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.

Highlights

  • Antiretroviral treatment (ART) has significantly reduced morbidity and mortality among people living with HIV (PLHIV) to the point where, with consistent access to and use of ART, they may assume a life expectancy similar to uninfected populations [1] and HIV is often considered a chronic illness

  • This paper reports findings from a research project in which Australian PLHIV were interviewed about issues likely to influence their willingness to participate in clinical trials related to HIV cure research, including the perceived impact that a cure for HIV would have on their lives

  • Despite HIV being a manageable condition for people with access to ART, a cure that eliminates HIV from the body would fundamentally change the lives of many PLHIV

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Summary

Introduction

Antiretroviral treatment (ART) has significantly reduced morbidity and mortality among people living with HIV (PLHIV) to the point where, with consistent access to and use of ART, they may assume a life expectancy similar to uninfected populations [1] and HIV is often considered a chronic illness. The lower disease burden has lessened the impact of HIV on affected communities with consistent access to ART. While ART improves immune function, it may not reverse existing negative health effects related to HIV infection. Toxicities associated with long-term ART may have a negative impact on health [1]. For these reasons, a cure for HIV is still considered clinically and strategically important [1]

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