Families create buyers club for cut-price cystic fibrosis drug

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Stalemate in NHS talks over Orkambi leads parents to buy generic version from Argentina

Parents of children with cystic fibrosis who are desperate to use a drug that the NHS cannot afford are forming a buyers club to obtain a cut-price version made in Argentina where the patent does not apply.

Angry at the stalemate between Vertex, the US manufacturer of Orkambi, and NHS England, the families are forming the club to help each other through the legal and technical hurdles of importing the cheaper generic drugs for each child’s individual needs.

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