PrEP Disconnect: What's Missing From PrEP Messaging?
May 7, 2018
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.
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:
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.
"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.
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."
* Name changed to protect privacy.
Charles Sanchez Charles Sanchez is an openly gay, openly poz writer/director/actor living in New York City. He has written for WritingRaw.com and HuffPost's Queer Voices. As a performer, musical director, and director, he has worked in venues ranging from Lincoln Center and off-Broadway to dinner theater in Arkansas. His award-winning musical comedy web series, Merce, is about an HIV-positive guy living in New York who isn't sad, sick, or dying.
This article was provided by TheBody.
Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)
The content on this page is free of advertiser influence and was produced by our editorial team. See our advertising policy.