This is a guest contribution for The Economists Open Future initiative, which aims to foster a global conversation on the challenges of the 21st century. More Open Future articles are at Economist.com/openfuture
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The day I knew I should quit my job answering phones at the transgender health-care clinic in California was the day a caller (lets use the name Betty) threatened her in-home caretaker with a knife during the call. As the caretaker begged our clinics nurse to track down Bettys doctor and tell him that Betty was having a psychotic episode, Betty stood between her and the apartments front door with a kitchen knife. Betty had poorly controlled paranoid schizophrenia, and often called the clinic agitated, alternately whispering and screaming about government agents stalking her. Betty was also a trans woman whom most people regarded as male, the sex of her birth.
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The clinic followed the informed-consent protocol: its mission was to provide transgender patients who otherwise lacked access to health care with injections, skin patches and pills of feminising or masculinising hormones without having to pass through a series of requirements and assessmentsknown as gatekeepingthat restricted access in the past.
In medicine broadly, informed-consent refers to the ethical requirement that a clinician administering a treatment communicate to the patient the anticipated risks and benefits, as well as reasonable alternatives to the treatment. Yet for transition medicine in America, informed-consent programmes do not require clinical documentation, beyond patient reports, of the patients gender dysphoria over time (ie, a feeling of mismatch between ones biological sex and gender identity) and readiness for medical interventions.
Gatekeeping horror stories are notorious in the transgender community. In the past it was not unusual for a trans person to be told by doctors and psychologists they would not be referred for hormones because they were not visually appealing as their preferred gender, werent interested in dating the opposite gender, or had unresolved mental-health problems (some of which are predictable responses to experiencing transphobia, such as anxiety and depression).
It was not unusual for a trans person to be told they would not be referred for hormones because they were not visually appealing
Pioneering LGBT health centres across America developed informed-consent protocols for hormone treatment in a well-intentioned effort to imbue the experience of pursuing hormone treatment with dignity for patients. But as informed-consent protocols have become the norm rather than the exception, we may be shunting transgender people in America into a parallel medical systemone in which patients bargain away careful assessment and education for greater autonomy and shortened timelines to access medical treatments.
At my clinic, we were informed-consent true-believers. We didnt badger you with questions; as long as you were 18, even if you had no way to pay the clinics fees, you would get your hormones. You had to sign forms stating that you understood that although hormone-replacement therapy (HRT) benefits many trans people suffering from gender dysphoria, the health risks are largely unknown. Starting hormones could have negative consequences for your mental well-being, social functioning and even the intensity of your gender dysphoria (many people find that their distress about a body part like their breasts will only increase when the effects of testosterone appear, such as facial hair).
Also, people were informed that they were waiving the mental-health screening recommended by the World Professional Association for Transgender Health. Its standard of care recommends that patients seeking HRT be screened for schizotypal disorders, autism-spectrum disorders, personality disorders, dissociative disorders, post-traumatic stress disorders and more.
In the case of Betty, I felt that the clinic where I worked wasnt sufficiently concerned whether her mental disorder created delusions that often controlled her life, or meant she was so cognitively disabled that transition predictably left her more isolated and chronically stressed than before she started HRT. The medical staffs attitude towards Betty and many of the other patients who were receiving hormones while managing (or failing to manage) severe mental illness was a profound lack of interest about whether one affected the other.
We were informed-consent true-believers. We didnt badger you with questions; as long as you were 18, you would get your hormones.
In fact, most of us worked there because we rejected the idea that a strongly felt internal sense of gender could be a symptom of mental illness. That shared, ideological foundation meant it was verboten for the staff to consider whether the HRT might be exacerbating Bettys schizophrenic symptoms or making it harder for her to build the basic social relationships that provide the support and positive feedback that is so necessary for mental health. If the HRT did not actually assist Betty in presenting as a woman or improve her functioningand it seemed to be doing neitherwe considered affirming her identity more important than those conventional measures of the treatments effectiveness.
The most radical and liberatory action we could take was to affirm Bettys identity. If we were the one and only place she visited in her day where she was referred to using her chosen pronouns, we considered it paramount we gave her that experience. This commitment to affirming identity through correct pronouns and easy HRT was our reason for being. But strangely, by fulfilling our commitment to affirming felt identity, we seemed to be off the hook for questioning whether we were doing all we could to avoid harming her.
I quit the clinic in 2014, and in 2016 I spoke to the lawyer of a patient suing that same clinic. This patient also pursued HRT while experiencing intense delusional symptomsit was 2012 and he thought the world was ending. The clinic, affirming as ever, recommended and provided the referral letters for him to have an orchiectomy, a removal of his testicles, which he underwent. When his delusional symptoms eventually abated he detransitioned, coming to an uneasy peace being, and presenting as, male.
I know him because we are both detransitioned people. I was also convinced that I was a trans personas a result of misunderstanding a persistent sense that my body felt unreal, a common dissociative symptom following traumaand received HRT at this same clinic, taking testosterone for nine months. For the past five years Ive been a part of a growing community of detransitioned people who are speaking out about questionable norms and practices in transgender medicine.
The clinic, affirming as ever, provided the referral letters for him to have an orchiectomy, a removal of his testicles
When I first detransitioned, my community consisted of online groups of fewer than 100 women. Five years later the detransition discussion-forum on the popular site Reddit has just hit 7,000 people of both sexes. I know detransitioned people who later discovered they had autism-spectrum disorders, detransitioned people who came to recognise that they were experiencing traumatic dissociation, even detransitioned people who had such severe dissociation that they had multiple alters (ie, multiple identities) while being treated with hormones and surgeries.
