A patient should be more than a number, but detransitioners can’t even get that.
Reclaiming one’s biological gender after a gender transition is so taboo, that there is no way to document it in a medical record with an official diagnosis code.
FAIR in Medicine, where I am a fellow, applied for International Classification of Disease diagnosis codes representing detransition through the Centers for Disease Control and Prevention. Designated subject matter experts from the American Psychiatric Association (APA) and the American Academy of Pediatrics (AAP) are still reviewing our application, nine months later.
Detransitioned patients are left wondering why, after receiving ample medical support for gender transition, the medical establishment continues to ignore their detransition.
International Classification of Disease diagnosis codes label patients’ medical issues and electronically shuttle them through the U.S. healthcare system. These letter-number combinations facilitate communication, help prevent medical errors and signal insurance companies to reimburse for treatments.
Codes exist for patients “struck by orca, initial encounter,” or who have “problems in relationship with in-laws” and even for those “sucked into [a] jet engine, sequela.” However, detransition remains an unrecognized medical entity because it has no corresponding diagnosis code.
Codes tag conditions so they are detectable in the CDC’s electronic database, allowing for better understanding through research. While there are codes documenting a change away from natal gender, no code exists to catalog patients who transition back. Consequently, there is no mechanism to capture the detransition rate — a possible indicator of harm from treatments patients receive to change their gender. This is unconscionable in an era of evidence-based medicine, especially when some treatments are irreversible.
Safeguarding medicine requires accepting the possibility of being wrong. But gender-affirming care is rooted in a clinician’s assumption of always being right — an expectation that exists nowhere else in medicine.
Gender-affirming care uses hormones and surgeries to better align gender-nonconforming patients’ appearance with their feelings of gender identity. Gender dysphoria, the discomfort with one’s natal gender, is often the prelude to affirmation of a new gender identity and gender-affirming treatments. Gender incongruence from an inherent gender-nonconforming identity is presumed to be the cause of gender dysphoria, guiding treatment.
Usually, patients undergo examinations to pinpoint diagnoses and determine the appropriateness of treatments. But an investigation of an individual’s gender dysphoria is seen as stigmatizing to the gender nonconforming population and deemed “gatekeeping” for transgender care.
Yet more patients are emerging from gender-affirming treatments realizing that their gender dysphoria was caused by something other than gender incongruence, joining a population known as detransitioners. Gender transition regret is described as rare, with reported rates ranging from 0.3 percent to 3.8 percent, but some evidence suggests rates as high as 30 percent. Measuring detransition is difficult, as one study found that 75 percent of detransitioners did not notify their gender care clinician of their detransition. Any reliable estimate of the detransition rate remains unknown.
Meanwhile, gender transition is a booming industry in the U.S., with estimates of over 300 gender clinics in operation that treat minors — up from zero in 2006 — and an almost threefold increase in gender-affirming surgeries between 2016 and 2019. But all medical interventions carry risk, and detransition is one result if gender transition treatments don’t deliver what patients expect. Detecting patients who stop or reverse treatment helps assess treatment benefits.
The American Psychiatric Association’s official publication, “Gender-Affirming Psychiatric Care,” champions gender-affirming care, but ignores detransition, except to describe elderly transgender individuals who detransition due to social stressors. This omission disregards the young people who are detransitioning and bringing lawsuits detailing the harms they have suffered, some facing a lifetime of physical alterations, sterilization and hormone replacement.
The APA-sanctioned book even suggests that an evaluation of gender dysphoria that withholds gender-affirming treatments such as puberty suppression and hormone therapy “constitutes a form of GICE [gender identity conversion effort].” The possibility of misdiagnosis is discussed, but only from the perspective of mistaking a transgender identity for something else, not the other way around.
The American Academy of Pediatrics similarly recommends gender-affirming care, while having only recently initiated a systematic review of the evidence. Results of such reviews in other countries have shown that the benefits do not outweigh the risks, leading to recommendations away from medicalization for gender-questioning youth.
The assumption that gender incongruence is always the cause of gender dysphoria leaves no room for the possibility that some patients may have other psychological stressors contributing to their mental distress — leading them to inappropriate gender transition — and resulting in future detransition. Acceptance of detransition flips the concept of immediate gender affirmation on its head.
Medicine should swallow the truth by acknowledging gender detransition in our healthcare system. We hope the APA and AAP recognize this neglected cohort of patients and agree that safe medicine must always be a priority, regardless of gender identity.
Aida Cerundolo M.D. is a fellow for FAIR in Medicine at the Foundation Against Intolerance and Racism.