Life-saving CF drug Kaftrio 'powerful and brilliant'

Friday is Wear Yellow Day to raise awareness of cystic fibrosis

Last year's announcement that "life-saver" drug Kaftrio was to be made available on the NHS was "mind-blowing" for thousands of people with cystic fibrosis.

This included Charlie Fry author Martin Smith, who at 41 was approaching what he described as the average life expectancy age for people with CF.

But things were not straightforward. He was one of a small number of applicants initially turned down to take the drug.

"That was really hard to take," he said.

"I was really pleased for other people, and especially for the kids who would benefit. But there was a part of me asking 'why me?"

Being able to to have a picnic in the park with family and friends is very special for Martin Smith

The Cystic Fibrosis Trust says the drug, which it described as life-saving, can be prescribed to people aged 12 and over, with certain mutations of the gene that causes CF.

Former Coventry Telegraph journalist Mr Smith, who lives in Northampton, was one of a small number of people who fell through the net.

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Devastated, he and his wife Natalie only told a small number of people the application had been turned down.

"I felt I had let everybody down, which is ridiculous but how I felt," he said.

"And everyone would have been outraged on my behalf and I couldn't deal with that."

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

In December, another application for him to be prescribed Kaftrio was made.

While waiting, his health started to deteriorate, resulting in a three-week stay at the Royal Brompton Hospital, a specialist CF centre, in London,

"It was hard. Normally I would have visitors, or be able to go and have a coffee on the Kings Road. But I couldn't leave the room and I couldn't have visitors.

"Things were pretty rubbish - my chest was really unstable.

"And then, the consultants said they had the go ahead for Kaftrio. I cried, well I cry all the time really. We all cried.

"I'd love to say I didn't pin all my hopes on it, but I did. I just really wanted it to work."

Martin Smith wrote his Charlie Fry series of books for daughter Emily, and to raise awareness of cystic fibrosis

From the first time of taking it, he noticed a difference.

A small cough developed which continued through the rest of the day and night, bringing up all the mucus that can collect on CF sufferers lungs.

And now?

"I've hardly any of it, the mucus has just gone. I still have CF - it is not a cure. But it is a powerful and utterly brilliant medication that for younger people will reinvent their lives."

As an older CF sufferer, Mr Smith will still live with the damage previously caused to his lungs and other parts of his body (he has osteoporosis and cataracts) but says the drug has given him a new lease of life.

"Last weekend we had a picnic in Hall Park in Rushden on Saturday afternoon. We took my mum, we met friends - that's special. And I felt fine afterwards."

The Charlie Fry series of books, about a football boy wonder who has CF, was written by Mr Smith as a way of raising awareness of the condition. A new book, where Charlie is picked for England and goes to the Euros, was published last month.

Friday is Wear Yellow Day, supporting people with CF.

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