On 28 January 2024, First Do No Harm Southern Africa (FDNHSA) published an article in Daily Maverick titled “A call on SA medical professionals to heed evidence on child and adolescent gender distress”.
The Professional Association for Transgender Health South Africa (Pathsa) and the Southern African HIV Clinicians Society replied in Daily Maverick on 9 February 2024 with their “Response to First Do No Harm: Why we treat gender diverse youth”.
While some FDNHSA members have previously addressed this topic in medical publications, (see for example Reitze N Rodseth, Roberto D’Angelo. Managing Gender Dysphoria In Children, A Need For Caution. South African Psychiatry Issue 32, 2022) we believe that bringing this discussion into the public space will provide people with a deeper understanding of scientific medical evidence, the complexity of how clinical protocols are developed, and importantly, the topic of gender dysphoria and the best way to provide care for vulnerable children and adolescents.
Given the importance of the topic, we provide a detailed response to Pathsa in this article.
It is encouraging to read that Pathsa “appreciate[s] the opportunity for constructive dialogue”, and that they are “deeply committed to honest, transparent engagement based on the latest and most robust evidence that exists”. A respectful approach is vital in those who seek to make the best interests of children paramount.
A fundamental difference in perspective?
Despite Pathsa and FDNHSA having the same set of scientific publications available to us, we seem to come to very different conclusions on how to provide care to these children. This often happens when there are differences in the fundamental assumptions being held between two groups, which determines how we interpret the evidence placed before us. With this in mind, we note that throughout their article Pathsa repeatedly refers to the group of children we are discussing as being “trans youth”:
“Considering the wealth of evidence that gender dysphoria is real and has negative consequences for trans youth, the ethical …”; “… issues related to puberty blockers, the growing number of trans and gender diverse (TGD) youth seeking care…”; “The assumption that all TGD want medical interventions is incorrect…”; and “Puberty blockers, which have been used for decades to manage conditions like early onset puberty, offer a reversible, short-term option for trans youth to delay puberty-related changes.”
Who are these children presenting to healthcare providers and asking for help? For context, note that referrals to the Gender Identity Service (GIDS) at the UK Tavistock clinic rose from about 50 per year in 2009 to more than 5,000 per year in 2021/22, a 10,000% increase in just over a decade.
It seems as if Pathsa sees children, such as those who presented to the GIDS clinic, as trans and gender-diverse youth who are seeking care. They postulate that the reason we have seen a massive surge in the number of children presenting with gender dysphoria is a sign of an increasingly open and tolerant society. The dysphoria is a symptom of their “true” gender identity being at odds with their biological reality.
Thus, Pathsa presents their approach as one that “respect[s] the individual’s exploration of their gender identity and dignity”, provides affirming care that, “is about validating and supporting youths’ exploration of their gender identity”, and believes puberty blockers are a “reversible, short-term option for trans youth to delay puberty-related changes, allowing time for thoughtful and empowering exploration”.
FDNHSA would disagree with this view. There are a wide range of reasons that children may present with gender dysphoria, and until the recent adoption of “gender-affirming” care pathways, the overwhelming majority of these children found that their symptoms resolved as they passed through puberty and that their care did not require social transition, hormonal therapy, or being classified as a trans youth.
Further, adolescents entering puberty are highly vulnerable to social influences and this has been strongly postulated as a contributing factor, similar to conditions such as anorexia nervosa or functional tic disorders (see, for example, Allison S, Warin M, Bastiampillai T. Anorexia nervosa and social contagion: clinical implications. Aust N Z J Psychiatry. 2014 Feb;48(2):116-20. doi: 10.1177/0004867413502092. Epub 2013 Aug 22. PMID: 23969627; and Grice DE, Budman CL. Tics and tic-like behaviours: social contagion in pandemic times. J Am Acad Child Adolesc Psychiatry. 2022 Oct;61(10):S79. doi: 10.1016/j.jaac.2022.07.332. Epub 2022 Oct 12. PMCID: PMC9553600.)
Having gender dysphoria does not automatically mean that a child is a trans youth, and we believe this a vital point that must be understood by the wider community.
