Examining the Cass Review: Impacts on gender dysphoria treatment in South Africa

First Do No Harm Southern Africa (FDNHSA) is committed to educating South Africans about compassionate, evidence-based care for youth with gender dysphoria. In a recent article published on Spotlight, we posed a challenge to the South African medical community: 

“As international recognition of the lack of evidence for gender-affirming care grows, the South African medical community stands at a crossroads. Will the Cass Review’s call to provide compassionate, evidence-based care to vulnerable children be taken seriously? Will clinicians who have advocated and implemented medicalizing treatment approaches for children and adolescents with gender dysphoria find the humility and courage to change their practice?”

In response, Helen, the mother of a “trans child” published a letter on the website of the Professional Association of Transgender Health South Africa (PATHSA). Helen’s response serves to highlight the importance of having this conversation in South Africa.

In the letter, she expresses extreme concern about her distressed 13-year-old, saying:  “It takes months to see an endocrinologist and it must be done with the support of a psychiatrist. I have watched my child’s despair as ‘professionals’ and adults decide his future. I have watched adults call him an abomination, refer to him as ‘it’ or ‘confused’… My son hides in his bedroom, has panic attacks, won’t shower because he has to undress, has swapped schools three times and yes, he attempted suicide at 13 and often cuts himself.  Every day is a fight to keep my child alive.”

This is a desperate situation, and highlights the reality of children with gender dysphoria or distress in South Africa. 

What is clear from Helen’s letter is that her child is suffering, with signs suggesting severe depression, suicidality, self-harm, anxiety and difficulty with social and peer relations.

Young people in this situation often have co-occurring mental health challenges. Many are on the autistic spectrum and have histories of trauma, abuse, or unstable family situations.

Helen is under the impression that the solution to this complex situation would be a visit to an endocrinologist. She and her family have not been told by anyone in the medical community that the “gender affirming” approach, which involves social transition, puberty blockers, cross sex hormones and breast and genital surgeries, has not been shown to make any long-term improvement in a child with serious mental health issues or gender dysphoria. And the family has likely not been told that puberty blocking drugs and cross sex hormones are likely to result in severe irreversible harms, including infertility.

Helen believes that less than 1% of children detransition. Actually, the real detransition rate is not known and a recent German publication suggests that most children outgrow their gender identity confusion within 5 years.

Helen states that “Trans youth” have a 50% suicide rate”. Thankfully this is unfounded and importantly, there is no evidence that hormone treatment reduces suicide risk. Between 2010 and 2020 in the UK, at the world’s largest gender clinic at the time, four children attending the clinic committed suicide. This equates to 0.03% of the total patient population. Unfortunately, the often quoted “50% risk of suicide”  used by “gender affirming” activists, and that Helen now believes, is likely a significant reason that parents like Helen experience extreme anxiety when faced with situations like this. Helen’s letter highlights an urgent need for accurate information to be provided to young people, parents, health care providers and educators.  

Open and respectful discussion

Open discussion and debate can help us uncover evidence and make decisions about what is best for young people.

Until recently, it has been very difficult to have open debate in South Africa. Some doctors who have expressed concern about the lack of evidence for “gender affirming care” have been reported to professional bodies and employers, forced to undergo hearings, had their concerns misrepresented and their character attacked in public. This has resulted in a climate of fear and extreme reluctance to discuss or debate or speak out in public – whether in the media, the health care environment, in academia or in schools.

The good news is that globally, evidence for developing the best approach to caring for children and adolescents with gender distress is rapidly emerging. The recent release in the UK of the Independent Review of Gender Identity Services for Children and Young People (the Cass review) is an extremely significant development. The Cass review concluded that the use of puberty blockers and cross sex hormones in children, part of the  “gender affirming” care package,  had been based on “wholly inadequate evidence”.

In South Africa, a number of articles have been published on the subject of “gender affirming care” for children, since the beginning of 2024.

PATHSA published in Daily Maverick, “Response to First Do No Harm: Why we treat gender diverse youth” in defence of these treatments on 8 February 2024. FDNHSA responded with, “Compassionate, evidence-based care for gender-dysphoric children and adolescents is paramount” on 19 February, and on 17 May published “The Cass Review provides guidance on gender-affirming care: SA’s medical community is now at a crossroads” to show that the claims made that “gender affirming” care is safe and effective are unfounded, and that the evidence base is poor.

Following this, despite the findings of the Cass review, PATHSA published an article in Spotlight on 13 June 2024, titled “Why affirming treatment for gender questioning youth matters in SA”, again promoting puberty blockers and cross sex hormones in children as part of “gender affirming” care.

The article references the Cass review and makes a number of misleading statements about its findings. For example, “In South Africa, similar steps are needed to both expand gender-affirming care for youth and prevent the collapse of the existing, limited, services”, implying that the Cass review suggested that “gender affirming care” should be expanded for children.

The Cass review does not recommend expanding gender-affirming care, medical or social transition, but rather recommends expanding support for children with psychological distress, of which gender confusion may be a component. Dr Cass, a pediatrician, directly addresses young people:

“Firstly, you must have the same standards of care as everyone else in the NHS, and that means basing treatments on good evidence. I have been disappointed by the lack of evidence on the long-term impact of taking hormones from an early age; research has let us all down, most importantly you.”

