Letter to the White House
Policies should be evidence based
[Dear Pitt Readers, here is a letter that perhaps you can send (or send its link) to your representatives, to the President (Contact Us), First Lady, Vice President, Second Gentleman, HHS (email@example.com , @HHSPopAffairs), Surgeon General (firstname.lastname@example.org), etc.
If there are corrections needed, please send them to email@example.com, it is of course extremely important to be accurate about this complex topic.
See also a shortened version by “Elizabeth” in the comments, below, that fits into some of the comment forms that our elected officials have.
I applaud and support the White House proclamation that trans people should not be subject to discrimination and agree that people in this country should “work toward eliminating discrimination against all transgender, gender nonconforming, and nonbinary people — and all people.” I am 100 percent behind this.
Part of eliminating discrimination is making sure that people who identify as transgender (currently 2% in high school and 3% in college) or who have gender dysphoria get accurate information and the best evidence-based care available. This need is even more acute in light of the unknown number of people whose trans-identity proved to be transient, but only revealed itself as such after they had incurred iatrogenic harm from medicalization. (Relevantly, 45% of participants in a recent detransitioner study reported they were not properly informed of health implications when they consented to medicalization, another third felt only partly informed.)
Also relevantly, I wonder why the US government did not make a proclamation as well for Detrans Awareness Day on March 12 and hope they will correct their oversight and lack of inclusivity in 2023.
Sadly, evidence underlying gender care is of low quality, meaning that expected outcomes for any given person and intervention are difficult to predict. Even more sadly, the most recent HHS guidelines (Gender-Affirming Care and Young People) do not accurately report the current research evidence regarding “the burdens, risks, and expected benefits of all options, including forgoing treatment” crucial for true informed consent.
Thorough context is provided in this recent expert medical review: Reconsidering Informed Consent for Trans-Identified Children, Adolescents, and Young Adults (a summary is here). Briefly, gender dysphoria is not well understood. Many contributing etiological pathways have been observed, including biological, cultural, social and psychological factors, the interplay of which may differ for each individual and for childhood, adolescent, and adult onset gender dysphoria. It is well understood by clinicians around the world, however, that there are also many pathways out of gender dysphoria, including increased maturity, increased self awareness and/or other mental health support (e.g., psychotherapy or psychiatric services), as well as medical interventions. Research found that the majority of children with gender dysphoria in the past outgrew it by late adolescence, realigning with their bodies and often, but not always, growing up to be gay, lesbian or bisexual. However, "virtually nothing is known regarding adolescent-onset GD." There is no clinical test to distinguish whose gender dysphoria will most likely resolve or worsen with which intervention.
In considering possible treatment, it is also prudent to consider the comorbidity of mental health issues, including trauma, being on the spectrum, depression, anxiety (including social or separation anxiety), bullying, internalized homophobia, anorexia, and OCD, which have sometimes underpinned gender dysphoria. It is also important to take into account (the currently untracked number of cases) where medical intervention resulted in harm, including patients later recognizing that medicalization was an inappropriate path. For these individuals, gender dysphoria may have been better treated through therapy. Given that it is unknown how to predict whose trans-identity is temporary, it is also unknown how to predict when an individual might alter their body, only to find a mismatch yet again later in life. Thus the provision of medical gender affirmation treatment must be approached with the utmost of care, and be informed by the (currently very limited) evidence.
Given these substantial uncertainties, as well as the lack of consensus within the medical community, the not yet understood1 enormous rise2 of cases primarily among adolescents and young adults, the serious consequences of medical intervention (including increased risks of infertility, sexual dysfunction, modification of brain function, heart attacks, strokes, blood clots, bone damage, endocrine and immune system disorders), and the risks even of social intervention, many countries have undertaken rigorous and comprehensive evidence reviews. Most recently, for under 18’s, the UK NICE evidence reviews concluded “The critical outcomes for decision making are the impact on gender dysphoria, mental health and quality of life. The quality of evidence for these outcomes was assessed as very low certainty using modified GRADE.” The UK’s just released interim Cass report for policy noted: “Evidence on the appropriate management of children and young people with gender incongruence and dysphoria is inconclusive both nationally and internationally.” Sweden, too, found that “the risks outweigh the benefits at present” for medical treatments for young people; its main hospital restricted new treatments for minors to clinical studies almost a year ago. Based on a review of the literature, Finland has also recently restricted medical interventions for those 25 and under, and in February, France put out a guidance prioritizing psychotherapy. Closer to home, the US Endocrine Society guidelines published in 2017 similarly found most of their medical intervention recommendations to be supported by evidence which was only low quality, very low quality or ungraded.
