Access to treatment for phenylketonuria by judicial means in Rio Grande do Sul, Brazil

Ciência & Saúde Coletiva

Luciano Mangueira Trevisan¹  Tatiele Nalin¹  Tassia Tonon¹  Lauren Monteiro Veiga¹  Paula Vargas¹  Bárbara Corrêa Krug¹  Paulo Gilberto Cogo Leivas¹  Ida Vanessa Doederlein Schwartz¹ 

关键词: Judicialization of health;    Unified Health System;    Phenylketonuria;    Judicialização da saúde;    Sistema Único de Saúde;    Fenilcetonúria;   

DOI  :  10.1590/1413-81232015205.08302014

来源: SciELO

【 摘 要 】

Treatment of phenylketonuria (PKU) includes the use of a metabolic formula which should be provided free of charge by the Unified Health System (SUS). This retrospective, observational study sought to characterize judicial channels to obtain PKU treatment in Rio Grande do Sul (RS), Brazil. Lawsuits filed between 2001- 2010 and having as beneficiaries PKU patients requesting treatment for the disease were included. Of 20 lawsuits filed, corresponding to 16.8% of RS patients with PKU, 19 were retrieved for analysis. Of these, only two sought to obtain therapies other than metabolic formula. In all the other 17 cases, prior treatment requests had been granted by the State Department of Health. Defendants included the State (n = 19), the Union (n = 1), and municipalities (n = 4). In 18/19 cases, the courts ruled in favor of the plaintiffs. Violation of the right to health and discontinuation of State-provided treatment were the main reasons for judicial recourse. Unlike other genetic diseases, patients with PKU seek legal remedy to obtain a product already covered by the national pharmaceutical assistance policy, suggesting that management failures are a driving factor for judicialization in Brazil.

【 授权许可】

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