'It is scary to pause treatment': perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa.

Abstract

Background: HIV remains a major challenge in KwaZulu-Natal, South Africa, particularly for young women who face disproportionate risks and barriers to prevention and treatment. Most HIV cure trials, however, occur in high-income countries.

Objective: To examine the perspectives of young women diagnosed with acute HIV in a longitudinal study, focusing on their perceptions on ATI-inclusive HIV cure trials and the barriers and facilitators to participation.

Materials and methods: Between October 2022 and February 2024, we conducted closed-ended surveys and in-depth interviews with 20 women aged 19-33 living with HIV, who were willing but ineligible or unable to participate in an HIV cure trial.

Results: Many participants reported mental health challenges, including major depression (40%), moderate to severe anxiety (35%), and low self-esteem (35%). While women diagnosed during acute HIV supported pausing antiretroviral treatment (ART) during analytical treatment interruption (ATI) to advance HIV cure research, concerns about health risks and HIV-related stigma were significant barriers to enrollment. Trust in the research team and close monitoring were seen as positive factors, while fears around sharing of HIV/ATI status and transmission to sex partners complicated decision-making. Participants expressed a need for psychological counseling and access to community resources to manage ATI-related stressors.

Conclusions: Understanding women's perspectives on HIV cure research, especially ATI trials, is vital. Building trust and addressing psychosocial challenges through a healing-centered approach can facilitate trial participation. Socio-behavioral research before and during HIV cure trials will be essential to inform participant-centered protocol design.