Clinical genetics and public policies: how should rare diseases be managed?
Clin. biomed. res
;
34(2): 122-131, 2014. tab
Article
Dans Anglais
| LILACS
| ID: biblio-997832
ABSTRACT
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 that Brazil is 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
Texte intégral:
Disponible
Indice:
LILAS (Amériques)
Sujet Principal:
Services pharmaceutiques
/
Maladies rares
/
Politique de santé
/
Maladies génétiques congénitales
Type d'étude:
Étude pronostique
Limites du sujet:
Humains
Pays comme sujet:
Amérique du Sud
/
Brésil
langue:
Anglais
Texte intégral:
Clin. biomed. res
Thème du journal:
Médicament
Année:
2014
Type:
Article
Pays d'affiliation:
Brésil
Institution/Pays d'affiliation:
Centro Universitário UniRitter/BR
/
Hospital de Clínicas de Porto Alegre/BR
/
Hospital de Clínicas de Porto Alegre. Serviço de Genética Médica/BR
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