Mum of Hawke's Bay teen with cystic fibrosis hails step toward new drug funding

Amber Fisher, left, and mum Claire Fisher in 2016. Photo / NZME

A Hawke's Bay family is celebrating Pharmac's potential funding of Trikafta - a drug that will increase both the quality and length of life of New Zealanders who are living with cystic fibrosis.

Pharmac has also announced it has made NZ the first country to make an application for access to the drug for patients under 12.

It comes after some 18 months of campaigning led by Cystic Fibrosis New Zealand and championed locally by the Fisher family.

Claire Fisher, mum of teenager Amber Fisher who is living with cystic fibrosis, says the progress helps sustain their hope for a possible Trikafta-funded future.

"We will be crossing our fingers that sooner rather than later we hear the amazing news that New Zealand is doing the right thing and ensuring that all Kiwis that can benefit from Trikafta have access to it."

The funding of Trikafta would make accessible a medication that previously cost upwards of $400,000 a year.

Trikafta is a landmark drug treatment that succeeds in around 90 per cent of patients with cystic fibrosis, increasing their quality of life and life expectancy.

"When Pharmac funds Trikafta we will no longer consider our daughter has a life-shortening condition, we will know that she has time to achieve all of her goals and dreams."

Pharmac has started its funding assessment process for Trikafta after receiving an application from pharmaceutical company Vertex.

"We asked Vertex almost a year ago to submit an application and their supporting clinical information," says Pharmac's director of operations Lisa Williams.

"Before we can fund any medicine, we need advice from our clinical experts, a deal with the medicine supplier, and enough money in the budget to fund it now and in the future.

"Both our Respiratory Subcommittee and our Pharmacology and Therapeutics Advisory Committee (PTAC) will assess the scientific evidence on this medicine within the next few months. They will make recommendations to us on whether we should fund the medicine or not.

"If they recommend that it should be funded, we will undertake our economic assessment of the medicine and compare and rank it against all other medicines awaiting funding.

"If it makes it to our options for investment list, we'll aim to fund it when we have money available in our budget. I do want to acknowledge that it is one of the most expensive applications we have ever received," Ms Williams says.