Proposed ban on using Medicaid to pay for transgender care in Florida riles experts
'There's a remarkable amount of cohesiveness and consensus in the community that these (treatments) are beneficial,' one expert says.
Gov. Ron DeSantis speaks during the inaugural Moms For Liberty Summit in Tampa July 15, 2022. He wants Medicaid to stop paying for certain kinds of transgender care. Photo by Octavio Jones/Getty Images
As the state seeks to ban the use of Medicaid to pay for gender affirming treatment for transgender Floridians, some medical experts are criticizing the reasoning behind the policy.
Last week, seven scientists and a Yale law professor published an analysis blasting the June report from Florida’s Agency for Health Care Administration (AHCA), which reports to Gov. Ron DeSantis, that’s being used as the justification for the policy change. The move also has mobilized state and national advocacy groups against the policy.
City & State spoke with experts in the treatment of gender dysphoria, the “psychological distress that results from an incongruence between one’s sex assigned at birth and one’s gender identity,” according to the American Psychological Association. They levied criticism against the state’s findings, its characterization of key issues and they questioned the political motivation behind the report. A request for comment is pending with an AHCA spokesperson.
Related coverage from the News Service of Florida:
But the governor has gone on record opposing transition-related care for transgender children, telling conservative podcaster Lisa Boothe, “There’s a concerted effort in society to push these kids in to do some type of medical intervention,” according to NBC News.
Available literature 'provides insufficient evidence,' state says
This summary is contained early in AHCA’s report: “Available medical literature provides insufficient evidence that sex reassignment through medical intervention is a safe and effective treatment for gender dysphoria. Studies presenting the benefits to mental health, including those claiming that the services prevent suicide, are either low or very low quality and rely on unreliable methods such as surveys and retrospective analyses, both of which are cross-sectional and highly biased. Rather, the available evidence demonstrates that these treatments cause irreversible physical changes and side effects that can affect long-term health.”
Later in the report’s 46 pages, it claims that the available studies on the effectiveness are highly biased because they rely on self-assessment, or subjects reporting their conditions. But that position demonstrates a lack of understanding on how mental health research is conducted, says Dr. Alex Keuroghlian, an associate professor of psychology at Harvard University. His clinical practice and research focus on sexual and gender minority health and he is director of the Fenway Institute’s National LGBTQIA+ Health Education Center.
Keuroghlian says self-assessment is the only way to get research subjects and patients to identify what they are feeling for a study. “The only way for anxiety symptoms to be reported is for a patient or research participant themselves to answer the question about whether they're experiencing depression or anxiety or suicidal ideation. There is no other way to obtain that information other than asking the patient … That's the nature of psychiatric and mental health research,” he says.
Dr. Joshua Safer, the executive director of the Mount Sinai Center for Transgender Medicine and Surgery and professor at the Icahn School of Medicine at Mount Sinai, says that even if such studies were “low quality” does not exclude them from being used by medical doctors to inform treatment for their patients. “ ‘Low quality’ studies are typical for much of medical care and much better than ‘expert opinion,’ (which is) also common for medical care. The essential knowledge that medical treatment is safe is very convincing, as is the benefit to mental health for those receiving gender affirming care versus those denied that care,” he says.
Study that state relied on was widely criticized, critics say
The two not only took issue with the report’s characterization of the research in the field as a whole, but criticized some of the studies it cited to back up its claims. One of those studies was by Dr. Lisa Littman, whose 2018 study that coined the term “rapid-onset gender dysphoria,” or the idea that some people develop it due to social pressure. The AHCA report used Littman’s study to argue that more research is required to identify the cause of gender dysphoria, bolstering its argument to not recommend gender-confirming treatment.
Both experts, however, say Littman’s study has been widely criticized by the academic community and had several retractions. Safer says it stems from her study relying on online polling of parents on anti-trans websites and did not involve speaking with any of the children. “There is no entity called rapid onset gender dysphoria. Dr. Littman polled parents on an anti-trans website and found much worry among those parents. That worry may be worth understanding and exploring further. That Dr. Littman chose instead to make an erroneous claim on a new diagnostic entity made her suspect as a serious investigator,” he says.
Keuroghlian says the biggest flaw in Littman’s study was that she did not engage with trans children. “So you're making claims about the population you didn't engage with at all for the research you are conducting. I can see why. When a parent first hears from their teenager that they're trans or gender diverse, that's rapid onset news for the parents, but it doesn't mean that it was a rapid onset experience for a young person,” he says.
Since that study’s 2018 publication, Littman has made few comments to the media but did defend her paper during an interview with Quillette, an online libertarian-leaning magazine. She said that while her paper was republished and changes were made, the methods and findings remained mostly unchanged. “Overall, I am very pleased with the final product and that my work has withstood this extensive peer-review process,” she said. Littman also wrote a response to a scientific critique penned by another researcher at Brown University, where she conducted her research.
