170K transgender Americans likely to get hormones from riskier and unlicensed sources, warns study
Many transgender people seek gender-affirming or transition-related care, and this care may include hormones, surgical procedures, or both. This is besides their routine healthcare needs. However, people who are transgender continue to face insurance barriers in accessing the healthcare services they need. Researchers report that underinsured transgender Americans are more likely to turn to riskier sources -- that is, other than a licensed healthcare provider -- for gender-affirming hormone therapy. They found that an estimated 9% of transgender adults -- which translates to about 170,000 individuals in the US currently -- access hormones from non-licensed sources like friends or online or other non-licensed sources, which poses health and safety risks.
The study found an association between the use of non-prescribed hormones and lack of health insurance or denial of insurance coverage for gender-affirming medical care. Survey respondents also identified insurance coverage as a prevailing barrier: it was ranked as a top issue affecting transgender people in the US. It ranked second only to violence against people who are transgender.
The team warns that hormones accessed from an unlicensed source could be dangerous as medications may be unchecked for content and quality, and may differ in formulation and dose from those recommended. Additionally, the use of non-prescription hormones likely entails decreased monitoring of hormone levels and less opportunity for mitigating risks or other forms of harm reduction and preventive care.
Despite these risks, the use of nonprescription hormones might also be interpreted as “an expression of resilience and strength” among transgender people, suggest investigators. Faced with barriers to accessing needed care, some transgender people circumvent the barriers by finding alternative resources for acquiring their medications, which have been shown to improve mental health outcomes, they add.
“Transgender and nonbinary people face major barriers to insurance coverage for their needed care, with many people still lacking or being denied coverage for gender-affirming care. Those barriers affect transgender people’s ability to receive the care they need. Those who can’t, may seek alternative ways to get their medications, which can increase their risks for negative health outcomes,” explains lead author Dr Daphna Stroumsa, an obstetrician-gynecologist at Michigan Medicine Von Voigtlander Women's Hospital and researcher with the University of Michigan Institute for Healthcare Policy and Innovation (IHPI).
What did the authors find?
The team analyzed national data from the US Transgender Survey and found that 84% of the over 27,000 respondents were interested in using hormones, while only 55% were using hormones. Overall, 3,362 or 15% of respondents were uninsured, compared with about 13% of all Americans at the time of the survey in 2015.
An estimated 992 or 9.17% were using nonprescription hormones. The use of nonprescription hormones was more common among respondents who were uninsured (odds ratio 2.64) or whose claims were denied (odds ratio 2.53), says the report published in the Annals of Family Medicine.
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Among insured respondents, 21% reported that their claims for gender-affirming hormones were denied. Nonprescription hormone use was most common among respondents assigned male at birth and differed by race. Among all who had an interest in taking hormones, those who were uninsured were less likely to use hormones in general compared with insured counterparts, which experts say could negatively impact mental and emotional health.
When survey participants were asked to evaluate the most pressing issues affecting transgender people in the US, they listed insurance coverage as one of the most important, among 44% of respondents.
The authors caution that when people are unable to fill a prescription through a regulated process, they are left with options that increase negative health risks. “Lack of insurance coverage for gender-affirming hormones is associated with lower overall odds of hormone use and higher odds of use of nonprescription hormones. Such barriers may thus be linked to unmonitored and unsafe medication use, and increase the risks for adverse health outcomes. Ensuring access to hormones can decrease the economic burden transgender people face, and is an important part of harm-reduction strategies,” they suggest.
Significant barriers exist
Many major US medical societies and associations, including the American Academy of Family Physicians, have issued statements in support of insurance coverage for gender-affirming care. Clear guidelines also support the provision of gender-affirming hormones for transgender people who seek them, which is associated with improved mental health outcomes. However, there continue to be significant barriers in accessing these health services, say authors. For example, transgender people often face employment discrimination leading to un-insurance, and those who are insured often encounter insurance policies with specific exclusions or barriers for coverage of gender-affirming therapy, they explain.
There are structural barriers too. These include high rates of homelessness secondary to stigma, rejection and discrimination, a lack of knowledgeable and supportive clinicians, and transphobia and direct discrimination in health care settings.
According to the investigators, while the Patient Protection and Affordable Care Act increased coverage for transgender people through a variety of mechanisms, regulatory and legislative changes are in “constant flux, and have been threatened and eroded in the past few years under the Trump administration.”
“Transgender people face a host of structural barriers combined with barriers to insurance coverage that limit access to gender-affirming hormones. These limitations may have broad implications for the health and safety of transgender people,” writes senior author Dr Caroline Richardson, family medicine physician at Michigan Medicine and IHPI researcher.
The investigators emphasize that future qualitative research may shed light on the reasoning and mechanisms by which transgender people navigate accessing hormones. “In understanding these processes, healthcare clinicians can develop mechanisms for harm reduction, including institutional-level programs to ensure access to medications,” they conclude.