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

Detalhes bibliográficos
Autor(a) principal: Lins de Góis, Andréa Carolina
Data de Publicação: 2020
Outros Autores: Amado Rabelo, Daniela, Félix Marques, Tiago, Monsores, Natan
Tipo de documento: preprint
Idioma: por
Título da fonte: SciELO Preprints
Texto Completo: https://preprints.scielo.org/index.php/scielo/preprint/view/1361
Resumo: 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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spelling Equity in edge situations: access to treatment for people with hemophiliaEquidad en situaciones-límite: acceso al tratamiento para personas con hemofiliaA equidade em situações-limite: acesso ao tratamento para pessoas com hemofiliaHemofiliaBioéticaDoenças raraEquidade em SaúdeJustiçaHemophiliaRare diseasesBioethicsEquityJusticeHemofiliaBioéticaEquidadEnfermedades rarasHemophilia 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.La hemofilia es una enfermedad hematológica poco frecuente y su tratamiento es um objetivo de innovación terapéutica. En el encuentro entre las necesidades del paciente, la conducta del clínico y la orientación del gestor de salud, surge el conflicto: ¿el protocuello es mínimo o máximo terapéutico? Las decisiones clínicas en debate con la asignación de recursos conducen a la discusión sobre la equidad en estas situaciones-límite. El método del presente estudio es integral, basado en el análisis bioético de 14 decisiones judiciales sobre el acceso al tratamientos de la hemofilia. Las decisiones para garantizar el acceso a los tratamientos presuponen un vínculo ético con el paciente; la clínica mantiene una dimensión de equidad, permitiendo que el tratamiento sea singular y las dosis previstas en el protocolo sean sugerencias y no límites. Desde un punto de vista ético, son expresiones de justicia, precaución y consideración de los intereses del paciente.Hemofilia é uma condição hematológica rara e seu tratamento é alvo de inovação terapêutica. No encontro entre necessidades do paciente, condutas do clínico e orientação do gestor de saúde, surge o conflito: o protocolo é um mínimo ou um máximo terapêutico? As decisões clínicas em debate com a alocação de recursos levam à discussão sobre equidade nestas situações-limite. O método do presente estudo é compreensivo, mediante análise bioética de 14 decisões judiciais acerca do acesso aos tratamentos de hemofilia. As decisões de garantia de acesso aos tratamentos pressupõem vinculação ética com o paciente; a clínica conserva uma dimensão de equidade ao permitir que o tratamento seja singular e as doses previstas em protocolo sejam sugestões e não limites. Do ponto de vista ético, estas são expressões de justiça, de precaução e de consideração dos interesses do paciente.SciELO PreprintsSciELO PreprintsSciELO Preprints2020-10-26info:eu-repo/semantics/preprintinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://preprints.scielo.org/index.php/scielo/preprint/view/136110.1590/SciELOPreprints.1361porhttps://preprints.scielo.org/index.php/scielo/article/view/1361/acesso_singular_tratamentoCopyright (c) 2020 Andréa Carolina Lins de Góes, Daniela Amado Rabelo, Tiago Félix Marques, Natan Monsoreshttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessLins de Góis, Andréa CarolinaAmado Rabelo, DanielaFélix Marques, TiagoMonsores, Natanreponame:SciELO Preprintsinstname:SciELOinstacron:SCI2020-10-13T16:49:14Zoai:ops.preprints.scielo.org:preprint/1361Servidor de preprintshttps://preprints.scielo.org/index.php/scieloONGhttps://preprints.scielo.org/index.php/scielo/oaiscielo.submission@scielo.orgopendoar:2020-10-13T16:49:14SciELO Preprints - SciELOfalse
dc.title.none.fl_str_mv Equity in edge situations: access to treatment for people with hemophilia
Equidad en situaciones-límite: acceso al tratamiento para personas con hemofilia
A equidade em situações-limite: acesso ao tratamento para pessoas com hemofilia
title Equity in edge situations: access to treatment for people with hemophilia
spellingShingle Equity in edge situations: access to treatment for people with hemophilia
Lins de Góis, Andréa Carolina
Hemofilia
Bioética
Doenças rara
Equidade em Saúde
Justiça
Hemophilia
Rare diseases
Bioethics
Equity
Justice
Hemofilia
Bioética
Equidad
Enfermedades raras
title_short Equity in edge situations: access to treatment for people with hemophilia
title_full Equity in edge situations: access to treatment for people with hemophilia
title_fullStr Equity in edge situations: access to treatment for people with hemophilia
title_full_unstemmed Equity in edge situations: access to treatment for people with hemophilia
title_sort Equity in edge situations: access to treatment for people with hemophilia
author Lins de Góis, Andréa Carolina
author_facet Lins de Góis, Andréa Carolina
Amado Rabelo, Daniela
Félix Marques, Tiago
Monsores, Natan
author_role author
author2 Amado Rabelo, Daniela
Félix Marques, Tiago
Monsores, Natan
author2_role author
author
author
dc.contributor.author.fl_str_mv Lins de Góis, Andréa Carolina
Amado Rabelo, Daniela
Félix Marques, Tiago
Monsores, Natan
dc.subject.por.fl_str_mv Hemofilia
Bioética
Doenças rara
Equidade em Saúde
Justiça
Hemophilia
Rare diseases
Bioethics
Equity
Justice
Hemofilia
Bioética
Equidad
Enfermedades raras
topic Hemofilia
Bioética
Doenças rara
Equidade em Saúde
Justiça
Hemophilia
Rare diseases
Bioethics
Equity
Justice
Hemofilia
Bioética
Equidad
Enfermedades raras
description 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.
publishDate 2020
dc.date.none.fl_str_mv 2020-10-26
dc.type.driver.fl_str_mv info:eu-repo/semantics/preprint
info:eu-repo/semantics/publishedVersion
format preprint
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://preprints.scielo.org/index.php/scielo/preprint/view/1361
10.1590/SciELOPreprints.1361
url https://preprints.scielo.org/index.php/scielo/preprint/view/1361
identifier_str_mv 10.1590/SciELOPreprints.1361
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv https://preprints.scielo.org/index.php/scielo/article/view/1361/acesso_singular_tratamento
dc.rights.driver.fl_str_mv https://creativecommons.org/licenses/by/4.0
info:eu-repo/semantics/openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by/4.0
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv SciELO Preprints
SciELO Preprints
SciELO Preprints
publisher.none.fl_str_mv SciELO Preprints
SciELO Preprints
SciELO Preprints
dc.source.none.fl_str_mv reponame:SciELO Preprints
instname:SciELO
instacron:SCI
instname_str SciELO
instacron_str SCI
institution SCI
reponame_str SciELO Preprints
collection SciELO Preprints
repository.name.fl_str_mv SciELO Preprints - SciELO
repository.mail.fl_str_mv scielo.submission@scielo.org
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