Holyrood protest for cystic fibrosis

Cystic fibrosis sufferers campaigning for a new drug to be made available on the NHS gathered at Holyrood yesterday.

The treatment Orkambi could give patients an almost normal life expectancy if they start taking it when they are young enough.

While a deal was reached in May to make it available in the Republic of Ireland, the drug has not yet been approved for use by the NHS in any part of the UK. The Cystic Fibrosis Trust said of the 10,800 people in the UK suffering from the disease, 3,296 could benefit from the drug – including more than 240 in Scotland.

James Barrow, head of external affairs at the charity, said: “Cystic fibrosis is life-shortening condition that places a huge daily burden on people with the disease.

“Orkambi is a major step forward in the treatment of cystic fibrosis, which could help people live longer and has potential to save the lives of thousands in the UK.

“The drug deals with the underlying cause of cystic fibrosis and prevents irreversible lung damage, which is especially important for children as they stand to benefit from it the most. If a deal over the price of Orkambi is not reached soon, we fear people in need of the drug will run out of time.”

Hemonstrations were held outside Downing Street and at the Welsh and Northern Ireland assemblies.

Liam Mchugh, from Castlederg in Northern Ireland, whose daughter has cystic fibrosis, said: “My daughter is one of the few people in the UK lucky enough to get Orkambi as part of a clinical trial. For Rachel it has been nothing short of a wonder drug.”