Background: In 2015, there were over 100 HIV Cure-related trials operating worldwide. Participation in current, and future, trials may pose health risks for people living with HIV (PLHIV), while being unlikely to deliver therapeutic benefit. As such, there is an ethical imperative for researchers to understand the motivations, expectations and understandings of potential trial participants. This paper reports on a survey of Australian PLHIV which aimed to identify:
· familiarity with HIV Cure research and optimism regarding achieving a cure
· anticipated benefits of cure
· socio-demographic and health-related characteristics of PLHIV who indicate willingness to participate in HIV Cure trials
· factors that moderate willingness to participate in a trial.
Methods: Data for this study were derived from a cross-sectional survey of PLHIV in Australia conducted in 2015/2016. There were ~800 responses collected via a self-complete instrument that could be filled-in online or using a ''pen and paper'' survey. The study was advertised through HIV organisations, relevant email lists, social media and websites. Analysis involved (1) multivariate hierarchical regression to identify factors associated with greater willingness to participate in trials and (2) non-parametric tests to identify participants'' expectations regarding HIV cure.
Results: Preliminary data analysis shows that not passing HIV to others and not being at risk of ill-health were the most desirable ''HIV Cure'' outcomes reported. Approximately 80% indicated willingness to participate in a trial. However, this was reduced if respondents thought participation could result in greater unpredictability of viral load, increased risk of resistance to current antiretroviral treatment, or increased susceptibility to illness. Belief that an HIV Cure would be achieved within the respondent''s lifetime was associated with greater willingness to participate in a trial.
Conclusions: These findings suggest that many Australian PLHIV are open to participating in HIV Cure trials. However, concern about possible effects on treatment efficacy and viral suppression clearly influences willingness, pointing to the importance of high quality informed consent processes. Optimism for achieving an HIV Cure may also influence willingness to participate. This is a further ethical concern as unrealistic optimism may be associated with misunderstanding of the therapeutic benefits of trial participation.