By: Charles Stephens, Regional Organizer, AIDS United
Research is the most successful when scientists and community members work together. Innovation requires the best ideas put forth by diverse stakeholders. The urgency of our present moment necessitates that progress continues to keep pace with the epidemic. For that to happen we must insist upon the collaboration of scientists and community members in sharing information, engaging one and other, and mutually committing to doing their part in moving us closer to an AIDS free generation. Certainly this relationship is not always seamless, but it is definitely necessary. Such a collaboration was manifested beautifully earlier this week at a community discussion I attended.
Monday, March 4th, AVAC along with several partners including AIDS United, hosted a community discussion at CROI (Conference for Retroviruses and Opportunistic Infections). The forum was organized to connect local community members with researchers presenting at the conference. Dazon Dixon Diallo, Founder/President of SisterLove, Inc, which is also an AIDS United partner/grantee, and myself, AIDS United Southern Regional Organizer, were a part of the Atlanta-based planning team.
The event was held in downtown Atlanta not far from the conference. We wanted to ensure the space would be convenient to conference attendees and presenters, and accessible to community members. The Loudermilk Center, the space in which the event was held, is frequently used to host events targeting the HIV/AIDS community. It was very well attended, with 60 or more people present, and there was an excellent mix of community members, conference attendees, research advocates, and scientists.
In our work, the announcement of major research findings has a historical feel. Actually, perhaps all of HIV/AIDS work has a historical feel. We understand perhaps better than most, that history isn’t all grand battles and great events but a series of moving pieces and energies that are harnessed to create the magic that is social change. History is how many of us mark our work in the HIV/AIDS realm ….were you in Vancouver in 96?
One of the major highlights of the discussion was a presentation by Jeanne Marrazzo, an investigator on the VOICE (Vaginal and Oral Interventions to Control the Epidemic) trial. She presented the data earlier at the conference and agreed to attend our community discussion to present to the local community, take questions, and offer perspective.
The VOICE trial looked at the safety, effectiveness and acceptability of three HIV-prevention methods: daily use of a vaginal gel containing the antiretroviral (ARV) drug tenofovir; daily use of oral tablets containing tenofovir, and daily use of oral Truvada, a combination of tenofovir and another ARV, emtricitabine. Essentially the study showed that PrEP was not effective in reducing HIV infections among the heterosexual women being studied. It’s important to note that most of the women enrolled in the trial did not use the oral medications and vaginal gel as directed, prompting questions about adherence issues for this population. Another significant finding from the study indicated that those least likely to use their assigned product, single women under age 25, were also the most likely to become infected. A total of 5,029 women were enrolled in the study from South Africa (4,077 women), Zimbabwe (630 women), and Uganda (322 women).
The presentation of the VOICE results sparked a very rich and passionate discussion around barriers to accessing prevention, the role of gender in navigating research study participation, and how to build “desirability” among members of populations disproportionately impacted by HIV to participate in biomedical HIV prevention research studies. The fact that we were having this discussion in Atlanta, with its legacy of civil rights and social justice, was not lost on the audience. It seemed to animate it.
As the discussion progressed several audience members posed compelling questions and shared their feelings. There was palpable disappointment in the room, and yet there was palpable determination. To work in HIV research, advocacy or programming if nothing else is a continuous exercise in resilience. One of the possible next steps we discussed was continuing to think through dosing strategies and the burden and problem of adhering to daily regimen.
The Working Group on U.S. Women and PrEP also disseminated their statement at the discussion. The group is calling for U.S. government agencies to coordinate a national agenda that will quickly and accurately answer questions about how the antiretroviral (ARV) drug Truvada can best be made available as an HIV prevention option for women at risk of HIV infection.
The evening wrapped up with a panel that I was on. We unpacked the implications of the VOICE results and community engagement in general. There was robust discussion around research translation and community education in which audience participants and panel members offered their insights. The discussion was very powerful and provided an excellent starting point for further discussion and action around HIV prevention research implementation. That evening, we were not divided by institutional affiliation, methodology or discipline, but united as thought partners working together to save lives.