Submission guide for puberty blocker restrictions

Introduction

At the end of November, Manatū Hauora the Ministry of Health released their long-awaited evidence brief and position statement into the use of puberty blockers for trans children. Along with this, the Government has asked them to open up public consultation on whether additional restrictions need to be put in place for trans children accessing puberty blockers.

Wait, that seems strange?

Absolutely it is – it’s highly unusual and totally inappropriate to open up public consultation for a medical matter that – by the Ministry’s own press release – affects a little over 100 children per year.

Why are they just considering restrictions for trans children? Why not cisgender kids using them for precocious puberty?

Good question! The Ministry doesn’t have an answer to that other than trying to claim that they’re actually quite different. But let’s be clear: if there are serious risks, there’s no reason why they wouldn’t apply to other children using them, too.

This move by the Government and the Ministry of Health is an act of discrimination, attempting to introduce restrictions on one population’s right to access healthcare.

That’s terrible! What do we do about it?

Make your voice heard! Submit, as an individual and/or an organisation. You can engage in the submission process, but it’s important to look beyond that, too.

The Ministry will use the consultation findings to present advice to Minister of Health Shane Reti and Associate Minister of Health (with the Mental Health and Rainbow Health portfolios) Matt Doocey, who will then work with them to present a paper to Cabinet. Unfortunately, as we’ve all seen this year with tobacco, this Cabinet doesn’t seem to value the advice the Ministry of Health gives them.
So – make a submission during the consultation process, but you should also talk to your local MP and write to Ministers Reti and Doocey. It’s important that they understand the impacts that this consultation process and any restrictions on access to healthcare would have.

How do I submit?

There’s an online form at the Ministry’s consultation website but it’s been written in a way that is confusing and biased towards further restrictions. You can email your submission directly to pbconsultation@health.govt.nz instead.

You can also email Minister Reti: s.reti@ministers.govt.nz and Minister Doocey: m.doocey@ministers.govt.nz

There is an option for anonymising your response; If doing an email submission, your email address cannot be retrieved by an OIA request. If doing a form submission, you can choose to provide your email to confirm your submission but this won’t be attached to your submission, and the form doesn’t ask for your name/personal details.

We recommend using the option to anonymise your response for safety reasons in the form, or keeping your email unidentifiable, unless you have strong reasons to do otherwise. If you’re whānau to a trans young person, please ensure that your loved one is unidentifiable from what you input.

What should I say?

Like with other submissions, your own voice will be strongest. This guide breaks down making a submission, as well as ideas on ways you might like to respond to the different questions, context to keep in mind, as well as providing some ideas on topics you may want to discuss further in your submission. We have suggestions if you’re submitting via the form or if you’re writing an email submission. Below the guide to answering each question we’ve included further in-depth information about some of the concerns and things to keep in mind with this consultation, and further resources you can access.

You could include these points in letters to Ministers Reti and Doocey, too.

What else can we do?

Now, more than ever, support the trans children in your lives, and support their parents and whānau. We know that this consultation process alone is affecting the mental health and wellbeing of trans children around Aotearoa. If the government moves to implement restrictions, those harms will amplify.

Form questions

If making a submission via email, we recommend including responses to the questions from the form, as well as other considerations. Some of the questions and answers in the form are biased towards restriction, which is why we recommend an email submission. If making a submission through the form, we strongly encourage sharing more information where there’s space to expand on your answers.

Question 1: What is your main interest in the consultation topic?

The question doesn’t have a built in option for if you’re a trans adult who accessed or couldn’t access puberty blockers yourself, but we know this is an important demographic whose voices need to be heard.

If emailing: Make clear your positionality to the topic.

Question 2: Do you live in New Zealand?

If emailing: State whether or not you live in New Zealand.

Question 3: Publishing submission

If you do choose to have it published, they will remove any identifying information. It’s best to not rely on what they view as identifying, and keep it anonymous regardless.

If emailing: State whether you want your submission published or not.

Question 4: Official information Act responses

Text from the form: Your submission will be subject to requests made under the Official Information Act (even if it hasn’t been published). If you want your personal details removed from your submission, please let us know below.

The OIA allows New Zealand citizens, permanent residents, and anyone who is in New Zealand to request any official information held by government agencies – including the Ministry of Health.

This can be done by anyone, which has been used to impact our communities both positively but also negatively; bear in mind that your submission is subject to any OIA requests which could come from anti-trans extremist groups.

If emailing: State whether you want your personal details removed or not, and explicitly state if you want your email address and name removed.

