England

New cystic fibrosis drug Kaftrio on NHS is 'mind-blowing'

Martin Smith with daughter Emily and wife Natalie Image copyright Martin Smith
Image caption Martin Smith wrote his Charlie Fry series of books for daughter Emily, and to raise awareness of cystic fibrosis

"It's difficult to manage an illness that will limit your life - so this news is mind blowing."

So said Martin Smith, one of thousands of people with cystic fibrosis (CF) thrilled at the news "life-saver" Kaftrio is to be available on the NHS.

The former Coventry Telegraph journalist is 41, approaching what he described as the average life expectancy for people with CF.

"We have been very excited today, there has been tears in the house," he said.

"My daughter, Emily, eight, thought it meant I would be getting a third lung. Well I'm not, but this is still such good news."

'Hopeful but apprehensive'

He still faces a wait to see if he will be prescribed it. The Cystic Fibrosis Trust says the drug, which it described as life-saving, can be prescribed to "people aged 12 and over with two copies of the F508del mutation, or one copy of F508del and one copy of a 'minimal function mutation'."

Mr Smith, who lives in Northampton, has one copy of F508del and a mutation.

"I'm hopeful but apprehensive. As I understand it, not everyone will be on the list, and that will be tough to take," he said.

Image copyright Facebook
Image caption Mr Smith posted an emotional reaction to news that Kaftrio had been made available on the NHS

Cystic fibrosis can have varying symptoms, but patients usually experience thick sticky mucus in the lungs, digestive system and other organs.

Mr Smith had half his right lung removed at the age of two.

Despite regular stints in hospital, he worked in journalism and communications, before eventually having to leave employment in his 30s.

Image copyright Martin Smith
Image caption Martin Smith is the last one alive out of his friends that he made at the Royal Brompton & Harewood Hospital

"I had to give up completely. CF is degenerative, it takes over your whole life.

"You cannot stop the mucus inside you, it is never ending, it's an onslaught."

When he gave up work, he started writing his best-selling Charlie Fry series of children's books. They feature a football-mad youngster, who has CF, as a way of raising awareness of the illness.

"I write them for Emily so she can say 'my dad did that'. I never thought it would sell. It changed my life," he said.

"It's kind of ironic that my books took off as my health declined.

"It has enabled me to raise awareness about CF across the board. Leicester City have been huge supporters, along with the National Literacy Trust."

Mr Smith's lung capacity is currently at about 40%, he said, and his medication has gone up massively, which has also meant side-effects of cataracts and osteoporosis.

Despite the joy of getting the drug, Mr Smith says he suffers with "survivor guilt".

"I'm the last one (alive) out of my friends that I made at the hospital," he said.

"If only this had been around years ago."

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