Quanto custa uma vida? A judicialização da saúde para acesso ao medicamento Eculizumab (Soliris®): uma análise sobre a responsabilidade da União de fornecer o medicamento para os portadores de Hemoglobinúria Paroxística Noturna (HPN)

Abstract

The objective of this research was to analyze the main arguments of the Public Authorities not to supply the high-cost drug brand Soliris® used to treat patients with the rare disease Paroxysmal Nocturnal Hemoglobinuria (PNH). Based on these arguments, a coherent analysis was developed on the conflict created between the individual right and the sovereignty of the collective rights, which brought about an interesting approach on controversial points of the theory of the reserve of the possible and a clear deconstruction of this supposed principle of the sovereignty of the public interest over the private. All the research took into account the reality of people with rare diseases, such as lack of priority of the Public Authorities when preparing the budget, analysis on the competence of the Judiciary to interfere in public policies, as well as an analysis of the impact of the cost of of judicial decisions in the execution of other public policies. These data were fundamental to understand that, although the public authority claims that the costing of these judicial decisions has a large impact on the public budget to the point of harming the execution of some public policies in the area of health, there is no financial data to prove this claim. What has been noticed is that there has never been a budget prioritization for dispensing the drug Soliris® to HPN patients, forcing these individuals to seek the protection of their rights within the judiciary