Question 5: In your view, how should puberty blockers be prescribed for gender-affirming care in New Zealand? (please select one)

The current prescribing model is generally through informed consent, between the whānau, medical professional, and the young person. This involves making it clear the benefits and risks. Currently, there is no extra medical training needed outside of their medical training to prescribe puberty blockers, however there are national gender-affirming guidelines endorsed by AusPATH, PATHA, the New Zealand Sexual Health Society and the New Zealand Society of Endocrinology and by the Ministry of Health in their position statement. There should be no restrictions on access to puberty blockers for the trans young people who need them.

If filling out the form: ‘Continued as it is now (up to the prescriber’s clinical judgement, guided by the Position Statement)’
If emailing: Stating to keep prescription models the same.

Some suggestions for additional thoughts:

• Your trust in the informed consent model
• The ‘Restricted by regulations’ options ignores that puberty blockers are already subject to restrictions to ensure they are prescribed appropriately, further restrictions would only target and discriminate against trans young people.
• There is no option provided for less regulations.
• 13% of trans and gender diverse rangatahi in the Identify survey say that they want but cannot access puberty blockers. Youth19 found that over half (55%) of transgender and gender diverse students had been unable to access healthcare in general when they needed it in the past year. Restricting access to puberty blockers further or adding extra steps of safety checks and/or monitoring will only increase these numbers.
• There is already an existing set of guidelines through PATHA which support medical professionals to give high quality care around puberty blockers. Any clinicians prescribing puberty blockers are prescribing by guidelines set out by trans healthcare specialists.

Question 6: Who do you think should be able to start patients on treatment with puberty blockers?

Currently paediatricians, General Practitioners (GPs), and obstetricians/gynecologists are the main prescribers of puberty blockers, however endocrinologists, Internal medicine clinicians, nurse practitioners, sexual health/youth health physicians, urgent care clinicians, and non-vocationally registered doctors have as well in the past.

If filling out the form: No to the first, and yes to all the other sub-questions.

If emailing: Support for those currently able to prescribe to continue to be able to prescribe. Any clinicians in a child’s care team should be able to prescribe and anyone able to prescribe other hormone treatments should be able to prescribe puberty blockers.

Some suggestions for additional thoughts:

• Restricting prescription of puberty blockers to certain clinicians disadvantages trans people in rural and some regional areas where there isn’t that specialised training. Access to gender-affirming care nationally is still a postcode lottery – there are many places in Aotearoa where puberty blockers are all-but impossible to access already. The government should be increasing resourcing to ensure trans people, no matter where they live, can access the healthcare they need.
• There is an overdemand for trans healthcare, and the wait times are high already. There is already a time pressure to prescribe puberty blockers before the young person goes through irreversible unwanted changes from puberty, and restricting clinician’s ability to prescribe adds to this time pressure beyond the current time needed for the informed consent process.
• All clinicians prescribing puberty blockers already have access to the extensive PATHA guidelines.

Question 7: Which young people should be able to receive treatment with puberty blockers for gender dysphoria?

Relegating general use for trans youth to ‘any other groups’ makes this question very leading and biased towards restriction. This will lead to many people filling out the form to be unaware of who else to consider.

If filling out the form: Yes to all options.

If emailing: All young people who are seeking puberty blockers for gender dysphoria should be able to go through the process to receive treatment, whether they are currently receiving treatment or not.

Some suggestions for additional thoughts:

• This question is missing the obvious option for ‘any trans young person who needs treatment’ – be sure to include this in the text box.
• The framing of this question raises questions about why this submission process is aimed towards the use of puberty blockers for trans youth only, not general use of puberty blockers. Denying use of medication to a particular group based on their gender and/or sex is sex based discrimination which is illegal under the Human Rights Act (1993).
• Young people should not have to be part of a clinical trial to access the healthcare they need. Restricting access to a clinical trial is absolutely inappropriate and totally unethical – the Aotearoa National Ethical Standards for Health and Disability Research, the NZ Health Research Council, and the World Medical Association’s Declaration of Helsinki on medical research are all absolutely clear that participants in medical research must give voluntary and informed consent. You cannot voluntarily agree to participate in a trial if that trial is the only way to access care.
• The highest quality of evidence is a randomised controlled trial, where one group is given an intervention while the other is not. In these trials neither the researchers nor the participants know who is in which group. But puberty blockers result in obvious differences, meaning this is not a feasible research option. There are other ethical considerations and methodological limitations with designing randomised trials in this context. There is a need for further research, but restricting access to this care to those enrolled in clinical trials would be coercive and unethical. No other area of paediatric medicine is held to this standard.

