Boy, 9, gets life-saving pills on NHS after writing to Cystic Fibrosis drug boss

A nine-year-old cystic fibrosis sufferer has received his life-saving medication after writing to the drugs giant to ask for the drugs to be made available for free on the NHS.

Little Tristan Scott-Binns penned a letter to pharmaceutical firm Vertex's chief Dr Jeff Leiden explaining how the genetic condition affects his family members.

He revealed how he lost his uncle Adam to cystic fibrosis in 1999 and his father Andrew hanged himself after suffering from depression.

Tristan was left to be raised by his grandparents, John Binns, 71, and Frances, 69.


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He wrote: "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?"


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His words moved Dr Leiden, who wrote back and vowed he 'wont' rest' until he has signed a deal with NHS.

Tristan, of Holmfirth in West Yorkshire, was given Orkambi pills for his condition.

He told Daily Express : "I feel great. I know that I'm lucky and it's early but I think I feel better already."

Grandpa John, who has just turned 71 on Thursday, said it is the best birthday present.

John said: "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."

Dr Leiden replied in a personal email and said: "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."

John added: "We all want the upcoming Vertex wonder drug Trikafta as son as possible."

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