Trikafta campaign group calling on Government to fund 'miracle' drug for cystic fibrosis sufferers

Pressure is mounting on the Government and Pharmac to fund a drug described as a "miracle" for cystic fibrosis sufferers.

It follows Newshub's latest Because It Matters story about 17-year-old Bella Powell who saw life-changing results after taking Trikafta for just two weeks.

There are 503 patients now campaigning for the drug to be made easily available in New Zealand, arguing the benefits greatly outweigh the cost.

Founder of group 'Trikafta for Kiwis' Carmen Shanks says they are calling on the Government to make a deal with Vertex, the company that owns the drug, so it's more affordable for New Zealanders.

"It's basically the drug we've all been waiting for. We need to start the ball rolling and at present that call hasn't started rolling yet," she says.

Other countries like Argentina and Scotland have got around the impasse. Scotland is New Zealand's closest comparison; its government bypassed their equivalent of Pharmac and is now funding other cystic fibrosis drugs in the Vertex arsenal, and Trikafta is in the pipeline. 

But New Zealand's Government isn't prepared to get involved.

"What we have done is put $400 million more dollars into Pharmac to make some of those choices for new drugs," Prime Minister Jacinda Ardern says.

Pharmac says it talked to Vertex about Trikafta earlier this year but it's yet to get a request from the company to approve it. 

Vertex says it wants to better understand the needs of patients, Medsafe and Pharmac first, as the chorus from those suffering gets louder.

"We're not going to rest until we have this," Shanks says.

Shanks also has cystic fibrosis, and says it can be heartbreaking to deal with in everyday life.

"I don't want my son to keep telling me, 'Mum go and have a rest, I want you to be able to play with me later'."

Trikafta would cost $236 million per year in total to treat all patients with cystic fibrosis.

Bella and her mum Alley also want the drug subsidised.

"You're putting a price on not just my life, there are 500 other kids and adults with this," Bella says.

Bella only has a three-month supply of the drug, and Vertex would charge the family almost half-a-million dollars for one year's worth.

"It is extortion that pharmaceuticals can dangle a carrot, for want of a better word," Alley says.