Our stories, if taken seriously, could help improve the state of transgender health careparticularly at informed-consent clinics, which are becoming the norm at American colleges, LGBT health centres and recently many Planned Parenthoods. Instead we are ignored, compared to ex-gay Christians or treated as political footballs. (I was particularly disheartened when Ryan Anderson, a fellow at the Heritage Foundation, a conservative think-tank, used my and other detransitioners stories in his book that was critical of LGBT and feminist issues, When Harry Became Sally.)
That is because the burgeoning orthodoxy on the left is that detransition is so rare that only transphobes care about it. If you draw attention to the stories of transition gone wrong, the thinking goes, there will be less public support for transition and for transgender people themselves. For academic researchers and journalists, telling our stories is a fast track to being labelled a transphobe. This has profound consequences for what we know about the medical paths that leads to detransition.
In fact, we have no idea how prevalent detransition is in America. The most widely used estimate, that 2.2% of people who transition later detransition, comes from a study in a completely different place (Sweden) and time (1960-2010), when gatekeeping was much stricter. Moreover, that study defined a detransitioner as someone who had changed their name and gender legally (an arduous process in Sweden at the time) and then had the motivation and money to go through the name change process in reverse, a standard so strict that I wouldnt be counted, and nor would 90% of the detransitioners I know.
If you draw attention to the stories of transition gone wrong, the thinking goes, there will be less public support for transgender people
This passionate but misguided argumentthat detransition is extremely rare, thus any research into it is harmful and motivated by transphobiahas led to outright censorship. In 2017 Bath Spa University in Britain shot down a research proposal that sought simply to collect stories from detransitioners. The same year the Philadelphia Trans Health Conference, a major annual gathering of the transgender health community, abruptly cancelled two previously approved panels that I had helped organise on detransition and alternative methods of managing gender dysphoria, because of the level of heated conversation and controversy. These were just two out of nearly 200 sessions.
As a result, the subject of detransitioners health-care experiences remains virtually untouched by academic researchers. This shows in the clumsy approaches of those few researchers willing to engage the subject. For example, a poster presented this summer at the European Professional Association of Transgender Health conference purported to show a very low rate of detransition and regret (0.47%) at an NHS clinic in London. The poster bounced all over social media, cited as proof that detransition is indeed exceptionally rare.
But that estimate was generated by combing through case files for patients who returned to the clinic to inform staff of their detransition or regret. The thing is, though, detransitioners almost never do this. This is widely known within the communitywhy would you go back to a clinic or to a doctor who, in your view, helped you hurt yourself?
Apart from the few who sue their doctors and therapists, detransitioners tend simply to disappear from a clinics view, despite often having urgent needs for continued medical treatment and therapy. I have heard of only three detransitioners who went back to talk to the clinicians who had assisted them in transitioning. (The experience of one who did just that convinced me that I probably never will.) Nor do they tend to go to other clinics for follow-on care: they simply become invisible.
The majority of the studies supporting the conclusion that medical transition yields positive outcomesand there are manyfollowed patients in highly structured clinical programmes that provided comprehensive assessments. But when I searched last February for programmes that met that careful standard in America, I wasnt able to find one. No one knows whether informed-consent protocols will yield the same success rate, but the stories Ive heard during the past five years make me profoundly sceptical.
In a comprehensive examination of peer-reviewed articles on medical-transition between 1991 and 2017 by researchers art Cornell University, called What We Know, there have been no studies tracking a cohort of patients at an informed-consent clinic over time to investigate the outcomes that their protocol produces. Moreover, there have been no studies on what percentage of clinics in America follow the standard of care recommended by the World Professional Association for Transgender Health versus their own informed-consent protocols.
From the point of view of clinics, they would respond to the criticisms by noting that informed-consent clinics often serve a poor and transient population, which presents challenges to following up with patients. Another difficulty is that transgender medicine is a relatively new field serving a small minority of the population, necessarily limiting funding and opportunities for research. As to whether informed-consent policies have the effect of leading people to medical interventions too soon, they would argue that the people who end up feeling ill-served by the high level of patient autonomy will always be a small minority.
Yet this does not obviate the need for better practices. I dont want informed-consent clinics shuttered. I want them to do the tasks normally associated with medical care. This includes giving patients access to differential diagnosis (distinguishing between conditions that share similar symptoms) and follow-up research so that providers can improve the care they offer.
There is a responsible path between making transgender people jump through hoops and allowing people experiencing psychosis to have their testicles removed
For example, ensuring that low-cost psychology referrals are offered to all patients seeking informed-consent care could increase voluntary participation in comprehensive evaluations. Ensuring that staff are trained to identify patients showing signs of certain severe disorders, and to provide psychological evaluations when appropriate, could help prevent outcomes like Bettys.
Even ensuring that all clinics have counselling referrals on hand would be a step in the right direction. Although I received a prescription for hormones by my second visit, many patients sat on the waiting list for counselling from the same clinics social workers for more than five months and when I requested an outside referral, I was told to google the phone number of a local counselling internship site.
There is a responsible middle path between making transgender people jump through hoops to access needed medical care and allowing people experiencing psychosis and delusions to have their testicles removed. Until gender care providers accept their ethical responsibility to find that path, the American medical system continues to serve this community of people poorlybut this time, this neglect is designed and perpetrated by allies under the banner of transgender rights.
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Carey Callahan is a family therapist and board member of the Gender Care Consumer Advocacy Network, a non-profit group that advocates for the rights and welfare of consumers of gender care services.
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Gender identity is hard but jumping to medical solutions is worse - The Economist
