Wednesday, 23 Sep 2020

Cystic fibrosis: Wonder pill for CF sufferers is released across UK

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The drug, called Kaftrio, has been dubbed “almost a cure” for the lifelimiting genetic condition which destroys lungs with sticky mucus. It is yet another victory for the Daily Express, which began calling for the drug to be made free on the NHS in February last year. Patients in England were the first to benefit after the first deal was agreed last month.

Health officials in Wales and Northern Ireland followed suit in the last fortnight.

The Scottish agreement means that the Isle of Man and Channel Islands are the only parts of the country not covered.

One of the 860 Scottish sufferers helped by this week’s deal is Kelli Gallacher, 26.

She wrote to First Minister Nicola Sturgeon in 2018 begging: “Please don’t let me die.”

Kelli, from Dunbartonshire, is taking Vertex’s Symkevi drug but thanks to the new deal she will soon be able to access the far superior Kaftrio pill.

Delighted campaigner and mum Maggie Gallacher, 53, told us: “It’s been years coming but this is amazing news.

“Now hopefully many hundreds of parents won’t have to go through the gruelling battles we have gone through to get these lifesaving medicines.

“Kelli is over the moon. This will help secure her future.

“I don’t drink, so will celebrate instead tonight with some Irn-Bru in a champagne glass.”

Last autumn Vertex signed deals with all of the UK countries for their current pills, Orkambi, Symkevi and Kalydeco. They are suitable for around 50 percent of sufferers.

But last month NHS England signed the first UK landmark deal for Vertex’s latest and more effective drug Kaftrio.

It will be licensed for use in Europe next month and the rollout of drugs to sufferers across the UK will start shortly afterwards.

Kaftrio will eventually be able to be taken by 90 per cent of UK sufferers but as yet is only licensed for adults and children aged over 12.

Until then young CF children, who are medically able to, can only take Orkambi.

Scottish Health Secretary Jeane Freeman, said: “This is a potentially transformational treatment for CF.

“I am delighted patients in Scotland will benefit and lead longer, healthier lives.”

Vertex told us: “We look forward to continue working in collaboration with the authorities in Scotland to finalise the agreement as soon as possible.”

My Ayden would be proud

One CF sufferer who campaigned for Kaftrio was schoolboy Ayden Cochrane, who died aged 13 in January just hours after being approved compassionate access to the wonder drug.

Yesterday his mum told how her brave boy would have been proud to have helped towards this lifesaving deal.

Mother-of-five Tracey Cochrane, from Johnstone, Scotland, said: “We are overwhelmed by the news today. Ayden would have been mighty proud to be a part of that fight.

“This would have made him really happy and gives us some comfort that CF sufferers we know now have a great chance at life.

“We definitely have moments of wishing this was last year, but Ayden was never negative about his life.

“So we take great pride in his fight.”

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