“You should be grateful to have medicines”: continued dependence, altering stigma and the HIV treatment experience in Serbia

Abstract

The expectation that universal HIV treatment access in resource-stretched settings will reduce stigma is a powerful aspiration that has been incorporated into a global rhetoric of hope around the HIV pandemic. Between 2005 and 2007, we undertook qualitative longitudinal research with people living with HIV/AIDS (PLHIV) in Serbia. We draw here upon the thematic analysis of prospective interview accounts of 20 individuals to analyse PLHIV's perceptions of the influence of HIV treatment upon their quality of life. HIV is one of few conditions in Serbia where its treatment is fully funded by the state. Inconsistent treatment delivery means HIV treatment is experienced as insecure. Competitive claims for stretched national resources interplay with a moral economy which sees PLHIV as “undeserving” citizens. The guilt and anxiety felt by PLHIV intersect with severely curtailed employment opportunities, which weaken the anticipated restorative and empowering properties embedded within the promise of universal HIV treatment access. Rationed expectations of patient or system instigated change mean PLHIV's efforts are orientated towards short-term individualised self-care, drawing on bureaucratic technologies to mediate their uncertainty. These factors integrate to create a specific cultural and historical context for an altered but continuing stigma towards PLHIV in this era of treatment. This case study cautions against neglecting the underlying structural process of stigmatisation that constrains the capacity of PLHIV to participate in anti-stigma and community organising activities, indicating that in this setting HIV treatment is insufficient alone to reduce stigma or enable major social and economic change in the everyday lives of PLHIV.

Keywords:

• qualitative
• stigma
• HIV/AIDS
• anti-retroviral treatment
• restoration
• productivity
• Serbia