« BackKerry mother ‘devastated’ by decision not to fund Orkambi for Cystic Fibrosis patients

Cystic Fibrosis IrelandA Kerry mother whose six-year-old daughter suffers from Cystic Fibrosis has spoken of her devastation that the National Centre for Pharmaeconomics has refused to fund Orkambi.

Marisa Reidy says her daughter Hanna would be a suitable candidate for the drug – which has been described as a game-changer – when she is older.

Kerry has one of the highest instances of Cystic Fibrosis in the country and most sufferers have the strain of the disease that responds to Orkambi.

Orkambi which is made by Vertex Pharmaceuticals, costs around €158,000 per patient annually and was rejected by the NCPE for the HSE on the grounds its ‘cost effectiveness’ hasn’t been proven.

Ms Reidy, who is a journalist with The Kerryman, says she hopes continued negotiations will bring down the cost of the life-saving drug.

She has vowed to fight on so that Orkambi becomes available to those who need it.