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Equity in edge situations: access to treatment for people with hemophilia

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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.

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Author Biographies

Andréa Carolina Lins de Góis, Universidade de Brasília

Mestre em Bioética - Programa de Pós-graduação em Bioética

Daniela Amado Rabelo, Universidade de Brasília

Mestre em Bioética - Progama de Pós-graduação em Bioética - Universidade de Bras´ília

Tiago Félix Marques, Universidade de Brasília

Mestre em Bioética - Programa de Pós-graduação em Bioética - Universidade de Brasília

Posted

10/19/2020 — Updated on 10/26/2020

Versions

How to Cite

Lins de Góis, A. C., Amado Rabelo, D., Félix Marques, T., & Monsores, N. (2020). Equity in edge situations: access to treatment for people with hemophilia. In SciELO Preprints. https://doi.org/10.1590/SciELOPreprints.1361 (Original work published 2020)

Section

Health Sciences