Ethical and economic considerations of rare diseases in ethnic minorities: the case of mucopolysaccharidosis VI in Colombia.
J Med Ethics
; 38(11): 699-700, 2012 Nov.
Article
em En
| MEDLINE
| ID: mdl-22550061
Mucopolysaccharidosis VI is an autosomal recessive lysosomal storage disorder associated with severe disability and premature death. The presence of a mucopolysaccharidosis-like disease in indigenous ethnic groups in Colombia can be inferred from archaeological findings. There are several indigenous patients with mucopolysaccharidosis VI currently receiving enzyme replacement therapy. We discuss the ethical and economic considerations, regarding both direct and indirect costs, of a high-cost orphan disease in a marginalised minority population in a developing country.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Mucopolissacaridose VI
/
N-Acetilgalactosamina-4-Sulfatase
/
Doenças Raras
/
Terapia de Reposição de Enzimas
Tipo de estudo:
Health_economic_evaluation
Aspecto:
Ethics
Limite:
Humans
País/Região como assunto:
America do sul
/
Colombia
Idioma:
En
Revista:
J Med Ethics
Ano de publicação:
2012
Tipo de documento:
Article
País de afiliação:
Colômbia
País de publicação:
Reino Unido