Right to health and the national health policy for people with rare diseases in Brazil

Abstract

This article aims to contribute to the reflections about effectiveness of the right to health for People with Rare Diseases in Brazil. It is an effort which seeks to recover and move forward on some important points developed in previous works, pointing some fundamental issues to the full realization of the right to health for this particular population. By a qualitative analysis of the current applicable legislation, this paper addresses objectively the following aspects that determine the effectiveness of the right to health of people with rare diseases: (i) the current configuration of the legal concept of “health”; (ii) the extent of the duty of the state relating to health law in general; (iii) the role of public policy in ensuring the right to health and the strategy of standardization, by legal rules, the public health policies; (iv) the extent of the duty of the State to respect the right to health of patients with rare diseases, especially after the publication by the Health Ministry of the Act 199 of January 30, 2014, which instituted the National Policy for Healthcare for People with Rare Diseases and; (v) the challenges to society and the State in Brazil from now on.