Sweden transitions to caution
Sweden transitions to caution
The gender clinic refrain of low rates of regret is coming under challenge
Swedish health authorities have urged “restraint” in the use of hormonal drug treatments for medicalised gender change, warning that the risks appear to outweigh the benefits.
Updated advice from Sweden’s National Board of Health and Welfare (NBHW), which has in the past championed “gender affirming” medical interventions as “safe and secure”, says puberty blockers and cross-sex hormones should only be given in “exceptional” cases outside research studies.
There has been an international spike in teenagers, disproportionately natal females, declaring a transgender identity, seeking blocker drugs to stop unwanted puberty, followed by cross-sex hormones and sometimes surgery to mimic the opposite-sex body.
The Swedish NBHW’s recommendations shift the emphasis from medical intervention to psychiatric assessment and psychosocial support for children and adolescents who present with gender dysphoria, a distressing sense of conflict between biological sex and an inner “gender identity”.
The international Society for Evidence Based Gender Medicine, which has raised concerns about the welfare of young people undergoing medical transition with no high-quality data on outcomes, welcomes the NBHW’s new cautious stance.
“The update to the Swedish treatment guidelines represents an impressive step toward safeguarding the growing numbers of gender dysphoric youth from medical harm arising from inappropriate gender transition,” a SEGM spokeswoman said.
“SEGM hopes that other countries follow Sweden’s example, independently examining the body of evidence and issuing evidence-based guidelines for medical care that respects young people’s dignity, provides relief from suffering, safeguards them from medical harm, and ultimately prioritises long-term mental and physical health.”
American psychologist Dr Erica Anderson, a gender affirming clinician who has raised concerns about rushed medicalisation in the United States, said the rest of the world should pay careful attention to the health policy shift in Sweden, which she characterises as “a progressive country known to be supportive of transgender persons”.
“Sweden has taken a bold move in rolling back the routine use of puberty blockers and hormones for transgender youth,” Dr Anderson told GCN.
She says Swedish authorities have “wisely placed priority upon psychological evaluation”, especially for young people who had “showed no signs of gender questioning prior to puberty”.
“Sweden's emphasis upon psychological evaluation and exploratory supportive psychotherapy is consistent with the World Professional Association for Transgender Health standard of care advising individualised comprehensive biopsychosocial evaluation prior to the initiation of gender affirming medicines for youth.”
The Swedish NBHW’s new caution represents a “complete U-turn”, according to Sweden’s public broadcaster SVT.
The NBHW did not hide its displeasure last May when management of the Astrid Lindgren Children’s Hospital, part of the prestigious Karolinska medical university, took the initiative and declared an end to blockers and hormones as routine treatments for minors, limiting them to strictly controlled clinical trials. The hospital cited lack of scientific support for these interventions and the risk of side effects.
The Karolinska youth gender clinic at the Astrid Lindgren hospital in Stockholm was Sweden’s biggest, and there was disagreement and uncertainty among the country’s five other clinics on whether or not to follow its cautious example.
The new advice from the NBHW is intended to foster a consistent national approach. Sweden’s six youth gender clinics are expected to be merged into three centres in order to concentrate multi-disciplinary expertise.
In updating its 2015 advice on youth gender dysphoria, the NBHW gives special emphasis to the emerging group of young people who “detransition” after medicalised gender change, re-embrace their biological sex, and in some cases go public with warnings about lax gender clinic practices.
The NBHW suggests the reassuringly low rates of regret claimed by gender clinics — often said to be below 1 per cent — may understate the scale of this trend.
Drawing on an independent expert review, the NBHW says the claim of low regret “no longer stands unchallenged”, and cites the 2021 detransitioners study by public health researcher Dr Lisa Littman, in which only 24 per cent of her 100-strong sample went back to their gender clinic to report their regret.
“For those who regret or discontinue treatment, there may be a risk that the treatment has led to poorer health or quality of life,” Dr Thomas Lindén, head of department at the NBHW, told the journal of the Swedish Medical Association.
The independent review, carried out for the NBHW by the Swedish Agency for Medical and Social Evaluation (SBU), says the evidence base for youth gender dysphoria is insufficient to draw firm conclusions about the safety and effects of puberty blockers and cross-sex hormones.
Seven years after the NBHW’s confident 2015 advice, it is still unclear what effect these hormonal drug treatments have on gender dysphoria, brain development, psychosocial outcomes, bone density or metabolism, the SBU concluded.
The SBU says there are still no randomised trials which, although difficult to do, would allow clear conclusions about whether or not these treatments bring benefits or inflict medical harm.
The SBU review adds to the growing body of literature surveys confirming that gender clinics operate with an evidence base low in quality, short-term, with gaps and subject to bias.
In November last year, the flagship investigative journalism program of Sweden’s public broadcaster SVT reported that young patients and their families were not being properly informed about the risks of puberty blocker drugs.
The Mission: Investigate program quoted a senior Karolinska clinician, paediatric endocrinologist Dr Ricard Nergårdh, describing puberty blockers as “chemical castration”.
