OPINION | Cass Review provides guidance on gender-affirming care: SA’s medical community now at a crossroads

The question as to the best approach to providing care for children and young people with gender dysphoria or gender incongruence is complex, contested and controversial, both in South Africa and globally. After the release of a major new report in the UK, it is clear that a change of course is needed in South Africa, argue doctors Janet Giddy, Allan Donkin and associate professor Reitze Rodseth.

The National Health Service (NHS) in the UK released their Independent Review of Gender Identity Services for Children and Young People — also called the Cass review — on April 10. Led by Dr Hilary Cass, a paediatrician and former president of the Royal College of Paediatrics and Child Health, the review is the culmination of a four-year investigation into how the NHS provided care to children and young people with gender dysphoria at the largest gender clinic in the world — the Tavistock Gender Identity Development Service (GIDS). The 388-page report was accompanied by nine studies, eight of which were systematic reviews of evidence, supporting the recommendations.

This is a landmark report because it heralds the end of an era of the heavily medicalised gender-affirming care approach to the treatment of young people with gender-related distress. In this context, medicalised care means prescribing hormone-blocking medication to halt the physical changes of puberty, as well as opposite sex (cross-sex) hormones, with the final possible step in the process being “gender-affirming surgery”. This entails major surgical procedures, including mastectomy and removal of genital organs, which can cause severe and permanent side effects such as sexual dysfunction and infertility, among other problems.

At the heart of the new review is a profound concern expressed by Dr Cass for the welfare of children and young people. An article in the British Medical Journal summarised the report as follows:

“A spiralling interventionist approach, in the context of an evidence void, amounted to over-medicalising care for vulnerable young people. A too narrow focus on gender dysphoria, says Cass, neglected other presenting features and failed to provide a holistic model of care ... In a broader sense, this failure is indicative of a societal failure in child and adolescent health. The review’s recommendations, which include confining prescription of puberty blockers and hormonal treatments to a research setting now place the NHS firmly in line with emerging practice internationally, such as in Scandinavia.”

In meticulous detail and using measured tones, Cass’ report reveals what was going on inside GIDS. She concludes that the gender-affirming medical treatments it provided, like puberty blockers and cross-sex hormones, were based on “wholly inadequate evidence”. Doctors are usually cautious when adopting new treatments, but Cass says “quite the reverse happened in the field of gender care for children”. Instead, thousands of children were put on an unproven medical pathway. Worse still, medical professionals seemed largely uninterested in uncovering the side effects and long-term risks of these drugs. Cass says that all but one adult gender clinic refused to share patient data that would allow her team to study how the children who were transitioned fared as adults. This made it virtually impossible to research the potential longer-term consequences of transitioning. This has largely been driven by a focused and very successful campaign by trans activists to lobby for change at all levels of society.

The major recommendations of the Cass report provide much-needed clarity about the extremely dynamic field of gender medicine. Cass recommends reorientating care for vulnerable young people away from medicalisation and towards less invasive methods, such as psychological interventions. She also cautions against social transitioning, as it is the first step in the gender-affirming pathway. Social transitioning is allowing the child to socially present themselves as the opposite sex by changing names, pronouns and appearance. The report recognises the need for proper exploration of children’s complex mental health concerns and acknowledges that many of those seeking treatment may simply end up as gay, lesbian or bisexual adults without a transgender identity if allowed to develop naturally. It emphasises the need for robust safeguards to protect and ensure children’s safety and emphasises that all treatment must be underpinned by a clear evidence base, preferably via systematic reviews (which provide the highest quality of medical evidence). Importantly, Cass highlights the distinct needs of children (and adults) who have de-transitioned — needs that are often neglected, denied or ignored.

The report’s main recommendation is that in the UK, care of youth with gender dysphoria who are less than 18 years old should no longer be based on the gender-affirming model of care but instead should be similar to care for youth with other developmental struggles, and use standard psychological and psychotherapeutic approaches. Any use of hormones should be regarded as experimental and therefore need to be provided in the context of a carefully monitored clinical trial. Further, the review noted that young adults between 18 to 25 years, are also vulnerable, and should be subject to many of the same limitations as the under 18s.

Adult gender clinics, as announced by UK health secretary Victoria Atkins, are now also in the spotlight. This was, in part, due to the concerns by the Cass review that the 18 to 25 year-olds (who access adult gender clinics) need similar protection from care and interventions that are not evidence-based. Additionally, whistle-blower complaints from adult clinics have highlighted concerns that vulnerable adults are not receiving proper evidence-based care. The refusal by all but one adult gender clinic to co-operate in the outcome analysis for the 9,000 patients, which were part of the Cass review, likely contributed to the decision to investigate the adult service.

Atkins also made a point of thanking the clinicians, academics, activists and journalists who raised the alarm. She acknowledged that many had “risked their careers” to do so. She told her fellow politicians that it should trouble each of them that the NHS “was overtaken by a culture of secrecy and ideology that was allowed to trump evidence and safety”.

The adoption of the Cass Review recommendations now aligns the UK with Sweden, Denmark and Finland, which centre standard psychological and psychotherapeutic care for these children and confine puberty blockers and cross-sex hormones to clinical trials.

The World Health Organisation has not yet produced international guidelines regarding gender-affirming care for either children or adolescents.

What is happening in South Africa?

Gender services and clinics exist in various metropolitan areas and are part of state funded referral and academic hospitals. These are mostly adult clinics, but there is a gender clinic for children at Red Cross hospital in Cape Town. Some adolescents who were started on puberty blockers at Red Cross hospital have been referred to Groote Schuur hospital to receive cross-sex hormones in their adolescent years. Gender-affirming care is also provided in the private sector.

The national department of health has not produced any guidelines or policies recommending gender-affirming care, however, for the past few years, this approach has been actively promoted by individual clinicians, the Professional Association for Transgender Health South Africa and some medical societies and institutions. The Southern African HIV Clinicians’ Society has published Gender Affirming Health Care guidelines for South Africa, with some activists and clinicians considering these to be national treatment standards. Articles have been published recommending gender-affirming care and talks given at conferences, universities and online have done the same. A common thread has been the recommendation that South African healthcare providers adopt gender-affirming health care, that it should be provided at a primary care level (including rural areas), that staff need to be trained to provide it, and that it should be taught at medical schools so that it will become part of mainstream medical care in South Africa.

A significant area of concern is that it has been difficult to have open debate about these issues in South Africa, as was the case in the UK, until recently. Where we and others have raised questions at meetings about the medical evidence supporting gender-affirming care of children, discussion is often shut down, and at times we’ve been accused of transphobia. Some clinicians have expressed fear that they may suffer personal or academic reprisals should they question gender-affirming care with their colleagues.

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 medicalising treatment approaches for children and adolescents with gender dysphoria find the humility and courage to change their practice? Will the medical societies who have promoted the gender-affirming model revise their position statements and support a less medicalised, more holistic management strategy?

There is an urgent need for South African clinicians, academics, medical organisations and societies to bravely step forward and provide sound guidance and leadership regarding the care of vulnerable children and adolescents with gender dysphoria. We sincerely hope that this issue will be engaged with honesty, courage and integrity so that vulnerable children are protected from being irreversibly harmed.

*The authors are all members of First Do No Harm Southern Africa, a voluntary association of South African health professionals who are advocating for evidence-based care of children and adolescents with gender distress. Giddy is a family physician, Donkin is a general practitioner and Rodseth is an associate professor, anaesthesiologist and critical care specialist.

This article was first published by Spotlight