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Health Rights and Rare Diseases in Brazil

Updated: Mar 19, 2021

The recognition of the right to health in Brazil, given by the Federal Constitution of 1988 (CF 88), is unequivocal and outlined with complete clarity: “health is a right of all and a duty of the State” (Arts, p. 198). This express recognition was accompanied by a set of constitutional provisions (Arts, p. 196-200) that defined fundamental guarantees to the right to health, highlighting the constitutional creation of the Unified Health System (SUS). The Unified Health System was thereby endowed with its own principles and guidelines, outlined to ensure that it was extremely democratic and humanistic, and including rights such as universality, equal access, community participation, regionalization, and comprehensive access to public health services.

Since then, the Brazilian State has developed a broad set of legal rules aimed at the more concrete configuration of SUS and the realization of the right to health, with emphasis on Laws 8,080 and 8,142 of 1990. The normative production in the field of health, defined by the Federal Constitution as a shared competence between the Union, the States, the Federal District, and the Municipalities (Art. 24, XII), allows all federative entities to publish legal norms aimed at the organization of the public health system, as well as legal norms that protect the right to health throughout the national territory. This intelligent division of competencies between Brazilian federative levels in the field of legislative production allows for the harmonization of general health standards by the Union, and at the same time, respects the regional diversities and the peculiarities of local health characteristics.

The rapid evolution of Health Law in Brazil was also accompanied by an increasing judicialization of the right to health. Since the 1990s, the right to health has been brought to the courts, in its most varied possibilities, reaching the year 2020 with significant numbers of lawsuits in progress (almost one million) to request medicines, surgeries, high-cost treatments, parenteral foods, etc. According to the survey “Judicialization of Health in Brazil: Profile of the demands, causes and proposals for a solution” (1), carried out for the National Council of Justice - CNJ by the Health Law Research Center of the University of São Paulo (Cepedisa/USP), in partnership with Insper, the phenomenon of judicialization in Brazil is broad, national, quite diversified, and encompasses multiple characteristics, and therefore should be permanently studied.

In this context, thirty-two years after the recognition of health as a fundamental right of Brazilians, Health Law has consolidated itself in Brazil as a field of specific knowledge to be studied, as is already the case in other countries such as France and Canada. Endowed with hermeneutical principles that are its own, Health Law presents itself today as the scientific field specifically aimed at understanding how the right to health can be effectively protected in democratic societies, encompassing normative, jurisprudent, and comparative studies.

Naturally intersectoral, the field of public health needs to dialogue intensively with other scientific fields, such as pharmacy, medicine, psychology, law, political science, nursing, etc. And it could not be otherwise, given the complexity involved in scientific production for emerging issues in this 21st century. Rare diseases emerge in this scenario as a topic that demands an even more dynamic approach because the treatment of patients with rare diseases requires highly complex solutions in the economic, legal, health, and social solidarity fields.

In this sense, the Social Pharmaceutical Innovation for Rare Diseases - SPIN Project helps to understand how modern societies can, in democratic environments and with budgetary and technological limitations, offer patients with rare diseases a treatment according to their needs, with due respect to the right to health and fundamental human rights.



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