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When Healthcare Hurts: Iatrogenic Harm in Gender Medicine
A new paper highlights the urgency for research and open discourse to address the escalating number of detransitioners.
The article below was originally published on the Society for Evidence-Based Gender Medicine’s website on June 21, 2023.
The escalating number of detransitioners presents a sobering critique of the “gender-affirming” model of care, a method that has seen widespread adoption for a new group of youths without any prior history of gender distress and who starkly deviate from past cohorts. This increase in detransitioning points towards overlooked aspects in this model, which, due to its uncritical reception, has caused a slew of complications in many young lives. This trend is not isolated to the United States; in fact, many European countries that were once staunch advocates for immediate affirmation have since moved away from this practice following systematic reviews revealing scant evidence of the efficacy of gender-affirming care and many elevated risks.
Our analysis sheds light on Jorgensen’s commentary, including its emphasis on the urgency for research, open discourse, clinical collaboration, and our concerns about the escalating rates of medical detransition and the necessity of restructuring the healthcare system to accommodate and support this emerging, vulnerable group.
Jorgensen’s commentary, published in the Journal of Sex & Marital Therapy, she emphasizes the need for the medical community to acknowledge detransitioners as survivors of iatrogenic harm. She questions the efficacy of the gender-affirming model of care and notes that proponents of gender-affirming medical interventions routinely downplay regret and detransition as vanishingly rare based on outdated studies that are not applicable to cohorts of adolescent trans identifying females presenting to gender clinics today. They refuse to admit that the gender-affirming model is failing some patients and have instead tried to reframe detransition as a neutral or even positive outcome, proposing euphemisms such as “gender journey,” “identity exploration,” or “dynamic desires for gender-affirming medical interventions,” to replace the term “detransition.” According to Jorgensen:
Rather than acknowledging the severity of the problem or that the medical community bears responsibility for the harm done to these young people, the message is that there have been no mistakes - the situation is dynamic.
Instead of asking what went wrong, what was missed, and what could have been done differently to prevent inappropriate medical transitions, proponents of gender-affirming care repeatedly make appeals to authority, “every major medical association in the United States supports gender-affirming care for minors,” seemingly oblivious to the move away from American-style affirmation-on-demand in many European countries:
A growing number of health authorities in countries that were once proponents of youth medical transition are now changing practice and prioritizing psychotherapy and treatment of co-occurring developmental, psychosocial, and mental health problems after their own systematic reviews found the evidence supporting gender-affirming medical interventions to be weak and uncertain.
Many detransitioners report that they find it challenging to access clinicians who can advise them on what to expect when discontinuing hormones or who have the knowledge and training to manage enduring adverse effects of hormonal therapies and surgical complications. Jorgensen notes that there is currently no guidance on best practices for clinicians involved in the care of detransitioners:
The World Professional Association for Transgender Health (WPATH) recently published its eighth Standards of Care document and chose not to include a chapter on detransition (Coleman et al., 2022). Likewise, the Endocrine Society’s Clinical Practice Guidelines for Gender-Dysphoria/Gender-Incongruence offers no advice on how to safely stop hormonal therapies (Hembree et al., 2017). The American Academy of Pediatrics failed to acknowledge the possibility of regret and detransition in their policy statement on care for children and adolescents with gender dysphoria (Rafferty et al., 2018).
Jorgensen highlights multiple areas of uncertainty that will require open discussion and a commitment to clinical collaboration and research to resolve.
We do not know what is driving the sharp rise in the number of young people being diagnosed or self-diagnosing with gender dysphoria (Cass, 2022; Kaltiala-Heino, Bergman, Tyolajarvi, & Frisen, 2018; Zucker, 2019). Likewise, we do not know why the case mix has rapidly shifted from predominantly young boys and middle-aged men to primarily adolescent females with complex mental health problems and neurodiversity (Aitken et al., 2015; Kaltiala-Heino et al., 2015; Zucker, 2019). The natural trajectory of transgender identification in this novel cohort is uncertain and we cannot predict who will be helped by gender-affirming medical interventions or who will be harmed. The long-term safety and effectiveness of these interventions is yet unknown (Hembree et al., 2017; Ludvigsson et al., 2023; NICE, 2020a, 2020b).”
Importantly, Jorgensen emphasizes that “we miss out on urgently needed data that could improve the outcomes of future patients by ignoring detransitioners.”
The rate of medical detransition in the Western countries currently stands at 10-30 percent and is expected to grow. A number of the detransitioned patients will have permanent unwanted changes to the bodies and adverse long-term impacts on their physical and psychological health.
There is an urgent need to recognize detransition as a new phenomenon, and to structure the healthcare system in order to support this vulnerable patient population. However, due to the novelty of the detransition phenomenon, no diagnostic or procedure codes currently exist that accurately capture the detransitioned patients’ condition or ensure provider reimbursement for the medical and mental health services that patients will need.
For this reason, it is urgent that the medical community initiate a conversation about what types of diagnostic and procedure codes are necessary to ensure the provision of high quality care to the individuals who detransition.
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