A leading Cystic Fibrosis campaigner has described the decision to deny funding for a groundbreaking drug as “heartbreaking”.

The National Centre for Pharmaeconomics (NCPE) said that it recognises that Orkambi is effective – but the cost is too high.

The drug has been found to dramatically reduce exacerbations and hospitalisation in people suffering from CF and would benefit around 500 patients here.

Orla Tinsley said that Orkambi is life-changing.

“It’s heartbreaking for people with CF living in Ireland, for whom Orkambi would make a life-changing, life-altering difference, in the sense Orkambi can change life for the better and in some cases can change lives,” she said.

Cystic Fibrosis Ireland (CFI) criticised today’s ruling, but noted that the ruling states that Orkambi is not funded “at submitted cost”, which could leave the door open for further price negotiations.

The group has now called on the Government to clarify if it will enter into further negotiations and calls on manufacturer Vertex to significantly reduce the price of Orkambi as part of these negotiations.

“CF patients in Ireland are dismayed by today’s ruling from the NCPE which recommends that the ground-breaking drug ‘Orkambi’ is not funded,” said Cystic Fibrosis Ireland CEO Philip Watt.

“We support a fairer deal for this drug but it will be a travesty if this drug is not provided to our patients or if there is a significant delay in providing this drug.”

Around 500 people with Cystic Fibrosis have the potential to benefit from Orkambi in Ireland, according to CFI.