Declared as a “wonder drug” which can help extend and improve the lives of children living with the condition, Orkambi has not been available on the NHS as it was deemed too expensive. Following negotiations with the drug manufacturer, it was made available in Scotland in September, and last week it was announced it was to be made available on the NHS in England. 

Yesterday, Tuesday, the Department of Health here confirmed it would be making Orkambi and two other cystic fibrosis drugs available on the NHS here. It marks the conclusion of a hard fought campaign by parents here, including several in Fermanagh, over the past four years. 

Geraldine Murphy, mother of Arney schoolboy Daire who has cystic fibrosis, was one of those parents, taking their cause to the steps of Stormont. Speaking to the Herald as the news emerged yesterday Ms Murphy said she was over the moon and could not believe this day had actually come. 

Speaking to the Herald earlier in the day, prior to the surprise announcement yesterday afternoon, Ms Murphy had explained why the drug was so important to young patients. 

“This is an amazing precision drug which is the closest thing to a cure,” she said. “Children and young adults with a double copy of the DF508 gene will benefit from this drug. It will change their lives. 

“Currently 60 children in the Royal Belfast hospital need this. Young adults in the city hospital aged 18 and over also need this drug. We are delighted that after a four year battle it has finally been given the green light in England.”

When making the announcement yesterday chief civil servant at the Department of Health, Richard Pengelly, said he was delighted and added: “This has been a very difficult and sensitive process. For patients with Cystic Fibrosis and their families, it has been a long and frustrating road.”