PrEP Disconnect: What's Missing From PrEP Messaging?

Contributing Editor

Last week, I was on the phone with an old friend calling me from Texas. Gaby* and I have been friends since we were kids. Still handsome in his late 40s, Gaby relished every detail as he confided a tale of a recent scorching-hot bareback hook up with a stranger. But, because the sex was condomless, it left him worried and wondering whether he'd run the risk of contracting HIV.

"Well," I asked, "do you know whether he is living with HIV or is on PrEP [pre-exposure prophylaxis] for HIV prevention?"

"No," he answered. "Are you on PrEP?" "No."

I incredulously asked, "Why the hell not?"

"Well, that kind of hook up isn't going to happen again." (Yeah, right!) He continued, "And besides, PrEP doesn't protect you against other STDs [sexually transmitted diseases]."

"Other STDs aren't HIV. Other STDs aren't killers," I said. "I mean, what's a little syphilis between friends?" I was joking, but I couldn't believe that someone who came of age during the AIDS crisis and had lived in big cities from Phoenix to Washington, D.C., to Dallas had such a narrow scope when it came to PrEP.

Related: The PrEP Cascade: Getting More Blacks Into Care

I thought it might be generational, so I asked a few younger people. I mean, the young folks are more shrewd and in the know, right?

Mateo* is a handsome, 28-year-old gay man and teacher in my inner circle. When I asked him whether he was on PrEP, he said that he wasn't sexually active enough to need to be on it. What's "active enough?" If it takes only one time to expose you to the virus, when do you need to be protected?

I asked another young person, 22-year-old Sofia*, a striking queer trans woman of color. She answered that she had been on PrEP for a short time previously but decided to stop because she wasn't having a lot of sex and the medication made her nauseous. "After I became more (sexually) active," she said, "I still didn't consider it, even though I occasionally hook up with strangers." She added: "I'm aware that I run the risk of contracting HIV, but I try to be cautious. PrEP is not for me right now."

Huh. From this diverse and decidedly unscientific survey, it seems as if there's a real disconnect when it comes to PrEP, the populations that need it, and messages to them about it. Addressing this point, Sofia said, "I'm sure that, to some extent, the trauma of getting HIV/AIDS as a queer person is why PrEP is meant to appeal to LGBTQ-positive folk." Exactly.

According to a study released in March from the Centers for Disease Control and Prevention (CDC), only a small percentage of people in the U.S. who could benefit from PrEP are actually prescribed it, and those most at risk are people of color. CDC researchers found that, although African American and Latinx people comprise two-thirds of those who might benefit from PrEP, these populations had the smallest percentage of PrEP prescriptions. They reported:

[I]n 2015, approximately 500,000 African Americans and nearly 300,000 Latinos across the nation could have potentially benefited from PrEP based on CDC clinical guidelines. However, only 7,000 prescriptions were filled at retail pharmacies or mail order services for African Americans and only 7,600 for Latinos[.]

While the prescription gap among whites was smaller, CDC researchers still called it "considerable." "Of approximately 300,000 whites who could potentially have benefited from PrEP, only 42,000 prescriptions were filled at retail pharmacies or mail order services," they said.

What the wha?!

As a person already living with HIV (I was diagnosed in 2003, well before the U.S. Food and Drug Administration approved Truvada [tenofovir/FTC] for PrEP in 2012), PrEP is a moot issue for me. But for my community, it's a scientific breakthrough. Why aren't more people taking PrEP? Why is there so much resistance to taking PrEP? If a pill that can keep you from acquiring HIV had come out in the '80s or '90s, in the midst of the AIDS devastation, it would have been called a miracle. What makes it less of a miracle today?

I reached out to some experts on PrEP messaging to find out what's being done to reach diverse communities with HIV prevention choices. I wanted to find out what's working and how different communities are being targeted for PrEP outreach.

My first call was to sex-positive therapist, author, and PrEP advocate Damon L. Jacobs. A New Yorker, Jacobs travels all around the country to talk about PrEP and other harm reduction issues.

"Well, the first issue is that we don't have a media that covers PrEP. We don't hear about it in the news," Jacobs said. "If it doesn't bleed, it doesn't lead, so if it's not sensational, it's not happening [in the news]."

Jacobs also acknowledged the stigma and shame still surrounding the topic of sex in general -- and specifically condomless sex. "People think protection is moral instead of medical," he said. "There's a schism of logic where people think: 'PrEP is not for me,' or 'PrEP is just for sluts.'"

He also said that around the U.S., PrEP isn't normalized, people don't hear about PrEP regularly, so people don't talk about it. In New York, the Department of Health has posters promoting PrEP plastered all over the five boroughs -- on bus stops, in the subway -- but this kind of advertising isn't the norm countrywide.

New York City Department of Health PrEP posters
New York City Department of Health PrEP posters

To get an idea of what's happening outside New York, I reached out to Lee Storrow, executive director of the North Carolina AIDS Action Network (NCAAN). Storrow said: "We are obviously very concerned consistently here that in communities of color and lower income communities, people who are good candidates for PrEP perhaps don't have access to it. I think part of it is truly that people don't know about it and that those communities aren't talking about it."

Part of the challenge, Storrow said, is battling the high rates of HIV not only in the state's major cities --Charlotte, Greensboro, Durham -- but also in the northeastern, rural parts of the state, which tend to be made up of lower-income communities with a higher percentage of people of color. "You know, there is a real stigma in those communities about talking about LGBTQ issues, talking about sex," Storrow said. "And so talking about PrEP? It's just not a conversation."

To address that issue in North Carolina, Storrow and others from the NCAAN have reached out to state lawmakers to try to get government funds to invest in PrEP education. "I have had conversations with a couple Republican legislators, who are the majority party in North Carolina, about increasing investment in PrEP education," Storrow said. "We really focused on the data and the evidence about why this is an important intervention, and have had some really thoughtful responses and some tentative support ... for a state appropriation."

Storrow also brought up two great points about PrEP messaging: one, a lot of messaging is geared only towards men who sleep with men, leaving out women and transgender people; and two, when it comes to public health messages about PrEP, there's a real squeamishness about using words like "barebacking" and "breeding" and any language that might change people's use of condoms. "You know, I think there seems to be a disconnect often between HIV work in general," Storrow said, "and talking about sex and the kinds of sex that people actually have."

Nikole Trainor is the PrEP health educator for the San Francisco Department of Public Health. I wanted to know how a big city like San Francisco approached PrEP public education. Trainor told me that they've had misses in public campaigns for PrEP, so in designing a new campaign, they sought input directly from the community they were trying to reach.

"Having strong community input to develop the campaign message is very important. We have to consult with the gatekeepers and liaison within the community," she said. Their new campaign is geared toward Latinx and black gay men and trans women of color. For it, "we focus on positive influences, as well," Trainor said. "So that means, if the mother knows about PrEP, if the father knows about PrEP, if a trusted sister or a cousin or auntie or your best friend knows about PrEP, our party population will often know about PrEP, because these are trusted sources where people are getting their information from."

San Francisco Department of Public Health PrEP posters
San Francisco Department of Public Health PrEP posters

PrEP, like many HIV issues, is under-discussed and misunderstood. At least we have these powerful advocates and people like them fighting the good fight to get more information out there on the value of PrEP. And each of them are not only PrEP champions; Jacobs, Storrow, and Trainor are all PrEP users. That's a powerful way to influence a community: by being a visible example.

* Name changed to protect privacy.