‘Watchful or active waiting’
The title of Pathsa’s article, “Response to First Do No Harm: Why we treat gender diverse youth”, and their statement that “considering the wealth of evidence that gender dysphoria is real and has negative consequences for trans youth, the ethical principle of ‘first do no harm’ should recognise that delaying care can, in itself, be a form of harm”, creates the impression that FDNHSA advocates for not treating, or denying care to children and adolescents with gender dysphoria.
FDNHSA does not advocate delaying or denying the treatment of gender-dysphoric young people. Rather, it is the method of treatment which we dispute. We are challenging the poor quality of evidence supporting the “gender-affirming” approach – in particular the use of social affirmation/transition and medical intervention in the form of puberty blockers, hormones or surgery.
The term “watchful waiting” can create a false impression that the approach advocates “doing nothing”. However, this could not be further from the truth. Watchful waiting, perhaps better described as active waiting, is an active treatment strategy that includes psychotherapy, attention to family and social circ*mstances, managing commonly occurring co-existing psychiatric conditions (such as autism, anxiety, depression, history of abuse or trauma), and interventions to reduce social media exposure while avoiding the affirmation pathway of social transition, puberty blockers, cross-sex hormones, and surgery.
When evidence for benefit is lacking, as we believe is the case for the “gender-affirming” approach, the next question that must be asked is, “which treatment causes least harm?” Importantly, there is no evidence that a holistic active waiting approach to care is harmful.
How to choose a treatment – levels of evidence
Systematic reviews
Doctors want to offer their patients a treatment that will work and that won’t harm them. However, not all evidence is equally reliable, therefore medical scientists have developed a medical evidence ranking system, the evidence-based medicine pyramid, to assist doctors as they make their decisions.
At the bottom of the pyramid we find the least-reliable evidence – expert opinion. Expert opinion is notoriously susceptible to bias and error. We then get case series or reports, observation studies, non-randomised controlled trials, randomised controlled trials, and then, right at the top of the pyramid, we find systematic reviews.
A systematic review is an in-depth investigation that aims to find all studies on a specific topic and then analyses, describes, critically appraises and summarises interpretations into a refined evidence-based conclusion. This includes an evaluation of each included studies’ biases, problems with methodology, and then provides a grading of the quality or certainty of the study’s findings. A systematic review is the direct opposite of “cherry picking” and should be the first place doctors go to when they have questions about medical treatment.
In the past few years, the national health authorities in Finland, Sweden and the UK have conducted systematic reviews to assess the best evidence available regarding “gender-affirming care” of children and adolescents with gender dysphoria, and all have reported the quality of the evidence supporting gender affirming care as poor quality. (See here, here, here and here).
In fact, the World Professional Association of Transgender Health (WPATH) also commissioned a systematic review which was published in 2021. In the report the authors noted that “certainty in this conclusion is limited by high risk of bias in study designs, small sample sizes and confounding with other interventions. We could not draw any conclusions about death by suicide.”
It is therefore misleading that Pathsa would claim that “the positive impact of these treatments for transgender youth is well documented”. For example, the first article cited by Pathsa to substantiate this claim has been thoroughly refuted (see here and here) and the second article cited did not focus on children and adolescents. It doesn’t matter how many unreliable studies you point to, their conclusions still remain unreliable.
Treatment guidelines and WPATH
In addition to systematic reviews, doctors turn to treatment guidelines, published by societies or special interest groups, for guidance. These guidelines are expected to faithfully present the reader with the evidence available on the topic, as well as providing an idea of the reliability of this evidence.
It is accepted consensus in medical evidence methodology that a high-quality, evidence-based guideline must be based on a systematic review:
And
From this foundation, medical scientists then develop evidence-based treatment guidelines to assist clinicians in providing the best possible care.
WPATH was founded in 1979 and for decades has been considered the international authority on transgender care. It has issued a series of treatment guidelines for gender-dysphoric patients over the years, and these have been commonly used to direct patient care.
