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Parents of children with cystic fibrosis start Orkambi buyers club

Published on 05/06/19 at 10:45am

Parents of children with cystic fibrosis have started an Orkambi buyers’ club to import generic versions of Vertex’s drug from Argentina into the UK.

Frustrated with the stalemate between the NHS and the Massachusetts-based firm, parents of children with cystic fibrosis have come together to import generic versions of Vertex’s £104,000 a year drug into the UK.

The concept of a buyers club played a central role in the 2013 film Dallas Buyers Club. Based on the true story of Ron Woodroof, who established an AIDS buyers’ club in 1998, the film tells the story of patients who imported HIV drugs from Mexico into the United States.

The Orkambi buyers’ club comes after negotiations broke down in July of last year. As such, the parents of patients with cystic fibrosis have decided to import a generic version of the drug made by Argentinian firm Gador which costs around 70-80% less than Vertex’s brand-name drug.

As of now, four British families have paid for Gador’s generic at a price of £23,000 a year. However in grouping together, the parents hope to negotiate a lower price. Gador have said they will offer parents Lucaftor at a price of £18,000 a year if the buyers’ club can get at least 500 people involved.

Vertex commented: “We have been open to discussing multiple options and flexibilities which would allow cystic fibrosis patients to access currently approved medicines.”

“Companies who claim to be able to produce a product similar to Orkambi have not had to bear the cost of drug discovery and development; though it should be noted that even at a 70%-80% cost reduction from the list price, this is still higher than the amount NHS England offered to pay for Orkambi in 2018.”

A spokesperson for the department of Health and Social Care said: “It is absolutely right that patients should have access to cost-effective, innovative medicines on the NHS at a price we can afford. Our approach remains to urge Vertex to accept NHS England’s generous offer.”

Louis Goss

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