Firm urged to cut price of cystic fibrosis drug for use on the NHS
A DRUG manufacturer has been urged to lower the price of a lifechanging treatment for cystic fibrosis sufferers so it can be made available on the NHS.
Health Ministers Steve Brine and Lord O’Shaughnessy called on Vertex Pharmaceuticals, which makes the drug Orkambi, to bring negotiations over cost to “an urgent resolution”.
The drug is not currently available on the NHS because it is not considered cost-effective, but has been shown in clinical trials to improve lung function and respiratory symptoms in people with the genetic condition.
NHS England has submitted a counter-offer to a deal proposed by the manufacturer, which the Ministers described as an “important demonstration of its significant commitment” to working with Vertex, if it can commit to “responsible” pricing.
The letter to Simon Bedson, senior vice-president of the company, follows a debate in the House of Commons about access to the drug last month.
The Ministers said: “To reiterate the heartfelt and vitally important points made in the debate, and in the many letters we have received from patients suffering from this disease and their friends and families, time really is of the essence.
“Therefore we ask you as a matter of the utmost urgency to proceed with negotiations in a way that is constructive and supports our joint aim of securing access to your medicines currently licensed in the UK at a price that is cost-effective and fair.”
The letter adds: “We urge that you provide all available data supporting the cost-effectiveness of your proposal promptly to ensure progress towards an agreement.
“A final deal is not for Ministers to approve but we truly believe this can be a mutually satisfactory arrangement for both parties.”
NHS England is currently awaiting a response to its counter-offer.
Cystic fibrosis is a life-shortening genetic condition causing fatal lung damage that affects about 10,400 people in the UK.
Only around half live to celebrate their 40th birthday.
The National Institute for Health and Care Excellence (Nice), which helps decide which treatments should be available on the NHS in England and Wales, rejected the drug in 2016 on cost grounds.