However, recently WPATH guidelines have increasingly come under scrutiny and subsequently lost credibility for being insufficiently evidence based in its recommendations. The NHS in England stated in its Interim Clinical Policy: Puberty suppressing hormones (PSH) for children and adolescents who have gender incongruence or dysphoria Public Consultation Guide 2023 that:
“On alignment to WPATH standards; NHS England commissions treatment based on evidence of clinical effectiveness, cost effectiveness and safety. WPATH standards of care do not determine clinical commissioning decisions for NHS.”
While this article is not a detailed critique of the WPATH guidelines, it is worth noting that the conclusion from its own systematic review showing that “gender-affirming” studies were of poor quality was not included in WPATH’s latest 2022 guideline (SOC8).
Similarly, the Southern African HIV Clinicians Society’s Gender Affirming Healthcare Guidelines which Pathsa assisted in developing, cannot be said to have “followed a robust process of considering the evidence”, as the guide is not based on any systematic reviews of the evidence, despite the fact that there are now several available to be consulted (see here, here, here and here).
The evidence for puberty blockers
Pathsa is correct when they say that puberty blockers have been well studied as a treatment for precocious (early) puberty – a condition where children start to enter puberty years too soon.
However, they incorrectly claim that they “offer a reversible, short-term option for trans youth to delay puberty-related changes, allowing time for thoughtful and empowering exploration”.
In precocious puberty these blockers are used to prevent the abnormally early onset of puberty, while in gender-dysphoric patients they are being used to prevent the normal biological onset of puberty. This means that data from puberty blocker use in children with precocious puberty cannot be legitimately applied to children with gender dysphoria (who would be older) and we have, in truth, little understanding of the effects of puberty blocker use in gender-dysphoric patients.
It is also not true that the effects of puberty blockers are reversible. We are now starting to see studies that raise serious concerns about the harmful effects of puberty blockers on bone density (early osteoporosis) and related chronic pain, detrimental effects on cognitive development, and, if followed by cross-sex hormone use in adolescents, reproductive sterility (see for example here, here, here and here).
Pathsa’s article proposes possible treatments for these problems but, when considering that systematic reviews fail to show that puberty blockers improve gender dysphoria symptoms, we are forced to ask why they are being used in the first place. The UK NHS Cass Review highlights serious concerns about the effect of puberty blockers:
“Brain maturation may be temporarily or permanently disrupted by puberty blockers, which could have significant impact on the ability to make complex risk-laden decisions, as well as possible longer-term neuropsychological consequences. To date, there has been very limited research on the short-, medium- or longer-term impact of puberty blockers on neurocognitive development.”
After conducting a systematic review, the NHS produced an Interim Clinical Policy on the use of puberty-suppressing hormones for children and adolescents who have gender incongruence/dysphoria, in which they write:
“We have concluded that there is not enough evidence to support the safety or clinical effectiveness of PSH [puberty suppressing hormones] to make the treatment routinely available at this time. NHS England recommends that access to PSH for children and young people with gender incongruence/dysphoria should only be available as part of research.”
In effect, this indicates that the NHS considers the use of puberty blockers to be experimental treatment, which needs further scientific study. The advantage of a research setting or clinical trial is that the ethical approval that forms part of the rigorous scientific process mandates that the use of study drugs be closely monitored to detect and constrain any harm. In clinical trials data safety monitoring boards provide ethical and practical oversight, and when problems are noted, the trial will be stopped. Ethics boards are known to be strict when it comes to studies involving children.
In the UK, the NHS was forced to intervene to protect vulnerable children and adolescents following complaints about the Tavistock GIDS clinic, the biggest of its kind in the world, following a “gender-affirming” approach, including the use of puberty blockers and cross-sex hormones.
FDNHSA recommends to any parent whose child has been placed on puberty blockers for gender dysphoria in South Africa that they ask their doctors why this has not been done within the setting of a clinical trial.
Socially transitioning gender-dysphoric children
In 2022, Dr Kristina Olsen published a study where she reported that five years after socially transitioning children who identified as transgender, only 7% retransitioned to live as their original biological sex.
In our original article we argue that Olsen’s study shows that starting social transitioning blocks the natural resolution of the child’s gender dysphoria, a conclusion Pathsa disagrees with. They argue that the publication shows that children who transition are happy with their choice.
