O tratamento de pessoas portadoras de doenças raras pelo SUS: o dilema dos altos custos do direito à saúde

Abstract

Based on explanatory, bibliographic and interdisciplinary research, using quantitative data and primary and secondary sources, this study analyzes the provision of medicines for the treatment of rare diseases within the Brazilian Unified Health System (SUS), focusing on the tension between the fundamental right to health and the principle of the reservation of the possible. Starting from the constitutional recognition of health as a right of all and a duty of the State, the research examines the normative scope of this right, its binding force, and the limits imposed by the scarcity of public resources. The central problem investigated concerns the extent to which economic arguments related to the high cost of treatments for rare diseases may exempt the SUS from its responsibility to ensure the right to health in the context of fiscal constraints. As a hypothesis, the study argues that although the State cannot act as an unlimited guarantor of rights due to budgetary restrictions, the reservation of the possible cannot be applied in a manner that undermines the minimum existential conditions of individuals affected by rare diseases, often functioning as an authoritative discourse. In this scenario, judicialization emerges as an inevitable consequence of structural deficiencies within the SUS, serving as a compensatory response to the insufficiency of existing public policies. The theoretical framework is grounded in Duarte’s (2012) contributions, which reject the possibility of establishing a uniform decision-making model for health-related litigation. Both automatic judicial activism and unrestricted deference to budgetary limitations are deemed incompatible with the normative force of the Constitution, requiring case-by-case decisions guided by proportionality and rational legal argumentation. In conclusion, the study emphasizes the need to reconcile the protection of the right to health with the financial sustainability essential to the maintenance of the public health system.