PT  - JOURNAL ARTICLE
AU  - Diego Rosselli
AU  - Juan-David Rueda
AU  - Martha Solano
TI  - Ethical and economic considerations of rare diseases in ethnic minorities: the case of mucopolysaccharidosis VI in Colombia
AID  - 10.1136/medethics-2011-100204
DP  - 2012 Nov 01
TA  - Journal of Medical Ethics
PG  - 699--700
VI  - 38
IP  - 11
4099  - http://jme.bmj.com/content/38/11/699.short
4100  - http://jme.bmj.com/content/38/11/699.full
SO  - J Med Ethics2012 Nov 01; 38
AB  - 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.