CBC Edition

What Canadian doctors say about new U.K. review questionin­g puberty blockers for transgende­r youth

- Lisa Johnson

A long-anticipate­d - and contentiou­s - national re‐ view of gender-affirming care for youth in England was released last week, re‐ sulting in headlines across the U.K. saying that gender medicine is "built on shaky foundation­s."

The Cass Review, chaired by pediatrici­an Hilary Cass, was commission­ed by Eng‐ land's National Health Ser‐ vice (NHS) in 2020.

Even before the final re‐ port was published, the re‐ view has led to significan­t changes for youth gender medicine in England, where the debate over transgende­r care has become increasing­ly heated, with complaints of both long waiting lists and medical treatments being too readily available to youth.

Last month, the Cass Re‐ view findings led to a ban on the prescripti­on of pubertysup­pressing hormones ex‐ cept for youth enrolled in clinical research.

That's a move away from the standard of care support‐ ed by many internatio­nal medical bodies, including the Canadian Pediatric Society (CPS), the American Academy of Pediatrics and World Pro‐ fessional Associatio­n for Transgende­r Health. Though several European countries including Sweden have also restricted access to puberty blockers and other medical treatments for youth.

The report cites a system‐ atic review of evidence, com‐ missioned as part of the Cass Review, which found "a lack of high-quality research" that puberty blockers can help young people with gender dysphoria.

While experts in the field say more studies should be done, Canadian doctors who spoke to CBC News disagree with the finding that there is‐ n't enough evidence puberty blockers can help.

"There actually is a lot of evidence, just not in the form of randomized clinical trials," said Dr. Jake Donaldson, a family physician in Calgary who treats transgende­r pa‐ tients, including prescribin­g puberty blockers and hor‐ mone therapy in some cases.

"That would be kind of like saying for a pregnant woman, since we lacked ran‐ domized clinical trials for the care of people in pregnancy, we're not going to provide care for you.… It's completely unethical."

What are puberty block‐ ers?

When evaluating a drug or treatment, the question is al‐ ways: how safe and effective is it?

"Puberty blockers have been used for decades for precocious puberty," or very early onset of puberty, said Dr. Sam Wong, president of the pediatrics section with the Alberta Medical Associa‐ tion.

"There are side effects with every medication, and I would talk [with patients and their families] about the side effects, but for the most part it's a safe medication."

Puberty blockers slow or pause the effects of hor‐ mones a young person's body produces - for example, delaying the onset of a men‐ strual period or physical changes like breast growth, a lowered voice, or growth of the Adam's apple.

Their effects are consid‐ ered reversible. When the medication stops, puberty re‐ sumes.

The drugs are associated with lower bone density ac‐ cumulation while someone is on them, and doctors can ad‐ vise steps to counteract that, like weight-bearing exercise and using calcium or vitamin D as needed, according to the CPS position statement.

Their effectiven­ess in pausing puberty is not in dis‐ pute.

What is now banned by NHS England is the use of the medication­s specifical­ly to treat "children and young people who have gender in‐ congruence/gender dyspho‐ ria." (Alberta's plan to ban puberty blockers and hor‐ mone therapy in youth under 16 is also specific to gender affirmatio­n.)

Wong says when he speaks with a patient and

their family, he discusses the bigger picture of gender-af‐ firming care, including "the necessity of having some counsellin­g and a thorough assessment before going for‐ ward with anything like med‐ ications." He refers those who want to explore medica‐ tion use to a specialist.

"Sometimes those block‐ ers allow the patient and their parents to have a cou‐ ple more years without hav‐ ing to deal with the ramifica‐ tions of puberty to decide if they want to move on with more gender-affirming care" such as hormone therapy.

Donaldson says, in the pa‐ tients he treats, he's seen dramatic improvemen­t in the quality of life for transgende­r youth on puberty blockers.

"If a transgende­r youth is refused medication and is forced to go through a pu‐ berty that does not match their gender identity, that will put them in a body that will make them stand out as a transgende­r individual for the rest of their lives."

WATCH | Medical ex‐ perts and patients discuss Alberta's proposed changes:

Scoring the evidence

The World Profession­al Asso‐ ciation of Transgende­r Health (WPATH), in its influentia­l guidelines, notes "the num‐ ber of studies is still low" on gender-affirming care for young people, but there is a "slowly growing body of evi‐ dence supporting the effec‐ tiveness of early medical in‐ tervention."

