By: Michael Goodman, MD, MPH
While the transgender community justifiably views the new proposal as an important victory, there is an important sticking point. As pointed out in this month’s New York Times article describing the new rule, “the proposal does not list a specific set of medical services that have to be covered under the civil rights provision of the health law. It says that health insurers can make decisions about whether care is medically necessary for individual patients.” How does one decide what is medically necessary? In modern medicine, this decision should be based on credible scientific evidence.
Very little such evidence is available in transgender health care. To date, most studies evaluating health and well-being of transgender individuals in the United States focused on substance use and abuse, sexual health (mostly HIV infection), and to a lesser extent, mental health problems. By contrast, limited U.S. research is available on basic general health issues such as mortality, frequency and risk factors of treatment complications, and with the exception of very few studies, very sparse information exists on the risks of cancer, osteoporosis, diabetes, and other age-related chronic conditions thought to be affected by “cross-sex” hormones.
In the absence of hard empirical evidence, the standards of care published by the World Professional Association for Transgender Health (WPATH) are based primarily on expert professional consensus . In issuing their recommendations, the WPATH members repeatedly ask for more and better data; however, such data cannot be generated without rigorous research.
Rigorous research data come from well-designed large-scale studies, and well-designed large-scale studies require time, commitment and resources. It all comes down to funding. A recent analysis of funding awarded by the National Institutes of Health found only 43 studies investigating transgender health topics . After removing studies focusing on HIV/AIDS and other sexual health matters, that number came down to just 14. There was only one transgender health study assessing risk of hormone-related cancers, and none of the funded studies focused on metabolic and cardiovascular diseases that may be linked to hormones.
According to some estimates, there may be as many as 700,000 transgender people in the United States . This number is about the same as the population of Alaska, and is greater than the populations of, say, Vermont or the District of Columbia. The proposed rule has established that transgender people should have adequate access to health care. This is undoubtedly an important step, but it is just as important to ensure that care offered to transgender people is evidence-based. Today we still know very little about which hormonal treatments are associated with greater risks and greater benefits, what is the frequency of post-surgical complications following gender affirmation, and what types of conditions may require screening or other forms of monitoring in transgender people of older age. Important unanswered questions are not limited to adults. Many transgender children and adolescents, their parents, and their physicians need to know when transgender people begin questioning their gender identity, what is the natural history of such gender questioning, and at what age one can begin gender affirmation. Without trustworthy science, answers to these questions will remain unclear, and a decision on what is “medically necessary” will be a matter of opinion.
1. Federal Register 8(173) p. 54171 Document Number: 2015-22043 https://federalregister.gov/a/2015-22043.
2. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. The National Academies Press; Washington, DC, 2011.
3. Coleman E, Bockting WO, Botzer M, et al. Standards of care for the health of transsexual, transgender, and gender-nonconforming people, version 7. Int J Transgenderism 2012;13:165-232
4. Coulter RW, Kenst KS, Bowen DJ, et al. Research funded by the National Institutes of Health on the health of lesbian, gay, bisexual, and transgender populations. Am J Public Health 2014;104:e105-112
5. Gates GJ. How Many People are Lesbian, Gay, Bisexual and Transgender? The Williams Institute, UCLA School of Law; Los Angeles, CA, 2011