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Ethical and economic considerations of rare diseases in ethnic minorities: the case of mucopolysaccharidosis VI in Colombia

Diego Rosselli, Juan-David Rueda and Martha Solano
Journal of Medical Ethics
Vol. 38, No. 11 (November 2012), pp. 699-700
Published by: BMJ
Stable URL: http://www.jstor.org/stable/43283091
Page Count: 2
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Abstract

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.

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