Daily Mirror (Northern Ireland)
Denied miracle drug and left fighting for life after move home Cystic fibrosis sufferer Naomi wants approval for Orkambi in Ulster
A YOUNG cystic fibrosis sufferer regrets moving home to Northern Ireland after the Scottish government approved a drug that could save her.
Naomi Moore, 25, is just one of hundreds here who could benefit from “lifesaving” Orkambi.
But in the five years since the drug has been available, the young Antrim woman has lost friends “who could have been helped” but the Department for Health has refused to act.
Naomi told the Mirror: “As a young person with cystic fibrosis knowing your friends are passing away with the same illness as you and still not being able to get this drug is devastating. It really gives you a sense of what’s the point? I actually lived in Glasgow for five years and moved back last July after graduating.
“I came back here to work and provide for the economy because this is where I was born. “Finding out that if I had just stayed there for another year – I would be on these lifesaving drugs – it is ridiculous. “The Republic have had it for two-and-a-half years.
“Now Scotland has just been given it and they are our closest neighbours as well. We are stuck in here with a health border in our way. It honestly just feels like if I crossed the sea or the border I could get this lifesaving drug.
“It’s really not nice. It’s devastating and we really could do with it.”
Cystic fibrosis is a genetic condition that clogs the lungs and digestive system with mucus, shortening a sufferer’s life to an average age of just 31.
Almost 500 children and young people have it in Northern Ireland and many could benefit from Orkambi.
Pressure is mounting on the Department of Health to green light the drug, which is made in Co Armagh, following Scotland’s landmark approval.
Cystic Fibrosis Trust chief David Ramsden said: “Scotland’s success must be replicated across the UK without further damaging delay. Those in need of the drugs have already waited too long and we must ensure that thousands more people are not subjected to a postcode lottery.”
A Department of Health spokesman said it only endorses drugs approved by the National Institute for Health and Care Excellence.
He added: “The department has a formal link with NICE under which NICE Technology Appraisals are reviewed locally for their applicability in Northern Ireland.
“NICE has not recommended the use of lumacaftor/ivacaftor [Orkambi] or tezacaftor/ivacaftor [Symkevi] for treating cystic fibrosis and so they are not offered as a routinely commissioned treatment for cystic fibrosis in Northern Ireland.”