Trans people living with HIV experience numerous barriers to receiving appropriate and culturally competent healthcare. One study found that 82% of Black and Latina transgender women living with HIV had experienced at least one barrier to healthcare access. While high-quality data on HIV outcomes in transgender individuals living with HIV can be hard to come by, existing studies suggest that there are significant disparities between transgender and cisgender people living with HIV at various points of the HIV care continuum, including linkage to care, retention in care, and viral load suppression. It should be noted that existing studies tend to include data on people who were identified as transgender women and transgender men, and that there is a lack of data on HIV prevalence and outcomes for nonbinary individuals. Despite these limitations, it is clear that HIV care delivery systems have not yet been successful in fully meeting the needs of trans people living with HIV.
Gender-affirming healthcare is often seen by providers as secondary to other healthcare needs.
For many trans individuals (though certainly not all), gender-affirming hormone therapy is an important aspect of overall primary care, and many studies have shown that access to gender-affirming hormone care for trans individuals who seek it can substantially improve mental health outcomes. A 2019 systematic review found several studies that demonstrated an improved quality of life after initiation of hormone therapy—one before-and-after study showed that life satisfaction scores nearly doubled among transgender men on testosterone over the course of five years, while a different study found a 16% improvement in quality of life scores among trans women over the course of one year of hormone therapy. Similarly, numerous prospective studies have shown a decrease in depression symptoms while on hormone therapy—one study found that symptoms of depression decreased from 42% to 22% over one year of hormone care. Although some studies in the literature on this topic show a null result (no difference in the mental health outcome related to hormone therapy), not a single study identified in the systematic review found that hormone therapy worsened quality of life, depression, or anxiety.
Gender-affirming care improves HIV outcomes for transgender women
Among trans people living with HIV in particular, research is more limited but supports the idea that access to hormone therapy improves health outcomes. A survey of Black and Latina trans women found that having an unmet need for hormone care was significantly associated with having also experienced an interruption in HIV treatment. Another study found that excellent adherence to hormone therapy was associated with adherence to ART in trans women living with HIV. Similarly, a retrospective chart review study conducted at a Ryan White service provider found that transgender women living with HIV were more likely to be virally suppressed over time if they were receiving gender-affirming hormone therapy than if they were not. It should be noted that all of these studies were specific to transgender women, and there is a need for more research exploring the relationship between gender-affirming hormone therapy and health outcomes for trans men and for nonbinary individuals who desire it.
Despite the limitations, the data clearly show a relationship between hormone therapy and improved outcomes for trans people living with HIV (PLWH). Unfortunately, however, gender-affirming healthcare is often seen by providers as secondary to other healthcare needs, even though prioritizing access to gender-affirming healthcare has the potential to improve both mental health and HIV care outcomes for trans PLWH.
Health systems should integrate HIV and gender-affirming care approaches
Given the importance of gender-affirming hormone therapy in improving mental health outcomes, it’s essential for HIV care providers to prioritize gender-affirming hormone therapy as a key part of primary care for trans individuals living with HIV. While entry to HIV care has been highly streamlined in recent years—with interventions like quick start antiretroviral therapy (ART) and seamless clinical, case management, and pharmacy workflows that get patients on medications as soon as possible, resulting in better outcomes—initiation of gender-affirming hormone care often remains highly cumbersome. In some cases, individuals are sent to a separate provider, resulting in the need to coordinate a second set of medical visits and blood draws. This can be particularly challenging for individuals for whom access to care is already a struggle, which can magnify existing inequities in healthcare access.
Further, although many clinical providers have moved to an informed consent model for hormone initiation, some still require mental health referrals or multiple visits to start on hormone care. Unnecessary barriers to initiation of hormone care can lead to mistrust of providers or clinic sites regarding engagement with HIV care.
A community needs assessment of trans people living with HIV found that many trans PLWH consider access to gender-affirming hormone therapy a higher priority than access to antiretroviral therapy. Despite the numerous systems-level factors that influence health disparities for trans individuals (such as discrimination in employment, housing, and healthcare, economic marginalization, and violence, among others), some providers highlight their trans patients’ focus on hormone therapy as a significant barrier to HIV care engagement for this population. This is likely reflective of stigma and other outdated attitudes in which hormone care is seen as being cosmetic or unimportant for mental health and well-being.
‘I would caution HIV providers from gatekeeping gender-affirming hormone care or using, say, viral load suppression as a condition of getting hormones. Trans people living with HIV deserve gender-affirming hormone care, full stop.’
