Will CURE trials introduce an uncomfortable revolution in the field of HIV research?

Keywords:

• Cure trials
• Epistemological break
• HIV identity
• Innovation

Since the start of the HIV/Aids epidemic, in the early eighties, innovations to cope with emergency have come one after another. They have always followed the same logic, that of improving upon current standards of care. Indeed, HIV care has been improved in terms of clinical efficacy, reduction of side effects, quality of life (QoL) of persons living with HIV (PLWH), and the patient–caregiver relationship. Today, HIV is considered as a chronic manageable infection in industrialized countries.¹ Medical issues are no longer a concern, replaced by the study of stigmatization and QoL. This continuous evolution has been made possible, thanks to a culture of mobilization – specific to the field of HIV – by different research, health care and civil society stakeholders.^2–4

The history of HIV is characterized by three periods: the pre- and post-triple combination therapy (1996) eras, and the arrival of biomedical tools for HIV prevention such as Treatment as Prevention and Pre-exposure prophylaxis (2010).^5,6 In contrast with the continuous evolution mentioned above, the IAS “Toward an HIV cure” initiative^7–9 may lead to a revolutionary fourth period. Indeed, current thinking regarding CURE trials reveals an epistemological break. These trials are particular in the context of the chronicization of HIV, in that they not only introduce risk taking but also provide little or no benefit, at least in the short term. The advances brought about from previous innovations, which today ensure controlled viral loads for a large majority of PLWH, are brought into question. Data from the French ANRS-APSEC survey^10,11 about PLWH and health professionals’ (HP) viewpoints regarding CURE trials suggested that one of the main barriers to trusting and participating in such trials comes from the perception of this epistemological break within a “comfortable” chronicity. This break also regards clinical practices, which are becoming increasingly standardized, thanks to evidence of treatment effectiveness. Furthermore, it affects the very identity of PLWH and HP by moving the disease from chronicization to cure/remission.

Despite representing a risky and “uncomfortable” innovation, CURE trials may mobilize PLWH and HP, given their HIV-specific culture of joint mobilization and sense of belonging to a community. Our data illustrated this point showing that one motivation for the implementation of CURE trials is based on the desire of a renewed “exceptional alliance”¹² directed towards cure-based innovations. It is exactly because of the fact that HIV chronicization is only recent, that not all PLWH have the disease under control, that there is still great dissatisfaction at several levels,^13–16 and that one of the fundamental aspects in the fight against HIV has always been to go that extra mile, that stakeholders will be able to mobilize. This activist engagement, not necessarily always linked to belonging to an activist association, means this epistemological break can be considered in terms of taking new unprecedented risks. In short, it is this activist engagement which may lead to the implementation of such CURE trials.

Funding

This work was financially supported from ANRS [France Recherche Nord & Sud Sida-hiv Hépatites – N° 14697]. The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

Acknowledgment

The authors thank Jude Sweeney for the English revision and editing of the manuscript.