AIDS Research and Infectious Diseases, April 2020
Led by Dr. Eileen Scully of John Hopkins University and Dr. Rajesh Gandhi of Massachusetts General Hospital, A5366 is the first HIV cure-related clinical trial conducted entirely in women living with HIV. A5366 was presented at CROI 2020 and showed that women could both be recruited and retained in HIV cure research. Watch the full themed discussion here.
Of the 31 participants enrolled in the ACTG 5366, 29 agreed to undergo surveys and interviews to elicit their perspectives on the study (10 white; 18 Black/African American, 1 Native American). Almost all respondents reported positive experiences participating in A5366. The study also identified societal and personal motivators for participation, including the hope that HIV would be completely eliminated from the body, that they would never have to think of the virus again, and that they would not experience stigma for having HIV. Reimbursements to defray costs of study participation were reported by one-third of participants to aid in participation.
This paper showed that it is possible to embed participant-centered outcomes evaluations in ACTG studies. Moreover, these findings highlight the value of assessing psychosocial factors in participating in HIV cure-related research. The findings show us that people living with HIV join clinical trials for many different reasons and help us appreciate the lived experiences of participants. Greater attention should be paid to motivators that can help women overcome barriers of trial participation during the planning phase of clinical trials. Importantly, this study could help in the design and implementation of future HIV cure-related research efforts for women.
Dube K., Hosey L., Starr K., Barr L., Evans D., Hoffman E., Campbell DM., Simoni J., Sugarman J., Sauceda J., Brown B., Diepstra K., Godfrey C., Kuritzkes DR., Wohl DA., Gandhi R., Scully E.Participant Perspectives in an HIV Cure-Related Trial Conducted Exclusively in Women in the United States: Results from AIDS Clinical Trials Group 5366. AIDS Research and Human Retroviruses. 2020 Apr 09;36(4):268-282. doi:10.1089/aid.2019.0284. PubMedID: 32160755