Orkambi: Cystic fibrosis drug buyers’ club travels to Argentina
Parents of children with the condition flew 7,300 miles to buy a “life-saving” drug unavailable on the NHS in England. …
A group of parents of children with cystic fibrosis has travelled to Argentina to buy a generic version of a “life-saving” drug.
Orkambi is not available on the NHS in England as it costs £104,000 a year per patient, but earlier this month a five-year agreement was reached between the Scottish government and pharmaceutical company Vertex for it to be made available there.
A generic version is being produced in Argentina for £24,000, as Vertex failed to patent Orkambi there. That has led to some patients from Hampshire joining a buyers’ club to legally purchase the generic drug, although for most that is not an option.
Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage, and affects about 10,000 people in the UK.
See more on Inside Out South on BBC One in the south of England on Monday 23 September at 19:30 BST and on the BBC iPlayer here.
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