Gift of life for schoolboy after Cystic Fibrosis drug boss plea
A CYSTIC fibrosis sufferer aged nine who wrote to the boss of a drugs giant pleading with him to strike a deal with the NHS has finally taken his first Orkambi pill. Tristan Scott-Binns asked Dr Jeff Leiden, boss of US pharmaceutical firm Vertex, for their life-saving drugs to be made available for free.
He revealed in the letter how he lost his uncle Adam, 25, in 1999 to CF. Later his father Andrew hanged himself after suffering from depression, leaving him to be raised by his grandparents John Binns, 71, and Frances, 69. Dr Leiden was so moved he wrote back, vowing he “won’t rest” until he has signed the NHS deal. Just weeks ago our CF campaign secured victory when Vertex agreed a deal for its current drugs Orkambi and Symkevi.
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Yesterday delighted Tristan, of Holmfirth, West Yorkshire, spoke of his relief five days after starting Orkambi.
Tristan said: “I feel great. I know that I’m lucky and it’s early but I think I feel better already.”
His grandfather John said: “On Thursday I turned 71 and this is simply the best birthday present.
“When the Orkambi arrived we were so happy. We have fought so long to get it.
“Tristan was delighted. It was like Christmas Day for him. It was amazing to see him beaming.
“We are deeply grateful to the Daily Express for being with us all the way. We couldn’t have done it without the paper.”
Tristan told Dr Leiden: “My Daddy was very brave but his younger triplet brother Adam had died from CF.
“My dad found it quite hard to look after me. He died in 2016.
“I now live with my Granny and Grandpa.
“Like me, my uncle Adam was born with CF and he died aged 25.
“I don’t want to die. Well not yet. It’s really hard work having to take all of the medicines every day. I have to do lots of exercise and physio.
“Can you please agree to let me and others like me, get your drugs ‘for free’ on the NHS?”
Dr Leiden replied in a personal email that he shared with the Daily Express. He wrote: “I recognise the huge challenges caused by CF and its impact on your whole family.
“I also understand you want to live a long and full life. Finding a solution [with NHS England] is a top priority for us. I won’t rest until all eligible patients access our medicines.”
Grandad John added: “We all want the upcoming Vertex wonder drug Trikafta as soon as possible. And like the Daily Express, we won’t give in until it is available on the NHS, too.”
