Devastated Luton mum’s plea as cystic fibrosis drug funding could be withdrawn

Mum says she fears for her toddler’s life
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A Luton mum has spoken about her fears for her toddler’s life as drugs for cystic fibrosis could be discontinued for new patients.

This month the National Institute for Health and Care Excellence recommended that no new patients get the drugs, on the grounds of cost. The medicine is believed to cost about £100,000 a year per patient on the NHS.

But NICE says the recommendation is not yet final – and could change.

Harley. Picture: Bethany WhitingHarley. Picture: Bethany Whiting
Harley. Picture: Bethany Whiting

Bethany Whiting had been holding out hope that the drug would transform the life of her 19-month-old son, Harley, who has cystic fibrosis.

She said: "When he was born, we just assumed that he's going to have a really short life. Then one of the nurses said that there was a drug called Kaftrio. We thought that Harley would have an almost normal life. Then the news came from NICE and our world turned around again."

Helen Knight, director of medicines evaluation at NICE said: "We are evaluating the cost-effectiveness of these cystic fibrosis medicines to ensure that taxpayers continue to get value for money after interim access where further data was collected.

“The committee want to hear from stakeholders through consultation on important aspects of its draft conclusions. This is to ensure that we have all the relevant information to accurately capture the value of these effective medicines when the committee makes its final decision.

“We are continuing to work collaboratively with the company, NHS England and other stakeholders including the Cystic Fibrosis Trust to deliver the best outcome both for people with cystic fibrosis and for the wider NHS.

"Existing patients and new patients who are started on treatment while the NICE evaluation is ongoing will continue to have access to the treatments after NICE has issued its final recommendations irrespective of the outcome."

NICE has issued draft recommendations for public consultation of the cystic fibrosis drugs and said that these are not final and may change.

Bethany explained: "Me and my husband had a bit of hope for some normality for him. Inside you kind of prepare, if he doesn't have this drug, you're gonna bury him before he should be buried - which is really harmful."

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