He said these hormone suppression drugs, which are also used to lower the testosterone of sex offenders, could have unintended and undesirable effects on mental health, and this ought to be explained to patients and their families.
Asked how long was too long to be on puberty blockers, Dr Nergårdh said this was unknown, although international guidance suggested no more than two years.
The SVT program featured data showing that young people at the Karolinska gender clinic were often on blockers for more than three years.
Mission: Investigate claimed that at least 13 minors had suffered serious side effects and injuries — including osteoporosis, suspected liver damage and poor mental health — after puberty blocker treatment at the Karolinska clinic within the Astrid Lindgren Children’s Hospital.
A failure by the hospital to follow up these poor outcomes was attributed to a division of responsibilities between two departments.
The three-stage treatment of puberty blockers, cross-sex hormones and surgery is known as the Dutch protocol. It was developed by the Amsterdam gender dysphoria clinic in the 1990s but later applied internationally as a different patient profile emerged and rapidly increased in case numbers.
Last March, leading Dutch psychologist Dr Thomas Steensma said overseas clinics had “blindly adopted” Dutch protocol treatments without doing their own research.
The Amsterdam clinic had a reputation for careful selection of patients for medical gender change, and reported psychological benefits and low rates of regret (although these Dutch studies are open to more sceptical interpretation).
The Amsterdam clinic reportedly limited treatment to young people with classic gender dysphoria going back to early childhood, and screened out patients with serious mental health issues.
Since 2000, however, there has been a surprising switch in patient profile from the Dutch era of typically male, early-onset cases of dysphoria to disproportionately female adolescent-onset cases.
Today’s gender clinic caseloads around the developed world reportedly include many young patients with severe psychiatric problems, autism, same-sex attraction, and a history of family trauma and abuse.
There is no robust, long-term data on this new patient group, and it is unclear whether they can expect the benefits and low regret rates claimed by the Amsterdam clinic.
Dr Anderson, a former president of the US Professional Association for Transgender Health and a trans woman, says Sweden’s new, “cautious approach aligns with the methodical approach historically taken by the Dutch and others, and the research protocols yielding the reported positive outcomes for youth so treated”.
She says “the deleterious effects of social isolation during the pandemic, over-reliance upon social media and willingness of some [clinicians] to forgo individualised evaluation have meant, in my opinion, that some youth have been rushed onto medicines”.
“For some, this may be premature or even inappropriate. For others, it raises the prospect of a larger proportion of future detransitioners/desisters.” (A desister is someone who abandons a trans identity before undergoing any medical intervention.)
Pending more robust research, the Swedish NBHW says clinics may give blockers and hormones in “exceptional cases”, but should follow the original Dutch protocol.
On Twitter, the SEGM said: “Sweden is realigning with the classic Dutch protocol model, where only early childhood-onset gender dysphoria cases will be considered for hormones and surgeries.
“Those with post-puberty onset of trans identity will not be candidates for hormones/surgeries as minors.”
At odds with Dr Anderson, the SEGM says the new Swedish recommendations are “a major departure from the WPATH standards of care” — for example, the NBHW advice is more restrictive in allowing access to hormonal interventions.
The SEGM says Sweden’s cautious turn is “a vital step towards safeguarding vulnerable youth from medical harm”.
Sweden’s NBHW has also thought better of its 2015 extension of the Dutch protocol medical interventions to young people who identify as “non-binary”.
At odds with activists campaigning for treatment on demand, the NBHW says it “continues to believe that gender dysphoria rather than gender identity should guide access to care and treatment”.
The NBHW’s 2022 advice says evidence justifying the use of Dutch protocol treatments with non-binary patients is “lacking”, and notes that the Amsterdam clinic only transitioned young patients with a “binary, cross-gender identity”.
Grey areas in the new Swedish advice, which deals with a politicised area of health subject to trans activist pressure and tension between clinicians and managers, include —
what exactly qualifies as an “exceptional case” for medical treatment
the likely methodological rigour and ethical basis of future research involving medicalised gender change with minors
how psychosocial support can be delivered at scale
the degree to which the NBHW’s more cautious approach will make a practical difference in how clinicians operate.
Anecdotal reports suggest that some clinicians simply ignore guidelines, viewing them as “gatekeeping” that frustrates access to treatment as a trans “human right”.
Thank you so much for this article!
The Dutch protocol only evaluated the young people a year or two after the last surgery. Regret and detransition studies have found median or average times to regret to be much longer (4-5-9 or 10 years, Vandenbussche, 2021, Littman, 2021, Dhejne, 2014, Wiepjes, 2018).
(The last two quote a regret rate, however Dhejne 2014 had a very different cohort and process older, and Wiepjes 2018 loses 36% to follow up.)
So one doesn't know how many have regretted with the Dutch protocol, either.
Given the different presentation (at or after puberty, but still developmentally immature) and the explosion in cases for both natal sexes, it's really good that countries are taking a closer look, it can't happen soon enough in the rest of the world!
The phrase "unwanted puberty" made me think. Previously there wasn't an alternative to puberty for those disturbed by it (except maybe severe anorexia). Is it thought this is a factor in the epidemic of gender change?