Clinical genetics and public policies: how should rare diseases be managed?
Clin. biomed. res
;
34(2): 122-131, 2014. tab
Artículo
en Inglés
| 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
Texto completo:
Disponible
Índice:
LILACS (Américas)
Asunto principal:
Servicios Farmacéuticos
/
Enfermedades Raras
/
Política de Salud
/
Enfermedades Genéticas Congénitas
Tipo de estudio:
Estudio pronóstico
Límite:
Humanos
País/Región como asunto:
America del Sur
/
Brasil
Idioma:
Inglés
Revista:
Clin. biomed. res
Asunto de la revista:
Medicina
Año:
2014
Tipo del documento:
Artículo
País de afiliación:
Brasil
Institución/País de afiliación:
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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