Orkambi victory: Millwall-mad youngster, 9, gets access to life-saving Cystic Fibrosis drugs after campaign success

Josh Salisbury (27 October, 2019) Health

"We're absolutely over the moon. It'll be life-changing for Finley," said his doting dad

30074Millwall mad Finley, pictured with his dad, Wayne, will now finally get access to life-changing CF drugs like Orkambi

A Millwall-mad youngster will finally get access to life-saving Cystic Fibrosis drugs on the NHS after a long-running price battle was resolved this week.

Finley Shoults, 9, is among the thousands in the UK who could now benefit from wonder-drug Orkambi for their condition, which causes a thick build-up of mucus on the lungs, shortening life expectancy.

A bitter price dispute between the NHS in England and the manufacturer Vertex was resolved on Thursday – meaning Finley and others like him could get the drugs in just a month’s time.

Millwall-mad Finley pictured with the Lion’s Jed Wallace

Finley’s dad Wayne, who alongside other Millwall fans affected by CF had demanded the drugs be made available in a News front page appeal, said the family were “absolutely over the moon.”

“It’s been a long time coming,” he said. “It’ll be life-changing for Finley. Not just for him, but for everyone who has CF.

“It’ll just be nice for him to be able to compete with his peers. I don’t know exactly what impact it will have but it should deal with the underlying issues with his lungs.”

Wayne first found out the news via text from his wife Dannielle, both of whom are 35, while he was with Finley at a ball-pit.

“I just sobbed to myself in the corner. It was one of those ‘remember where you were’ moments,” said the doting dad, who grew up in Walworth with his wife. “It’s been very emotional these past couple of days.”

Finley pictured at The Den

But, he added, Finley wasn’t quite so moved: “In typical Finley style, he said, ‘Oh that’s great’ and just wandered off!” he laughed.

“We’ve had a lot of friends and family contact us over the past twenty-four hours with the reaction, but Finley, he’s just so blasé about it all.”

At the moment the footie-obsessed youngster has to take a plethora of drugs to deal with the genetic condition in addition to grueling daily physio exercises.

Earlier this year, he was in hospital for over a month with serious lung infections – which may have been avoided if Orkambi had been available on the NHS sooner, the Shoults family say.

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“We don’t know if he’s completely over the three bugs he had while he was in hospital,” Wayne, who now lives in Welling, said.

“But the past two months he’s been back to normal, he’s been right-as-rain.”

Doting dad Wayne raised over £6,000 for the Cystic Fibrosis Trust by running a marathon with a dyed yellow beard earlier this year

After seeing coverage of Finley’s story in this paper, Millwall star Jed Wallace – his favourite player – even got in contact with the nine-year-old to give him a signed t-shirt.

The youngsters’ classmates also decided to write the Prime Minister to ask why Orkambi hadn’t been made available on the NHS after seeing Wayne’s appeal.

Despite the ups-and-downs of the past year, the youngster has not let anything get in the way of doing what he wants to do.

He has recently taken part in a big shoot with TX Maxx, to be shown in the States, and has also done a voice-over for a Christmas ad he took part in last year.

But Wayne added: “Orkambi is not a cure, so fundraising will still have to go ahead – and the deal is only for two years so we might have to do this all over again.”

What does this week’s ORKAMBI deal mean?

Up to 5,000 including Finley are expected to benefit from the agreement

After a long-running and bitter battle, which saw a war-of-words between NHS England and pharma company Vertex, both sides have finally agreed a pricing deal.

Despite the UK having the second-highest prevalence of Cystic Fibrosis in the world, the drugs hadn’t been available on the NHS over a disagreement with Vertex’s prices.

The deal affects three of Vertex’s current products, Orkambi, Symkevi and Kalydeco, which improve lung functions for many Cystic Fibrosis sufferers.

While not all are eligible for the treatment depending on certain gene mutations, the NHS expects up to 5,000 patients in England like Finley to take up the life-changing treatments.

The drugs will begin to be prescribed within 30 days of Thursday’s announcement.

The agreement also crucially begins to open access on the NHS for new CF drugs by Vertex when they are developed, including Trikafta, which could be suitable for a wider range of people suffering from the condition.

“The deal is great value for money for the NHS, and crucially, will improve thousands of lives,” said Health Secretary Matt Hancock.

David Ramsden, chief executive of the Cystic Fibrosis Trust added: “I want to thank people with cystic fibrosis, their families and everyone who has been part of this campaign for their persistence and determination to keep on fighting.”

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