Over the last few years, pre-exposure prophylaxis (PrEP) has been the focus of a huge campaign for HIV prevention in the United States, from billboards to buses, to radio slots, to social media and more. And with that promotional push has come funding. Governmental agencies, at least one pharmaceutical company and other health-focused funders have pushed money into PrEP education; that money has been used, in part, to create programs that filter into "high risk" communities.
When providers, pharmaceutical companies and funders come together to talk about and promote the use of a pill to deter HIV infection, that usually means action for on-the-ground prevention/intervention workers. We begin to see more focused cultural messaging in target communities, using gatekeepers or other cultural symbols. Fortunately, in part because of such efforts, these PrEP campaigns have created much more awareness of this prevention tool among LGBTQ+ communities, hitting even the most marginalized.
However, what was not the focus, and likely not considered, was true accessibility. Sure, accessibility in terms of the price of the drug, co-pays and other direct costs were roughly ironed out. Yet, I've seen that true accessibility, meaning the ability to have basic access at the most basic level of health care, remains absent for transgender women of color. And without understanding and really focusing on health care inaccessibility for transgender women of color, PrEP campaigns will never be fully successful.
PrEP's success should not be measured by quantity but by quality. The basic level of health care accessibility should allow people high-quality health care provided by premiere providers and frontline staff. Real quality requires programs that are geared toward transgender women of color with an understanding of identity and a focus on holistic health prevention. Existing issues with basic health care prevention can only cause further barriers to specific health care prevention such as PrEP.
Survival versus HIV Prevention
A basic conflict many transgender women face is figuring out how to survive and meet basic needs or figuring out how to stay HIV negative. Sometimes a focus on one creates an inability to achieve the other.
Many transgender women of color lack family or school support, leaving many homeless and in pure survival mode. With a lack of formal education, it becomes increasingly difficult to obtain more than entry-level or intense laborer positions, bringing economic and logistical challenges to accessing health care.
Creating further difficulty is the unrealistic process of changing ones' legal documentation. Transgender people's lives and experiences are minimized to a single diagnosis. For those girls, like me, who went through the Harry Benjamin days, we remember how horrible some of those therapy sessions were. In these sessions, a straight, usually white, cisgender person was (and can still be) the gatekeeper to hormones, name changes and, for some, surgery. Such therapists can ask invasive, othering questions just to provide a diagnosis.
Transient living is also a huge issue for many transgender women of color. Lack of stable housing, employment and resources push many into sex work. Sex work is not always a stationary practice. Traveling or "touring" provides more money and less congestion from other girls working in a respective area. Being the fresh face in a new city brings in the big dollars. Because of the constant movement around the country and the random times clients will call for services, time means something different. Casual observance of time and tardiness can make it difficult to stay on a daily pill regimen. And they make it especially hard to get back to ones' home city for appointments.
Our medical system is set up to assume that not adhering to medical regimens or appointments means patients do not value their health care. Value is placed on the guidelines developed by the institution, not the recipients. Interactions with this system can create distrust and cause transgender women of color to view health care as a barrier to their true selves.
Training Medical Professionals
In my work life, I am program director for an LGBTQ agency in Michigan. Part of my specialization is training medical professionals in LGBTQ sensitivity. In these trainings the biggest obstacles are the lack of value placed on patient-focused care and the sense of being too busy to truly understand transgender people, especially women of color. It's not that these soon-to-be-doctors or currently practicing doctors do not want to be inclusive. But, they assume that any change made to paperwork, policy or general vocabulary is too time-consuming.
Sure, doctors are ridiculously pressured by insurance companies to see patients very quickly, but many doctors assume that asking gender pronouns or placing pronoun options on paperwork places too much focus on a specific culture or a minority of patients.
They fail to realize that paperwork that does not allow transgender people to identify their gender or name prior to the first appointment is an act of violence. Any transgender person who has been called their dead name (name given at birth) in the middle of a packed medical waiting room knows the nervousness and horror of having to either respond to the name or publicly correct the frontline staff. These kinds of issues are not isolated but run concurrently with others faced at every major intersection in life.
It is in this world of inaccessibility, stigma and living in survival mode that PreP emerges, as the pushers of PrEP are attempting to focus on transgender women of color. Transgender women's access to PrEP can be drastically increased through research and prevention programs. Yet, this has not changed the greater system of inaccessibility. It has not changed the bias against transgender bodies of color or the lack of transgender-focused education outside gender dysphoria issues and the work of the World Professional Association for Transgender Health (WPATH).
PrEP is affected by a bigger set of goals and challenges around HIV prevention and intervention messaging. But so too are the "high risk" populations targeted for PrEP: each person is part of a bigger society that forces choices and options. Having to choose between food and sexual safety can be a scary, but normal, choice. And those who are pushing PrEP must understand that harsh reality. Only then can we focus on providing the appropriate foundation of health care and prevention for transgender women of color that will facilitate adherence and successful use of PrEP.