Adherence as therapeutic citizenship: impact of the history of access to antiretroviral drugs on adherence to treatment

Abstract

A dramatic increase in the use of antiretroviral drugs in Africa has increased focus on adherence to treatment, which has so far been equivalent if not superior to that in northern contexts. The reasons for this exceptional adherence are poorly understood. In this paper, we examine adherence in the historical and ethnographic context of access to treatment in Burkina Faso, Côte d'Ivoire and Mali. Living where there is no social security and minimal, if any, medical care, individuals diagnosed with HIV are faced with the threat of illness, death, ostracism and destitution, and were obliged to negotiate conflicting networks of obligation, reciprocity, and value. HIV and AIDS programmes value efforts to address social, and indeed biological, vulnerability. In contrast, kinship-based social relationships may value individuals in other ways. These conflicting moral economies often intersect in the worlds of people living with HIV. HIV status can be used to claim resources from the public or non-governmental organization programmes. This may interfere with social networks that are the most stable source of material and emotional support. Self-help and empowerment techniques provided effective tools for people living with HIV to fashion themselves into effective advocates. In the early years of the use of antiretroviral therapy (ART), access to treatment was thus mediated by confessional practices and forms of social triage. We introduce the term 'therapeutic citizenship' to describe the way in which people living with HIV appropriate ART as a set of rights and responsibilities to negotiate these at times conflicting moral economies. Exemplary adherence should be viewed through the lens of therapeutic citizenship.

High levels of psychosocial readiness for ART in an African population at the onset of treatment

“…More attention towards the various and changing forms of social selection that influence access to new medications, for example Nguyen's study of West African confessional traditions akin to TASO's emphasis on status disclosure, would be useful for understanding adherence behaviour (Nguyen, Ako, Niamba, Sylla, & Tiendrébéogo, 2007).…”

Lay health workers and HIV programmes: implications for health systems

“…It is clear that they embody different and at times contradictory notions of access and entitlement, as well as expectations of patients, and ultimately, meanings of ''therapeutic citizenship'' (Nguyen, 2007). HCBC signals a limit to claims on the health system, even in its more generalist contemporary versions, and has lost much of the ideas of community mobilisation associated with earlier generations of CHW programmes.…”

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

“…This complexity generates new sites and moments of resistance, novel subject positions and identities and new experiential knowledges of HIV (Adam, et al, 2003;Adam, 2011;Davis & Squire, 2010;Doyal, 2013;Flowers & Davis, 2012;Kippax & Stephenson, 2012;Keogh & Dodds, 2015;Mykhalovskiy & Rosengarten, 2009;Nguyen, et al, 2007Nguyen, et al, , 2011Persson, 2012;Rosengarten, et al, 2004;Squire, 2012Squire, , 2013.…”

“…Re-framed by a promissory or enterprising language of expectation (Rosengarten & Michael, 2009), or 'treatment possibility' (Squire, 2012), antiretroviral treatments become less about treating current symptoms than reaping future health benefit (Clarke, et al, 2010). The imperative of living with HIV shifts from self-care in the face of illness to self-monitoring to maximise future health (Nguyen, et al, 2007;Squire, 2013).…”