April 23, 2021 -- One step led to another. That is the message from Keira Bell, a 24-year-old British woman who lives daily with the regret of transitioning to male gender in her teens. She received puberty blockers after just a few appointments at a gender clinic, and later injected testosterone. By age 20, she had undergone a double mastectomy.
On Dec. 1, 2020, Bell won a lawsuit against the Gender Identity Development Service of the Tavistock and Portman National Health Service Foundation Trust. Bell claimed doctors should have challenged her more about the decision to transition before starting medical treatment. GIDS is the only institution that treats people under 18 with gender dysphoria as part of England’s national health service.
In short, the High Court ruled that people under age 16 with gender dysphoria — people whose sex at birth is contrary to the gender they identify with — cannot give informed consent for treatment with puberty blockers, drugs that aim to halt normal puberty.
The decision also encouraged docors to seek court approval before treating any gender dysphoric person under age 18 with 'affirmative' medical therapy (ie, puberty blockers and cross-sex hormones, such as testosterone, to transition to male or estrogen to transition to female) if there is any chance that the patient might not fully understand the long-term implications of therapy.
This 36-page High Court ruling has upended the affirmative medical treatment model for adolescents with gender dysphoria in the U.K. The decision is currently being appealed.
Arrested Development: A One-Way Path?
GIDS performed a study that showed no changes in quality of life, psychological function, or degree of gender dysphoria in 44 children who took puberty blockers for up to 3 years The study also showed adverse effects of the treatment: suppression of bone mineral density and growth. And almost 100% of kids taking these agents continued to transition, contradicting GIDS' claims that puberty blockers function as a 'pause' button to give children more time to consider their options. Rather, the findings suggest that the kids were effectively on a one-way path to transitioning medically.
The next step is taking cross-sex hormones, which are associated with several irreversible changes, including deepening of the voice, facial hair, clitoral growth in girls taking testosterone, and possible infertility and sexual dysfunction in both girls and boys. Long-term adverse effects include osteoporosis, blood clots, heart disease, and cancer, among others.
Many will then look to surgeries — as did Keira Bell — particularly the euphemistically termed 'top' surgery, which means a double mastectomy for a female transitioning to male, or breast augmentation for males transitioning to female. In the U.K., such surgeries are reserved for people over 18, but in the U.S., double mastectomies have been performed on children as young as 13 years old.
"I was an unhappy girl who needed help. Instead, I was treated like an experiment," says Bell, telling her story on the website Persuasion. "As I matured, I recognized that gender dysphoria was a symptom of my overall misery, not its cause. Five years after beginning my medical transition to becoming male, I began the process of de-transitioning. The consequences of what happened to me have been profound: possible infertility, loss of my breasts and inability to breastfeed, atrophied genitals, a permanently changed voice, facial hair."
Bell's victory in the U.K. High Court is considered a landmark decision, and along with moves in some other European countries, it signals that the tide may be starting to turn when it comes to how a minor with gender issues can be treated by the medical profession.
A New Kind of Patient
Will Malone, MD, is an assistant professor of endocrinology practicing in Twin Falls, ID, who says there is little evidence to support hormonal interventions for people under 18 with gender dysphoria. In 2020, Malone was one of several doctors and researchers who formed the Society for Evidence-Based Gender Medicine (SEGM), a not-for-profit organization that now has at least 100 physician members.
Malone told Medscape that he first became interested in this issue because he started receiving calls from primary care doctors who said they were seeing teenage girls who were identifying as male, often clustered in groups. "Some girls were very distressed. Some were asking for hormones, some not. The primary care docs wanted to know what to do."
This phenomenon, Malone says, was very different from any gender dysphoria he had learned about in medical school or training, which was primarily in mature adult males who wanted to change sex or was the classical childhood-onset gender dysphoria where young children (mainly boys) reported feeling trapped in the wrong body.
The vast majority of youth now presenting with gender dysphoriaare adolescents who suddenly express revulsion with their sex from birth, and 70% of them were born female. Many of them have anxiety, attention deficit hyperactivity disorder, autism spectrum traits, and depression, Malone explains, which need to be considered.
