Published In

AIDS and Behavior

Document Type


Publication Date



Antiretroviral treatment -- Initiation, Patient refusal of treatment, AIDS (Disease) -- South Africa -- Treatment, HIV-positive persons -- South Africa -- Social aspects

Physical Description

17 pages


HIV treatment initiatives have focused on increasing access to antiretroviral therapy (ART). There is growing evidence, however, that treatment availability alone is insufficient to stop the epidemic. In South Africa, only one third of individuals living with HIV are actually on treatment. Treatment refusal has been identified as a phenomenon among people who are asymptomatic, however, factors driving refusal remain poorly understood. We interviewed 50 purposively sampled participants who presented for voluntary counseling and testing in Soweto to elicit a broad range of detailed perspectives on ART refusal. We then integrated our core findings into an explanatory framework. Participants described feeling “too healthy” to start treatment, despite often having a diagnosis of AIDS. This subjective view of wellness was framed within the context of treatment being reserved for the sick. Taking ART could also lead to unintended disclosure and social isolation. These data provide a novel explanatory model of treatment refusal, recognizing perceived risks and social costs incurred when disclosing one’s status through treatment initiation. Our findings suggest that improving engagement in care for people living with HIV in South Africa will require optimizing social integration and connectivity for those who test positive.


Author's version of an article that was subsequently published in AIDS and Behavior, vol. 19, no. 4, pages 704-714. The final publication is available at Springer via

At the time of writing, David Bangsberg was affiliated with Harvard Medical School, Massachusetts General Hospital Center for Global Health, and Ragon Institute of Massachusetts General Hospital.



Persistent Identifier