Track D report by Carlos F. Caceres
This session was focused on the public
(community) engagement in science, with particular emphasis on community
participation in biomedical HIV prevention trials such as those concerned with
Pre-Exposure Prophylaxis and Early Treatment for Prevention.
After introductory remarks from the panel
chairs, Pedro Goicochea provided an account of interactions with the community
and their involvement in the iPrEx trial focused on MSM and transgender women
in several countries, and particularly in Peru and Ecuador. He also presented
data from a qualitative appraisal of ongoing participants in iPrEx OLE
regarding their motivations to either be on PrEP (e.g. trust in the drug,
access to care, reimbursements) or off-PrEP (secondary effects, lack of need
given condom use, post-trial access not assured).
Then, Cate McQueen presented an in-depth
analysis of issues that historically emerged in the PrEP trials, including the
first generation of such trials, some of them cancelled. She identified a
number of concerns that have emerged in providers and community members alike,
including low adherence and potential resistance, high cost, medicalization of
prevention, but also potential stereotyping, stigma and discrimination of
potential users (i.e. ‘Truvada whores’).
Finally, focusing on early treatment for
prevention, Kane Race questioned the presumed hyper-complexity of biomedical
prevention discourse, and posited that communities may produce rather complex
knowledge about HIV themselves, and are capable of participating in productive
dialogue about prevention.
This was a rich session with important insights
about the possibilities and channels of public (community) engagement in
HIV Prevention and Care Science.