The AHCA report concluded that three different types of gender confirmation treatment – puberty blockers, hormone therapy and gender confirmation surgery – either have known irreversible elements, their effectiveness is unknown or their use for treatment of gender dysphoria is off-label, when a physician gives a patient a drug or treatment that the FDA has approved to treat a condition different than the one it’s made for.
Expert: Evidence shows transgender care effective
Keuroghlian says that while it is true that some types of gender confirmation treatment have irreversible aspects, available research is clear that they are effective at treating gender dysphoria. Aside from research into their effects, he also says studies into the transgender and gender diverse communities’ attitudes towards the treatments are not fragmented and are viewed as beneficial. “There's a remarkable amount of cohesiveness and consensus in the community that these are beneficial. But those aren't the people that (AHCA is) listening to. They're wanting to impose certain people's views on trans folks rather than centering autonomy and control,” Keuroghlian says.
Safer adds the argument that treatments like puberty blockers and hormone therapy shouldn’t be used to treat gender dysphoria is misleading because treatments that are off-label are frequently used in medicine. “Much of endocrinology and medicine in general is off-label. That just means that medication is used for a purpose other than that for which the pharmaceutical company did the paperwork. Such prescribing is common. That is part of the reason states license physicians, to make those prescribing decisions,” he says.
Another argument in the report was that “the majority of young adolescents who exhibit signs of gender dysphoria eventually desist and conform to their sex (at birth) into adulthood,” which could lead to regret in those that undergo gender confirming treatment with irreversible side effects, such as surgeries.
Keuroghlian says the studies commonly used to make that argument, including some cited in AHCA’s report, conflate signs of gender dysphoria with children who exhibit gender non-conforming behaviors, or when a person doesn’t match the gender norms that are expected of them. He says it’s common that cisgender kids – those whose gender identity corresponds to their sex assigned at birth – exhibit such behavior. That means any study that categorizes cisgender children the same as trans children with gender dysphoria is missing the mark.
Rates of those who 'detransition' are low, studies show
AHCA also has centered arguments about children who detransition after getting gender-affirming treatment as they have continued pushing for the policy. A hearing earlier this month opened with the testimony of Chloe Cole, a 17-year-old from California who underwent gender confirmation treatments, including surgery to remove her breasts, between the ages of 13 and 16 but has since detransitioned. Keuroghlian, who has conducted several studies and analysis on detransitioning, says it is rare when it does occur and is typically not due to regret.
According to his most recent findings, detransition rates overall are low, with about 13% of those undergoing gender-confirming treatment in the data analyzed detransitioning at some point. However, over 80% of them did not detransition because of internal factors like regret, but external factors, like pressure from family or their community, moving geographically or no longer having access to care. “If you have a patient who no longer identifies as transgender or gender diverse, know that that's likely due to external factors, not due to internal factors, and also that they're quite likely to go on to pursue gender affirmation again in the future when those external factors change,” he says.
Both experts say the arguments and language used in the report and what it omitted hint that politics are underpinning AHCA’s findings. Keuroghlian says the report’s use of language like “sex reassignment” instead of terms like “gender-affirming surgery” is another element that stood out to him. “We don't use the term sex reassignment anymore. Their language is outdated and conveys some bias about what this is,” he says.
Safer says it was a mystery to him how the report would be generated without consulting some of the experts in the field at Florida’s universities. He says he views the direction of AHCA’s push for the policy as affecting the doctor-patient relationship. “Government interference in the doctor-patient relationship seems very dangerous to me. I certainly wouldn’t want my medical care to be compromised by such action,” he says.
Nikole Parker, director of transgender equality for Equality Florida, a LGBTQ+ political advocacy group, has spoken out against the report and AHCA’s policy pursuit. She says trans issues have become politicized at the expense of the health of Florida’s trans residents.
“As a trans woman it's devastating to see this, because a lot of the people who are creating these policies have never met someone who is trans and don't understand what gender affirming care is,” she says. “Just because my experience isn't widely understood does not make it bad or make it negative. It's very sad to see that 10,000-plus trans Floridians could possibly be losing their medical care just because an issue has been politicized that shouldn't be.”
She says trans people in Florida and across the country are being used as political weapons ahead of the 2022 election. “They're using it because they know that people fear what they don't understand,” she says. “They have chosen this as their weapon of choice, this political season. The hyperbolic rhetoric that we're seeing is just simply not true and not needed. We’re human, just like everyone else. If you take away the humanity of a person, it's easier to demonize them, it's easier to remove their rights. And that's what they're doing. I hope at some point, we can just let people be people, let people just be happy and stop using trans people as a political weapon.”