SCOTS sufferers of a rare form of cystic fibrosis have finally been given access to a revolutionary new drug that could extend their life expectancy by 18 years.
Campaigners have been calling for Kalydeco, also known as Ivacaftor, to made available in Scotland, but the drug was rejected for use on the NHS due to cost – despite it being available in England.
However, following a meeting with the Ivacaftor Patient Interest Group yesterday, Health Secretary Alex Neil has made assurances that funding will be made available to all sufferers – around 80 in Scotland – if the drug is approved by their doctor.
Loading article content
Marion Ferguson, head of the patient interest group, said she was "over the moon" following the meeting.
The campaigner, whose 15-year-old son Thomas suffers from the disease, said: "Before the meeting I was so nervous because I had such a great responsibility to get across just what this drug would mean to sufferers and their families.
"I could see all the faces of the children and young adults who desperately need this drug and I just kept thinking 'don't let them down'. I'm absolutely delighted with the decision."
The drug is the first of its kind to treat the cause of a certain strain of cystic fibrosis called G551D – known as the "Celtic gene" because of its prevalence in people of Celtic origin – rather than just the symptoms.