This summer, the Food and Drug Administration approved Truvada—long used as a life-saving drug for people living with HIV – for use among adults with a negative status who are at high risk for contracting the virus.
The science and public health communities have heralded the drug’s use as a pre-exposure prophylaxis (or PrEP) as a potential godsend for certain groups, particularly young black men who have sex with men (MSM), who are experiencing a rise in HIV infections. Between 2006 and 2009, new HIV infections increased by nearly 50 percent among black MSM between the ages of 13 and 29.
But in the months since the FDA’s approval, some who work on prevention efforts in Black and low-income communities have urged PrEP proponents to pump their brakes. Interviews with advocates, service providers, policy experts, HIV testers, and people living with the virus reveal a range of perspectives. Some committed to fighting the spread of HIV are excited about the pill’s new availability as a prevention tool. Others worry about how it’s being rolled out in communities where distrust of medical systems runs high. There’s also a concern that the pill will be seen as a silver bullet that makes condoms and other safer sex practices unnecessary.
For Jeffrey King, a service provider and founder of In the Meantime Men’s Group in Los Angeles, the public health community’s cheerleading of PrEP was initially off-putting. The new approach felt like yet another wave in the sea of biomedical approaches to prevention.
“How can we participate in helping our community catch up with the science?” said King, who’s been testing and educating black MSM in South Los Angeles for more than a dozen years. “We’ve got the one-minute test now, we have the home test, we have PEP (post-exposure prophylaxis) and PrEP and all this stuff that’s rolling out of CDC around prevention strategies. But we have a community that is under-informed and undereducated.”
He’s since warmed to the idea and is talking with his clients about PrEP as one of many ways to stop new HIV infections. But King said service providers have a hard time doing their jobs as educators when they haven’t been able to weigh in on new tools early in the process.
“The overarching concern is that we are not always positioned at the table as black people at the beginning of this,” he said. “The consumer is often not sitting in the room to add the consumer perspective.”
For now, few HIV-negative people are using Truvada as a way to stave off the virus. There are multiple demonstration projects up and running, and PrEP is being prescribed to some whose partners have a positive status, mostly within gay male couples. But as the drug is rolled out more broadly, someone considering PrEP is sure to have a number of questions.
This week, Isaiah Webster III, a prevention manager with the National Alliance of State and Territorial AIDS Directors (NASTAD), got to hear some of the most pressing questions from members of the Young Black Gay Men’s Leadership Initiative, a group that generates ideas and solutions for addressing the HIV/AIDS epidemic within their community.
They want to see racially diverse participation in these demonstration projects and studies, Webster said. The young men also want to know more about the feasibility of the drug’s use given that it needs to be taken daily.
“We don’t have very good data to say what happens when you’re not adherent to that level,” Webster said.
Will people really take this every day?
This question around the average person’s ability to stick to a one-a-day regimen is top of mind for Maria Mejia, a Colombian activist and peer educator living in Miami. Mejia contracted the virus at age 16, more than 20 years ago, and is an HIV tester at Jackson Memorial Hospital.
She says she sometimes works with people there who test positive and then have a hard time finding drugs that will adequately treat the virus.
“Nothing works for them,” Mejia said. “And that’s because the person who was positive [who infected them] was not adherent. They tried one medication, the side effects were too strong, they tried another one.”
The issue of drug resistance as it relates to PrEP is complex. There’s not much evidence that an HIV-negative person who takes it sporadically due to side effects or for other reasons would develop a resistance to the drug and thus become unable to take it as treatment should he eventually contract the virus. But someone who’s unaware that he’s already HIV positive when he starts taking the drug as a preventive measure does run the risk of contributing to development of a strain of the virus that won’t respond to Truvada.
Inez Chambers, a 29-year-old woman in Miami who has been HIV positive for a decade, also has concerns about side effects. She thinks the drug will be a tough sell once someone with a negative status understands what his or her body will go through while on PrEP.
“I’m on a regimen that has the Truvada in it,” she said. “The stuff is nothing to play with.”
Over the years, the drugs she has taken have caused neuropathy (nerve damage) and constant fatigue. Chambers also worries that once Truvada becomes more widely prescribed, it could be presented as an option in a narrow and de-contextualized way.
“I’d be a bit more for making it available to people if there was a huge push for real, in-depth comprehensive sex education,” said Chambers, who has worked in Arkansas as an advocate for people living with HIV. “But without that, it scares the crap out of me.”
In the absence of that broader conversation, Chambers predicts that two distinct camps will emerge in the high-risk populations PrEP is meant to reach: Those she describes as quick-fix seekers who will take the drug without using other forms of protection, and those with historically-rooted fears of the medical establishment. In this second camp, references to the Tuskegee experiments are commonplace.
“In our community, there’s a load of us who still don’t go to the doctor,” said Chambers, who describes herself as of African American, Native American, and Irish descent. “There’s still that distrust there.”
The desire to confront these community norms drives NASTAD’s Webster, who works with the HIV and AIDS directors of state health departments, to speak to groups who work on the front lines of HIV prevention.
“We want to make sure we don’t have all of this misinformation taking root,” he said.
Webster added that many states are in the early stages of putting together their plans for how to educate medical providers and community-based organizations about PrEP. In 2013, these health departments will be developing educational campaigns for their states.
Other efforts are underway to get more data on how and whether PrEP can have a broader application with women. So far, it’s largely been discussed as a tool that will be good for MSM and sero-discordant couples. But in 2009, nearly a quarter of new HIV infections in the US were among women. Black women made up more than half of these new infections.
A national working group is implementing a survey targeted high-risk populations, including sex workers, intravenous drug users and trans women, to gauge their knowledge of and attitudes about PrEP, said Naina Khanna, Policy Director at Women Organized to Respond to Life-threatening Diseases (WORLD).
Khanna said PrEP could be groundbreaking as an HIV prevention tool that women can control, but that right now it’s unclear given the lack of studies on that particular community.
“We don’t know how well they’re going to work,” she said of the drug. “We don’t know what the long-term effects are.”