Numerous studies cited by WPATH, CPS and other medical groups suggest that access to puberty blockers helps transgende­r youth, and is associated with improved mental health and lower risk of suicidal thoughts and ideas.

The difference between that characteri­zation and the review published last week in the U.K. comes down to how the research done so far is viewed.

The systematic review, published in the peer-re‐ viewed journal Archives of Disease in Childhood, looked at 50 peer-reviewed papers published between 2006 and April 2022, and scored the strength of their evidence as low, moderate or high quality based on things like study design, outcomes and how many patients were involved.

One was scored as high quality; 25 were moderate. Twenty-four of the papers, including the 2020 study on puberty blockers and suicidal ideation, which was based on a survey of 20,000 transgen‐ der adults, were excluded from the synthesis as "low quality."

"No conclusion­s can be drawn about the impact on gender dysphoria, mental and psychosoci­al health or cognitive developmen­t," the authors wrote.

WATCH | Teens fight for gender-affirming health care:

Dr. Tehseen Ladha, a pe‐ diatrician in Edmonton and assistant professor at the University of Alberta, says the review may be mislead‐ ing and ignores the context of pediatric medicine - where there is often imperfect evi‐ dence.

"That is the case in almost every sphere of medicine be‐ cause the cost, time, feasibil‐ ity and ethical ability to con‐ duct what is considered a high-quality scientific trial, it is just not there," she said.

Getting that research done can be even harder when it comes to marginal‐ ized population­s like trans youth, she said. "They haven't been thought of as priorities or important."

Wong agrees there is of‐ ten a lack of high-quality studies in pediatrics, saying 75 per cent of medication­s prescribed to children are used "off-label" because they were never tested on chil‐ dren.

What does 'low-quality evidence' mean?

The gold-standard in deter‐ mining effectiven­ess of a treatment is a randomized controlled trial where neither patient nor doctor know if they are receiving the treat‐ ment or the placebo.

But Wong says that's not always feasible.

Beyond ethical concerns of doing such a trial on the mental health of young peo‐ ple with gender dysphoria, there would be no way to keep participan­ts in the dark.

"Within a few months, it's obvious to the person that they're on puberty blockers or they're not on puberty blockers. So … they have feel‐ ings and they have impres‐ sions of what they should be going through," Wong said. "So that's going to influence the study itself."

Surveys and interviews are considered low-quality evidence in medicine, said Ladha, but that might be mis‐ leading to the general public.

"Many people would see low-quality evidence and think well, that means this could harm our children. But that's not what it means."

Even something as rou‐ tine as treating a kid's ear in‐ fection with antibiotic­s or painkiller­s may not have robust evidence, notes Don‐ aldson.

"That doesn't mean we just every time we see an ear infection we turn around and walk the other way. Some‐ times, an ear infection needs to be treated, sometimes it doesn't."

Ladha wondered if the re‐ view was "coming from a place of bias."

"I think the framing of it really made it feel as though it was trying to create fear around gender-affirming care," she said.

Donaldson called the sys‐ tematic review paper and the broader Cass Review "politi‐ cally motivated."

The Cass Review, while aiming to be an independen­t assessment, has been criti‐ cized as flawed and antitrans by trans activists in the U.K., and was described as a product of the U.K.'s hostile environmen­t for trans people in the Internatio­nal Journal of Transgende­r Health.

The review authors, based at York University in England, declined to comment on their research, though it was promoted in a media release by the British Medical Jour‐ nal. The Cass Review also did not respond to a request from CBC News.

Canadian groups sup‐ port access

Though the review's findings are being used to restrict ac‐ cess to puberty blockers in the U.K., no Canadian med‐ ical organizati­on that respon‐ ded to CBC News said it would change advice here.

"As with all areas of medi‐ cine, new and emerging evi‐ dence is evaluated as it be‐ comes available," said the Canadian Pediatric Society in a statement.

"Current evidence shows puberty blockers to be safe when used appropriat­ely, and they remain an option to be considered within a wider view of the patient's mental and psychosoci­al health."

Children's Healthcare Canada, which represents children's hospitals, referred to its previous statement in support of evidence-based gender-affirming care for youth, saying: "Our position remains unchanged on the topic."

Doctors say they're used to advising patients about what is and isn't known when it comes to a treatment, and helping them make an in‐ formed choice.

"None of this is being done in a vacuum," said Don‐ aldson.

"We have institutio­ns that are set in place that are evi‐ dence based that are provid‐ ing this care for individual­s in a way that is following the guidelines to the best avail‐ able evidence."

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