HIV, PrEP, Gay Black Men and the Choice Gap

Justin A. Lofton
Justin A. Lofton
Toby Gilbert

I'll just come out and say it: I don't like condoms. But, as a 25-year-old gay black man living in the South (Nashville, to be specific), I also don't like that the odds of avoiding HIV are not on my side.

Which leads to my present story: In the summer of 2014, when I was 22, I was having a lot of condomless sex. I was also interning at My Brother's Keeper, a Jackson, Mississippi, nonprofit that aims to reduce health disparities, especially HIV, in people of color. Someone there said to me, "Hey, have you heard about PrEP?" (Which stands, of course, for pre-exposure prophylaxis, or the highly effective practice of HIV-negative people taking the HIV med tenofovir/emtricitabine [Truvada] daily to avoid contracting HIV.) This was offered to me free through a research study. I decided to go on it. I didn't want to be another HIV infection that the Centers for Disease Control and Prevention would count.

A year later, I moved to Atlanta with a boyfriend. We got HIV-tested together, and it turned out that he had both HIV and herpes. I assumed he'd had sex outside the relationship. I think that it was being on PrEP that kept me from getting HIV from him. Today, I'm in another relationship, and we're monogamous, but I've stayed on PrEP. I think you can love and trust someone, but loving yourself means you're taking the proper safety measures. PrEP means freedom and liberation for me, being able to be candid about who I am and sex-positive without fear. I used to wake up and say, "Uh-oh, what did I do last night?" and, now, I don't have to do that anymore. I feel as if I'm in control of my health. I have "say so."

Gilead, which makes tenofovir/emtricitabine, offers it free to anyone making under $58,000 a year if they can't get it through public or private insurance -- assuming they have a health provider willing to prescribe it and monitor them while on it. But, despite that, not enough HIV or health agencies, especially in the South where I am, are letting their HIV-negative gay black men at high risk for HIV know about this option. Recently, I talked to friends who work at five different HIV agencies throughout the South. They told me that many HIV-negative at-risk clients leave their offices without knowing anything about PrEP.

Also recently, as part of my job with the Nashville HIV agency Street Works, I was at a retreat where an HIV-negative gay black man in his early 30s told me that no one at the HIV agency he went to had ever told him about PrEP. Thankfully, other guys at this retreat were on PrEP and able to tell him that they felt empowered and in control of their own health by being on it. When this particular guy went back to his HIV agency and asked the staffer there why he'd not discussed it, the staffer said that he had a personal preference against it because it prevented only HIV and not other sexually transmitted infections. "So, you had info about something that could change my life but you didn't tell me?" the guy said in reply.

While I know I can't force anyone to take PrEP, educating them about the choice to do so should be at the heart of the prevention work we do. I would feel horrible if I hadn't talked to a client about PrEP and then learned that he had become HIV-positive. Some of my clients distrust going on a medication to prevent HIV. I say to them: "Hey, I know you have your perceptions, but would you allow me the opportunity to air them out with you? Your concerns are valid but I want to make sure you get the truth."

Doing that work isn't always easy. Many gay black men in the South who lack insurance -- and my state of Tennessee is among those that have not expanded Medicaid under Obamacare -- simply assume there is no way they could get on PrEP, which isn't true. Or, they don't want to have a discussion with their partners about the fact that they are interested in PrEP, not to cheat per se but to take responsibility for their own protection. Then, there is the matter of transportation. Many gay black men in the South live in rural areas far from care centers, and they don't have their own cars. Here at Street Works, we actually pick up our remote clients, bring them back to Nashville, then take them home.

Another challenge is not making gay black men feel like just a target for us to hit quotas demanded by grants that fund the work we do. We can end up oversaturating gay bars and making gay black men feel as if all we want is to give them a saliva swab test for HIV and, if they test negative, push them onto PrEP. They think we just want to hand them a $25 gift certificate for cooperating and don't care what happens to them next. I tell my staff that we need to consistently follow up with people, to ask them, "Where can we reach you for future events?" We have to stay in touch to make them realize that we're gay black men too. We have to ask ourselves what we would want if we were in their situation.

It's a cliché to say "knowledge is power," but there's a ton of truth in that statement. We know that giving clients information can help them make good decisions around their health. It's great for us in the field to talk about getting to zero HIV transmissions, but unless we let our clients know all the options, that's just talk.