title: Access to treatment for phenylketonuria by judicial means in Rio Grande do Sul, Brazil.
abstract: 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.
authors.affiliation: Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brasil, ischwartz@hcpa.ufrgs.br.
authors.forename: Luciano Mangueira
authors.initials: LM
authors.lastname: Trevisan
authors.affiliation: Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brasil, ischwartz@hcpa.ufrgs.br.
authors.forename: Tatiele
authors.initials: T
authors.lastname: Nalin
authors.affiliation: Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brasil, ischwartz@hcpa.ufrgs.br.
authors.forename: Tassia
authors.initials: T
authors.lastname: Tonon
authors.affiliation: Centro Universitário Ritter dos Reis, Brasil.
authors.forename: Lauren Monteiro
authors.initials: LM
authors.lastname: Veiga
authors.affiliation: Hospital Materno Infantil Presidente Vargas, Brasil.
authors.forename: Paula
authors.initials: P
authors.lastname: Vargas
authors.affiliation: Secretaria Estadual da Saúde do Rio Grande do Sul, Brasil.
authors.forename: Bárbara Corrêa
authors.initials: BC
authors.lastname: Krug
authors.affiliation: Centro Universitário Ritter dos Reis, Brasil.
authors.forename: Paulo Gilberto Cogo
authors.initials: PG
authors.lastname: Leivas
authors.affiliation: Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brasil, ischwartz@hcpa.ufrgs.br.
authors.forename: Ida Vanessa Doederlein
authors.initials: IV
authors.lastname: Schwartz
mesh_terms: D000293:Adolescent; D001938:Brazil; D002648:Child; D002675:Child, Preschool; D005260:Female; D006297:Health Services Accessibility / Q000331:legislation & jurisprudence*; D006801:Humans; D007223:Infant; D008297:Male; D010661:Phenylketonurias / Q000188:drug therapy*; D012189:Retrospective Studies; D055815:Young Adult