Protest for new drug release

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

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 that of the 10,800 people in the UK with the disease, 3,296 could benefit from the drug – including more than 240 patients in Scotland.

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

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

Similar demonstrations were to be held outside Downing Street and at the Welsh and Northern Ireland assemblies.