MEXICO CITY – “What HIV has pointed out is that building it does not make them come,” Ambassador Dr. Deborah Birx noted at an opening night press event that highlighted persisting gaps in HIV testing, treatment, prevention access across the globe. When services don’t reach clients and communities, she said, people offering them have to ask why they missed their target. She offered a hint: “The client and the community need to be at the center.”
The leader of the U.S. President’s Emergency Plan for AIDS Relief was speaking the day after speakers throughtout the day at a pre-conference meeting examining international failures to link people with HIV to preventive tuberculosis treatment had argued a similar point, saying that while the essential role of client and community input into the design of health services targeting their needs had long been recognized, it remained far from realized.
The next day, Amb. Birx reiterated her point. This time the setting was a discussion of study results that had led to dolutegravir, an antiretroviral medicine strongly preferred for its effectiveness and lack of side effects, being withheld from women of child-bearing potential for the preceding 15 months until newer study results clearing the drug from linkage to birth defects showed that the medicine need not have been withheld. The 15 months of withheld preferred medicine had led to harm that couldn’t be reversed, speakers noted. Informing women of the potential risks of the medicine and providing them the opportunity to make informed choices would have made all the difference in averting those impacts, Amb. Birx and other speakers discussing the re-opened access to the drug said.
Where research and responses to HIV don’t reflect collaboration between science, community and policymakers Amb. Birx repeated, they won’t accomplish their potential value.
At this IAS science conference, nearly a decade has passed since clinical trial results from a Mazabuka, Zambia study of an ultimately ineffective HIV vaginal microbicide gel, presented to the press before being shared with study participants, led to a spate of rumors that the product tested had caused HIV – in some accounts, deliberately – effectively shutting down biomedical HIV research in the country for more than a year. A little more than five years have passed since initial results of a study to determine the effectiveness of an antiretroviral-containing ring designed for vaginal use showed that the odds of a woman who said she would use the device actually using it were “less than a coin toss.”
On Tuesday here, presenters in a session on Community Engagement in Research discussed the efforts they had made to elicit input from participants in cure, vaccine, and long-acting HIV prevention trials. In Thailand, a presenter shared, participants in a study tracing acute HIV infection told social scientists embedded with researchers that they felt “obligated” to participate. What they meant by that remained unclear. A pharmaceutical company representative recounted training for employees in Good Participatory Practice Guidelines for biomedical HIV prevention trials, developed by AVAC and UNAIDS in 2011, describing community involvement in efforts running a gamut from “trial design to trial results,” but not in product purpose, mode of action or design. Another presenter shared a chart showing high educational attainments among participants in a survey – more than a few with postgraduate degrees. It was an unusual group she allowed; funding constraints had prevented translating the survey, limiting potential participants to ones who could speak English. Another told of the studies in which she was involved that required monthly infusions of the preventive measure being tested, making strong community buy-in paramount to trial retention. She described efforts that included community input towards photos, videos, and language used in recruiting materials. The costs of those investments in engagement were not nearly what the costs of losing study participants would have been, the presenter explained.
Closest to an example of eliciting the participant input that community representatives have called for with increasing volume was a project described by the last presenter that included what was described as “end-user research to optimize adherence to long acting HIV prevention.” The project involved youth, the presenter said, in becoming “product designers” telling recruits “you will help us design a product that you, and youth like you would want to use.” Only missing from that presentation were the details of what youth had told them, and how it was factored into the resulting product.
All of the presenters had referred to educating participants, a moderator observed at the end. But he hadn’t heard a reference to the participants educating the researchers.