Millwall fans call for urgent action on life-saving Cystic Fibrosis drug Orkambi as NHS price row continues

Josh Salisbury (02 May, 2019) Health

The drug could help dramatically improve lung function for some Cystic Fibrosis sufferers - but isn't available on the English NHS

29309Wayne Shoults (right) alongside his son, Finley, who has Cystic Fibrosis, is among the fans calling for Orkambi to be made urgent available

Millwall fans affected by Cystic Fibrosis are calling for the wonder-drug Orkambi to be urgently made available on the NHS, as a stand-off over the price continues.

The drug could dramatically improve lung function for many sufferers of Cystic Fibrosis, a genetic condition which causes a build-up of thick mucus on the lungs, shortening life expectancy.

But although Orkambi is available in other European countries, it is not prescribed on the NHS in England, amid a long-standing row between the health service, NICE and pharmaceutical company, Vertex, over its price.

Millwall fan, Wayne Shoults, is among those calling for the drug to be made available immediately, saying his son, Finley, eight, might have avoided a recent month-long hospital stay if it were.

In message to the all sides, he said: “Stop messing around, stop the bickering, and just get on with it.

“It’s just such a shame there’s a drug [to help some people with Cystic Fibrosis] and people are arguing over X, Y, Z.

“In the long run, what we pay for this drug will be outweighed by less hospital stays and fewer other drugs he has to take.”

At the moment, little Finley has to take forty tablets a day and do two daily physio sessions to dislodge mucus from his lungs and prevent infections.

Finley (pictured) might have been able to avoid a recent hospital stay if Cystic Fibrosis drug Orkambi were available on the NHS, says his dad Wayne

After seeing coverage of Finley in the News, his classmates are planning to write to Prime Minister Theresa May to ask why Orkambi is not available to people like him, said Wayne.

Millwall season ticket-holder, Nick Callaghan, has two sons with CF, Jack, aged 13 and older brother, Harvey.

Jack, who was diagnosed at six-weeks old, is taking a predecessor drug to Orkambi, called Kalydeco, also made by Vertex. It has led to miraculous and unexpected results, says Nick.

“Jack’s lung function improved by 15 per cent almost instantly and a weight gain of around 2kg was achieved within a month,” he said.

“Jack’s lung function has not declined since taking Kalydeco and he has not experienced any admissions to hospital.”

Kalydeco is an effective treatment for an estimated five per cent of UK patients carrying a certain mutation, whereas Orkambi would be effective for a much larger proportion of those with CF.

When Kalydeco was made available for around 270 patients on NHS in January 2013, including Jack, dad Nick was overcome with emotion.

“I had to leave the office without announcement, got in my car and wept tears of joy,” he said.

“I desperately want Orkambi to be made available so that thousands of families can feel the joy we did and sustain the health of their loved ones.”

READ MORE: Dad to run London Marathon on behalf of Millwall-mad son, 8, with Cystic Fibrosis

Millwall fan Craig Jones was diagnosed with CF at just three-weeks-old. He is now calling for Orkambi to made available on the NHS

Craig Jones, 34, was diagnosed with Cystic Fibrosis at three weeks old and has been a Millwall fan since he was nine-years-old.

He does not qualify for Orkambi, but says it would improve the lives of thousands of men, women and children.

“The problem with getting this drug in the UK is all down to the NHS negotiating with Vertex and there doesn’t seem to be any agreement being made from this and it’s putting people’s lives at risk,” he said.

“What needs to be done is for Orkambi to be made more affordable and also for the NHS to be stronger in their negotiations as it does feel like neither are compromising on cost and this is impacting so many lives right now.”

David Ramsden, chief executive of the Cystic Fibrosis Trust charity, echoed Craig’s call, saying:  “All three parties – NICE, NHS England and Vertex – must reach a compromise and end the agonising three year wait for this these life-saving medicines.

“Each day that passes without a deal means the risk of more damage to the lives and prospects of thousands of children and adults with cystic fibrosis across the UK.

“This tragic situation must end. No more excuses, we need action now.”

The war-of-words over the confidential pricing talks has previously seen NHS England officials accuse the pharmaceutical company of being “extreme outliers” in its pricing and behaviour in evidence to MPs.

However, Dr Jeff Leiden, Vertex CEO, rebutted the claim last month at a hearing of the Health and Social Care Committee, saying Vertex’s first priority was to get patients access to the drugs.

A Vertex spokesperson said it was unable to comment further as it is in ongoing discussions with the health authorities.

A committee meeting will be held mid-next week to discuss the drug and ongoing talks, a NICE spokesperson told the News.

A parliamentary petition for the drug to be on the NHS in England hit 100,000 signatures in March 2018, meaning it had to be debated by MPs in the Commons.

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