Mum pleads for wonder pill deal to save Katy, six
EXCLUSIVE
A MOTHER has demanded a swift NHS deal for an unlicensed cystic fibrosis drug – after it miraculously saved the life of a “dying” patient.
Trikafta, an as-yet unavailable wonder pill, was finally given to Nicole Adams a fortnight ago, after the Daily Express called for the gravely ill patient to get the medication.
The drug is made by US pharmaceuticals giant Vertex but is currently only available under its “compassionate use” scheme to the most poorly CF patients. But the NHS could agree a deal this summer when it gets its EU licence.
Nicole, 28, is now back home with her family in Belfast after improving so rapidly her stunned doctors discharged her from hospital.
Now, the family of six-yearold CF sufferer Katy Clarke, who is only able to take Trikafta as she is unsuitable for any other drug, insist Nicole’s recovery proves why it is needed.
Mother Stacey, of St Austell, Cornwall, said: “Seeing stories like Nicole’s make me extremely excited for the future. Katy’s future will completely change if she can get this drug.
“All I want for Katy is to give her the chance to live and to experience travel and kids one day. Trikafta will give her those things. I really hope we can give her those things.”
Last year Katy and her family joined in with the Daily Express’s successful campaign to make CF drugs Orkambi and Symkevi available – even though they knew she could not take them herself.
Stacey, 32, added: “We need to start over again and make sure a deal for Trikafta is made when it is licensed in the UK next summer.”
A CYSTIC fibrosis sufferer and fundraiser said it is disgraceful unlicensed drug Trikafta is still unavailable.
Josh Llewellyn-Jones, 32, insists Nicole Adams’s miraculous story shows why an urgent deal for the medicine is vital.
The fitness fanatic, from Cardiff, was awarded the OBE by Prince William last month after raising £800,000 for good causes.
In April, Josh is aiming to complete 24 marathons in 24 days as part of his fundraising. He said:
“It is absolutely staggering seeing the results of Trikafta, like in Nicole’s case. It is a genuinely life-changing drug.
“So it makes it all the more disgraceful campaigners and sufferers have to twist arms to persuade the very sick to get it compassionately.
“When licensed this summer, there must be some immediate, interim NHS deal agreed to get it into patient’ hands.”