We do not see how Pathsa can come to this conclusion when historically, most children presenting with a cross-sex identity or gender dysphoria would not persist with these beyond puberty (see here, here, here and here).
Significantly, 60% of the children in the Olsen study were on puberty blockers or cross-sex hormones by the end of the study period. This raises the concern that full social transition, including changing names and pronouns, and the use of puberty blockers may lead to a “conveyor belt” type of effect. The Society for Evidence-Based Gender Medicine, referring to a Dutch study published in 2022, reports that:
“The authors concede that puberty blockers may not serve as a diagnostic tool as previously thought, but rather represent the first step in medical gender transition. The authors also hypothesise that it might be possible that ‘starting GnRHa [the technical term for puberty blockers] in itself makes adolescents more likely to continue medical transition’.”
Many children who present with gender dysphoria at a young age end up being same-sex attracted adults without gender dysphoria. This has led to concern about the “conveyor belt” effect of “gender-affirming care” interventions as possibly being a new type of hom*osexual conversion therapy – that seeks to make those who are same-sex attracted heterosexual through gender transition.
It is simply not true to state, as Pathsa has done, that “only a small minority of trans youth will retransition to a cisgender identity”. There are no long-term, rigorous studies that have adequately tracked children and adolescents who have received “gender-affirming” care and gathered reliable data over the long term. The true detransition rate is unknown.
Informed consent
Irrespective of the involvement of parents and clinicians in decision-making, two serious concerns about the ability of children to consent to “gender-affirming treatments” are coming to the fore: (a) the lack of research with long-term follow-up of children and adolescents who have been transitioned limits the information that can be given to assist with decision-making; and (b) it is extremely difficult for children to understand the long-term and irreversible consequences of what is being done to them, because their brain development is not fully mature, as highlighted by Dr Hilary Cass, the paediatrician who led the Cass review for the NHS (also see here, here and here).
Conclusion
Part of a constructive and respectful dialogue is to seek common ground on which two parties agree. It would seem that there is agreement, in principle at least, that we should continue dialogue around this issue.
We all need to be respectful of people who have different opinions and perspectives and avoid ad hominem attacks and cancel culture punitive responses. We would strongly advocate against cherry picking of studies to support ideological positions, but rather to follow the best available and highest-quality evidence.
Finally, in all our discussions and actions, there should be agreement that in every matter we should place the best interests of children at the forefront of all we do.
First Do No Harm SA is a voluntary association of South African professionals who are advocating for evidence-based care of children and adolescents with gender distress. Anyone who would like to know more can email [emailprotected] DM
This article is signed by the following professionals, who are members or supporters of FDNHSA: Dr Janet Giddy: Family Physician, Cape Town; Assoc Professor Reitze Rodseth: Anaesthesiologist & critical care specialist, Pietermaritzburg; Dr Tygie Sidhambaram Nadesan: Family Physician, Durban; Prof WJ Steinberg: Family Physician, Bloemfontein; Dr AK Lutakwa: General Surgeon, Durban; Dr Martin Bac: Family Physician, Gauteng; Dr M Gounder: Urologist, Durban; Dr Erika Drewes: Family Physician, Cape Town; Dr Ami Muller: General Practitioner, George; Dr Jonathon Pons: Eye Surgeon, Eswathini; Dr Jolanda Niemann: General Practitioner, Gauteng; Dr Allan Donkin: General Practitioner, Western Cape; Dr Albu van Eeden: General Practitioner, KZN; Dr Francois Potgieter: Child Psychiatrist, North West; Dr Hein Pohl: Surgeon, Western Cape; Dr Frances Scholtz: General Practitioner, Western Cape; Dr Maria Rossouw: Medical Officer in Endocrinology, Bloemfontein; Dr Caroline Armstrong: Emergency Care doctor, Pietermaritzburg; Dr Jon Larsen: Obstetrician, KZN; Melindie Pretorius: Researcher & medical student, Western Cape; Jaco van Zyl: Clinical Psychologist, South African in Ireland; and Vincent Deboni: Counselling Psychologist. South African in Sweden.
