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.