This newer diagnoses— which has been termed late-, adolescent-, or rapid-onset gender dysphoria — has now been seen in every gender clinic in the western world, and there has been a huge surge in the number of cases. One recent U.S. survey found a 4000% increase since 2006, and there have been similar large increases in Finland, Norway, the Netherlands, Canada, and Australia.
The London GIDS clinic has seen a 30-fold increase in referrals over the past decade – and again they were primarily adolescent girls who said they now identify as boys.. Malone says there is no credible scientific explanation for why there has been such a big swing from predominantly males to predominantly females experiencing gender dysphoria, and around the time of — or just after — puberty onset.
Sabine Hannema, MD, of the Department of Pediatric Endocrinology, Sophia Children's Hospital in Rotterdam, the Netherlands, treats transgender children. She told Medscape that the number of referrals has indeed increased in the last decade, and that the ratio of children she sees has changed, with relatively more trans-boys (assigned female at birth) in recent years.
Stephen Rosenthal, MD, a pediatric endocrinologist at University of California, San Francisco, also treats transgender youth. He said he believes the concept of late-onset is a parental notion. "From our experience in clinical practice, what seems like … rapid-onset from the perspective of the parents — because they are only just hearing about it — might not be [out] of the blue but something the child has lived with for some time — but only revealed during adolescence."
Nevertheless, he acknowledges that there's a lot more that needs to be known.
Is Social Contagion Playing a Role?
There have been numerous reports in the press of clusters of adolescent girls, often in schools, claiming they are now transgender. Many involved in the care of these children are increasingly concerned about the possible role of social contagion in the genesis and propagation of this phenomenon.
Hannema says she is aware of the concern that through exposure to certain media, some children might erroneously believe that their nonspecific emotional or bodily distress is a result of being transgender.
"The implied outcome is that such individuals will then access gender-related medical interventions, and eventually come to regret these once they realize that they are in fact not transgender," Hannema observes. However, she counters that rates of regret have historically been very low.
Joshua Safer, MD, of Mount Sinai Hospital, New York City, is a spokesperson on transgender issues for the Endocrine Society and says the treatment of transgender youth is already conservative.
"We don't do any medical treatment on anybody before puberty. For most of the kids that we're talking about in these mid-teenage years, we're using a very conservative approach, which is puberty blockers…because those are essentially reversible."
"The approach has been used for a long period of time with…precocious puberty, so we do have data from adults who were treated years ago with these regimens. Our confidence about their safety is quite high," he adds.
Yet there is no doubt that more and more people — from the worlds of psychiatry, psychology, and endocrinology, as well as parents of children with gender dysphoria — are increasingly going public with their concerns about how swiftly medical treatment can be administered in some countries, with often minimal psychological counseling beforehand.
Little Research on Those Who Regret Transitioning
Despite the claims of low rates of regret from doctors who treat transgender youth, there is evidence of a growing number of "de-transitioners" — typically twenty-somethings who have had medical interventions and, in many cases, gender-reassignment surgery who now bitterly regret their decision. It is difficult to pinpoint the exact number of those who will come to regret their transition, as there has been no formal research into this, but many argue that this in itself is a strong rationale for pressing the pause button on this practice of "affirmative" medical therapy, particularly in those under 18.
James Caspian is a British psychotherapist experienced in counseling transgender adults. He told Medscape in 2019 that he first became interested in this topic when a gender-reassignment surgeon he knew from Serbia told him he had patients coming back, requesting to have their transition surgery 'reversed.' At first, it was a trickle of patients, but as Caspian explains in a recent podcast, that surgeon has now reported more than 70 'regretting' patients at his one practice alone.
Asked about those individuals who may regret transitioning, Safer told Medscape: "It's absolutely true that you can find individuals who regret their choice."
However, he qualifies, "the data do not seem to suggest that the majority of those people say their gender identity is necessarily any different; it's more that they regret the medical treatments for various reasons. Among them, it's the lack of acceptance by society that is their largest reason for regretting their decision."
And he maintains that those who regret their decision are less than 1% of those treated. "I can speak to my specific experience," he says when pressed to cite published research for this figure. "I've taken care of hundreds of transgender people and I have single digit numbers [of those] who have regretted medical treatment, so that's where my number for under 1% [comes from]."
