Prevention Access Campaign Takes a Bold New Approach to HIV Prevention and Drives Home the Message that Undetectable = Untransmittable
by Chip Alfred
Photographed Exclusively for A&U by Alina Oswald
Bruce Richman says the time has come for HIV prevention to emerge from the dark shadows that the last three decades of stigma and shame have cast. The founding executive director of Prevention Access Campaign (PAC) believes the sun is rising on a new era in prevention, based on science not stigma. “This is the most exciting time in the history of HIV,” says John Byrne, managing director of PAC, a nonprofit organization that celebrates people living with HIV as well as how far HIV treatment and prevention have come. The seeds for PAC were planted in 2012 after Richman had an eye-opening visit to his doctor. Living with HIV since 2003 and undetectable since 2010, Richman was then told by his medical provider that being undetectable meant he could not transmit the virus to anyone else. Concerned that this information wasn’t being shared widely, Richman set out to disseminate that message to a broader audience, ensuring equal access to these facts for everyone. “Information that’s vital to our sexual and reproductive health can’t be a privilege,” he declares.
In 2015, with startup funding provided by Broadway Cares/Equity Fights AIDS, Richman established Prevention Access Campaign. PAC interfaces with community-based organizations, government agencies, and HIV prevention advocates to bring the most accurate, research-based information to high-prevalence and underserved communities across the nation. PAC takes a two-pronged approach to prevention, targeting populations most vulnerable to HIV as well as those living with the virus. PAC’s goals are to address these two premises:
The majority of people most vulnerable to HIV have not been informed about PrEP [pre-exposure prophylaxis] or PEP [post-exposure prophylaxis].
The majority of people living with HIV have not been told that with effective treatment they cannot transmit HIV to their sexual partners.
PAC collaborates with agencies to develop, share and produce co-branded social marketing campaigns for PrEP, PEP, and TasP (Treatment as Prevention). For example, a PrEP campaign created for Legacy Community Health in Houston was repurposed in Miami. A reimagined version of Harlem United’s “Swallow This” campaign for PrEP was later launched in Miami. Byrne tells A&U the agencies or communities that benefit most from this are those that lack the resources or infrastructure to launch a major media campaign on their own. “We don’t have to reinvent the wheel every time with each new program or project,” he says. Using Miami as a pilot market, PAC plans to build a network of culturally-competent community organizers in other cities. The objective is to find local influencers who are not attached to a specific agency or ASO to encourage collaboration rather than competition among local organizations doing similar HIV prevention work. In Miami, PAC has also presented Power of Prevention (PoP) parties, which start a dialogue, attract media attention, and integrate the messages about preventing HIV and ending stigma in a relaxed, informal environment.
In more formal prevention environments like HIV/AIDS conferences, Richman notes there has been “an explosion of PrEP information.” Byrne adds, “PrEP’s debut has left TasP in the closet.” When Richman attends these conferences, he says as a man living with HIV, “I take it personally. I know I’m not a danger anymore, but no one is talking about it [TasP] at these conferences.” He makes the argument that the universal message to prevent HIV needs to be “Undetectable = Untransmittable.” To clarify mixed messages, PAC created a consensus statement endorsed by the lead researchers from the major studies on the subject as well as other global experts, AIDS Foundation of Chicago, the National Alliance of State and Territorial AIDS Directors (NASTAD), and the New York City Department of Health and Mental Hygiene, among others. There has been some resistance to the use of the word “untransmittable.” Richman acknowledges that the scientific risk can never be zero, but it is negligible—so low a risk that it is statistically insignificant. The day I interviewed Richman for this article, he was unnerved by a recently published article that referred to the HIV transmission risk of a person with HIV with an undetectable viral load as “highly unlikely.” It may just sound like semantics to the general public, but to Richman and the scientific community, “negligible risk” and “highly unlikely” risk are two very different things. He emphasizes, “Unlikely means we’re still a risk to take into serious consideration,” stressing that this terminology does not reflect current scientific data. In August, 2016, Dr. Carl Dieffenbach, Director of the Division of AIDS, National Institutes of Health, stated, “Once you begin therapy and you stay on therapy, with full virologic suppression you are not capable of transmitting HIV to a sexual partner. With successful ART [antiretroviral therapy] that individual is no longer infectious.”
But despite the hope and optimism all of this brings, HIV prevention advocates are still haunted by the most pervasive enemy from the early days of the epidemic. “Stigma is a public health crisis and the greatest challenge we face in ending the epidemic,” Richman explains, adding that what PAC is doing is reducing stigma in an unprecedented way. “It’s a deep mental, cultural and social shift to acknowledge that people with HIV can have sex with or without condoms with HIV-negative people without transmitting the virus. The thought of gay men having condomless sex and couples conceiving babies without using alternative insemination practices is scary to a lot of people.” PAC is working to empower PLWH to take control of the narrative. “We’re providing meaningful information to people about their sexual and reproductive health that has tremendous impact on their quality of life. It also changes the perception of people with HIV and our perceptions of ourselves.”
Another PAC initiative centers around accuracy and responsible reporting of HIV issues in the media and other sources of HIV-related information, including medical providers. In partnership with the Human Rights Campaign, Accuracy Watchdogs includes a team of volunteers as part of the See Something, Say Something (S4) project. The S4 crew, comprised of medical advisers, activists and PLWH, identifies inconsistencies and stigmatizing language in HIV/AIDS communications then advocates for resolution while fostering unbiased, accurate coverage in all media.
Next on the horizon for PAC is the first major social marketing campaign promoting TasP. The creative elements, produced by Publicis, will be offered open source in the U.S. and Canada starting in early 2017. For now, Richman says his focus is to continue to get TasP on the agenda and ensure that PLWH take control of the narrative about risk. “Twenty years ago, we knew that treatment would keep us alive. Now we know it stops us from transmitting the virus to others.” Richman says he’s met too many people with HIV from all over the world who are suffering and struggling with the uncertainty of whether or not they are a danger to their partners. “Since realizing that I cannot transmit the virus, I’ve experienced a new sense of freedom and the lifting of many years of shame and fear. HIV won’t come between us and our partners and the people we love. This is a message we need to celebrate.”
Chip Alfred, A&U’s Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.