Perceptions of Risks and Benefits of Participating in HIV Cure-related Research among Diverse Youth and Young Adults Living with HIV in the United States

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Project Summary/Abstract Following the reported long-term HIV remission case of the Berlin patient, much research has gone into the biomedical discovery of an HIV cure and less inquiry into the motivations, perceptions, desires, needs, and experiences of the people for whom the cure is being researched. Prior studies have examined the perceptions of key stakeholders on the risks and benefits of HIV cure-related research. Although a few have explored this willingness in older people living with HIV (PLWH) to participate in this research, none have explored the willingness of youth and young adults living with HIV (YLWH). As the field of HIV cure research continues to grow, as data reveal the high HIV incidence among youth, and as PLWH continue to age (becoming ineligible for HIV cure research), YLWH will be at the forefront of decision-making on HIV cure-related research. Therefore, it is imperative to examine attitudes of YLWH who may perceive risks and benefits of this research differently from older PLWH and are most likely to be impacted by advances in HIV therapeutics. Understanding preferences and attitudes of YLWH towards HIV cure research is more critical than ever. The main reasons are that YLWH are less engaged in HIV care than adults, are less represented in HIV research, and are likely to be the most affected by decisions related to risks and benefits of cure strategies versus continuing antiretroviral therapy (ART). Furthermore, their perception of risks and benefits toward cure research are likely to be different from older individuals given that they have benefited from newer ART regimens that have low dosing frequency and few adverse effects. They may also have differing altruistic attitudes toward participating in HIV cure research compared to older adults having lived through a historically different period of time and who may have experienced the impacts of the domestic AIDS epidemic. Therefore, to investigate attitudes toward participating in HIV cure-related research among a diverse national sample of YLWH, we propose a mixed methods approach using quantitative and qualitative methods. Thus, our study aims are: Aim 1: To explore the level of knoweldge, interest, concerns, motivators, and deterrents of participating in HIV cure research among 18–29 year-olds living with HIV. Aim 2: To quantify willingness to participate in HIV cure research, motivators and deterrents of participating in HIV cure research, and responses to real-world HIV cure research scenarios among YLWH. These data will assist future researchers in the nuances of conducting research with YLWH, provide them with data on YLWH on which to base their HIV cure-related studies, and inform them of recruitment strategies; guide clinicians wishing to advise their patients about participation in HIV cure-related research; direct community leaders in community engagement methods; and allow the voices of YLWH to be heard by the medical and research communities.