‘Miracle’ cystic fibrosis drug that helped Wakefield teenager achieve Barnsley FC scholarship could out of reach for younger children
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Alfie Brook, 16, was given access to Kaftrio three years ago and says it has massively improved his health and helped him with his scholarship at Barnsley FC’s community trust.
The scholarship involves sports coaching, training and playing football .
Kaftrio drug enables people with cystic fibrosis to live much longer – up to the age of 80 – and limits the symptoms of the condition.
But fears have arisen that new draft guidance from the National Institute for Health and Care Excellence (NICE) could mean the drug is withdrawn because it costs too much.
Alfie said: “It’s helped me be more active and I'm a lot better than I was.
"I’m never really that poorly now.
"I play in midfield so I have to run quite a lot.
"I've got pretty good stamina but Kaftrio has helped it a lot.”
Kirsty Ginnelly, from Altofts, expected her son Oscar to be able to access the drug when he reached the age of two, but now doubts if he will ever receive the treatment following the latest news from NICE.
She said: “When a miracle drug and a future for your child is dangled in front of you and then taken away it is unfathomable.
"The prospect of Oscar starting the treatment aged two was a lifeline.
“He would have been able to go to nursery, not worry about catching bugs and live a relatively long life."
Alfie’s grandma Linda Hodgson said the teenager’s health had notably improved since he had been taking Kaftrio and he had contracted fewer infections.
She said: “Alfie has always kept himself fit.
"But we can see a difference with the tablets.
"He doesn't get as tired.
“He's always been positive, he's that type of kid.
"He is quite grown up for his age and it might be because of his illness, tablet,s routine, physio,
“He is quite prepared to do things on his own.
"He doesn't let his illness get to him or he doesn't show it, let's put it that way.”