Embodied, clinical and pharmaceutical uncertainty: people with HIV anticipate the feasibility of HIV treatment as prevention (TasP)

Abstract

Evidence of the efficacy of HIV treatment as prevention (TasP) precipitated a highly optimistic global response and a radical redesign of HIV policy. Sociologists and others have framed TasP within promissory or enterprising discourses which require HIV prevention planners and people with HIV to engage in anticipatory assessments of risk and uncertainty. In 2013, I conducted focus groups with people with HIV in London, UK, to explore their understandings and anticipations of TasP. An environment of economic constraint obliged participants to triage clinical need and presentation, and they expressed scepticism about the sustainability of pharmaceutical investment in treatment innovation. These perceptions were informed by an embodied knowledge of HIV which implies a construction of health as a form of capital that is finite and must be conserved. This is contrasted with a biomedical construction of health as a form of capital that can be exponentially generated through investment. The imperative of conservation entailed by people with HIV’s anticipations contrasts with the speculative economy of biomedical production entailed in planners’ anticipations of TasP. Rather than researching ‘TasP acceptability’ and considering whether people with HIV’s behaviours constitute an obstacle to TasP’s effectiveness, we should recognise that people with HIV are already involved in shaping what TasP is, what it will be and ultimately how it ‘works’.

Keywords:

• HIV/AIDS
• people with HIV
• treatment as prevention
• embodiment
• biomedicalisation
• focus groups

Acknowledgements

I owe an enormous debt of gratitude to the men and women who took part in this study and shared so willingly their experiences with me. I’d also like to thank the Metro Centre and Positively East: the two HIV service organisations in London who gave so generously of their time to recruit respondents into this study.

Notes

1. The World Health Organization’s ‘Treatment 2.0’ document (World Health Organization [WHO], 2013) and 90–90–90 policy initiative seeks to ensure that by 2020, 90% of all people with HIV will know their HIV status, of whom 90% will be on sustained antiretroviral therapy, of whom 90% will have the virus in their blood suppressed, whilst the UNAIDS ‘fast-track’ initiative seeks to end the AIDS epidemic by 2030 (UNAIDS, 2014).

2. However, see my overview of the social science literature on TasP in the discussion section.

3. The groups took place just before the publication of new WHO guidance on commencing treatments in June 2013 and there was much anticipation of a radical change in this guidance, which is indeed what happened when it was published (World Health Organization, 2013).

4. This statement speaks to a common misconception regarding the impact of TasP implementation on the overall percentage of people diagnosed with HIV who are on treatment in the UK. In fact, the percentage of those linked to care and on treatment is currently already very high (90% overall or roughly 85% of those diagnosed) (Public Health England, 2014).

5. All of the quotations in this section come from the MSM groups. The notion of pharmaceutical uncertainty emerged in all of the African groups as well and the analysis presented here is derived from all six groups. However, the quotations that most clearly and neatly encapsulate meaning all emerged from the MSM group. In view of space and word limit, these are the quotations that are presented here.