What if HIV prevention made sense to Black women?
Pre-exposure prophylaxis, more widely known as PrEP, is a nuanced issue for women. While there is no question that they could benefit from PrEP, questions remain about why they are not accessing it. Among women, Black women followed closely by trans women, are the most disproportionately impacted by HIV. As a Black woman living with HIV, I am particularly sensitive to those facts.
Uptake for women is abysmally low, and there are a lot of reasons about why that is. Lack of awareness of PrEP, misinformation and disinformation about who is vulnerable to acquiring HIV and related stigma would be chief among those reasons. I didn't use the term "risk" in a deliberate attempt at a reframing of HIV possibilities. Outdated "risk framing" among providers and society in tandem with shame, guilt and bias (both conscious and unconscious) about pleasure for female-identifying people is also a factor in why more women are unaware of the benefits of PrEP. Clinician indifference, moreover, institutional and systemic indifference also play a role in why women are overlooked in the big picture of what PrEP could be. Resolving nuance requires recognizing differences and answering questions.
It would be dishonest for me to say I've never wondered if PrEP could have made a difference in my own diagnosis. It's not merely a question of whether it would or could have kept me HIV free. I had a full stream of consciousness conversation with myself at one point. Would I have taken it? That's irrelevant if no one would have told me about it. Who would have told me about it? My primary clinician or OB-GYN? That's doubtful. My primary care provider only ever asked the cursory questions about overall health and maybe about STIs. My OB only ever asked about pregnancy intentions and maybe STIs. For some reason, HIV, and its testing and prevention, are often treated as a separate conversation from other STIs unless it's a setting that is focused on HIV such as in an AIDS service organization/community-based organization, an LGBTQ+ center and some public health settings.
The now-educated advocate in me wonders why that is. Personal autonomy, less worry about my health and controlling my own narrative may have been compelling arguments for younger me to have more frequent HIV testing and consider ways to protect myself. Yet the previously HIV-negative woman never really thought about it, because she was never offered the option. Which brings us back to my original thought—would I have taken PrEP if offered? Honestly, I don't know.
Newer ads, studies and subsequent research efforts have tried to re-examine and reset early mistakes in reaching women... The change in mindset is slow—and frustrating.
I can't fully question why PrEP might have appealed to me without consideration of why it wouldn't. In reality, the why nots are likely a more realistic representation of why women don't choose it. Does PrEP make sense in the context of women's lives? PrEP was in the beginning, and often still is now, marketed towards gay men. It is portrayed as a sexy, sometimes fetishized, and sexually revolutionary choice. I hear from women that advertisements give the impression of hook-up culture, and in what is most frustrating for me—they don't feel represented or seen. Newer ads, studies and subsequent research efforts have tried to re-examine and reset early mistakes in reaching women. New marketing does show women and does imply freedom of choice and taking charge of their health and sex lives. The change in mindset is slow—and frustrating. I won't say too little, too late because outcomes matter. Women's health and well-being may be what is on the other side of the choice between a pill or injection.
I know that when I don't feel seen in situations, I must adjust my mindset and make a choice. Is it worth it? Does it mean enough to try to make someone see me? How do I get clinicians to see my need and offer me choices? Understanding the stakes helps and having someone to support you helps even more. Clinicians have to step in, institutions have to step up and systems have to work in order to see distinctions in motivation and ultimately, change Why not into I will, and Could it make sense? into It does.
Be well. You matter.
This blog was originally posted on Positively Aware's "Being Bridgette"
