Cascade of Refusal—What Does It Mean for the Future of Treatment as Prevention in Sub-Saharan Africa?

Abstract

Recent recommendations by the World Health Organization support treatment for all people living with HIV (PLWH) globally to be initiated at the point of testing. While there has been marked success in efforts to identify and expand treatment for PLWH throughout sub-Saharan Africa, the goal of universal treatment may prove challenging to achieve. The pre-ART phase of the care cascade from HIV testing to HIV treatment initiation includes several social and structural barriers. One such barrier is antiretroviral therapy (ART) treatment refusal, a phenomenon in which HIV-infected individuals choose not to start treatment upon learning their ART eligibility. Our goal is to provide further understanding of why treatment-eligible adults may choose to present for HIV testing but not initiate ART when indicated. In this article, we will discuss factors driving pre-ART loss and present a framework for understanding the impact of decision-making on early losses in the care cascade, with a focus on ART refusal.

One in 4 HIV-Positive South Africans Awaiting ART Initiation Report Condomless Sex With a Serodiscordant Partner

“…1 Despite this achievement, a proportion of South Africans who test HIV-positive and are successfully linked to care are not promptly initiated on ART, due to structural factors such as CD4 cell count-based treatment guidelines, 2 insufficient clinic staffing and resources, 3,4 and requirements to complete protracted HIV literacy training prior to commencing treatment; 5,6 as well as social factors such as treatment refusal, 7 which may stem from underlying feelings of wellness 8,9 or depression. 10 Patients falling into this treatment gap are unable to capitalize on the primary and secondary prevention benefits associated with ART's rapid viral suppression, 11–15 and continued sexual risk behavior among this subgroup thus poses considerable individual and public health consequences for the South African HIV epidemic.…”

Optimizing Test and Treat in Malawi: health care worker perspectives on barriers and facilitators to ART initiation among HIV-infected clients who feel healthy

“…Healthy individuals living with HIV may face additional barriers to ART initiation, limiting the impact of universal Test and Treat policies. Existing literature show that healthy clients may see little benefits to early ART initiation and instead, associate ART initiation with time and financial costs, as well as fear of unwanted disclosure and side effects [11][12][13][14]. However, only a handful of studies on ART barriers have been conducted after the implementation of universal Test and Treat [12,13].…”

“Treatment is not yet necessary”: delays in seeking access to HIV treatment in Uganda and Zimbabwe

“…Notable exceptions to this are the body of chronic illness research which has focused on time as a resource for accessing care and the competing priorities and commitments which impede the time a person may have to seek treatment (Dempsey, Dracup, & Moser, 1995;Schoenberg, Peters, & Drew, 2003). Although increasing attention is paid to refusals (Katz & Bangsberg, 2016;Katz et al, 2015) and 'lateness' in relation to ART (see, for example, Kigozi et al, 2009;Mocroft et al, 2013;Moreno, Mocroft, & Monforte, 2010;Mukolo, Villegas, Aliyu, & Wallston, 2013;Parrott et al, 2011), given the role time plays in the successful execution of the broad HIV prevention and treatment agenda, understanding what `late' might mean for an individual has not received so much attention. Clinically there is variation in how quickly some individuals need to get onto ART having been infected, with some people with an infection that progresses slowly effectively having 'more time' to initiate treatment.…”