Pre-exposure prophylaxis (PrEP) is the newest and most promising biomedical HIV-prevention intervention to date. PrEP has been shown to be anywhere from 92-99-percent effective at preventing HIV transmission. In short, it is a game-changing prevention tool with the potential to dramatically impact rates of new HIV infection and potentially even bring an end to HIV in our lifetimes.
Those of us who work in the field of HIV/AIDS and public health know that transgender women, in particular transwomen of color, as a population are disproportionately impacted by HIV. That’s why an article published last fall in the Journal of the International AIDS Society, revealing the critical role of gender affirmation in research and clinical practices, caught our attention. What this group of researchers found was that “PrEP demonstration projects and clinical trials have largely excluded trans women, or have not included them in a meaningful way.”
Clearly, if researchers and public-health professionals are not identifying or including trans women in clinical trials and research, medical providers are unlikely to fully understand the unique needs of trans women and how best to serve them, leading inevitably to sub-standard medical care for an already underserved community.
What’s the missing piece here? Why are trans women not getting the same access to or benefit from PrEP as, for example, gay cisgender men, to whom PrEP is aggressively marketed?
While transgender and gender-diverse figures in pop culture have received a good deal of exposure through the media in recent years, far too many trans women — and especially trans women of color — continue to be excluded from crucial social structures, resulting in a lack of access to health care, education and economic stability. The truth is that many trans women of color face extremely high levels of violence and harassment in their everyday lives. Access to consistent preventative health care from a competent provider who is well-versed in their specific needs and concerns is a luxury many of these women simply do not enjoy.
We encounter a similar gap with prevention efforts, which tend to focus on people engaging in sexual activity for pleasure. This angle neglects to support people who are engaged in sex work or who depend on “survival sex,” many of whom do so because of lack of access to other means of sustenance.
Furthermore, HIV/AIDS-prevention materials tend to primarily feature images of white cisgender people — despite statistics indicating that other populations are at higher risk — and often use language that is not inclusive of people that have lower English reading/writing literacy.
HIV/AIDS-prevention efforts that focus on “women” and/or “men” both exclude transgender women on the basis of genitals, gender presentation and rampant homophobia (and transphobia). Many of these efforts are based on assumptions — about anatomy, sexual activity and even terminology — that continue to exclude the more complex lived experiences of trans and gender-nonconforming people.
Further still, HIV/AIDS has not escaped the stigma that continues to attach to it, even 30-plus years into the epidemic. As a result, many people resist testing or treatment because of the terror of being at all associated with HIV/AIDS — again perpetuating the cycle of discrimination.
What can we, as health-care providers and educators, do to change this?
• Talk about bodies and sex and sexuality without judgment or stigma.
• Create information and materials that are trans-affirming in their content (language, imagery) and make them available through as many relevant networks as we have access to.
• Work to ensure that outreach staff and HIV testers and counselors, medical providers, everyone involved in delivering care and services, are educated and culturally competent with regard to transgender individuals. (As the authors of the article noted, “They will largely avoid settings that may result in stigmatizing encounters and threats to their identities.”)
• Facilitate the education of mainstream medical providers about PrEP: how it works, and who should consider it.
It is crucial that we as community members advocate for the health, well being and PrEP access of transgender women, including transgender women of color. And it needs to happen right now. As individuals, we may feel that we have little control over larger societal factors like job access, economic structures, and the healthcare system as a whole. But we do possess a weapon to advance PrEP access: ourselves. Each of us is a vector for information and thus we are vectors for access.
Imagine if every individual person that knows about Mazzoni and/or GILEAD and/or PrEP and/or nPEP (post-exposure prophylaxis) and/or HIV testing and/or STD screening (etc.) tells one other person what they know. That person is empowered to tell another person, and so on.
If every person well-versed in medical self-advocacy attended an appointment with a person who had not yet found their own empowerment, quality of care would skyrocket. If every doctor who was not knowledgeable about PrEP was able to network with a provider that often makes PrEP available to their patients, the network would explode.
We need to start talking about it, writing about it, signing about it, yelling about it, blogging about it. Think about that moment when someone offered you a solution to something you had been struggling with for what felt like forever; now, it’s your job to extend that love to someone else.
Simon Pedisich is a navigation specialist at Mazzoni Center.