Social transitioning of minors

In her report, Dr Cass states: “Although a diagnosis of gender dysphoria has been seen as necessary for initiating medical treatment, it is not reliably predictive of whether that young person will have longstanding gender incongruence in the future, or whether medical intervention will be the best option for them.”

Open debate on the subject of “social transitioning” is important. 

Despite Cass’s findings, a recent media article written by PATHSA encouraged social transition of youth and referenced two studies to support the conclusion that social transition is helpful in the context of gender distress in youth.

“Social transitioning involves adopting a new name, pronouns, and clothing that align with a person’s gender identity … This process can significantly improve mental health by reducing gender dysphoria and promoting a sense of authenticity and acceptance”.

A single article was referenced to support their conclusion that social transition is beneficial. The article also states: “When supported in socially transitioning, trans and gender-diverse youth exhibit improved mental health outcomes and reduction in gender dysphoria. For example, a study showed that using a chosen name significantly reduces suicidal behaviour and improves mental health among trans and gender diverse youth.” Again, a single article is referenced to support the conclusion. These claims are not adequately supported by rigorous evidence.

The first referenced study is problematic because of its small sample size of only 73 “transgender children”. It also did not require the children enrolled in the study to meet the criteria for distress that would be necessary for a psychiatric diagnosis of gender dysphoria. It is unsurprising that the finding was that levels of depression were similar to peers and siblings who were not “transgender”, because the youth entering the study were not distressed in the first place, and so it cannot be concluded that social transition was helpful.

The second study referenced also has problems including a small sample size (only 129 children), failure to adjust for important confounding factors such as co-occurring mental illness, inability to verify questionnaire responses, no long term follow up, only assessing adolescents and not children, and participants not being required to meet the criteria for distress in order to enter the study. Their findings were not reproducible in a subsequent study in 2023. The study was included in the systematic review of medical evidence regarding social transition, that informed the Cass review, and was rated as low quality.

A simplistic description of the evidence is not adequate and closer examination is needed. The Cass review included a systematic review on the effects of social transition, Impact of social transition in relation to gender for children and adolescents: a systematic review | Archives of Disease in Childhood (Hall et al., 2024). Eleven studies were included in this rigorous systematic review of the evidence base, with the conclusion:

“It is difficult to assess the impact of social transition on children/adolescents due to the small volume and low quality of research in this area. … Professionals working in the area of gender identity and those seeking support should be aware of the absence of robust evidence of the benefits or harms of social transition for children and adolescents.”

In addition, the Cass Review notes: “The [relevant] systematic review showed no clear evidence that social transition in childhood has any positive or negative mental health outcomes, and relatively weak evidence for any effect in adolescence. However, those who had socially transitioned at an earlier age and/or prior to being seen in clinic were more likely to proceed to a medical pathway.”(Page 31)

Social transition may be reversible in many instances, but there is clear concern about the concretising nature of social transition and that it dramatically increases the chances of a child or adolescent proceeding onto further and more radical medicalising interventions. The importance of using a rigorous evidence base and systematic reviews, rather than an approach that “cherry picks” poor quality and unreliable studies as sources of evidence, is clear, and open debate is needed to inform people.

Puberty blockers and cross-sex hormones

Until recently, an oft repeated claim about puberty blockers has been that they are “fully reversible”. However, on closer examination, puberty blockers when used to delay the normal onset of puberty (as compared to their use to treat precocious puberty, a very different condition), have not been shown to be reversible.

Serious concerns have been raised 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. Puberty blockers are no longer considered simply a pause to allow “time to think” as they seem to increase the rate of progression onto further medicalisation: “98% of children who take the first go on to take the latter”. The Cass Review systematic reviews, and other systematic reviews have not found that these interventions can reliably improve distress.

Thus, calling them “necessary” is not supported. The treatment is built on shaky foundations and it has not been shown that these interventions help mental health, or even suicide risk.

In the UK, following the Cass review final report, puberty blockers have been banned in the private and public sectors and the Cass review stated that they should now only be used within the context of a clinical trial. It is yet unclear whether such a trial will even be conducted as ethics boards are usually very strict when it comes to experimental treatments on children, especially when harm has already been shown.

If this Information is not provided to the public and discussion is shut down, an impression is created that puberty blockers and cross-sex hormones are proven to be beneficial. Focusing on hormonal treatment can result in ignoring and distraction from other co-occuring and possibly causal mental health issues that may need urgent attention.

What guides doctors and health care providers in making decisions? Is the South African HIV Clinicians Society Gender Affirming Healthcare Guide (SAHCS GAHG) a reliable guide?

In a recent media article, the SAHCS GAHG was promoted as a reliable source of guidance on the subject of gender dysphoria as follows: 

“Suffice to say, it [the Cass review] remains a contentious document. By contrast, the Southern African HIV Clinicians Society (SAHCS) Gender-Affirming Healthcare Guideline is a comprehensive, context-specific framework developed by 17 healthcare providers and researchers with input from an additional 27 contributors, all of whom are knowledgeable about trans issues and trans health.”

