1000-DAY DRUG DELAY IS KILLING SCOTS

Orkambi licensed in 2015 yet it’s still not available in the UK

A MIRACLE drug which can halt the deterioration of cystic fibrosis sufferers was licensed for use 1000 days ago – but it is still not available to dying Scots.

While other countries around the world – including Ireland – have approved Orkambi for use in their health systems, none in the UK have permitted its use.

During that time, more than 200 people in the UK who may have benefited from it have died.

Campaigners are now calling on the Scottish Government to intervene and negotiate with pharmaceutical company Vertex so the Scottish Medicines Consortium will approve the life-changing drug.

At a meeting held by the Cystic Fibrosis Trust in Glasgow, family members insisted the Government and Vertex shared responsibility for the delay in its prescription.

And there was a further call for Holyrood to allow the SMC to negotiate with Vertex on their portfolio of drugs which have still to be licensed so Scots can benefit.

Con sul t ant Gordon MacGregor told the meeting trials have shown “amazing” results. Orkambi has been found to slow decline in lung function by 42 per cent – the most common cause of death for people with CF. It has also been shown to reduce chest infections requiring hospital treatment by up to 61 per cent.

MacGregor believes Orkambi – which got a European licence on November 16, 2015 – can stabilise people until even more transformational drugs arrive.

Lynsey Beswick, of the Cystic Fibrosis Trust, said: “It is extremely disappointing that while new medicines are being made that can really change and potentially prolong the lives of people with cystic fibrofibrosis, they are being denied to peoplep in Britain.”

A Vertex spokesman said: “WWe have met with governmment stakeholders in Scotlaland and are keen to meet ththe new Cabinet Secretary for Health and Sport as soon as possible to continue to wowork toward a solution.”