidence brief found "significant limitations in the quality of evidence for either the benefits or risks (or lack thereof) of the use of puberty blockers".
Shields said a lack of high quality evidence was not unique to puberty blockers.
"When we're thinking about high quality evidence, quite often we're talking about randomised control trials and those are really difficult and challenging to undergo for gender affirming care particularly. Partly because of the ethical considerations around withholding neccessary care but also because if you're giving one group a placebo and another group puberty blockers or hormone therapy it becomes pretty obvious pretty quickly who's on what."
As a result the studies struggle with participant retention.
"I think it's really important that we're not holding this kind of healthcare to a standard that healthcare for the general public doesn't meet."
Following the release of the evidence brief, the ministry has directed clinicians to exercise caution in prescribing puberty blockers.
"Clinicans who initiate puberty blockers should be experienced in providing gender affirming care and be part of an interprofessional team offering a full range of supports to young people presenting with gender-related issues," it said.
This is already in line with New Zealand best practice and it was reassuring to see the ministry recognise this, Shields said.
She said best practice often looked like paedetrians working alongside mental health professionals, peer support and social workers to help a young person and their family make the choices that are best and right for them, with the support they need.
If the government was concerned about the safety of gender diverse young people it was important to make sure clinicians nationally were adequately resourced and have access to this multidisciplinary support, she said.
PATHA would like to see standardised access to care and investment from the ministry for this.
No New Zealand-based studies were identified as meeting the threshold for inclusion in the evidence brief and Shields said there may be limitations to comparing a New Zealand context to that of other countries.
"Particularly around the model and approach we take here in Aotearoa, some of the biggest comparisons that are often drawn are with healthcare provision in England, in the UK, and their approach to gender care, for a very long time, has been a centralised clinic model, which has meant long wait times and lower rates of access."
Care in New Zealand is provided locally with every region having a distinct pathway, something which has a tangible impact of those accessing care, Shields said.
The ministry says it will commission New Zealand research to determine the long-term clinical and mental health and wellbeing impacts of puberty blockers, continue to monitor emerging evidence and what is happening internationally, and enhance governance and monitoring of gender affirming care to ensure its delivery is safe and evidence-based.
Young people should have access to comprehensive quality care, it said.
PATHA said the ministry's position statement "makes it clear that puberty blockers can continue to be used as part of a comprehensive care plan for trans and gender diverse young people where needed".
The statement was not a new set of rules, but guidance that acknowledged the approach experts already use, Shields said.
"PATHA will continue to work to ensure access to this important care is maintained."