Father of four-year-old with cystic fibrosis says NHS and Vertex need to strike a deal to access drugs

Credit: ITV Border

A father campaigning for easy access to the cystic fibrosis medication Orkambi says NHS England and the pharmaceutical company need to strike a deal.

Dave Louden's four-year-old daughter Ayda has the condition and the Orkambi drug could lengthen her life by 25 years.

Mr Louden was in London for the parliamentary debate on 10 June. After listening to the debate he hopes the health minister will step in and find a solution that will allow people with cystic fibrosis access to the drug free of charge on the NHS.

It currently costs £104,000 per patient, per year for the drug. The NHS says that is just too high and have been in talks with the drug company to bring the price down.

  • What is Cystic Fibrosis?

Cystic fibrosis is a genetic condition, which affects around 10,000 people in the UK.

The gene affected by CF controls the flow of salt and water in and out of the cells and causes a sticky mucus to build up in the lungs and digestive system.

Last year, parliament debated a similar issue with Vertex but did not follow through with a deal stating that they are wanting to explore proposals to secure a pricing structure. However, Vertex was unable to come forward with a viable model that would enable the drug to be funded.

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