“Providers are our frontline representatives of the healthcare system, and if their attitudes aren’t affirming of their patients’ needs to advance their own health, why would anyone feel empowered to ask for PrEP?” says Goedel.
Poverty affects adherence to PrEP in more basic ways, as well. In Detroit, community activist Racquelle Trammel says that she’s counseled folks who can’t store their meds or take them discreetly because they’re living on the streets. “If you’re having a housing issue, it’s going to be hard to keep score of your medications and take them confidentially,” she says.
Alternatives to the once-daily pill required by PrEP could help, like antiretroviral implants and injectables currently being tested as future treatments. These alternatives would cut down on the number of costly medical visits patients would need to make while also making it easier for them to adhere to a treatment regimen.
Jason Rosenberg, an activist and organizer at ACT UP, says that addressing big structural issues around access to the medicine is key to ending the epidemic. He says his group has its sights set on initiatives — like the decriminalization of sex work and Medicare For All — that intersect with HIV activism while addressing foundational problems with the American healthcare system. “Ending the epidemic is about so much more than PrEP,” he says.
Criminal justice is another big area of concern. At least 29 states, mostly in the Midwest and the South, currently have laws on the books that make HIV non-disclosure, exposure, or transmission a crime. These outdated laws have an outsized effect on those that the justice system already prosecutes: sex workers, black people, and those who use drugs.
Robert Suttle, an assistant director of the Sero Project, a group that works to end unfair HIV-related prosecutions, was sent to jail and forced to register as a sex offender after a vengeful former sexual partner claimed he’d intentionally exposed him to the virus. (Suttle claims that he’d disclosed his status; to his knowledge, the partner remained negative.)
“It’s a lesser-known felony, but because the laws are so broad, they leave a lot of room for interpretation,” he says. “And every time someone is prosecuted, it discourages others from getting tested.”
HIV criminalization laws have been successful overturned in California, and Suttle says he’s heartened by activists’ efforts to do the same in Indiana and Florida. “Our movement is getting bigger and stronger, and I believe more states will eventually come around.”
The tactful strategies that activists are employing today can seem like a far cry from the mass die-ins organized by ACT UP in the ‘80s. Take L.A.’s LGBT Center, which is now devoting a portion of its $120 million yearly operating budget to fighting HIV in South L.A. by carefully connecting with faith-based communities.
“We tend to speak to the women of the church because they’re just easier to talk to, and they help us navigate these conversations with the rest of the congregation,” says David Flores, a senior program manager at the Center. “From there, we link them up to the many services we provide, from primary care to STD testing.”
The Center is planning on opening a South L.A. campus early next year, Flores says, although he’s still reaching out to community members to get their input on what the campus will provide. “It’s still hard because HIV is related to sex and that’s a hard topic to discuss with communities of color. On top of that, there’s an overall mistrust of the medical community, and pharmaceutical companies in particular, because of their history of using us as guinea pigs to test out theories they had about different diseases,” he says.
Jeffrey Rodriguez, associate director of community health programs at the Center, cited apathy as another area of concern. “It’s a double-edged sword that some of the community doesn’t fear HIV anymore. I think they’re less concerned about accessing PrEP, using condoms or getting tested because they’re not being bombarded by images of death.”
Rodriguez, who began his activism in Michigan, vividly remembers when all the colleagues at his former organization became ill and started to die. “When they needed medical care, it was often a 45 minute drive to the nearest hospital,” he said. “And I was the only one who knew the area.”
He still feels a sense of urgency about ensuring communities of color have access to the newest treatments, which he says that the Center is making its top priority. “Back then, we could only be reactive,” he says. “Now we can engage with the community in a totally different way.”
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