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CF patients celebrate a chance to live

CYSTIC fibrosis sufferers are celebrating after Health Minister James Reilly relented on his decision not to make a 'miracle drug' available in Ireland.

The €28m spend on the Kalydeco is expected to change the lives of 120 people in Ireland.

It will be made available from March 1, despite claims by the Government just weeks ago that it was too expensive.

The drug, which was discovered by accident, will help to treat the 10pc of CF sufferers who suffer from a particular mutation of the condition.

In specific cases it can result in enhanced lung function, weight gain, improved mobility and a dramatic reduction in pulmonary problems.

It is estimated that providing the new treatment for all qualifying patients will cost €28m on an annual basis.

The National Centre for Pharmacoeconomics recently recommended against it.

However, the turnaround was made after discussions with the manufacturers resulted in significant savings.

Dr Reilly described the drug and its provision in Ireland as "a major breakthrough". He said it would transform the lives of young CF patients and the investment was warranted.

"I do not want to endanger the deal, but we have made provision for it in our budget.

campaigner

"There were protracted negotiations and a final figure has been reached. It is a substantial figure – but how do you value the life of a child?" the Minister asked.

Cystic Fibrosis Ireland chief executive Phillip Watt described the announcement as "groundbreaking" and said it was "very important day in the history of CF care in Ireland".

Campaigner Orla Tinsley said it was a "wonderful" day.

"It is 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.

"I know a person who was on a transplant list for a long time and would have died without a transplant. But after taking the pill for a month, they are now off the transplant list and their quality of life is much better."

Some of 120 people who will benefit from the new drug described their delight.

Pamela O'Connor (29) from Cork and her brother Jason (19) will both benefit from the drug.

"Today my son Scott is celebrating his 10th birthday. After the announcement, I can imagine being around to see him when he's 20 or maybe when he's 30, so it's great news."

Politicians have welcomed the announcement.

Fine Gael TD Aine Collins, whose daughter Lily (4) suffers from CF, said she was "absolutely delighted".

"Lily has that particular gene type and this will change her life. It will offer new hope to all of us and, as a parent, all my hopes and dreams have come true with this news," she said.

hnews@herald.ie


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