The family of a woman critically ill with cystic fibrosis are calling on the NHS to give her a 'wonder drug' to end her 'life and death' situation.
Nicole Adams, 28, from Belfast, was hospitalised with flu last month and has since said the illness feels 'like being suffocated by my own body'.
Nicole – a mum of one – initially responded well to treatment and her condition was stable until earlier this week when she was suddenly rushed to intensive care. Medics are now trying to clear her airways.
Her family – and other cystic fibrosis sufferers – are now calling on the NHS to release the drug to Nicole, fearing 'how much fight she has left in her'.
Cystic fibrosis sufferers have praised Trikafta as a the 'Holy Grail' but the drug has not yet been passed by the European drug regulatory body.
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However, the drug manufacturer, Vertex, could bypass the safety process and supply it directly to Nicole for 'compassionate use' if doctors authorise it.
Boyfriend Ciaran McVarnock, 27, an Irish boxing champion, told the Daily Mail that Nicole's urgent need for Trikafta is now life and death.
He said: "I know it’s a complicated situation, and the care she has received is incredible, but this is life and death for her – it makes me so angry and frustrated that the drug is out there and that she can’t get it.
"She needs her doctors to give it to her, and she ticks all the boxes to receive it on compassionate grounds."
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Nicole's lung capacity has dropped to 13 per cent – plummeting from 20 per cent at the end of November when she was taken to Belfast Royal Victoria Hospital with a temperature.
In a Facebook video message, a teary Nicole told how she had received news from medics that the drugs Orkambi and Symkevi were made available in Ireland. In it, she thanks viewers after a tense year of campaigning saw the Government approve a deal in October.
However, when Nicole tried Orkambi at the beginning of the year she was forced to stop taking it after suffering a bad reaction.
Trikafta is a triple combination therapy that improves lung function and is four times as effective as the Orkambi and Symkevi, which is only successful for 45 per cent of people.
According to medics, the majority of patients will eventually need to replace Orkambi and Symkevi with Trikafta at some stage in their treatment. The drug is thought to turn the fatal cystic fibrosis into a manageable illness.
Nicole – who ran her own salon in Belfast but was forced to close her business earlier this year – has battled the illness since her teens but her health is rapidly delcining.
Ciaran is now trying to raise £20,000 which would buy a one-month supply of Trikafta from America. While he has almost reached his target, Nicole will need a long-term solution.
He previously told Belfast Live: "I would give this girl my lungs if I could. But the spirit and fight in her I really do honestly believe there will be light at the end of the tunnel."
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