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Antiretroviral Treatment (ART) refusal, among those who test positive, goes beyond the God-given right of a patient to refuse treatment. The psychosocial dynamics governing decision making are often related to social networks, perceived stigma, structural barriers, depression, and a need to balance the costs of potentially losing friends, family, and loved-ones if their HIV status is discovered.

Operationally, most clinicians and researchers have understood that there were losses in the “continuum of care” from testing to treatment, however lately more attention has been focused on those who are more vocal with their decision not to take Antiretroviral medication (“Active Refusers”) compared to those who may convey a willingness to take ART but do not actually take the medication. In talking with community health workers (CHWs), it is not uncommon to hear stories of family and community members who visit homes of patients who have passed, only to find bags of medication that was picked-up yet never used. The underlying question as to why patients would incur such effort and cost, but not take medication that would have potentially extended their life is one worth investigating. In understanding our patients’ decision processes and factors, we can better provide them with the information they need to make an informed consent and hopefully save their lives.

  • Katz, IT, Essien T, Marinda E, Gray G, Bangsberg D, Martinson N, DeBruyn G. Antiretroviral refusal among newly diagnosed HIV-infected adults in Soweto, South Africa. AIDS. 2011 Nov 13;25(17):2177-81. PMCID: PMC3272300

  • Katz IT, Ryu AE, Onuegbu AG, Psaros C, Weiser SD, Bangsberg DR, Tsai AC. Impact of HIV-related stigma and serostatus disclosure on HIV treatment adherence: systematic review, meta-synthesis, and conceptual framework. Journal of the International AIDS Society. 2013, 16(Suppl 2):18640. PMCID: PMC3833107

  • Katz IT, Dietrich J, Tshabalala G, Essien T, Rough K, Wright AA, Bangsberg DR, Gray G, Ware NC. Understanding treatment refusal among adults presenting for HIV-testing in Soweto, South Africa: A Qualitative Study. AIDS Behav. 2015 Apr;19(4):704-14. doi: 10.1007/s10461-014-0920-y.

  • Butler LM. NIH grant NIMH R34MH097563. CHAT: mHealth Innovation for HIV-MCHN Community Health Workers in South Africa.

Dominick A. Leone: Who is the Passive Refuser?

    ART Refusal