From the earliest days of the AIDS epidemic, people living with and affected by HIV/AIDS have had leadership roles in advocating for research to find strategies to treat disease and save lives. This extends to prevention research, where HIV positive activists were among the first to call for expanded and better-funded work on an AIDS vaccine, female-initiated prevention methods, and many other strategies. These activists also spelled out the need for ethically designed trials that responded to the priorities and concerns of people and communities affected by the research. For more on the history of and reasons for community engagement in prevention research, and to read about a new guidance document on the topic, click here.
PrEP research is one of many fields of HIV prevention that has been shaped by strong activist voices from around the world. Some of the earliest PrEP studies generated heated debate and concerns from community groups who felt that issues of prevention and treatment for trial volunteers had not been adequately addressed. Trial sponsors, in turn, felt that their efforts to address community concerns were not recognized or understood.
As a result of these controversies, a trial in Cambodia was halted before it began, and a study in Cameroon was stopped after it had begun. Two other trials, in Malawi and Nigeria, also were stopped, but not due to community or ethical concerns. Community groups in Thailand continue to raise concerns about an ongoing trial there.
The events surrounding the PrEP trial closures catalyzed dynamic and ongoing debates about HIV-prevention research in general. A series of meetings and working groups met to grapple with questions about sponsors’ obligations to trial volunteers, minimum standards for community engagement, and other critical issues. Many of the reports from these meetings can be found on the Meeting Reports page.
There have also been community voices advocating for PrEP research and calling for trial timelines from sponsors. Groups like CHAMP and AVAC issued a letter to trial sponsors calling for a clearly-stated research agenda and for answers about what the current trials can and cannot tell us. The scientists’ reply provided valuable information.
These ongoing dialogues seek to ensure that research is ethical, responds to community concerns, and moves swiftly in order to respond to the realities of the epidemic. More informed advocates’ voices are needed to guide these and other critical discussions as PrEP and other HIV-prevention research moves forward.
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