THE CIVIL RESPONSIBILITY OF THE STATE IN THE TREATMENT OF SPINAL MUSCULAR ATROPHY

Abstract

Currently, it is estimated that there are between six and eight thousand recorded cases of rare diseases, 80% of which are of genetic origin. Among the research related to these conditions, those of a quantitative and biomedical nature stand out. In this context, the present article analyzes the civil responsibility of the State in the treatment of Spinal Muscular Atrophy (SMA), a rare and degenerative genetic disease that affects the nervous system by preventing the production of a vital protein necessary for the survival of motor neurons in the spinal cord. Given the high cost of the medications required for treatment, this study, based on the hypothetico-deductive method, seeks to analyze state civil responsibility with a focus on the right to health, human dignity, and the principles of the reserve of the possible and the equal consideration of interests, which advocates equal value for the interests of others compared to one's own. Furthermore, it highlights the lack of specific legislation on the subject, emphasizes the need for public policies directed at SMA treatment, and stresses access to health rights through the Judiciary. These analyses also examine, the jurisprudential interpretations of the Superior Court of Justice (STJ) and the Federal Supreme Court (STF) regarding the matter. Finally, it addresses the dilemma of expanding available resources to allow people with SMA to overcome the daily challenges imposed by the disease.