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

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

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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 thatBraz...

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Main Authors: Ida Schwartz, Monica Souza, Paulo Leivas, Lavinia Schuler-Faccini
Format: Article
Language:English
Published: Hospital de Clinicas de Porto Alegre ; Universidade Federal do Rio Grande do Sul (UFRGS) 2014-07-01
Series:Clinical and Biomedical Research
Subjects:
Medical genetics
Orphan drugs
Rare diseases, Brazil
Online Access:http://seer.ufrgs.br/index.php/hcpa/article/view/47988
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spelling doaj-4f1ed9d73643434c82d7908d377445462020-11-25T00:55:56ZengHospital de Clinicas de Porto Alegre ; Universidade Federal do Rio Grande do Sul (UFRGS)Clinical and Biomedical Research0101-55752357-97302014-07-0134224625Clinical genetics and public policies: how should rare diseases be managed?Ida SchwartzMonica SouzaPaulo LeivasLavinia Schuler-FacciniThe 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.http://seer.ufrgs.br/index.php/hcpa/article/view/47988Medical geneticsOrphan drugsRare diseases, Brazil
collection DOAJ
language English
format Article
sources DOAJ
author Ida Schwartz
Monica Souza
Paulo Leivas
Lavinia Schuler-Faccini
spellingShingle Ida Schwartz
Monica Souza
Paulo Leivas
Lavinia Schuler-Faccini
Clinical genetics and public policies: how should rare diseases be managed?
Clinical and Biomedical Research
Medical genetics
Orphan drugs
Rare diseases, Brazil
author_facet Ida Schwartz
Monica Souza
Paulo Leivas
Lavinia Schuler-Faccini
author_sort Ida Schwartz
title Clinical genetics and public policies: how should rare diseases be managed?
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?
publisher Hospital de Clinicas de Porto Alegre ; Universidade Federal do Rio Grande do Sul (UFRGS)
series Clinical and Biomedical Research
issn 0101-5575
2357-9730
publishDate 2014-07-01
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.
topic Medical genetics
Orphan drugs
Rare diseases, Brazil
url http://seer.ufrgs.br/index.php/hcpa/article/view/47988
work_keys_str_mv AT idaschwartz clinicalgeneticsandpublicpolicieshowshouldrarediseasesbemanaged
AT monicasouza clinicalgeneticsandpublicpolicieshowshouldrarediseasesbemanaged
AT pauloleivas clinicalgeneticsandpublicpolicieshowshouldrarediseasesbemanaged
AT laviniaschulerfaccini clinicalgeneticsandpublicpolicieshowshouldrarediseasesbemanaged
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