ABSTRACT
This study presents the panorama of the treatment of rare diseases in Brazil, focusing on issues related to judicialization and the Health Economic-Industrial Complex. The legal and economic structures pertinent to the theme are analyzed, questioning the absence of articulated national solutions, which makes judicialization for the treatment of rare diseases the solution – inefficient and unsatisfactory, it is said – for complying with the device. Health as a right. In this context, strategies are debated to mitigate technological and economic dependence in order to sustain universal, integral, and equitable access to health. Methodologically, the perspective of the work is primarily theoretical, exploratory and based on documentary information and academic literature on the subject, going through the administrative rules, court decisions and explanatory texts on the subject in its legal, economic, and institutional dimension. In conclusion, it can be noticed that health spending can compromise a significant portion of the national budget, given the importation of medicines and other treatments. Therefore, the interaction between the Judiciary and the Executive branch and its technical executive bodies is urgently measured to provide a sanitary and economic rationality to the system, to ensure universal, equitable, and integral access to care for rare diseases.
KEYWORDS
Human rights; Rare diseases; Health's judicialization; National Science, Technology and Innovation Policy; Access to essential medicines