Pharmac can't progress Cystic Fibrosis drug Trikafta - CF New Zealand

A cystic fibrosis sufferer holding a box of trikafta. Photo / File

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 [investment options] list.

These have been outlined as: More information that could change Pharmac's factors for consideration, a change in the price offered by manufacturer Vertex, and an 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 list, this would not happen before December.

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

Pharmac director of operations Lisa Williams said it understood the substantial health need of people living with cystic fibrosis in New Zealand and the health benefits Trikafta offered.

"Trikafta remains a medicine Pharmac would like to fund, subject to available budget."

Williams said it kept the ranking of treatments on its options for investment list confidential for commerical reasons.

This ensured it could negotiate the best prices so more New Zealanders could access the treatments they needed.

"We take our decision-making responsibility seriously – we all have friends, families and whānau affected by health issues. Every dollar we get in the pharmaceutical budget we spend on medicines, vaccines, and devices.

"All Pharmac staff are motivated to fund as many products as we can to achieve the best health outcomes for New Zealanders."

Williams said there were 79 different treatments on its options list, all of which would deliver health benefits for the people that needed them.

After the pharmaceutical budget increase announced in May, Pharmac was working its way through the list, trying to secure as many products as the budget allowed.

So far this financial year, Pharmac had made 18 new investments - four new medicines and wider access to 14 – "and there are more to come."

Williams said it had met with Vertex to reiterate its commitment to making progress that would secure the public funding of Trikafta.

"We will continue to work closely with Vertex staff to try to find a way forward."