If We Build It, Will They Come? Perceptions of HIV Cure-Related Research by People Living with HIV in Four U.S. Cities: A Qualitative Focus Group Study

Abstract

Global interest and investment in the search for an HIV cure has increased. Research has focused on what experts refer to as a sterilizing or eradicating cure, where HIV is eliminated from the body, and on what is often called a functional cure, where HIV remains, kept durably suppressed in the absence of antiretroviral treatment and therapy (ART). Many believe that a functional cure is likely to be found first. HIV cure studies will require active participation by people living with HIV (PLWHIV). Their desires and perceptions will be important to effectively recruit study participants and for the uptake of any future strategy that demonstrates safety and efficacy. The perspectives of PLWHIV are essential to advancing HIV cure research, and they should be taken into consideration as biomedical research advances. We conducted 10 focus groups in four U.S. cities, eliciting perspectives of PLWHIV on HIV cure and cure research. Most participants conceived of a cure as eradicating, and felt favorably toward it. In addition to the physical benefits of a potential cure, participants valued the possible de-stigmatization related to no longer living with HIV, liberation from concerns about transmitting HIV, and freedom from the burden of daily medication. Many participants did not regard a functional cure as an improvement over controlling HIV through ART, were distrustful about viral rebound potential, and noted concerns about medical complications and accompanying psychological distress. Some felt that the risks of HIV cure research were not worth taking. Many were skeptical about science's ability to eliminate HIV from the body.

HIV Cure Research: Risks Patients Expressed Willingness to Accept

“…People's willingness to take risk for an HIV cure also goes beyond the clinical or health benefit, and the fact that people living with HIV are often quite healthy does not preclude the possibility that a cure would significantly improve their overall quality of life 9 . The value of a cure may lie in quality‐of‐life factors such as de‐stigmatization, liberation from concerns of transmitting HIV to others, and freedom from the burden of daily medication 10 . The risk‐benefit analysis of a participant must be viewed in the larger context of the individual's life experiences, rather than be dismissed as irrational or unrealistic 11…”

“…9 The value of a cure may lie in quality-of-life factors such as destigmatization, liberation from concerns of transmitting HIV to others, and freedom from the burden of daily medication. 10 The risk-benefit analysis of a participant must be viewed in the larger context of the individual's life experiences, rather than be dismissed as irrational or unrealistic. 11 Can the risk be offset by the personal and societal benefits of an HIV cure, and can one argue that taking substantial risk (even near-certain death) is a reasonable decision?…”

Lessons Learned From Failures and Success Stories of HIV Breakthroughs: Are We Getting Closer to an HIV Cure?

“…Sterilizing cure has its drawbacks, such as finding matched donors and potential transplantation complications (Xu et al, 2017). Thus, most of the scientific community believe that a sterilizing cure would not be feasible, and a functional cure is more achievable (Sylla et al, 2018).…”

Acceptability, motivation and the prospect of cure for people living with HIV and their healthcare providers in HIV cure-focused treatment interruption studies

“…Responses from questions comparable between PLHIV and HHP are summarised in Table 1 (12,13). The observed lower optimism for HIV among clinicians may also expound reluctance to enrol patients in their care into a HIV cure-focused study.…”