Do direito à saúde dos portadores da AME: análise jurídica face o princípio da dignidade da pessoa humana.

Abstract

The present study proposes to make a legal and social analysis about the availability of the drugs necessary for the treatment of Spinal Muscular Atrophy - AME. Rare and degenerative disease that prevents the person with the pathology to develop basic functions, such as walking, breathing, speaking and eating, among other limitations. The overriding factor in the debate on the topic is the high cost of the drug capable of treating the disease, Zolgesma, which is not available in the list of essential drugs, RENAME, by the Unified Health System. Although another drug such as Spiranza is also used and available in Brazil, its form of acquisition is subject to numerous implementation failures, causing AME patients to use the Judiciary to guarantee their protection of the medicine, which, through Judicial Activism, positively interferes in the promotion of the right to Cheers. Taking the following problematization into account: does the extent of the Judiciary's action in effecting constitutional guarantees affect the Principle of Separation of Powers? And as a hypothesis, we have that: No, Activism is essential and necessary for the realization of the right to health. Thus justifying the theme proposed, since, in the absence of a better performance by the Executive Branch, through public policies and viable strategies capable of meeting and guaranteeing the right to health and the availability of high-cost drugs, especially those with of AME, an activist position is required of the Judiciary, in addition, the non-realization of the right to health causes great impacts of the Rule of Law, mainly in relation to the violation of the Principle of Human Dignity. In view of the above, the research turns to analyzing Judicial Activism as one of the mechanisms to promote the dignity of people with AME. Therefore, the deductive method is used as a method of approach, starting from general cases of violation of the right to health, until reaching the cases of patients with Spinal Muscular Atrophy; of the historical-evolutionary, as a method of procedure, aimed at the analysis of an entire historical context on the right to health, outlining its evolution to what we now have as the right to health. And bibliographic research and documentary research, as research techniques, being bibliographic research, focused on the study of laws and doctrines and articles related to the theme, and documentary research, through the analysis of judges in which the right to health is discussed. AME carriers. Thus, the effective promotion of human dignity for patients with EBF depends, above all, on the public authorities enabling public policies capable of promoting the health of citizens through SUS, especially those with rare diseases, like the AME.