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'My fate is in the hands of those making decisions within the NHS' 'My fate is in the hands of those making decisions within the NHS'.

Byline: Mark Smith Health Correspondent mark.smith@walesonline.co.uk

PATIENTS in Wales with a rare form of cystic fibrosis say they are being denied a "life-prolonging" treatment which is available to hundreds of people with a more common form of the condition.

Medics say ivacaftor, known as Kalydeco, can radically transform the health of users and is predicted to increase life expectancy.

It has already been delivered to more than 360 people in the UK, including about 19 in Wales who have the more common cystic fibrosis (CF) G551D mutation.

But the Cystic Fibrosis Trust has identified at least 44 other people in England and Wales who stand to benefit from the drug.

At present, this small cohort, thought to be as few as three in Wales, are still waiting to find out if they will be offered the treatment.

The Welsh Government has urged the manufacturer of Kalydeco, Vertex, to engage with the appraisal process in Wales.

Van driver Mike Board, from Pontypridd, is one of the group identified by the charity who carry one of eight additional mutations found to be affected by the drug.

The 30-year-old has just bought a house with his girlfriend Laila and they are hoping to start a family. But he could soon could be faced with the prospect of needing a lifesaving double lung transplant if he's not able to access the pioneering drug.

Mike said: "Naively I hadn't realised that when the drug was discovered to be suitable for rarer genetic mutations and was already given to other people living with cystic fibrosis, a fight for funding would be needed.

"I was hoping that Kalydeco would be my Christmas present last year.

"I've seen first-hand the rapid and life-changing results that Kalydeco has on cystic fibrosis sufferers and the thought of not being able to receive it now that I know I am suitable is beyond comprehension.

"It feels like there is a carrot dangling in front of me. My life would transform if I had Kalydeco but my fate is in the hands of those making the decisions at the NHS, whether they will agree to fund it for the rest of us."

Mr Board said he undergoes rigorous physiotherapy and takes medication every day, which takes up a combined three hours of his time.

Ed Owen, chief execu-tive of the Cystic Fibrosis Trust, said it was "indefensible" that cystic fibrosis patients are being denied a drug which will improve their quality of life.

People with cystic fibrosis produce abnormally thick and sticky mucus in their lungs and airway and are more likely to get respiratory infections as a result.

The gut and pancreas can also be affected by the condition, so food is often not digested efficiently.

A Welsh Government spokesman said: "We understand there are three patients in Wales who may be eligible for treatment under the new, revised indications for the use of ivacaftor (Kalydeco).

"We are very aware of the care needs of these patients and urge the manufacturer (Vertex) to engage with the appraisal process in Wales.

"The All Wales Medicines Strategy Group first contacted Vertex in July 2014 and asked them to submit for appraisal but to date, and despite repeated requests, they have failed to do so."

CAPTION(S):

Mike Board, who has cystic fibrosis, with his partner Laila

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Publication:South Wales Echo (Cardiff, Wales)
Geographic Code:4EUUK
Date:Feb 12, 2015
Words:557
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