A teenage cystic fibrosis sufferer is calling for a potentially life-saving drug to be made available on the NHS.
Adam Lyon, 18, from Fairmuir, has the gene mutation dd508, making him eligible for the drug Orkambi.
Tests have shown the drug can slow the decline in lung function – the most common cause of death for people with the condition – by up to 42%
It has also been shown to reduce chest infections requiring hospital treatment by up to 61%.
However, despite being licensed in the UK for just over 1,000 days, it is still not available to NHS patients. The Cystic Fibrosis Trust estimates 200 people who could have benefited from the drug have died in that time.
Adam, who works for Scottish Water, said: “I think I was diagnosed when I was five. I couldn’t walk very much and was always coughing.
“It has been tough and the hardest part is balance. You go through phases when you hate doing physiotherapy – even eating is hard.
“I do keep well now but it can be challenging. From the age of 12 to about 15 – the start of the teenage years going into high school – I was unwell.”
Adam said he struggled to put on weight and he had a gastrostomy tube fitted to deliver nutrients directly to his stomach, which wasn’t removed until last year.
Adam spends about two hours each day on his treatments, including two daily physiotherapy sessions and breathing in saline via a nebuliser to help clear his lungs.
Speaking about Orkambi, he said: “I would grab any sort of help to make day to day life easier for me. I like to think that I don’t let my cystic fibrosis stop me from living a normal life.
“However, if this drug is out there and it can help people, then I don’t see why it is not being made available.”
Lynsey Beswick, public affairs manager at the Cystic Fibrosis Trust, said: “It is extremely disappointing that while new medicines are being made that can change and potentially prolong the lives of people with cystic fibrosis, they are being denied to people in the UK.
“We urge the NHS and drug manufacturer Vertex to agree a resolution that will enable speedy access.”
A Scottish government spokesman said: “Doctors in Scotland are already able to prescribe licensed treatments that are not yet generally available on the NHS, including Orkambi, if they consider that the individual patient’s clinical needs will be met.
“We have sought further meetings with Vertex on several occasions to discuss the availability of Orkambi, and we strongly encourage them to submit a fresh application to the SMC as a matter of urgency.”