Managing Expectations of an HIV Cure: What Should We Expect?

Editor: The Potential Benefits of integrating social science research into global efforts to find cures for HIV infection have been widely evaluated. ¹ Accumulating cases of successful community engagement actions that may result from these social science approaches and conclusions could advance the field. Cases might illustrate how particular studies improved on the ground processes and intervention outcomes that people with HIV (PWH) care about. PWH have used—and continue to use—self determined roles to affect research agendas, endpoint determination, and research emphasis targeting underserved cohorts and population phenotypes, also in the cure era. That is history. The recent article by Zhang et al. in this journal may be an example of a good case of employing social science techniques but also raises several concerns. ²

Two study features are noteworthy. First, the team nurtured a community network in Guangzhou, China, to explore attitudes toward cure in that population. Locality matters. Attitude surveys should be repeated serially in low- and middle-income countries as the authors describe. Second, the team organized an inventive crowdsourcing contest to solicit information from a broad spectrum of participants. This was either a methodological boon to get information from people who might not otherwise participate or a flawed choice.

Only 20% of participants are characterized as PWH; the authors do not comment on the uncertainty of that percentage or overlap with other participant categories. “Local residents”—assumed not infected? relative of a PWH, a caregiver, unallied?—comprise 55% of participants. The question “‘What would an HIV cure mean to you?’” might be expected to yield different answers and conclusory interpretations from different motivational starting points and with different consequence. This circumstance is not discussed.

The authors express concern about the naive view shared by many that “cure” means a “sterilizing cure” when, globally, efforts are made to manage that construct. Yet their recruitment pamphlet uses a graphic of Timothy Brown, as the only known case of a cure, sterilizing by the way, to attract participants. Might there be some bias of comprehension or in management, especially when using Chinese language characters and perceptions linguistically rooted in pictogram communication? The publication alludes to this possibility but does not grapple with it.

The most serious concern lies in the lost opportunity to turn the eloquent and thoughtful range of collected participant responses into a program of agenda and biomedical research questions for scientists to tackle. The team concludes that more education, management of expectations, and inclusiveness are needed. Dozens of articles and oral talks have stressed this same and continually relevant professional response to the feelings of PWH and indeed to people with other serious diseases. We might ask instead in this case what PWH expect of immunologists, virologists, and clinicians rather than how they want to manage trial volunteers. ³ The answers given in this collection by the people of Guangzhou, properly translated into detailed experimental structures, could set a course to bring social and biomedical science into alignment.