This guideline is not based on current and high quality evidence. In the Cass review, the SAHCS GAHG guideline was studied. The findings were published in the reputable Archives of Disease in Childhood (part of the British Medical Journal) : Clinical guidelines for children and adolescents experiencing gender dysphoria or incongruence: a systematic review of guideline quality (part 1).  

The SAHCS GAHG scored poorly as a  guideline. No reviewers recommended it for use, and it received scores of two or three out of a possible seven. Also, it was noted that GAHC guidelines from around the world relied heavily on each other and this occurred for the SAHCS GAHG as well.

Regarding how doctor’s make clinical recommendations, a British Medical Journal report Gender dysphoria in young people is rising—and so is professional disagreement, noted that:

“…they [guidelines] are based on systematic review of the relevant evidence,” for which there are also now standards, as opposed to a traditional narrative literature review in which “a bunch of experts write whatever they felt like using no particular standards and no particular structure.”

Mark Helfand, professor of medical informatics and clinical epidemiology at Oregon Health and Science University, says: “An evidence-based recommendation requires two steps.” First, “an unbiased, thorough, critical systematic review of all the relevant evidence.” Second, “some commitment to link the strength of the recommendations to the quality of the evidence”.

The influence of “Conflicts of Interest”

In the process of developing medical guidelines and in evidence-based medicine, avoiding conflict of interest is a core and vital principle. This is well described in this article from the British Medical Journal (BMJ) titled  You have to be above reproach: why doctors need to get better at managing their conflicts of interest. “Chairs of topic specific guideline committees are not allowed any direct interests (financial, non-financial, professional, or personal) that relate to the services, interventions, products, or delivery of care to be considered within the scope of the guideline.”

It would not be appropriate, for example, to have clinicians or activists with a clear bias and loyalty towards “gender affirming care” to lead such a review of “gender affirming care”. It must be impartial.

If a child psychiatrist is actively engaged in directing large numbers of families to socially “transition” their children and openly declaring doing so, this would make it difficult for them to be able to describe the concretising and risky nature of social transition. Such a practitioner would be significantly biased and likely unable to impartially use emerging evidence on social transition to inform a guideline. Without any other voices, the truth would get lost. Likewise, if a professional is themselves, or has a close friend or family member that is receiving “gender affirming care”, this could be a significant conflict of interest.

Conflicts of interest have not been adequately addressed in the development of the SAHCS GAHG, which explicitly states that it is committed to “upholding a strength-based perspective that values and respects the experiences of TGD clients”.

The section on methodology states: “The guideline development committee comprised 17 people…with representation of providers, advocates and civil society organisations in the TGD space, and many with personal experience as a TGD client. Development was predicated on the necessity to amplify the voices of those within the TGD community in order to better meet their needs, rather than presuming that healthcare providers can address those needs alone. ….The committee worked from a gender-affirming, non-gatekeeping, depathologising perspective using a participatory approach that centres on the TGD client’s agency and humanity, and upholds their dignity.”

A glaring oversight in the development of the SAHCS GAHG is that detransitioners and their lived experience were not included in the development of the guide.  It also needs to be noted that an approach that seeks to remove all “gate-keeping” will no longer be able to safeguard the most vulnerable children and adolescents. If harm results – this is the opposite of upholding their dignity.

The SAHCS GAHG relied heavily on the World Professional Association of Transgender Health (WPATH) guideline, which has lost all credibility after the release of the WPATH Files (internal communications which revealed corrupt practices), and more recent internal communications which reveal political interference in the organisation.

Conflict of interest is also illustrated, among others, by a recent Yale Integrity Project report (that attempts to criticise the evidence base of the Cass review) as the authors carry serious financial conflicts of interest.

The Cass review consisted of a four-year-long independent, rigorous review process with extensive stakeholder engagement, including organisations that support trans people and also including detransitioners. It is a very good place to continue the much needed debate in South Africa about the optimal way to provide care for vulnerable young people.

Conclusion

The European Society for Child and Adolescent Psychiatry (ESCAP) recently released a position statement, urging that there is “an urgent need for safeguarding clinical, scientific, an ethical standards” in the care for children and adolescents with gender dysphoria:

“(ESCAP) urges all professionals … to … insist that novel and experimental interventions related to gender dysphoria are differentiated from routine clinical treatment and are performed exclusively as part of documented observational intervention protocols or research trials, safeguarding standards for research on paediatric participants and vulnerable populations … ESCAP calls for healthcare providers not to promote experimental and unnecessarily invasive treatments with unproven psycho-social effects and, therefore, to adhere to the “primum non nocere” (first, do no harm) principle.”

Clinicians who have been providing (and continue to provide) medicalising treatments to children and adolescents for gender dysphoria in South Africa may find it difficult to hear the news of the shifting evidence base, and to seriously engage with what the implications are. It will take courage to reconsider a position that has been rationalised and defended.

If we are all concerned with the best interests of children, let’s be open minded and keep talking, respectfully.

Dr Allan Donkin, Dr Janet Giddy and Professor Reitze Rodseth write as representatives of First Do No Harm Southern Africa.