Woman saved by miracle cystic fibrosis drug says plans to withdraw medication will impact children

A mother whose life was saved by a 'miracle' cystic fibrosis drug has warned that plans to withdraw the medication over rising costs will impact the future of many children.

Belfast woman Nicole Adams was 24 hours from death in December 2019 after her cystic fibrosis deteriorated to the point where she only had 11 percent functionality in her lungs.

Doctors told her and her partner Ciaran McVarnock that it was likely that Nicole would not survive.

However a new treatment for the condition, called Kaftrio, saved Nicole's life.

"If I hadn't got the drug when I did I wouldn't be here and I wouldn't be a mum. Within two weeks of taking Kaftrio I was leaving the hospital. I am healthy and happy with a happy son," Nicole told UTV.

In January 2022 the Department of Health announced that the drug would be made available to eligible children over the age of six in Northern Ireland.

However, the National Institute for Health and Care Excellence has withdrawn its recommendation for the drug for new patients.

NICE said it had been "evaluating the cost-effectiveness" of these "effective medicines."

The body's draft guidance is open for consultation until November 24.

Nicole's son Colby does not have the condition but he carries the gene.

She said many parents who have children with cystic fibrosis have been left devastated that their child may now not be able to access the treatment on the NHS.

"It's just so sad that there is such a miracle drug and I am proof that this drug can work.

Now to be told we can't afford it, it's like there's a price tag on our heads," she added.

The Department of Health said when final guidance is issued by NICE the Department will consider it under the usual process.

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