Updated gender affirming healthcare guidelines are being withheld by the Government in a move health workers and patients say is playing politics with vital healthcare for trans and non-binary people.
The 182-page document is an update of a 2018 version and covers information such as mental and sexual health, fertility and gender affirming health care for these patients.
'My experience of getting hormones wasn't great' - Watch Natasha's story on on TVNZ+
The guidelines were fully approved by Health New Zealand and were meant to be published in March this year but, 24 hours before they were due to go public, the release was halted.
Health New Zealand this month told Re: News it will publish the guidelines "once decisions are made by the Government” about puberty blockers. But there’s still no timeline for when this will be.
General practitioner (GP) and gender affirming care specialist Dr Rona Carroll says the Government has been exploring whether to implement restrictions on puberty blocker prescribing, and the release of the guidelines has “been caught up with that”. But she says information about puberty blockers makes up a “tiny fraction” of what’s covered in the guidelines.
“Only around five or six pages of the entire document [are about puberty blockers] and it actually supports safer prescribing than what's currently out there,” she says.
More than 300 medical bodies, community organisations, and individual healthcare professionals have signed an open letter calling on the Government to allow Health New Zealand to release the guidelines.
Carroll says they have asked if the guidelines could be released without the pages on puberty blockers, and the document could be updated when that information has been decided.
“But we've been told that can't happen and have not been given any reason for why not,” she says.
“Unfortunately, there is a lot of misinformation out there around gender affirming health care, and we can see an influence in New Zealand of what's happening overseas. To me, it seems like political interference in a routine clinical guideline update, which is the core business of Health New Zealand.”
‘Clear need’ for updated information
As a GP working in this space, Carroll says she is contacted “most days” by health professionals asking how to provide appropriate care for their trans and non-binary patients.
“They are struggling to find things that are up to date,” she says. “Healthcare providers often aren't taught very much about this in their training. So, commonly, patients feel like they have to educate their healthcare providers.”
Research by Counting Ourselves, a community-led survey about the health and well-being of trans and non-binary patients, shows nearly half (47%) of these patients have had to provide information to their healthcare provider to get appropriate care.
In 2022, less than half (45%) reported that their main health worker knew most things about gender affirming care – down from 58% in 2018. For 16%, their doctor knew very little or nothing.
“Unfortunately, it’s very common for trans people to have negative healthcare experiences,” Carroll says. “We know from healthcare providers that they don't feel confident and don't feel like they've got the knowledge.”
Rollercoaster treatment 'disaster'
When Natasha Munro Hurn began her journey with gender affirming care, she knew it would be a process.
But she didn’t expect it to be a rollercoaster “disaster” that would initially ruin her self-esteem and perception of her body.
At first, Natasha had to wait two years to see a psychologist who approved her for hormone replacement therapy (HRT). But when she “finally” started on HRT, she was given a dose of a testosterone blocker called Spironolactone that was too low to have a noticeable effect on her body.
The gender affirming care guidelines from 2018 say to start on 50-100mg of Spironolactone, and this can be increased to up to 200mg.
But Natasha spent more than 12 months on 25mg and only found this out when she moved cities and saw a new doctor.
“It was a massive blow to my self-esteem,” she says. “It just kind of ruined the perception of my body because I still had the same body I had before, but it was a year later.”
Natasha says it took a long time to realise it was the incorrect dose because she trusted that her doctor knew what to do.
“I didn't really question the doctor,” she says. “This isn’t medication I’ve ever used before so I saw him as the expert, even though there weren't really any changes happening to my body.”
Guidelines seven years old
Associate Health Minister Matt Doocey declined to be interviewed or comment. But Health New Zealand acknowledged in an email statement to Re: News that the current guidelines were now seven years old and that “evidence in this area continues to evolve”.
“The updated guidelines have been designed to support clinicians to provide holistic care to transgender and gender diverse people seeking gender affirming and other healthcare,” it said.
“Therefore, this includes guidance around prescribing and the use of puberty blockers. Publication of the updated guidelines will occur once decisions are made by the Government following the Ministry’s consultation process.”
But in the meantime, as health workers wait for the release of the guidelines, they should “take advice from colleagues who are more experienced”.
‘Life or death’ situations
Since being on the correct dose of HRT, Natasha says her life has changed drastically.
“It’s quite exciting, every day I see changes. It feels good finally. Like ‘oh, I'm finally being the person I've always desired to be’.”
Natasha’s message to the Government is simple: “Healthcare should be for everyone, this is literally life or death situations. Just be kind and let this information get out,” she says.
More on the call to release the guidelines on gender affirming care – Watch on TVNZ+
Where to get help:
• 1737: The nationwide, 24/7 mental health support line. Call or text 1737 to speak to a trained counsellor.
• Suicide Crisis Line: Free call 0508 TAUTOKO or 0508 828 865. Nationwide 24/7 support line operated by experienced counsellors with advanced suicide prevention training.
• Youthline: Free call 0800 376 633, free text 234. Nationwide service focused on supporting young people.
• OUTLine NZ: Freephone 0800 OUTLINE (0800 688 5463). National service that helps LGBTIQ+ New Zealanders access support, information and a sense of community.
• Rainbow YOUTH: a charity who provides peer support for rainbow rangatahi.
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