Pharmac is not in a position to progress funding on the life-extending Cystic Fibrosis drug, Trikafta, Cystic Fibrosis New Zealand has said today.

In a statement released by Cystic Fibrosis New Zealand (CFNZ), it said it had been told by Pharmac Trikafta1 had not moved up the Options for Investment List.

"The outcome of this is that Pharmac is not in a position to move forward with funding Trikafta at this time, and that funding is unlikely to occur without changes to the information at hand," the CFNZ statement said.

Last month Pharmac said it had received a clinical recommendation that Trikafta should be funded for people aged 6 and older and had already re-ranked Trikafta on its Options for Investment list following updated advice from its Pharmacology and Therapeutics Advisory Committee.

Today, the CFNZ statement said Pharmac told it Trikafta was re-ranked again in September, but it had not moved high enough up the OFI List for it to progress to funding at this time.

"Pharmac has advised CFNZ that changes would be needed to one or more of the factors for consideration before Trikafta could be re-ranked again and have the chance to move further up the OFI List.

These have been outlined as: More information that could change Pharmac's Factors for Consideration, a change in the price offered by Vertex, additional budget uplift."

The statement said Pharmac had advised CFNZ "the door is not closed" and "Trikafta is a medicine we want to fund". But, even if changes could be made to enable Trikafta to move up the OFI List, Pharmac has advised this would not happen before December 2022.

Burns said CFNZ and the cystic fibrosis community "remains relentless in our determination to get Trikafta funded in New Zealand".

Pharmac has been approached for comment.