Question 8: If prescribing of puberty blockers is restricted by regulation, how might this affect you and/or the people that you represent?

It is difficult to say how the regulations might affect you/your whānau/your communities given that there hasn’t been much clarity around what restrictions may be put in place. Any level of increased restriction is going to mean that ability to access is decreased, and unwanted and irreversible physical changes will occur in trans youth. At worst, the government could ban the prescription and supply of puberty blockers for trans youth altogether.

If you or your whānau would be affected by an increase in restrictions to puberty blockers, this is the space to write about the personal impact that this would have on you or your whānau. If you do choose to write about the personal impact this would have, we strongly advise that you don’t include any identifying information for your/your whānau member’s safety.

If you are some kind of health practitioner or work with trans young people, you may have other insights to share about how this might affect the people you work with, for instance you could speak to the impact on mental wellbeing.

Question 9: Do you have any further views on how any regulation should be designed?

This is the space to write any additional thoughts, concerns, or comments you have about this topic. We have some suggestions below for relevant topics you may wish to include in response to this question.

Relevant topics to consider

Autonomy, Agency, & Human Rights

• Autonomy and agency are central to all best practice models of healthcare, including for children and young people.
• By restricting the options of puberty blockers for trans young people specifically, this is denying them the right to make the choice for themself.
• The current pathway which uses informed consent models embeds the right to autonomy and agency in a young person’s care.
• In a footnote in the Ministry of Health’s own position statement on puberty blockers, there is acknowledgement of the rights of young people. It is important to hold them accountable to what they have stated here, and reaffirm this section. The footnote is as follows: Young people have rights under the UN Convention on the Rights of the Child (CRC) to both identity (Article 8) and to health (physical, mental), including equitable access to health care (Article 24). These rights sit among children’s wider range of holistic rights under the CRC, which also includes the right and general principle that all decisions made about/or in relation to a child must be made in their best interests (Article 3), and the right and general principle to non-discrimination (Article 2) and to life, survival and development (Article 6).
• Under the Charter on The Rights of Tamariki Children & Rangatahi Young People in Healthcare Services in Aotearoa New Zealand, children and young people have the right to ‘consideration of their best interests as the primary concern of all involved in his or her care’, ‘participate in decision-making and, as appropriate to their capabilities, to make decisions about their care’, and ‘Be kept safe from all forms of harm’.

Governmental duty to uphold te Tiriti

• Te Pae Mahutonga, a Māori health framework used by the Ministry of Health, speaks to Te Mana Whakahaere, autonomy for Māori within their own healthcare. If further restrictions are applied to puberty blockers, this denies autonomy for Māori irawhiti/trans young people, and goes against their own framework.
• Under te Tiriti o Waitangi, the Crown and New Zealand Government have specific obligations of active protection, including in the realm of Māori health. The Waitangi Tribunal found that the government had breached te Tiriti/the Treaty principles of tino rangatiratanga, good government, and partnership in disestablishing Te Aka Whaiora.
• Tino rangatiratanga, commonly translated to mean self-determination, is a right that the government needs to uphold for Māori. This includes the right for rangatahi takatāpui/young rainbow Māori people to determine what they need for their own wellbeing in regards to healthcare. Restricting access to puberty blockers for trans young people denies tino rangatiratanga for rangatahi Māori.
• Almost a third (32%) of rainbow rangatahi Māori have forgone healthcare when they needed it, the Youth19 survey found. Nearly 1 in 10 (9%) have experienced discrimination in healthcare. There are already structural barriers to rainbow rangatahi Māori accessing healthcare, and restricting access to puberty blockers would exacerbate these barriers.
• In Aotearoa we are guided by te Tiriti o Waitangi, our country’s founding document. Because of this, reviews such as the Cass Review from the UK, are irrelevant in certain ways as they do not have the context of te Tiriti. It is important to focus on Aotearoa specific needs, evidence, and knowledgeways, such as tino rangatiratanga.

