Does ‘treat’ always follow ‘test’? Why some people do not want HIV treatment

Understanding treatment refusal among adults presenting for HIV-testing in Soweto, South Africa: a qualitative study.

Katz IT, Dietrich J, Tshabalala G, Essien T, Rough K, Wright AA, Bangsberg DR, Gray GE, Ware NC. AIDS Behav. 2014 Oct 11. [Epub ahead of print]

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.

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Editor’s notes: In many countries there is increasing pressure to bring more people living with HIV into treatment, by raising the CD4+ threshold for treatment access and advocating ‘test and treat’ approaches for key populations. While concerns are often raised about whether there are adequate supplies of drugs and the capacity of health systems to cope, the willingness of the key population to come on to treatment is seldom questioned. Why shouldn’t people want life-saving drugs? This paper is, therefore, extremely timely. The authors describe clearly and convincingly the reasons why men and women in South Africa may defer or refuse to access treatment.  People may hold the belief that treatment is only for the sick, and therefore someone who shows no signs of infection does not need pills. Some express concerns over the stigma associated with an HIV positive status while others profess their confidence in spirituality and faith. Antiretroviral therapy as a signifier of AIDS and approaching death is viewed as negative, not a life saver. Understanding the beliefs that stand in the way of treatment access is essential. Providing adequate support to help people come forward for treatment, and be sustained on treatment, is also important. The authors of this important paper document the barriers to engagement in care. Barriers which are not disappearing. We need to understand why some men and women do not want treatment and, as the authors note, test programmes that can ‘optimise engagement in care’.

Africa
South Africa
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