Paper short abstract:

In South Africa, there has been significant state investment in developing models of care for HIV, underpinned by notions such as treatment literacy and patient empowerment. The paper reflects critically on such ‘innovations’ in self-management and the extension of these to other chronic diseases.

Paper long abstract:

The South African Department of Health is proud of the national anti-retroviral (ARV) programme, which offers support to 2.7 million HIV positive people. This service has benefited from ear-marked resources and dedicated staffing. Models of care have evolved under the influence of notions of rights, patient empowerment and treatment literacy, which underpin the systems that aim to support long term self-management of illness. However, with time, concerns have developed regarding declining 'retention-in-care' in the ARV programme, an indicator of the number of people collecting medication and attending healthcare appointments. Moreover, there is political pressure to distribute budgets more equitably, by creating an 'integrated' chronic illness stream in health facilities and extending systems of the same standard as HIV for people with non-communicable disease.

Based on recent fieldwork in state health facilities in the Western Cape Province of South Africa, I critically examine the politics of integration of care for chronic disease and the search for 'innovations' on the part of public sector managers to improve adherence to treatment and to decongest facilities. One such measure involves implementing 'tiered care' for HIV by identifying 'responsible' patients who can be encouraged in self-management. I reflect on some of the assumptions underlying this identification of particular groups of people for differential care, and the challenges associated with reliance on self-care and community-based support in low-income settings. In conclusion, I consider the implications of divergent understandings of chronicity, recovery and the temporality of illness for epidemiological indicators such as retention-in-care.