In 2012, when the first drug for HIV prevention was approved, many advocates and providers thought we'd reached a new milestone: People could have "safer sex" with one pill a day that works as well as any latex barriers in keeping people HIV negative, no matter the status of their partners.
But six years later, we're still struggling to get pre-exposure prophylaxis (PrEP) to those who need it most. The Centers for Disease Control and Prevention (CDC) released new data on March 6 at the 2018 Conference on Retroviruses and Opportunistic Infections (CROI) in Boston estimating that only a small percentage of people most at risk for HIV infection have actually been prescribed PrEP.
More than a million people in the U.S. could benefit from the only drug we have available to prevent HIV infection, and yet only about 90,000 prescriptions have been written. The numbers only get worse when you account for race. While the CDC estimates that 500,000 African Americans and 300,000 Latinx people could benefit from PrEP, only 7,000 and 7,600 prescriptions were filled by blacks and Latinx people, respectively. While PrEP use is somewhat higher than these estimates indicate (demonstration projects, non-commercial pharmacies, military health plans and managed care plans were not counted), CDC notes that this study of commercial pharmacies likely accounts for 85% to 90% of all PrEP prescriptions within the U.S.
"One of our most powerful tools for HIV prevention remains largely on pharmacy shelves," said Jonathan Mermin, M.D., M.P.H., director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention. "PrEP can be a potent prescription that strengthens prevention options for people who are at high risk for HIV infection."
Related: PrEP Prescriptions Rise Sharply, but Unequally, in New York City
If PrEP is such a powerful prevention tool, why is it such a hard sell? For some, information about the drug may not be reaching them at all.
"We did focus groups with black and Latina women in Los Angeles, and we asked them, 'What is it about PrEP that is a turn-off for you?'" explained Danielle Campbell, M.P.H., of the Los Angeles Women's HIV/AIDS Task Force, who attended the CROI conference session where CDC data was presented. "You know the first thing they said? 'Well, what is PrEP? What are you talking about?'"
Campbell explained that they had to take a few steps back and explain PrEP to the groups, and then it became clearer: Women wanted to know more information about the potential effects of taking the drug, but that the larger barrier was that they didn't see themselves at risk.
"Women at risk would say to me, 'Well, I'm not at risk, I don't see any [public awareness] poster or things that reflect me, so there must be something that you're missing,'" Campbell said.
Cedric Gum, a CDC HIV Treatment Works Ambassador, who's worked as a PrEP navigator and community health specialist in Minneapolis, said similar things about his work to connect black gay and bisexual men to PrEP.
"One of the things I've noticed doing this work in Minneapolis is many black, same-gender-loving men I talk to have never even heard of PrEP," said Gum, who recently moved to the Twin Cities from Baltimore.
Gum also noted that there are stark differences between Baltimore and Minneapolis. He said that he found a greater number of black gay and bisexual men in Baltimore were more aware of PrEP and more willing to talk about it, but were desensitized to messages because they felt totally inundated with HIV prevention and treatment outreach being done by several organizations, with little coordination.
"In Baltimore, there are more organizations [than in Minneapolis] all competing to engage the same men over and over again, and the community is tired of being spoken to about HIV prevention and treatment," he said. "Until we're able to show them we care about them more than meeting our numbers [for] being tested or linked to PrEP, they will continue to avoid engaging."
But there are at least 7,000 African Americans who are using PrEP. While we do not have any research yet that explores the reasons why some people have decided to take PrEP, Campbell suggested there is one group of women in which she's seen the most willingness to take PrEP: women who are in a relationship with an HIV-positive partner.
"Women who are in sero-discordant relationships would say to me, 'Wait, this is available to me?' and 'Why haven't I heard heard about it?'" she said.
Many community-based advocates like Campbell and Gum are doing their part to reach people, one by one, and educate them about biomedical prevention. Both noted that the pace of biomedical prevention has gone faster than their ability to educate communities about the newest HIV prevention science. To support these efforts, Black AIDS Institute launched a new toolkit and campaign geared toward supporting PrEP knowledge and engagement for black women. But advocates and CDC officials agree that providers will play a large role in helping patients think about whether they're candidates for PrEP.
"Providers are the key to making this work," said Dawn K. Smith, M.D., M.P.H., M.S., epidemiologist and medical officer in the CDC's Division of HIV/AIDS Prevention (D-HAP). "First thing is to be doing routine HIV screening. Second thing is to find ways to collect risk behavior data in your clinic; trying to help patients to acknowledge that they are engaging in behaviors that might expose them to HIV -- and then the providers need to be prepared to hear that answer. One of the problems we have is providers saying, 'Well, my patients aren't like that,' or, 'My patient is married, and I don't need to ask them that question.' An easy way for providers to know who in [their] clinic might be a candidate for PrEP is knowing who has had STIs [sexually transmitted infections]."
Kevin Jones, the executive director of Urban Coalition for HIV/AIDS Prevention Services (UCHAPS), thinks the key to making PrEP more accessible is to make it an issue of social justice.
"Since the beginning of the epidemic, HIV has magnified the injustices that communities face," he said in an email statement. "Health activists and stakeholders must move beyond comfortable echo chambers and establish new relationships with local and national organizers who can share the PrEP message. We have to insist on the removal of any foreseeable barriers by encouraging more regions to follow Florida and offer PrEP for free."
On the same day the CDC reports were released, AIDSVu released its first state-by-state breakdown of rates of PrEP use, and it shows very clearly how few people are using PrEP, particularly in states with a high proportion of HIV diagnoses. One of the major drawbacks of the CDC data, and the AIDSVu maps, is that they do not include any data showing PrEP needs or usage among transgender people -- people who, despite little focused data from the federal level, are in fact affected by very high rates of HIV, according to independent studies and some state and local jurisdictions that track that data.