A CASTLEISLAND father who has dedicated the best part of 10 years to raising funds for specialised facilities for Cystic Fibrosis (CF) sufferers has said he is devastated at the government's decision not to finance a new drug that would dramatically improve his son's life.
Through his charity, Build 4 Life, Joe Browne has raised almost €4 million to fund all CF facilities at CUH - eliminating any cost to the State. Yet this week, he and his family were heartbreakon with the news that the new CF drug, Kalydeco, was deemed ' too expensive' to be made available here .
The passionate CF campaigner explained that the benefit of Kalydeco to his son Padraig would have been life-changing, given that the 12-year-old has two copies of the G551D mutation which Kalydeco targets. It is the first ever drug to directly affect the defects caused by these mutations, leading to extraordinary improvements in patients' lung function.
Instead, he and his family are this week left reeling that the government has put a price on his son's life by denying him, and others, this new drug. A CASTLEISLAND father who has raised almost €4 million for dedicated Cystic Fibrosis (CF) facilities at Cork University Hospital has said he feels utterly devastated at the Government's decision not to finance a new drug that would dramatically improve his son's quality of life.
Joe Browne, who founded Build4Life over eight years ago in response to the Government's lack of action on CF facilities, says it is impossible to accept that a drug that would prolong his son's life has been deemed too expensive to roll out here.
The passionate CF campaigner explained that the benefit of Kalydeco to his son Padraig would be life-changing, given that the 12-year-old has two copies of the G551D mutation which Kalydeco targets. It is the first ever drug to directly affect the defects caused by these mutations, leading to extraordinary improvements in patients' lung function.
"Kalydeco has been proven to have dramatic effects on the quality of life for people with one copy of the G551D mutation, so you can imagine how well it would work for Padraig who has two," Joe said. "For us it's highly significant but it's important to remember also that up to 20 per cent of the CF population in Cork and Kerry have one copy, which makes it the highest percentage of that mutation in the world."
Joe says that the government's decision not to finance the drug - which would cost the State approximately €25 million a year - has come as a double blow to the family, who had to pull out of Kalydeco trials two and a half years ago when Padraig got tonsilitis.
"If Padraig had gone on the trials back then he'd still be on this drug now, and that has always played on our minds, but I suppose we always felt that one day it would be available here," Joe said. "To hear this week that the government has deemed it to be too expensive is shocking and really difficult news to take."
While Joe accepts that the cost of the drug is extremely high - approximately € 234,000 per patient per year - he says there is money being spent far more 'foolishly'"
They're telling me that they can't afford to pay €25 million for a drug that will save lives but they can fork out € 180 million on the Tralee bypass. Are you kidding me here?" an angry Joe said.
"This will have a dramatic effect on people's lives. What will the bypass do only get you out of Tralee five minutes faster. It doesn't make sense."
Joe says that after all the effort he and his family have put into fully funding state of the art facilities at CUH, they had hoped against hope that they might just get a break this time.
Instead, he now faces another uphill battle with the government to convince them to reverse their decision and invest in people with CF.
If not, Joe and his family would seriously consider emigrating to England, Scotland or the US, where the drug is available.
"We're talking about a progressive illness here so we don't have time to wait around. The prognosis isn't good in Ireland so why wouldn't I go somewhere know my child will have a better quality of life. This drug is a game changer, but yet again it's the people with Cystic Fibrosis who are left wanting by our government."