Clinical genetics and public policies: how should rare diseases be managed?

Detalhes bibliográficos
Autor(a) principal: Schwartz, Ida
Data de Publicação: 2014
Outros Autores: Souza, Monica, Leivas, Paulo, Schuler-Faccini, Lavinia
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Clinical and Biomedical Research
Texto Completo: https://seer.ufrgs.br/index.php/hcpa/article/view/47988
Resumo: The implementation of a specific policy for rare diseases in the Brazilian Unified Health System presents challenges in terms of its rationale. Recognizing the importance of rarity in the context of public health means understanding genetics as one of the dimensions of disease and accepting thatBrazilis undergoing a period of transition in health indicators. Although most rare diseases lack pharmacological treatment and genetic counseling constitutes the best strategy for their prevention, the cost of “orphan drugs” and their consequent lack of cost-effectiveness are still claimed as hurdles to the implementation of public policies in this field. Epidemiological aspects should not be used as isolated criteria for prioritization in public policies.
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spelling Clinical genetics and public policies: how should rare diseases be managed?Medical geneticsOrphan drugsRare diseasesBrazilRare diseasesThe implementation of a specific policy for rare diseases in the Brazilian Unified Health System presents challenges in terms of its rationale. Recognizing the importance of rarity in the context of public health means understanding genetics as one of the dimensions of disease and accepting thatBrazilis undergoing a period of transition in health indicators. Although most rare diseases lack pharmacological treatment and genetic counseling constitutes the best strategy for their prevention, the cost of “orphan drugs” and their consequent lack of cost-effectiveness are still claimed as hurdles to the implementation of public policies in this field. Epidemiological aspects should not be used as isolated criteria for prioritization in public policies.HCPA/FAMED/UFRGS2014-07-02info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionPeer-reviewed Article"A Convite dos Editoresapplication/pdfhttps://seer.ufrgs.br/index.php/hcpa/article/view/47988Clinical & Biomedical Research; Vol. 34 No. 2 (2014): Clinical and Biomedical ResearchClinical and Biomedical Research; v. 34 n. 2 (2014): Clinical and Biomedical Research2357-9730reponame:Clinical and Biomedical Researchinstname:Universidade Federal do Rio Grande do Sul (UFRGS)instacron:UFRGSenghttps://seer.ufrgs.br/index.php/hcpa/article/view/47988/30854Schwartz, IdaSouza, MonicaLeivas, PauloSchuler-Faccini, Laviniainfo:eu-repo/semantics/openAccess2024-01-19T13:30:44Zoai:seer.ufrgs.br:article/47988Revistahttps://www.seer.ufrgs.br/index.php/hcpaPUBhttps://seer.ufrgs.br/index.php/hcpa/oai||cbr@hcpa.edu.br2357-97302357-9730opendoar:2024-01-19T13:30:44Clinical and Biomedical Research - Universidade Federal do Rio Grande do Sul (UFRGS)false
dc.title.none.fl_str_mv Clinical genetics and public policies: how should rare diseases be managed?
title Clinical genetics and public policies: how should rare diseases be managed?
spellingShingle Clinical genetics and public policies: how should rare diseases be managed?
Schwartz, Ida
Medical genetics
Orphan drugs
Rare diseases
Brazil
Rare diseases
title_short Clinical genetics and public policies: how should rare diseases be managed?
title_full Clinical genetics and public policies: how should rare diseases be managed?
title_fullStr Clinical genetics and public policies: how should rare diseases be managed?
title_full_unstemmed Clinical genetics and public policies: how should rare diseases be managed?
title_sort Clinical genetics and public policies: how should rare diseases be managed?
author Schwartz, Ida
author_facet Schwartz, Ida
Souza, Monica
Leivas, Paulo
Schuler-Faccini, Lavinia
author_role author
author2 Souza, Monica
Leivas, Paulo
Schuler-Faccini, Lavinia
author2_role author
author
author
dc.contributor.author.fl_str_mv Schwartz, Ida
Souza, Monica
Leivas, Paulo
Schuler-Faccini, Lavinia
dc.subject.por.fl_str_mv Medical genetics
Orphan drugs
Rare diseases
Brazil
Rare diseases
topic Medical genetics
Orphan drugs
Rare diseases
Brazil
Rare diseases
description The implementation of a specific policy for rare diseases in the Brazilian Unified Health System presents challenges in terms of its rationale. Recognizing the importance of rarity in the context of public health means understanding genetics as one of the dimensions of disease and accepting thatBrazilis undergoing a period of transition in health indicators. Although most rare diseases lack pharmacological treatment and genetic counseling constitutes the best strategy for their prevention, the cost of “orphan drugs” and their consequent lack of cost-effectiveness are still claimed as hurdles to the implementation of public policies in this field. Epidemiological aspects should not be used as isolated criteria for prioritization in public policies.
publishDate 2014
dc.date.none.fl_str_mv 2014-07-02
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
Peer-reviewed Article"
A Convite dos Editores
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://seer.ufrgs.br/index.php/hcpa/article/view/47988
url https://seer.ufrgs.br/index.php/hcpa/article/view/47988
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv https://seer.ufrgs.br/index.php/hcpa/article/view/47988/30854
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv HCPA/FAMED/UFRGS
publisher.none.fl_str_mv HCPA/FAMED/UFRGS
dc.source.none.fl_str_mv Clinical & Biomedical Research; Vol. 34 No. 2 (2014): Clinical and Biomedical Research
Clinical and Biomedical Research; v. 34 n. 2 (2014): Clinical and Biomedical Research
2357-9730
reponame:Clinical and Biomedical Research
instname:Universidade Federal do Rio Grande do Sul (UFRGS)
instacron:UFRGS
instname_str Universidade Federal do Rio Grande do Sul (UFRGS)
instacron_str UFRGS
institution UFRGS
reponame_str Clinical and Biomedical Research
collection Clinical and Biomedical Research
repository.name.fl_str_mv Clinical and Biomedical Research - Universidade Federal do Rio Grande do Sul (UFRGS)
repository.mail.fl_str_mv ||cbr@hcpa.edu.br
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