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Paper short abstract

This paper presents research conducted with families of Pitt-Hopkins Syndrome patients in Brazil, in order to explore the gradual changes in the coordinated care services offered by the Unified Health System (SUS), as well as the ensuing health-related debts associated with the costs of treatment.

Paper long abstract

The experience of users of the Brazilian Unified Health System (SUS, Sistema Único de Saúde) reveals that effective access to publicly funded universal healthcare occurs through hybrid arrangements, in which public services coexist with medical insurance, direct payments, litigation, and various forms of credit. Thus the consolidation of a universal healthcare system has coexisted with the expansion of a private sector in face of limitations in supply, financing, and coverage of the public system. Private consultations paid for to avoid waiting lists, tests performed outside the public system to expedite diagnoses, and access to private therapies unavailable at SUS comprise a daily repertoire of care management that systematically has to rely on financial services such as credit cards, installment plans, and often loans. Chronic and rare conditions, as well as disabilities, make this hybrid regime particularly relevant. Unlike isolated episodes of illness, these conditions require continuous, multidisciplinary, and highly specialized care. The associated costs are cumulative and unpredictable. This paper presents an ongoing research project conducted with families of Pitt-Hopkins Syndrome patients in Brazil, a neurodevelopmental disorder that requires care ranging from neurology to physical and occupational therapy. Our aim is to explore the gradual changes in the coordinated care services offered by SUS for Pitt-Hopkins Syndrome patients, as well as the ensuing health-related debts associated with the costs of treatment. By doing so, we hope to shed light into the growing financialisation processes at the core of a universal public health system in a middle-income country such as Brazil.