How Can Community Engagement Support HIV Cure Research?

What is Good Participatory Practice (GPP)? Already the gold standard of HIV prevention research, these guidelines provide blueprints for engagement with a variety of stakeholders in research design and implementation. This approach can forge pathways to addressing some of the more tenacious misconceptions around HIV cure research. One of these, AVAC's Jessica Salzwedel explained, is the lack of information about the expected timeframe for a cure.

In a cross-sectional survey exploring beliefs and attitudes regarding HIV cure research among 400 U.S. adults living with HIV, as well as interviews with 36 stakeholders, 8% believed a cure already existed, and 60% believed a cure would happen in 10 years or fewer. Rumors to this effect continue to circulate throughout the community and are fueled by misguided media headlines attaching the word "cure" to a range of non-cure HIV developments.

Community engagement in HIV cure research, guided by GPP, can combat this misinformation by opening dialogue between research teams and stakeholders to facilitate education and accurately translate HIV cure research language. Benefits of a GPP approach extend beyond debunking misconceptions, to addressing practical concerns and assuaging fears among would-be trial participants.

Education and transparency are key goals in building trust within a research site and the community in which it is situated, Salzwedel says. It is also essential that all stakeholders connected with HIV cure research are aware that future populations, not current participants, will reap the direct benefits of early-phase HIV cure research.

With HIV cure research on the horizon, explore some of the other top ethical questions being asked in advance here.