Send message to Authors

Paper short abstract

This paper examines how limited access to high-cost SMA medications in Chile fragments care infrastructures and citizenship, showing how judicialisation reshapes state relations, health coverage inequalities, and experiences of suffering.

Paper long abstract

This article examines how the introduction and limited accessibility of medications for Spinal Muscular Atrophy (SMA) in Chile reconfigure infrastructures of care, trajectories of chronicity, and the ways patients and families understand their right to health, citizenship, and life itself. In a context of high inequality and sociopolitical polarization around health, these treatments —approved by the Chilean Institute of Public Health but without state coverage— reveal a fragmented state that authorises biomedical technologies without guaranteeing the material and institutional conditions necessary for access, thereby deepening the gap between therapeutic promise and everyday experiences of care.

Drawing on fourteen months of fieldwork and qualitative analysis of legislative, institutional, civil society, and biomedical research documents, we argue that the emergence of these medications in the absence of a stable infrastructure of access produces new forms of vulnerability and agency. More specifically, we propose that the judicialization of access to high-cost medications generates fragmentation at multiple levels: within relations between branches of the state, as judicial intervention reshapes decision-making over access to treatment; within the health system, by producing significant differences in access according to the type of health coverage; and within experiences of suffering, embedded in the life trajectories of people living with SMA and their families.

This triple fragmentation shapes the everyday lives of patients and caregivers, redefining relations between citizenship and the state and turning life into a moral and political tool through which access to high-cost medications is contested and the state is addressed as a guarantor of rights.