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Paper short abstract

This paper analyses the judicialization related to high-cost drugs in Chile, focusing on the case of Spinal Muscular Atrophy (SMA), where legal action against the State becomes essential for halting disease progression within a context marked by profound inequalities and unmet care needs.

Paper long abstract

This article analyses the experience of judicialization over high-cost drugs in Chile, focusing on the case of Spinal Muscular Atrophy (SMA). People with this condition, and their families, file a judicial recourse against the State based on the right to life, in order to be granted the possibility of halting the progression of the disease. Legal action against the State by those who rely on public health coverage reveals unmet care needs and deep inequalities in access to treatments, within a context of care poverty given by differences in socioeconomic status, where the right to health is not guaranteed.

Based on ethnographic research, we observe how litigation takes shape as an alternative infrastructure of care, sustained by networks that bring together people with SMA, their families, health professionals, lawyers, and civil society. These actors are part of a network; a connective history of legal and bureaucratic learning that seeks and negotiates access to care and the right to life. The findings are organized into three main themes: the process of obtaining and producing documents that demonstrate the need for the drugs; the formation of a connective network that integrates the embodied experience of illness; and the extension of litigation as an open-ended process.

We discuss the ways in which people with SMA appear before the State through legal representation, and how the need to resort to judicialization reveals structural uncertainties of care resulting from the absence of public policies that guarantee access to and provision of these treatments.