Transgender Adults Are Sounding an Alarm
Many transgender adults are also sounding the alarm because they know the burden of lifelong hormone treatment and the many complications associated with gender-affirming surgeries.
In the U.K., the dialogue has now reached a critical turning point since Keira Bell's victory in court, and mainstream media are now openly covering all sides of the discussion. And although the conversation in the U.S. is markedly different, there are some signals that this may be about to shift.
Last year, Wall Street Journal contributor Abigail Shrier's book Irreversible Damage: Teenage Girls and the Transgender Craze created a furor when it was first published. The Economist listed it as one of its "Books of 2020."
Explaining why she set out to investigate this phenomenon in an article for the Daily Mail, Shrier says she became "haunted" by one question: What's ailing these girls? "Their distress is real, but their self-diagnosis is flawed — more the result of encouragement and suggestion than psychological necessity," she writes.
"Many adolescent girls identifying as transgender don't actually want to become men. They simply want to flee womanhood like a house on fire, their minds fixed on escape, not on any particular destination. They feel alienated from their bodies and the changes brought by puberty: acne, periods and breast development, and uncomfortable attention from men….This is a story Americans need to hear."
Some therapists Shrier interviewed believe that these girls are actually experiencing a type of 'body dysmorphia' not unlike anorexia nervosa, and others are concerned that they are repressed lesbians, and that an internal kind of 'homophobia' is fueling their desire to be male.
Malone, the Idaho endocrinologist, says that Shrier — who interviewed over 200 people, including doctors, psychotherapists, parents, de-transitioners, transgender 'influencers,' and trans adults — has penned "a meticulously researched and much-needed book."
Asked by Medscape what he thinks about Shrier's book, Mount Sinai endocrinologist Safer says it is "entirely based on the perspective of fearful parents worrying that their kids are being brainwashed."
Guidelines Based on One Study
Safer serves on the Standards of Care revision committee for the World Professional Association for Transgender Health. The group’s most recent standards of care issued in 2012, says, "Adolescents may be eligible to begin feminizing/masculinizing hormone therapy, preferably with parental consent. In many countries, 16-year-olds are legal adults for medical decision-making and do not require parental consent." They add: "Hormone therapy should be provided only to those who are legally able to provide informed consent. This includes people who have been declared by a court to be emancipated minors."
Safe is also a co-author of the Endocrine Society's 2017 guidelines for treating youth confused about their gender. These guidelines were formally presented at the annual meeting of the Endocrine Society in March 2018.
Malone was there.
"At this conference, the Endocrine Society — a highly respected organization — rolled out a set of guidelines for kids that essentially said, 'Your job as endocrinologists is to medically affirm [gender dysphoric] adolescents with puberty blockers and cross-sex hormones,'" he tells Medscape.
Malone says he was astounded when he first heard the guidelines, but immediately assumed, "There must have been a massive change in the landscape, some landmark study that I missed somehow. But the evidence simply wasn't there, he says.
Debate Is Most Polarized in the U.S.
The debate about how best to treat transgender minors is probably more polarized in the United States than just about anywhere elsewhere in the world.
Arkansas has just passed a law, due to take effect in July, banning certain types of treatment for transgender youth, which threatens loss of license to any health care professional who provides puberty blockers, cross-sex hormones, or gender-affirming surgery to minors, and opens them up to lawsuits from patients who later regret their procedures. At least 16 other U.S. states are considering similar legislation.
In contrast, parents trying to obtain psychological help for children before proceeding to hormonal treatment can often only find therapists who 'affirm' their child's transgender identity and recommend they start puberty blockers or cross-sex hormones.
Safer told Medscape, however, that except for Arkansas (once the ban is enacted), the standard of care for a child who has gender dysphoria does not differ among states.
"The establishment approach is that the kid would come in and would have a mental health intake and there would be sober conversations. If they are prepubescent, there is no intervention. If they are mid-teenage, then the intervention, if there is an intervention, would be puberty blockers, which are reversible. So, it's very conservative, actually," he says.