In light of the above, the US government would be wise to report on and respond to the treatment challenges in a similar manner to other countries, perhaps with an evidence review of its own. Clear and accurate guidance is desperately needed due to the rampant serious misconceptions in this area of medicine: “erroneous professional assumptions; poor quality of the initial evaluations; and inaccurate and incomplete information shared with patients and their parents”. However, HHS instead repeats and adds to the misconceptions, with unsupported and inaccurate statements such as:
1.“Research demonstrates that gender-affirming care improves the mental health and overall well-being of gender diverse children and adolescents.”
The research cited for this statement is explicitly unable to show cause and effect. That is, it can not, and does not, show gender affirming care causes any outcome.
2. “Medical and psychosocial gender affirming healthcare practices have been demonstrated to yield lower rates of adverse mental health outcomes, build self-esteem, and improve overall quality of life for transgender and gender diverse youth.”
The first paper listed in support is only able to say research "suggests that youth who are supported in pursuing medical interventions have reduced dysphoria and improved psychological functioning and life satisfaction”. Italics mine. Why not report this accurately, HHS?3 The second paper listed in support can not, and does not, show the interventions cause any outcome.
In addition, the HHS guidance inappropriately lists puberty blockers as reversible when used for the treatment of gender dysphoria. It is actually unknown whether these chemical castration drugs are reversible when used at these stages of development and for these lengths of time.6 The recently released UK interim Cass report notes: “There has been research on the short-term mental health outcomes and physical side effects of puberty blockers for this cohort, but very limited research on the sexual, cognitive or broader developmental outcomes” and cautions: “Again, it is important that it is not assumed that outcomes for, and side effects in, children treated for precocious puberty will necessarily be the same in children or young people with gender dysphoria.” Anecdotally, puberty blockers have caused irreversible harm, more generally, one study measured significant bone damage. Their use for gender dysphoria is controversial among experts.
Nor has it been shown that medical intervention prevents suicidality or that refusing to provide it increases the risk of suicide.7 Nonetheless, the HHS page refers readers to a Columbia University site with the (not supported by evidence) title: “Gender-Affirming Care Saves Lives.”8
To summarize, it is alarming and dangerous that instead of reporting and responding to the low quality of evidence for medical interventions, as other countries have done, HHS is repeating misconceptions about benefits and risks of these serious, lifelong and often irreversible treatments for this vulnerable population, and is apparently basing its policies on these misconceptions as well. Nor does HHS seem to be mentioning any of the supportive alternative treatments and their risks and benefits.
This is a grave shortcoming not only because it is unknown who in this unexplained large cohort of young people has a transient trans identity, but also because of the weighty medical consequences of intervention. Those on the medical path are frequently deprived of two fundamental human rights that should not be compromised except in exceptional circumstances: fertility and sexual function. As so many young people now have these treatments easily available (for over 18 sometimes without even a mental health assessment), the consequences are momentous for both the young person and society as a whole, and even more so for those who inappropriately medicalize their gender dysphoria.
Given the absence of sound evidence that mental health, gender dysphoria or quality of life might even be expected to improve with medical interventions, and the lack of even basic statistics of long term outcomes, the current HHS statements are unethical and undermine the efforts of patients and families to fully understand the potential implications and concomitant uncertainties of consenting to medical gender interventions. I respectfully request HHS correct this policy’s incorrect statements about what has (not) been shown to follow from medical intervention, and to make this and other policies concordant with the scientific research in this field. I also encourage our government to thoroughly and rigorously review the evidence, and until then, to responsibly note and accurately report results of others who have done so. These vulnerable and distressed young people deserve and badly need accurate information and evidence based recommendations and policies. The United States is not yet providing them. It is way past time to follow the science.
The relevant statement in this reference is even less compelling in detail. It cites three papers: the first is only fair (not good) quality, moderate (not low) risk of bias, loses 25/93 (over ¼) of the treated participants and follows up for too short a time. The limitations of the second paper, de Vries et al (2014), are detailed here. The third paper discusses the treatment protocol and demographics of those coming to a treatment center, it does not appear to conclude anything about outcomes, i.e. the reason it is being quoted.
Consistent with the US and international evidence reviews, neither puberty blockers or other hormonal interventions are on label with the FDA for the treatment of gender dysphoria. That is, the FDA has not determined that “the benefits of using the drug for a particular use outweigh the potential risks.
This essay by Bernard Lane has a great compilation of references about suicide risks. If one is going to use “associations” rather than cause and effect, it has also been found that “Estrogen is associated with greater suicidality among transgender males, and puberty suppression is not associated with better mental health outcomes for either sex.”
The referenced web page gives no reference for the (unsupported by research) title statement, nor for the (unsupported by research) claim that “medical and psychosocial health care designed to affirm individuals' gender identities—greatly improves the mental health and overall well-being”; the paper they cite for showing medical intervention “significantly decreases gender dysphoria” does not appear to discuss the effects of treatment on gender dysphoria.