Update 9.07pm: Cystic Fibrosis Ireland has described the leak to a Sunday newspaper that the HSE is unlikely to fund the CF drug, Orkambi, as “heartless”.

The HSE has since issued a statement stating that to date the drug has been considered unjustifiably expensive.

The HSE expressed its disappointment at the lack of meaningful engagement by the manufacturer, Vertex, in lowering the price of Orkambi for Irish patients.

Philip Watt, CEO of CF Ireland, said thatthis news is devastating for people with cystic fibrosis.

“Our association is absolutely dismayed about this decisino and also the way it’s been conveyed to us,” he said.

“The HSE didn’t even tell the Minister, when they issued the statement yesterday, and it’s utter devastation for our parents and people with CF who would have stood to benefit from this particualr drug.”

Earlier:

The HSE has hit out at the drug company Vertex for its “disappointing” engagement regarding price negotiations for the Cystic Fibrosis drug Orkambi.

The drug is understood to cost €150,000 a year.

According to the HSE: “Considerable engagement and negotiation with the manufacturer Vertex” was undertaken “over a protracted period in an effort to secure a significant price reduction.”

However the HSE has stated: “To date the drug has been considered unjustifiably expensive and not sufficiently cost effective by both the National Centre for Pharmacoeconomics (NCPE) and the HSE Drugs Committee.”

The HSE went on to say that it was “disappointed” with the level of “meaningful engagement by the manufacturer in lowering the “exorbitant price” of the drug.

The Health Executive concluded by saying no decision had yet been made about whether or not it would be purchasing the drug for Irish Cystic Fibrosis sufferers.

The HSE would be assessing the recommendation of the HSE’s Drug Committee together with a NCPE recommendation and other expert advice before making a decision “taking into consideration the manufacturers latest price offer.”