Asked about Malone, SEGM, and their concerns about rushed affirmation of transgender youth, Safer says, "This is a relatively small group that has been making the same arguments for a number of years, and they are very much outside the mainstream. It's not that there's a debate within organized medicine, where there are equal numbers of people on both sides. Dr. Malone is outside of those arguments; [he is] not in the mainstream."
Safer also advises against "confusing conservative conclusions from our existing literature with absence of data."
Cognitive Maturity Not Reached Until Age 25
An often-cited claim of proponents of affirmative medical therapy for gender dysphoria is that these kids have high rates of suicidal ideation and restricting their access to hormonal therapies (and surgery) would endanger them.
"The data are that if you are not supportive of the children, that is a source for greater mental health problems," says Safer. "And if you are supportive, the data are that you will have fewer mental health problems, so the strategy is to be supportive, or 'affirming.' That is the standard of care within the medical community."
But there is also little concrete evidence that transitioning improves mental health. And because the concept of late-onset gender dysphoria is relatively new, there are very few studies on this specific patient group.
Doctors Become Skeptical, Develop Ethical Stress
Many who support and practice the affirmative medical treatment of transgender children have accused those who argue against this stance of being "armchair critics," saying that until you have one of these distressed kids "in front of you," you can't begin to understand what will be best for them.
However, several doctors who have been treating these children are themselves now starting to express regret.
Angela Sämfjord, MD, child and adolescent psychiatrist at Sahlgrenska University Hospital in Gothenburg, Sweden, started a child and adolescent clinic — the Lundstrom Gender Clinic — in 2016. Two years later, she resigned because of her own fears about the lack of evidence for hormonal and surgical treatments.
She tells Medscape: "There's a lot of tension between some approaches of gender clinics and the trans community. Patients found it hard to accept that they needed to undergo a full mental health assessment before being referred for medical treatment. Parents would say that nobody ever discussed that other issues…might be implicated in the child's dysphoria."
The referred adolescents had many psychiatric symptoms, says Sämfjord, and she realized that gender dysphoria was just one part of a complex problem. She also noticed that the psychiatric symptoms came first, followed by gender dysphoria upon reaching adolescence.
"[I] felt that we could not separate these things. Concentrating only on the gender dysphoria meant we might miss other things," she tells Medscape. Among her patients, 90% had another psychiatric diagnoses in addition to gender dysphoria; 80% had two or more. Depression and anxiety were most common, and 20% had a diagnosis of autism on arrival at the clinic; around 50% had symptoms of autism.
"When I realized the complexity [of these cases]…and that health care professionals are still expected to okay gender-affirming treatment despite the lack of evidence that we currently have, it preyed on my conscience," she told the Trans Train 2 documentary in autumn 2019.
"I wasn't prepared to take the risk, as a doctor, of causing these patients harm. I took the consequences of this and resigned," Sämfjord says.
‘Perfect Storm’ of Inappropriate Transitions
As evidenced by the doctors who were interviewed for the Swedish Trans Train documentaries, some Scandinavian countries have also started to put the topic of gender dysphoria in children — and the best treatment for them — under the microscope.
In 2020, Finland became the first country in the world to issue new guidelines for this group of patients when it concluded that there is a lack of quality evidence to support the use of hormonal interventions in adolescents with gender dysphoria.
This new Finnish guidance supports psychological therapy over treatment with hormones or surgery and suggests different care plans for early-onset vs late-onset childhood gender dysphoria.
Malone stresses that in terms of prioritizing psychological assessment, the U.S. (and to a similar extent Canada and Australia) currently trail behind the U.K. and Finland.
But he is thankful that in the U.K. and elsewhere, doctors "are much more skeptical of guidelines [than we are in the U.S.], and this is music to my ears."
"There is far less attention paid to psychological evaluation and treatment in the U.S. compared with the U.K.," says Malone. "There is also a far more aggressive timeline for the provision of puberty blockers and hormones, such that we have created the perfect storm of inappropriate transitions.
"The case of Keira Bell was avoidable. Clinicians should know that if you intervene without good supporting evidence, there is a good chance people will be harmed. As more people come forward, more people will realize…that's what's occurring. The question is, 'What is the burden of harm that has to happen before people start to take notice?' "