A atrofia muscular espinhal e a urgência na criação de normas que protejam a dignidade do paciente

Abstract

The present study proposed a reflection on Spinal Muscular Atrophy and all the difficulties it brings with it, especially due to the absence of specific legislation that guarantees patients dignified treatment. It was sought to highlight the role that the Public Administration must play before the public that has such a disease, notably in relation to the observation of the Principle of Human Dignity. In short, a perfunctory and descriptive analysis was carried out on Spinal Muscular Atrophy, it was shown how far the scope of the Unified Health System goes in its accredited units and the absence of specific legislation was pointed out. To assist in the study, jurisprudence, non-specific norms, doctrines, statistics and reports were analyzed. The results indicated that the availability of treatment (and its respective support) for patients, on the date of the aforementioned study, was not sufficiently satisfactory, making it necessary for changes to occur in the Brazilian legal system, so that people with SMA and their legal guardians can use resources that will mitigate the difficulties faced on a daily basis. It is an explanatory research, using a bibliographic review, with a deductive approach and bibliographic research.