Representations and willingness of people living with HIV in Switzerland to participate in HIV cure trials: The case of gene-modified cell therapies. JAIDS
Recent advances made in cell and gene therapies for cancer suggest that they represent plausible strategies to cure HIV. However, the health risks and constraints associated with these therapies require a deeper understanding of the expectations of such treatments among people living with HIV (PLWH).
Gilles et al. explored in this study the perceptions of people living with HIV (PLWH) on gene-modified cell therapies (GMCTs) to gain insight into how they would decide to participate or not in such a trial by providing them with a precise description of the conduct of a GMCT trial.
They conducted 15 semistructured in-depth interviews among patients from 2 HIV units in Switzerland. After a conversation about their perceptions of research on HIV therapies, participants were provided with a trial description using a gene-modified cell therapy as a potentially curative approach. They were invited to discuss how they might consider participation in the trial.
Participants perceived the trial as burdensome and uncertain. Most were aware that cure was not guaranteed, and 6 of the 15 considered that they would participate. Two main concerns were expressed about potential participation: (1) the impact on the professional life and fear to be stigmatized because of this and (2) the fact that stopping antiretroviral treatment would challenge the balance currently achieved in their lives. The decision to participate would depend on their understanding of the trial, the availability of sufficient information, and the relationship with health care professionals.
In conclusion, the findings of this study show that PLWH overall do not have a clear and comprehensive understanding of GMCT cure–related trials. Indeed, when provided with a concrete summary of how the trial would proceed, participants were less likely to express altruistic motives. These results also confirm that PLWH perceptions about GMCT are deeply anchored in their personal struggle with HIV. Both stigmatization and the fear of losing a personal life balance built over time represent strong barriers to participation in HCRTs. These barriers and the unfamiliarity of PLWH with GMCTs should be considered when implementing these trials. As proposed, a patient–public involvement approach could allow researchers to consider these barriers in the early stages of cure-related trial development and to increase PLWH familiarity with these new techniques.