Rare diseases: an analysis of the judicial action in cases of intestinal and multivisceral transplants according to the theory of the costs of rights

• Grant number: 16/22148-8
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: May 01, 2017
• End date: December 31, 2017
• Field of knowledge: Applied Social Sciences - Law - Public Law
• Principal Investigator: Patricia Borba Marchetto
• Grantee: Lucas Oliveira Faria
• Host Institution: Faculdade de Ciências Humanas e Sociais (FCHS). Universidade Estadual Paulista (UNESP). Campus de Franca. Franca , SP, Brazil

Abstract

With the advent of the Federal Constitution of 1988 was noted positivization of many fundamental rights, either first, second or third dimension. Despite social rights, the Brazilian Constitution provides that there is a subjective right of the citizen against the state about the realization of those rights, generating too much looking to the judiciary, as a result of the situations of inertia and inefficiency of the government. The case of health is no different, as there is exacerbated judicialization of this law, the search for various medications and surgical treatments.This study aims to address a specific case of judicialization of health that has been drawing media attention and still raising more questions in the legal environment on the state's obligation to provide expensive treatments. These are cases where, usually for rare diseases as Berdon Syndrome Short Bowel Syndrome or Inclusion Disease Micovilositária, surgical intervention is necessary by intestinal or multivisceral transplant, a procedure of high complexity that is not held in Brazil and comes to reach values that exceed the amount of US $ 1,000,000.00 (one million dollars), forcing the Brazilian State, by court order, to spend R $ 9,732,120.77 (nine million, seven hundred and thirty-two thousand, one hundred and twenty reais and seventy-seven cents) for the treatment of only four people, only in the year 2014 (SANTOS, 2016).Search, therefore, examine how the courts have responded to this demand between January 2014 until August; if this response meets the commands of the Public Hearing of the Judicialization of Health realized by the STF; what arguments are present in the speeches of the plaintiffs and defendants of the litigation and also analyze from the theoretical framework of "Theory of the Cost of Rights" establish parameters that help in solving the problem in a harmonic way. (AU)