A equidade em situações-limite: acesso ao tratamento para pessoas com hemofilia

Andréa Carolina Lins de Góis; Daniela Amado Rabelo; Tiago Félix Marques; Natan Monsores

doi:10.1590/SciELOPreprints.1361

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Andréa Carolina Lins de Góis Universidade de Brasília https://orcid.org/0000-0002-4482-834X
Daniela Amado Rabelo Universidade de Brasília https://orcid.org/0000-0003-3725-0858
Tiago Félix Marques Universidade de Brasília https://orcid.org/0000-0001-5373-3812
Natan Monsores University of Brasília https://orcid.org/0000-0002-0293-8460

DOI:

https://doi.org/10.1590/SciELOPreprints.1361

Keywords:

Hemophilia, Rare diseases, Bioethics, Equity, Justice

Abstract

Hemophilia is a rare hematological condition, and its treatment is a target of therapeutic innovation. In the encounter between the patient's needs, the clinician's behavior, and the health manager's orientation, the conflict arises: is the clinical protocol a minimum or maximum? The clinical decisions in a debate with the allocation of resources lead to the discussion about equity in these edge situations. The method of the present study is comprehensive, based on a bioethical analysis of 14 court decisions regarding access to hemophilia treatments. Decisions to guarantee access to treatments presuppose an ethical link with the patient; the clinic maintains a dimension of equity allowing that treatment to be singular, and the doses provided for in the protocol are suggestions and no limits. From an ethical point of view, these are expressions of justice, precaution, and consider the patient's interests.