A CYSTIC fibrosis sufferer has thanked the Daily Express after our battle for justice led to her receiving life-saving drugs.
We have urged US drug-makers Vertex and doctors for months to help Nicole Adams access the specialist CF drug Symkevi. Nicole, at the best of times, has only a 20 percent lung function but flu has seen it plunge to just 13 percent, leaving her bed-bound and on oxygen at Belfast City Hospital. She rang us a fortnight ago, pleading: “I’m so scared. I’m dying. What can I do?” Now after repeated Daily Express stories plus pressure from CF groups and her boyfriend Ciaran McVarnock, she was given Symkevi on Monday.
Nicole, 28, of Newtown-abbey, County Antrim, said: “I want to thank all the readers of Daily Express.
“I would be nowhere without the support of them, as well as my Ciaran and all the CF community.
“It has been a few scary weeks – but things are going to change now. This little blonde girl isn’t a quitter.
“I took my first Symkevi tablets on Monday and I felt so happy and relieved, like a weight has been lifted.
“I haven’t had any temperatures in 72 hours, so hopefully my flu has gone.”
Nicole was diagnosed with CF at three months old but she lived a remarkably fit and active lifestyle.
She was Northern Ireland disco-dancing champion three years running, a gymnast and a cheerleader.
She became a hairdresser and, incredibly for a CF sufferer, did not need any hospital admission until she was 22 years old.
But on a trip to Asia in 2014, she developed a Burkholderia cepacia infection – the rare bacterium is resistant to many drugs.
Nicole’s lungs are stricken with the bug but doctors will not let her have a transplant. In 2017, she was given free compassionate-use of CF wonder drug Orkambi but it disagreed with her. But she was bizarrely refused the newer Symkevi, despite meeting all criteria, and has struggled since last summer.
In September, we first spoke to Nicole as she fought in vain for Symkevi via Vertex’s compassionate-use scheme which supplies the costly drugs for free to patients whose lung function falls repeatedly below 40 percent.
In October, the Daily Express crusade finally saw historic NHS deals for Orkambi and Symkevi struck across the UK.
We then launched a new campaign to see the newer, upcoming Trikafta drug made widely available next year on the NHS when licensed in June.
Boxer Ciaran said: “What a fighter. But Trikafta is what she really needs.”
Healthcare is devolved in Northern Ireland, so Health Secretary Matt Hancock has been powerless to intervene on Nicole’s behalf.
Belfast City Hospital has refused to reply to repeated requests for information.