Funding approved for life-changing CF drug

Minister for Health James Reilly: said his department had made provision for 'EUR20 million plus funding a year' to provide for the supply of the drug, Kalydeco.

Minister for Health James Reilly: said his department had made provision for 'EUR20 million plus funding a year' to provide for the supply of the drug, Kalydeco.

Fri, Feb 1, 2013, 00:00

Minister for Health James Reilly said today the Government had approved funding for a life-changing drug used in the treatment of cystic fibrosis which will benefit about 120 people suffering from the disease.

Dr Reilly said his department had made provision for "€20 million plus funding a year" to provide for the supply of the drug, Kalydeco, which will become available from March 1st to some 120 children and teenagers with a particular type of CF.

Dr Reilly said that he had received a letter from the HSE chief executive Tony O’Brien seeking a policy directive on providing the new drug, and following discussions with Taoiseach Enda Kenny, they had decided today to approve funding for the drug.

"I think this is a very positive story and it’s certainly going to improve the quality of life for 120 Irish citizens with a particular form of cystic fibrosis .... I think this is a good breakthrough and offers more in the way of hope to people with cystic fibrosis in this country," he said.

"I don’t want to endanger the deal but we have made provision for it in our budget - there were protracted negotiations and a final figure has been reached - it’s a substantial figure but nonetheless, how do you value the life of a child?"

Dr Reilly made the announcement when opening the Mercy Urgent Care Centre in Gurranebraher in Cork where he was accompanied by Minister for State Kathleen Lynch and Cork North West Fine Gael TD Aine Collins, whose daughter, Lily, suffers from CF. "I’m personally delighted. I have a daughter who has cystic fibrosis and she has that particular gene type and this will literally change her life and bring new hope to all of us - as parent, all my hopes and dreams have come true with this announcement," Ms Collins said.

Cystic fibrosis campaigner and Irish Times columnist Orla Tinsley said it is a "wonderful" day for people with cystic fibrosis in Ireland.

“This is a wonderful step forward for people with CF in Ireland. It is a great result after a frustrating wait,” she said. “It is actually a miracle drug. There are immediate effects for people who are able to take it. It is the greatest thing to happen in the history of the illness. It’s a great day. It’s an emotional day.”

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