Thirty years ago, HIV was a death sentence with no vaccine, no treatment, and no cure. Its high morbidity and association with stigmatized sexual and drug-use behaviors led to the rise of HIV exceptionalism, the tendency to treat HIV differently from other diseases. Over time, a culture of HIV exceptionalism has profoundly shaped public perceptions, law, policy, advocacy, funding priorities, and the structure of health service delivery. A potential HIV cure signals a new chapter in this complex global story. The history of HIV shows that the social meaning of a disease - including how it is represented and policies surrounding its treatment and control - changes dramatically when it transitions from an untreatable disease to a treatable chronic condition. A further transformation of HIV from a treatable chronic condition to a curable disease will not only potentially decrease morbidity and mortality and contribute to epidemic control, but also alter how HIV is experienced, perceived and approached. Curing HIV is a strategic priority of the International AIDS Society and the NIH. Although HIV cure research is at an early stage, this is a critical time to conduct social and ethical research in order to inform subsequent research and ultimately guide pilot implementation of programs. HIV cure research will have unintended positive and negative implications that should be proactively explored. Some HIV control strategies such as male circumcision have been implemented with minimal research into their likely social and ethical implications, resulting in suboptimal uptake and missed public health opportunities. HIV cure clinical trials will predictably raise fundamental social and ethical questions. Anticipating the implications of HIV cure requires input from a diverse group of stakeholders who have the capacity to better understand unintended implications in order to prevent negative implications and expand positive ones. Building on strong links to ongoing cure research, social science/ethics research expertise, and global stakeholder links, we propose the following aims: (1) Develop a theoretical framework about HIV cure research and early implementation using historical, conceptual and ethical data;(2) Determine HIV cure stakeholder perspectives on cure research and early implementation in Cape Town, South Africa, Guangzhou, China, and Chapel Hill, USA;(3) Develop and assess the feasibility of an online forum to promote stakeholder engagement focusing on the social and ethical implications of HIV cure research. The inclusion of three sites creates an opportunity for powerful cross- cultural comparisons, helping us to identify cross-cutting themes about unintended implications. This research will provide a strong foundation for subsequent HIV cure research and early implementation in a number of settings across the world.
Curing HIV infection will increase life expectancy and alleviate co-morbidities associated with HIV infection and its chronic treatment. Social science and ethics research integrated with ongoing HIV cure research is essential for successfully achieving the long-term benefits of HIV cure.
|Tucker, Joseph D; Rennie, Stuart; Social and Ethical Working Group on HIV Cure (2014) Social and ethical implications of HIV cure research. AIDS 28:1247-50|
|Tucker, Joseph D; Volberding, Paul A; Margolis, David M et al. (2014) Words matter: Discussing research towards an HIV cure in research and clinical contexts. J Acquir Immune Defic Syndr 67:e110-1|