Campaign to end deadlock over cystic fibrosis drug

Campaigners are appealing to the government to use its powers to break a deadlock in making available a life-extending drug to people with cystic fibrosis.

Vertex, the manufacturers of the drug Orkambi, have refused an offer of £500m offer over five years, which would be the ‘largest commitment’ ever made by the NHS. Vertex currently charge £100,000 for a year’s treatment of the drug.

The Department of Health have said their approach “remains urging Vertex to accept NHS England’s generous offer.”

Vertex have said they were “determined to find a solution that allows the NHS to provide patient access to our precision medicines across the UK with budget certainty, and also allows Vertex to continue its research and focus on a cure for CF and other serious diseases.”

Cystic fibrosis is a genetic condition which causes fatal lung damage, shortening life, and affects around 10,400 people in the UK. Only around 50 per cent of sufferers live to the age of 40.

A statement from the Department of Health and Social Care said that “it is absolutely right that patients should have access to cost-effective, innovative medicines on the NHS at a price we can afford.

“Despite being offered in the region of £500m over five years – the largest ever commitment of its kind in the70-year history of the NHS – Vertex has refused to accept, putting Orkambi out of reach of patients.

“We’re aware there may be other avenues open to resolve this issue, but our approach remains urgent Vertex to accept NHS England’s generous offer.”

A spokesperson for NHS England said “We understand how difficult it must be for families affected by cystic fibrosis.

“This is why it is so important that as with all companies seeking NHS approval for treatments of this kind, Vertex must fully engage with the NICE process.”

Chadwick Lawrence’s specialist team of clinical negligence lawyers have years of experience in medical negligence claims, providing support and guidance after life-changing events. Not only do we represent clients in Yorkshire, but because of our reputation we also represent clients nationally.

If you believe that you or a relative may have been injured as a result of clinical/medical negligence, please call for free legal advice from our medical negligence solicitors on the freephone number below.

Posted by Karen Motley, Clinical Negligence Department, Chadwick Lawrence LLP (tonymay@chadlaw.co.uk ), medical negligence lawyers and clinical negligence solicitors in Huddersfield, Leeds, Wakefield and Halifax, West Yorkshire.

Freephone : 0800 304 738