O acesso ao tratamento da Doença de Fabry no Sistema Único de Saúde e os pressupostos da Bioética Principialista

Abstract

The access to the treatment of Fabry Disease (FD) in the national health public system. Explanatory cross sectional research, centered on qualitative elements, performed with the professionals and patients that carry the FD, at the Clinic Genetics Ambulatory of the Gaffrée and Guinle University Hospital HUGG. An open and semi-structured interview was used as data collection. Its greatest objective is to identify the bioethics aspects involved in the access to the treatment of FB at Unified Health System, in order to do so, we intend to become the moral arguments of the ambulatory professionals manifest, regarding the existence of a public policy to the treatment of rare diseases at SUS. The Beauchamp and Childress Principialist Bioethics, in its prima-facia principles: the respect for the autonomy; the non-maleficence; the beneficence and justice, is taken as theoretical fundament for this study. The data was treated by means of Bardin s Content Analysis Method. The research contemplates the historical background of the main health public policy and its movements towards SUS formation, and the integration of the university hospitals in the health public system, in its legal frameworks. It also emphasizes the mobilization of the political and organized society seeking the materialization of the public policy concerning the Attention to Rare Diseases. The study found that the Justice and Beneficence principles emerged spontaneously, and occasionally implicitly, in the investigation subjects speech, in their moral justifications to the creation of a public policy to Rare Diseases. Moreover, it is outlined the course of the disease within the family, due to it being a hereditary disease. It is noted how the FD reached by chance these people, and how they accessed the diagnosis and treatment