Erin Kathleen Swepston, DNP, AAHIVS, a New York City-based provider with extensive experience providing HIV care and trans care, sees it differently. “As a primary care provider and a specialist, I feel lucky when I get to work with a patient who has very clear goals and priorities regarding their health,” she said. “If we can partner with our patients to approach their health goals—in the order of importance set by them—we are better positioned to help patients better manage their health overall.”
Swepston has also personally seen the impact of hormone therapy on mental health and well-being for patients she has worked with. “In every case where I have been able to provide gender-affirming care, there has been a rollover of improvement in at least one other area of that person’s life.” She noted that often the most immediate effect she observes is an improvement in mental health. “There is a weight lifted when they know they have access to care. It may be as simple as relieving the stress of having to find a hormone specialist or the worry of how they are going to be able to continue hormone therapy—but it is noticeable and the impact continues to grow as the therapy continues.”
She noted that in trans PLWH, she has seen improvements in viral load and CD4 labs after receiving hormone therapy, which she attributes in part to decreasing the burden on patients regarding coordinating multiple providers for care. She has also observed increased confidence and agency in some of her patients, which has helped them to become more assertive in other areas, such as negotiating condom use or leaving dangerous situations.
In recent years, there have been some major shifts in recognizing the importance of offering hormone care in the context of HIV care. Last December, HRSA (Health Resources and Services Administration) released a letter to Ryan White HIV service providers encouraging them to offer integrated hormone care to transgender patients living with HIV. A 2016 report from NASTAD (National Alliance of State and Territorial AIDS Directors) found that 16 state ADAPs (AIDS Drug Assistance Programs) include at least one gender-affirming medication on their formulary. And many HIV providers have chosen to provide gender-affirming hormone care, believing it is essential for them to provide this as part of primary care for their trans patients, rather than sending them to another physician for this important element of their medical care.
But stigmatizing attitudes toward gender-affirming care persist. Although 57% of HIV providers in one survey stated that they provide hormone care to their patients, some HIV providers who offer hormone care to their trans patients see this care as an incentive to keep the patients in HIV care, rather than as an important element of primary care on its own. A survey of trans people living with HIV found that 15% had experienced a provider restricting access to hormone therapy based on compliance with ART, and among individuals surveyed who were not currently virally suppressed, the percentage was even higher, at 28%. This reflects that even among providers who offer hormone therapy, there can be a misunderstanding of the role and importance of hormone therapy in the overall care of trans individuals.
Rebecca Green, LMSW, a former HIV program director in New York City, said, “I would caution HIV providers from gatekeeping gender-affirming hormone care or using, say, viral load suppression as a condition of getting hormones. Trans people living with HIV deserve gender-affirming hormone care, full stop.” Green also notes that the integration of gender-affirming hormone care with HIV care can be a team effort: “Train medical providers, nursing staff, and social service members of the care team (care navigators, social workers, etc.) to understand the importance of access to gender-affirming hormone care and have them be equipped to assist with any case management or care navigation issue that might arise.”
There are significant barriers to provider training regarding hormone care. Only 7% of HIV providers in one survey had received formal training in providing gender-affirming hormone care, though many more provided it. Additionally, even if care navigators or other social services staff have been adequately trained regarding transgender identities and cultural competence, further in-depth training may be required to prepare them to help their patients navigate common issues such as obtaining a legal name change, addressing employment or housing discrimination, and obtaining insurance coverage for gender-affirming care.
While ultimately the barriers to health care among trans individuals exist at a variety of systems levels and intersect with other systems of oppression, understanding the importance of gender-affirming hormone therapy for mental health in those who desire it is a key piece of improving HIV care delivery for trans people. HIV care providers must focus on reducing barriers to accessing gender-affirming care, and health systems must invest in creating environments that are appropriate and welcoming for trans individuals—which can include training staff at all levels of the organization as well as investing in electronic medical record systems that allow accurate reporting of gender identity and provide appropriate preventive care recommendations for people with trans bodies.
Instead of seeing hormone care as a distraction from HIV care or a tool to coerce patients into HIV care engagement, providers and health systems must recognize the vital role of gender-affirming hormone care for the mental health and well-being of trans individuals, seamlessly integrating this care into HIV care delivery as the important element of primary care that it is.
FINN SCHUBERT, MPH (he, him) is a writer, consultant, and former HIV program director living in New York City.