The significance and expectations of HIV cure research among people living with HIV in Australia

Abstract

Most people living with HIV (PLHIV) with reliable access to antiretroviral treatment (ART) have a life expectancy similar to uninfected populations. Despite this, HIV can negatively affect their social and psychological wellbeing. This study aimed to enhance understanding of the expectations PLHIV hold for HIV cure research and the implications this has for HIV cure research trials. We interviewed 20 Australian PLHIV about their expectations for HIV cure research outcomes and the impact a potential cure for HIV may have on their everyday lives. Data were analysed thematically, using both inductive and deductive approaches. The significance of a cure for HIV was expressed by participants as something that would offer relief from their sense of vigilance or uncertainty about their health into the future. A cure was also defined in social terms, as alleviation from worry about potential for onward HIV transmission, concerns for friends and family, and the negative impact of HIV-related stigma. Participants did not consider sustained medication-free viral suppression (or remission) as a cure for HIV because this did not offer certainty in remaining virus free in a way that would alleviate these fears and concerns. A cure was seen as complete elimination of HIV from the body. There is an ethical need to consider the expectations of PLHIV in design of, and recruitment for, HIV cure-related research. The language used to describe HIV cure research should differentiate the long-term aspiration of achieving complete elimination of HIV from the body and possible shorter-term therapeutic advances, such as achieving medication free viral suppression.

Multi-stakeholder consensus on a target product profile for an HIV cure

“… 10 We intentionally avoided using language that could be misconstrued, such as eradication or sterilising cure, 11 , 12 or terms that are currently not well defined in the HIV community, such as remission. 13 , 14 …”

Ethics of HIV cure research: an unfinished agenda

“…Psychological harms include negative mental states and anxiety, such as the fear of developing drug-resistant HIV or passing HIV on to sexual partners as a result of no ART during ATIs [ 15 , 75 , 77 , 81 , 107 , 119 ]. Social harms encompass the risks of disrupting one’s social network and/or increasing stigmatization because of trial participation [ 100 ].…”

Bisexual Men Living with HIV: Wellbeing, Connectedness and the Impact of Stigma

“…Vigilance around disclosure of HIV status was a common experience for bisexual men in this study as revealed in open text responses. It is likely that this sense of vigilance and fear about disclosure has a wearing effect on mental health for many PLHIV [45]. Again, without a network of peers, many men in this survey may have limited experience of feeling supported as a person with HIV and limited opportunity to let down their guard in a social setting.…”