A efetividade e o controle judicial das políticas públicas de saúde em relação às doenças raras

Abstract

Faced with the scarce coverage of rare disease treatments by the Unified Health System, the investigation tries to answer the question as to whether or not the incorporation by the Unified Health System of treatments for rare diseases. The objective of this study is to analyze the arguments - doctrinal and jurisprudential - regarding the judicialization of public health policies for the treatment of rare diseases. The social and scientific relevance of this research is justified by the lack of consensus in the doctrinal and jurisprudential means as to what parameters the courts should adopt in relation to the provision of health benefits - benefits which, to a great extent, are not contemplated by public policies of health care developed in Brazil - to patients with rare diseases, which gives rise to public outcry both regarding the task of delineating the limits imposed by the principle of separation of branches, and with regard to the scarcity of public resources. In order to achieve the objectives of this proposal, it is assumed that the norms of fundamental rights, among which are inserted the constitutional norms that protect the right to health, are endowed with cogency, which demands the action of the public agents towards implementation of its provisions. The investigation results in the proposal of criteria that contribute to the rationalization of the subject and, in a specific way, to support the argumentation used in the legal scope. The theoretical framework adopted is legal post-positivism, especially represented by the contributions of Alexy (2005, 2011) and Dworkin (2002, 2007). The mentioned references are used because of the theoretical improvement promoted by the authors regarding the theory of fundamental rights and the rationalization of the legal debate. The contribution of foreign literature has been associated with the national literature on the judicialization of public policies and the theory of fundamental rights. The deductive method was used to reach the results of this investigation. The study also analyzed regulatory frameworks related to public health policies and the development and access to rare disease treatments in Brazil and Portugal. The investigation of the decisions of the Federal Supreme Court and the Superior Court of Justice served as an indication of the jurisprudence of the Brazilian courts regarding access to treatments for rare diseases. As a result, the work highlights the strengthening of doctrine and jurisprudence to the arguments concerning the rights to life and health in relation to the treatment of rare diseases in the judicialization of public policies, although judicial decisions do not demonstrate a thorough knowledge of the functioning of the Unified Health System and the normative instruments related to rare diseases.