Financiamento público do tratamento da atrofia muscular espinhal e seu impacto social

Abstract

This academic work proposes a reflection about the access to high-cost medicines for the health of people with Spinal Muscular Atrophy, SMA. A rare, genetic and degenerative disease of the motoneurons that causes the disability to move diverse muscles of the body and provoke several other diseases in the lives of the carries. The Nusinersen remedy is a high financial coast drug that can slow down the disease process and improve these people’s lifespan. However, this medication was not available in the National List of Essential Medicines (RENAME) of the Unified Health System (SUS) making numerous families and carriers resort to judicial health processes. A new ordinance was recently opened, Ordinance nº 24, ensuring that only type “I “carriers were included in the listing. The universalization of social rights, through the Federal Constitution, following human rights presupposes the guarantee of the right to life and health promotion. Health here does not mean absence of disease, but the constant disposition of access to quality of life and social welfare. It is the role of the State to promote and flexibilize means so that the democratic principles are attended in an equitable way, through the observance of rights. The research carried out to construct this work was of a quantitative, exploratory and bibliographic methodological character due to the better attendance of the survey and the analysis of the hypotheses.