SEATTLE — A study that started out looking at HIV risk behaviors and substance use turned into an opportunity for researchers to examine what it would take for young black men who have sex with men to try pre-exposure prophylaxis (PrEP) and stay on it.
"We got 125 young black men who have sex with men on PrEP, and hopefully they're all going to tell five of their friends," said Colleen Kelley, MD, from Emory University in Atlanta.
"It's a diffusion of innovation. It's a success," she said here at the Conference on Retroviruses and Opportunistic Infections (CROI) 2019.
One of the components of that success was having nonjudgmental conversations about PrEP with patients who were gay or bisexual, black, and younger than 29 years, she told Medscape Medical News.
In 2017, 53% of the young gay men diagnosed with HIV were black, despite the fact that they make up a tiny fraction of the total population. The combination of tight dating networks and unequal access to care and viral suppression means that, in some parts of the South, young gay black men have a 50–50 chance of acquiring HIV during their lifetimes.
When Kelley talks to these men about PrEP, it is often the first they've heard of it, she said.
This is consistent with the literature, which shows that young black men who have sex with men, and black Americans in general, know little about PrEP, and few consider it a good option for them.
One study showed that the low awareness of PrEP among black men who have sex with men in 2012, before it was approved by the US Food and Drug Administration, remained 2 years later (AIDS Patient Care STDS. 2015;29:423-430). In a 2018 survey, only 19.8% of black Americans at high risk for HIV knew about PrEP, and only 35.1% said they might take it (AIDS Behav. 2018;22:3576-3587).
Data presented last year at CROI showed that only 1% of black Americans who could benefit from PrEP were taking it, compared with 14% of their white counterparts, as reported by Medscape Medical News.
At this year's meeting, data from the Centers for Disease Control and Prevention (CDC) showed that not only do black Americans start PrEP less often, they stay on it for shorter lengths of time. For black Americans on Medicaid, the duration of PrEP use was just 4.1 months.
In 2015, Kelley and her colleagues began enrolling black men who have sex with men who were 18 to 29 years of age and lived in Atlanta in the EleMENt trial to look at HIV risk behaviors and substance use.
"Enrollment wasn't predicated on PrEP knowledge or PrEP interest," she explained. This was a general population."
In contrast, administrative data from the CDC, PrEP demonstration project data, and the Kaiser data all came from people who wanted to take PrEP, she pointed out.
The 299 EleMENt participants were offered PrEP at each quarterly visit, and 125 (41.9%) decided to take it at some point during the 24-month study period. Some men finally decided to take it "after being offered it five times," Kelley reported.
After a study participant was given a PrEP prescription, the researchers monitored whether he was taking it and, if not, why not.
Of the 125 men who started PrEP, 46 (36%) stayed on it without a break. However, for the remaining 79, it was a mixed situation: 25 stopped immediately and never started again and 54 stopped and restarted at least once.
The men were unlikely to ask for help if they hit a bump in the road or experienced adverse effects. It was up to the provider to ask, said David Serota, MD, also from Emory University, who presented the study data at CROI.
When they were asked, a common reason given for stopping was the same as a lot of young people: they didn't know how to interact with the healthcare system to get their needs met. For example, after running out of pills, many men did not know how to reorder; after insurance rejected a PrEP claim, many did not know what to do.
But adverse effects were also an issue. This "happened more often than I would have expected given my experience with people taking Truvada for HIV treatment," Serota said.
Kelley said she would like to explore whether some of the adverse effects the men reported were related to anxiety about taking an HIV drug, and not primarily physical.
"I don't have data for that," she said. "But I wonder."
Some of the reasons for discontinuation were not surprising. Men who were 22 years or younger were more likely to stop PrEP, as were men with fewer than three sex partners in the previous 6 months.
But other reasons were harder to explain. No matter how they sliced it, the researchers found that marijuana use was independently associated with a greater likelihood of discontinuation.
"I don't think anyone thinks this is a causal thing — like smoking marijuana makes you not take your medicine," said Kelley, but "I really can't explain why marijuana use was associated with PrEP discontinuation."
A sexually transmitted infection (STI) in the previous 6 months was also associated with discontinuation. This was a surprise because STIs are a marker that someone probably should keep taking PrEP.
Qualitative data just published by some of the researchers — including Kelley and Serota — could help explain this (AIDS Patient Care STDS. 2019;33:112-119).
They report that one man, after acquiring an STI, said, "No thank you. I'll just use the condoms."
This was more than just doubling down on condoms, it was "condom optimism," Kelley said. The thinking was: "I'm going to be better about using condoms."
This, she said, points to the need for ongoing and nonstigmatizing conversations about sex and HIV.
She does not come on strong, she explained. She feels out how her patients think about sexual health and their risks. She asks them what might scare them about taking PrEP and what the benefits might be. If the men tell her that they worry a lot about getting HIV, she suggests that PrEP could alleviate some of that anxiety. If they don't think they're at very much risk, she talks to them about how high HIV rates can be in parts of Atlanta, especially among tight-knit black gay dating circles.
For others, she suggests that PrEP could be "another thing they do to keep themselves healthy," like going to the gym, eating well, and taking vitamins.
"Doctors and primary care providers need to routinize sexual health screening. It has to be routine questions that are asked of everyone," Kelley said.
Seasons of Risk
Men also reported stopping PrEP because they were no longer in a relationship or because they started a relationship. As one of the men quoted in the qualitative study said, "If I'm not having sex, then why am I taking this pill that's going to protect me from HIV?"
This led Judith Auerbach, PhD, from the University of California, San Francisco, to wonder whether persistence should be the goal of PrEP use. It is not a problem when men stop because their risk drops; that can be a rational choice.
"We talk a lot about 'seasons of risk'," she said, which is the idea that people should use PrEP "when having sex under certain circumstances and with certain people."
Persistence is not necessarily the point, she noted.
Perhaps men who start and stop should be counseled on so-called on-demand PrEP, Auerbach suggested.
The Right Messages to the Right People
With this regimen, which has been studied in Europe, men take one dose of Truvada 2 to 24 hours before sex and one dose 24 hours after sex (Lancet HIV. 2017;4:e379-e380).
This is an avenue Kelley said she'd like to study next.
But there is another question that needs to be addressed, said Serota: What was it about those 46 young men who started PrEP and stayed on it for the duration? What makes them different?
Maybe the persisters all moved in the same social circles, said Auerbach. And maybe the narratives about PrEP that the persisters in the study told each other were different than the ones the nonpersisters told.
If there were a way to figure out which men need more support, and what kind of support they need, clinics could direct resources — money, health counselors, PrEP navigators — to where they will do the most good.
"In a setting with infinite resources, that might not be necessary," Serota said. But by studying the variables related to PrEP discontinuation, "we might also get some indication of the reasons for stopping and ways to target the right messages to the right people."
EleMENt was funded by the Emory Center for AIDS Research, with support from Gilead Sciences. Serota and Kelley report receiving funding from Gilead Sciences. Auerbach has disclosed no relevant financial relationships.
Conference on Retroviruses and Opportunistic Infections (CROI) 2019. Abstract TD-14 963. Presented March 7, 2019.
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Cite this: Young Black Men at Risk for HIV Underestimate Threat - Medscape - Mar 11, 2019.