By George Stephens •
Published: 24 Oct 2019 • 15:32
Credit CF Trust
A life-extending drug for cystic fibrosis will be available on the NHS in England, health bosses announced today.
NHS England reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks. Patients should be able to get the drug within 30 days.
The drug improves lung function and reduces breathing difficulties and can be given to children as young as two which will massively extend their lives to more normal mortality ages.
The firm wanted to charge £100,000 per patient per year but a compromise has been reached in a confidential agreement.
It is understood to involve significantly less than the sum originally asked for.
Patients and campaigners have expressed delight at the announcement.
Samantha Jayne who spoke to the Euro Weekly News said it meant everything to her Brother, George aged 20, should be on it by Christmas, she called it the “best present ever”.
“I can’t stop crying neither can my Dad and my brother’s and Sister’s. I’m overwhelmingly happy. It’s so wonderful, it’s something we have only dreamed of since he was born in 1999 and since then we have lived in hope of a miracle” she said.
Samantha explained how George was born with Cystic Fibrosis in 1999 after her sister Lucy died of the chronic disease in 1995.
” George has followed Josh Llewellyn Jones as an example ( who was recently interviewed in the Euro Weekly News for his CF charity exploits) but we were always told he would be very lucky to make 30 years old – this new treatment is totally life-changing and will fully extend his life”
It is estimated about half of the 10,000 patients in the UK will benefit from these drugs.
Cystic fibrosis is a life-shortening genetic condition that can cause fatal lung damage as well as Pancreas and liver problems.
Only about half of those with the condition currently live to the age of 30/40.
Samantha a pro campaigner for the CF trust said “As it sinks in and we have hopefully reached a milestone for my brother and many thousands of others I hope everybody for a couple of weeks can turn their attention to the Malaga orphanage appeal to help those poor little ones in need”
“Life is such a wonderful thing – dreams do actually come true but with loving and caring anything is possible to make a difference” she ended with.
If you would like to make a big difference to a child’s life and you’ve enjoyed this wonderful news today please make a small donation to https://www.gofundme.com/f/beunited-for-malaga-orphans
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