People don’t live on the care cascade: The life of the HIV care cascade as an international AIDS policy and its implications

Abstract

This article analyses how the HIV care cascade, an analytical tool, has become a policy practice that determines the direction and content of international AIDS policy. It traces the development of the cascade through from its emergence around 2011 to its position framing global AIDS policy by 2018. The article distinguishes between the cascade model as a mapping tool and the care cascade as a policy that aims to end the AIDS epidemic. It then argues that the move from an analytical to a policy tool has important implications, both for the scope of policies and for policy-relevant research. It concludes by considering its implications in determining policy direction. The qualitative research that informs the article is based on published care cascade research and policy documents, and observations of the presentations and discussions at the 2012 and 2018 International AIDS Conferences (IAS). The article uses textual analysis to develop its argument.

Leaving no one behind? An equity analysis of the HIV care cascade among a cohort of people living with HIV in Manitoba, Canada

“…On the quest to generate evidence that can inform policy and program development aimed at minimizing health inequities, using cascade data, both aggregated and disaggregated, to identify inequalities in health outcomes and service access, delivery, and utilization is necessary, but insufficient. As Seckinelgin [6] and Zamora and colleagues [11] have argued, employing additional methodologies, such as qualitative inquiry and community-based participatory research, to inform policy and program design is crucial. When it was first introduced in 2011 by Gardner and colleagues [4], the spectrum of engagement of HIV care, which ultimately became the HIV care cascade, was framed as an analytic tool for mapping individual-and population-level progression through the continuum of HIV care services.…”

“…However, over time, the cascade, and its simplified counterparts, the 90-90-90 Initiative [7] and the 95-95-95 Fast-Track targets [33], have been adopted or endorsed by global technical and policy normative bodies (e.g. UNAIDS [7,33] and the World Health Organization [34]), and used to guide and influence international HIV policy development [6]. Expanding the utility of the cascade framework from an analytic tool to a large-scale decision-and policy-making framework is problematic because, as Seckinelgin [6] notes, "the model itself does not analyse the broader socio-political and economic conditions that interact with individuals' experiences of HIV and that inform their decisions to engage with health services" [6].…”

“…Over the past decade of HIV research, heavy emphasis has been placed on the HIV care cascade ("the cascade")-a framework and analytic tool providing insights into the continuum of care services for people living with HIV [4][5][6]-and its simplified counterparts the 90-90-90 Initiative [7]. Conventionally, cascades use aggregate data to illustrate the proportion of individuals in a population of people living with HIV who have been diagnosed, linked to HIV care services, retained in care, then initiated and sustained on HIV treatment to, ultimately, reach virologic suppression.…”

“…Exploratory multivariable logistic regression analyses are used to quantify these inequalities, generate hypotheses, and provide guidance for future cascade research in Manitoba. In conjunction with future research to understand why identified inequalities exist across the cascade [6] and how these inequalities contribute to health inequities [13], our examination of the cascade through an equity lens [18,19] will provide Manitoba's provincial care program with evidence needed to develop patient-centred care plans that meet the needs of heterogeneous client subgroups, and to advocate for policy changes addressing inequities in HIV care across the province.…”

On Trusting Neighbors More Than Experts: An Ebola Case Study

“…Previously, there were extensive medical debates about how low one's CD4 count 1 should be before beginning treatment. Importantly, when someone receives the piece of information that they are HIV positive and thus ought to go on treatment immediately, what they are receiving is heavily value-laden (both from the sciences and the health policy makers) and may run counter to the individual's own value-judgments (Seckinelgin, 2020). Perhaps the individual would rather delay starting treatment-being on ARVs can be unpleasant, it can be expensive depending on where one lives, and it may result in needing to go on more severe regimens sooner than if initial treatment had been delayed.…”