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Sunday 21 September 2014

MASON'S MUM FIGHTS TO KEEP CYSTIC FIBROSIS DRUG AVAILABLE

GOVERNMENT TOLD DRUG IS TOO EXPENSIVE

FINTAN LAMBE

Published 29/01/2013 | 12:54

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Little Mason from Riverchapel who suffers with cystic fibrosis.

THE RIVERCHAPEL mother of a 14 month old boy with cystic bibrosis (CF) has said she is 'devastated' by advice given to the Government last week not to purchase a groundbreaking new treatment for CF because it is ' too expensive.'

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A report last week by the National Centre for Pharmaeconomics at St James's Hospital recommended the government enter into negotiations for the drug Kalydeco as they deemed it too expensive at the current cost of €234,804 per patient per year.

'It takes people off transplant lists, that's how good it is,' said Claire Whelan, mother of Mason, who was diagnosed with cystic fibrosis when he was just three weeks old.

'It affects the whole CF community because at the moment, the type of CF it can help is called the Celtic Gene, or the G551 mutation,' she added. ' That covers 10 per cent of the CF population here in Ireland, which would work out at 120 people. It's as close to a cure as you can get for that type of CF.' She explained that while Mason

doesn't have the type of CF that would greatly benefit from the drug, in future, it will be put with a corrector drug, VX/809, which will help 70 per cent of the CF population worldwide. 'It's on Phase 3 trial, the last phase at the moment,' she said. ' They are getting great results from it. Kalydeco is the first step, and it will prolong life for CF sufferers.'

The life expectancy in Ireland for those living with CF is currently in the mid thirties.

'You can't start on the drug until six years of age,' said Claire. 'It will cut down on hospital visits and their quality of life will improve.'

Mason was born on November 29, 2011, and was diagnosed with CF through the newborn screening on December 22, 2011. 'It was devastating,' said Claire.

Mason's sister Holly (4) was then tested, and doesn't have cystic fibrosis. When she was a baby, the newborn screening didn't test for CF, and Mason was only the second baby to be diagnosed at Tallaght Hospital through the new screening.

' They have a much better outlook because they are catching it young,' said Claire.

Mason had a tough start because he also had a collapsed airway and needed an operation to rectify it. He spent four months in Crumlin Hospital, and went home last June. He's currently back in hospital fighting an infection.

Caring for Mason starts at 7 a.m. and continues to 11 p.m. daily. 'He's on four nebulisers a day,' said Claire, 'and two lots of physio. He's on medication from early morning to late at night. He's got a peg feeding tube into his tummy, and takes Creon tablets every times he eats to help him absorb fat, and he also takes special vitamins.

'You just get used to it and get on with it,' she said. Mason also has a Broviac line in place for his IV meds.

'He's a happy little boy,' said Claire. ' He looks like a normal 14 month old. He goes through so much in a day, and he's reaching the milestones. People can't believe how happy he is. You don't treat Mason any differently, and the routine is just part of our day now.'

She hopes to raise awareness of the condition, and will sell pins and trolley tokens in Gorey Shopping Centre during CF Awareness week from April 12 to April 19 next.

Homeward Bound Tattoos in Gorey have also offered to give her a purple heart tattoo for CF for free.

She said she hopes people will campaign to get the drug funded. 'It needs to happen,' she said. ' To me, it's a life saving drug. The company is willing to negotiate a cheaper price and I'll fight every day, like he fights every day to breathe.'

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