Cystic Fibrosis Ireland (CFI) is calling on the Minister for Health Simon Harris to make the drug, Orkambi, available as soon as possible.

In a statement, the health service said the drug is considered to be unjustifiably expensive and will not fund the ground-breaking drug for Cystic Fibrosis sufferers.

The HSE also said it is disappointed the manufacturer, Vertex, will not lower what it has called “the exorbitant price.”

CFI described the leak of the news to a Sunday newspaper as heartless and said it was disrespectful to the Health Minister and patients who have been waiting for months for a development.

Philip Watt, CEO of CF Ireland said the group has sought a meeting with Mr Harris who he said has indicated that “this is not the end of the line” for the drug in Ireland.

Mr Watt said: “With around 1,200 people with cystic fibrosis here in Ireland, we have the highest rate of the disease per head of population in the world. We also have some of the most severe forms of cystic fibrosis.

“It is rare that a therapy comes along that has been shown to reduce hospitalisations by up to 40% and further it significantly retards the progression of cystic fibrosis for those who stand to benefit from this drug.

“This drug would have resulted in other major savings to the HSE from both reduced hospitalisation and less reliance on other expensive CF drugs and reduced dependency on transplants.”