Direito à saúde dos portadores de doenças raras: da ineficácia das decisões judiciais ao fortalecimento da via administrativa

Abstract

Health is a fundamental right in which the State assumes the role of guarantor, and must formulate and execute economic and social policies aiming at the reduction of diseases and grievances, as well as ensuring universal and equal access to actions and services for promotion, protection and recovery, including drug distribution. In this sense, and in accordance with the guidelines of the National Policy for Comprehensive Care for Persons with Rare Diseases, the management bodies of the SUS provide for the free dispensation of exceptional medicines. However, because of the high cost to which they are associated, the supply of these drugs has occurred irregularly, sometimes being suspended without a return. Faced with this failure in the state pharmaceutical assistance, it is verified that the rare disease patients have filed lawsuits claiming them, based on the right to health, as it is denoted by the bibliographic and jurisprudential study carried out in this research. Although favorable judicial decisions have not been effective in practice since the absence of the drug persists in public pharmacies, which is why, given the ineffectiveness of judicial decisions, the strengthening of the administrative route will be maintained, so that people with rare diseases have qualified access to health, considering the satisfactory experience in the states of São Paulo, Rio de Janeiro and Santa Catarina, for example.