The Ministry of Health has delayed the release of its evidence brief on the safety, reversibility and mental health and wellbeing outcomes for puberty blockers. While we wait, Julia de Bres speaks to those with firsthand experience.
In August 2024, the NZ Media Council upheld one aspect of a complaint about this article, relating to the statement about research relied upon by the Cass Review.
Best practice gender-affirming healthcare is based on trans people’s self-determination and agency. The Māori health framework Te Pae Mahutonga terms this Te Mana Whakahaere: autonomy. As The Professional Association for Transgender Health Aotearoa (PATHA) explains, this principle encompasses “people’s autonomy over their own bodies, represented by healthcare provision based on individual choice and informed consent”.
Puberty blockers are a form of gender-affirming healthcare. They are used to pause the physical changes of puberty that may cause distress or dysphoria for trans youth. They give young people time to reflect before making decisions about whether to proceed with gender-affirming medical interventions, such as hormones, at a later age. Young people can stop taking puberty blockers at any time and puberty will recommence.
Not every trans young person needs or wants puberty blockers, but access to timely and appropriate gender-affirming healthcare is essential for many. Also crucial is agency over their healthcare. Trans people should be involved in decisions both at the individual level of their own healthcare and at the structural level of decisions about healthcare delivery.
Trans young people who have had puberty blockers have told me how important it was for them to make their own decisions about accessing this treatment.
“Research and discussion around hormone blockers made it very clear that they were a necessary medication for me. […] The dysphoria I experienced during the early stages of my transition left me feeling trapped and uncomfortable. Having the bodily autonomy to go on hormone blockers gave me a sense of agency I was lacking at the time. This was cemented by the extremely positive effects that the medication had on my mental and physical well-being. […] Now five years after I began them, I couldn’t be more grateful for the buffer zone they gave me before starting hormone replacement treatment.” – 18-year-old trans man.
“For me, hormone blockers were the light at the end of the tunnel. My depression and anxiety were spiraling from male puberty because it felt like there was no other option, but hormone blockers were that other option. Hormone blockers pulled me out of the largest depressive episode of my life. Hormone blockers are a medication that I am still on and will continue to be on until I get gender-affirming surgery, so this is not a decision I made once but will continue to make every three months for a long time.” – 18-year-old whakawahine.
In Aotearoa, we have been waiting for some time for the Ministry of Health to release an evidence brief about the safety, reversibility, and mental health and wellbeing outcomes of puberty blockers. This brief is now expected next week, and will be accompanied by a position statement from the government.
The ministry explains the delay by a need to wait for final feedback from key stakeholders on the position statement. These key stakeholders do not include the Professional Association for Trans Health Aotearoa, the nationwide transgender organisation Gender Minorities Aotearoa, any rainbow youth organisations, or NZ Parents of Transgender and Gender Diverse Children, a group supporting 1,300 people raising trans kids in Aotearoa.
The ministry is reportedly taking into account the recent release of the Cass Report reviewing gender-affirming care in the UK, to see if it provides any new findings to inform the evidence brief. This report emerges from a very different health context than Aotearoa and has been strongly criticised by trans community advocates and clinicians providing this care. Community concerns are based on the report’s approach to evidence, for example dismissing almost 100 studies because they were not randomised controlled trials, even though such trials would be unethical in this field.
Another fundamental concern is the lack of inclusion of any trans people or clinicians with expertise in gender-affirming care in the final decision-making related to the review. As PATHA observed, this is akin to undertaking a review of women’s health without the involvement of any women, or a review of Māori health without the involvement of any Māori.
Meanwhile, the wait for a government response is harming the wellbeing of trans kids and their families, who often struggle even now to access gender-affirming care. Parents in a national support group told me they are scared.
“As a parent I have been trying to shield my son from this debate. I feel very anxious that he will hear it and it could derail his wellbeing. It feels like people with no lived experience are debating our lives and is a very lonely, isolating feeling. And frightening.”
“The unknown and constant risk of things being changed for the worse weighs heavily on me every day. I am constantly checking for news releases waiting to hear what the latest advice to the government is. I am really fearful for the future.”
“Uncertainty on what options will remain available or not and the resulting public scrutiny either way is weighing very heavily on these kids and yes on us as parents too.”
“The threat of affirming care being taken away from them is terrifying.”
If the Ministry of Health asked, parents would have a lot to say about the importance of access to puberty blockers for trans kids and their families.
This parent support group includes people whose kids have taken puberty blockers, who have chosen not to, or who have wanted to but have not been able to access them. When I asked those parents whose children had taken blockers about their experiences, mental health effects were at the forefront of their minds.
No one in the group reported a negative experience with blockers, echoing the Cass review finding that there is less evidence of harm from blockers than benefit. But many reported negative experiences before their children accessed them. Parents told me that puberty blockers gave their children time and space to make decisions, stopped unwanted physical changes, improved their wellbeing, reduced distress and in some cases saved their lives:
“Puberty blockers have meant that we can slow down, and not rush into major changes. It’s given my child time to get psychological assistance and work through his dysphoria and reduce his distress. It’s provided him with mental stability, and there’s nothing more important than that.”
“My child was desperate to start blockers before she started to look masculine. She was severely depressed and suicidal. Starting blockers allowed her growth to slow, and she avoided all the things that she was petrified of.”
“The difference to my son’s mood and functionality was night and day. He was able to finish school and in his final year become one of the country’s top scholars.”
“After the first injection of the blocker, my daughter’s anxiety and depression significantly reduced. There have been no further incidents of self harm.”
When considering medication for a young person, the key question that likely goes through any parent’s mind is “is it safe to give this to my child?”
Looking at what parents and young people told me, another way to ask this question is “is it safe not to?” Allowing puberty to progress in trans young people who experience distress about their gender is not a neutral act and may have lifelong harmful effects.
Discussions about transgender health often centre cisgender decision-makers and clinicians with no personal experience of what it means to be a young trans person facing puberty. Recognising that trans young people and their families are experts in their own lives is essential to providing equitable access to healthcare. It is the combination of clinical and lived expertise that makes healthcare decisions responsive to community needs. As one parent puts it:
“I’m worried decisions will be made based on reports such as the Cass report rather than looking at actual lived experiences and evidence by listening to those working directly with those affected by gender dysphoria i.e. medical practitioners, whānau, trans children, those who have finished the puberty blockers journey, those on it currently and those yet to begin.”
Based on claimed “weak evidence” of effectiveness, the Cass Report recommends “extreme caution” in prescribing puberty blockers to trans young people. This advice runs counter to the two main international guidelines in the field, and it also runs counter to the experiences of trans young people and their families in Aotearoa.
Parents, clinicians and researchers would all welcome more research into the effects of puberty blockers, to continue to identify and deliver best practice care. But access to puberty blockers must be retained alongside this. Right now, extreme caution means reassuring families across Aotearoa that their children will be able to access gender-affirming healthcare, including puberty blockers, whenever they need them.
For more information, you can read three information sheets here, covering current scientific evidence, family experiences, and clinical experiences of using puberty blockers in Aotearoa. These were compiled in August 2023, with input from researchers, clinicians and community experts in trans health and wellbeing.