Mental health

• The Ministry of Health’s position statement largely focuses on ‘limitations in the quality of evidence for either the benefits or risks (or lack thereof) of the use of puberty blockers’, however this is in part due to research not explicitly showing puberty blockers to improve gender dysphoria. This is misleading though, as the purpose of puberty blockers in regards to gender dysphoria is to prevent irreversible unwanted physical changes from puberty that would result in a worsening of dysphoria. In other words, the role they play is preventative – puberty blockers prevent an increase in dysphoria brought on by unwanted physical changes, rather than improving current dysphoria.
• Rigorous observational studies show that puberty blockers improve the mental health and wellbeing of transgender young people, lowering depression and suicidal ideation and increasing quality of life for those who can access it.
• Denying, preventing, or withholding access to gender affirming care is life threatening. 57% trans and gender diverse rangatahi experienced significant depressive symptoms and the same percentage had self-harmed in the previous 12 months. 26% of these rangatahi had attempted suicide in the last year. (Youth19). There are many personal accounts from rangatahi that their mental health is negatively affected by being unable to access gender affirming healthcare, meaning that lack of access to gender affirming healthcare is a factor in these disproportionately high mental health statistics.
• International evidence is clear that the introduction of restrictions on gender affirming care have atrocious impacts on the mental health of our young people – one American study found a 72% year-on-year increase in suicide attempts in trans young people.

“Risk”

• Every medication has potential risks and side effects; it is simply a case of risk vs. benefit management, and this should be the same for trans young people and puberty blockers.
• We know that denying access to gender affirming healthcare is dangerous and life-threatening. The potential for bone density issues is weighed against risks of life long dysphoria, self-harm, and suicide.
  Puberty blockers have been shown to be reversible; however the alternative of going through unwanted physical changes in puberty is irreversible.
• Existing data, including from their long-term use for precocious puberty, suggests that puberty blockers are as safe as other routine medical care. Any potential risk from the use of puberty blockers is identical whether they are used to treat precocious puberty or for rangatahi with gender dysphoria, however the safety of puberty blockers for precocious puberty is not being put under questioning in this report.
• The identified potential risk of bone density development happens when there is a lack of sex hormones in one’s body. This risk can be mitigated for trans young people by putting them on sex hormones that align with their gender as soon as possible (if this is something the young person wants and can give informed consent to), not simply puberty blockers long term.
• Other research notes that trans people have low bone mass densities (BMD) regardless of treatment due to other factors: “Trans youth have an average BMD before the onset of puberty that is lower than that of the general population, regardless of treatment. This is probably related to the consequences of dysphoria: less physical activity, eating disorders, and/or poor dietary balance,” and they also note that after moving to gender affirming hormones, “BMD comparable to that of the experienced gender.” They also recommend vitamin D and exercise to mitigate potential concerns.
• The current guidelines for puberty blockers currently include regular monitoring of bone density development, including x-rays, bone density scans, and prescription of Vitamin D.

Inappropriateness of consultation process

• There are countless other medications that have potential risks which haven’t been publicly consulted on, so why are puberty blocking medications being put to public submissions? This is the first time that MoH has opened public submissions on the regulation of a medication.
• A public consultation process on a medical matter for a minority population already subjected to increasing amounts of hatred and disinformation is totally inappropriate. Medication regulation isn’t a topic that the general public are knowledgeable about, and this should instead be going through experts in trans healthcare – especially considering submissions are open to those unaffected by the use of puberty blockers who hold anti-trans extremist views and have the potential to sway the data.
• The fact that this consultation is only open to discussion for trans young people, not other uses of puberty blockers, shows that this isn’t a healthcare issue, it’s a political issue.
• The way that this consultation process has been done has been full of bias and leading questions, meaning that the results will be biased towards restriction. Rainbow organisations who work with trans young people have not been appropriately consulted, spaces of consultation haven’t been safe for trans people (in the words of MoH officials), and expert professional health organisations such as PATHA and Gender Minorities Aotearoa haven’t been individually approached at all to consult.
• Two months over the summer break is not enough time to consult meaningfully with those substantially affected by this proposal (as required under the Medicines Act). The Ministry of Health needs to be taking the time to consult safely with those most affected – which is trans children. This is a process that needs to be careful and take time – how do you ‘safely’ ask children how they feel about their right to access healthcare being restricted?
• Many areas of healthcare also have “low quality” evidence – the Government is holding trans healthcare to a standard other areas of health do not meet, which is discriminatory.

Further Resources

Village Project Aotearoa – Family experiences with puberty blockers in Aotearoa

Village Project Aotearoa – Current evidence on puberty blockers

MoH Position Statement

GMA Analysis

QED Statement

PATHA Media Release

PATHA Guidelines

Counting Ourselves Fact Sheet on Conversion Practices

Suicide Prevention (via Te Ngākau Kahukura)

Be There NZ

Conversion Practices (Via Te Ngākau Kahukura)

Takatāpui Resources