Rare disease patient associations in guaranteeing the right to health: strategies for interaction with the State

Abstract

The struggle of patient associations for the right to health is old and has been growing in recent years, especially with judicial means. However, this is not the only way to pursue the law, interaction with the State takes place through different channels and institutions. This article seeks to understand the main instruments and strategies used by Rare Disease Patient Associations to claim access to treatment for patients in Brazil. Were analyzed the interactions between the Associations and different state institutions in the period after the National Policy for Comprehensive Care for People with Rare Diseases, in 2014. Based on the collection and analysis of the data, it was found that the Associations have greater dialogue with actors at the state level, with the State Health Department being the channel most used by them, followed by the Judiciary. The results found are relevant for understanding how patient associations act in the struggle to guarantee the right to health.