Boy, 8, in plea for cheaper medicine

An eight-year-old boy with cystic fibrosis has urged a pharmaceutical company to lower the price of a drug so it can be made available on the NHS.

Orkambi received its European licence exactly 1,000 days ago, but the National Institute of Care and Excellence (Nice) has not recommended it for use on grounds of cost-effectiveness.

Luis Walker and hundreds of other children are expected to write to Vertex Pharmaceuticals today in an attempt to help negotiations over the cost of the drug.

In a handwritten letter to Vertex vice-president for corporate affairs Rebecca Hunt, Luis wrote: “You have the medicine that can make me feel much better and not have to spend so much time in hospital. Please sell it to my country.

“If your son had cystic fibrosis, I know you understand and lower the price of Orkambi.”

Orkambi was approved by the European Medicines Agency in November 2015, but an agreement on cost has not yet been reached with the NHS. Last month new health secretary Matt Hancock urged Vertex to break the “impasse”.