Daily Mirror (Northern Ireland)
ANGER AS ULSTER SICK DENIED WONDER DRUG
Cystic fibrosis sufferers in protests vow
CYSTIC fibrosis patients are to protest over the lack of availability of a treatment which has been hailed as a “major step forward” for people with the condition.
Last year the National Institute for Health and Care Excellence rejected the drug Orkambi, which has been shown in clinical trials to improve lung function and respiratory symptoms in people with the genetic condition. Protests are to be staged outside Stormont, Downing Street, the Scottish Parliament and the Welsh Assembly against the lack of availability of the medication. Liam Mchugh, from Castlederg, Co Tyrone, whose daughter has cystic fibrosis, is planning to attend one of the demonstrations. He 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. “When she was born we were told she wouldn’t make it to adulthood. “She is now 25 and, because of Orkambi, her lungs are better than ever. Looking at the strong and determined medical student she has become today, I’m the proudest father on the planet. “I wish everyone dealing with this devastating disease could have the same chance of life as my daughter has been given, which is why I’m protesting to make Orkambi available to everyone that needs it.” Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage. Only around half of people with cystic fibrosis live to celebrate their 40th birthday.