As Australians get 'miracle' cystic fibrosis drug Trikafta for single-digit dollars, Kiwis have paid hundreds of thousands

Forty-three thousand Kiwis have signed a petition asking the Government and Pharmac to fund what those with cystic fibrosis (CF) say is a "miracle drug". 

Trikafta has just been added to the Pharmaceutical Benefits Scheme in Australia, meaning it now costs those across the ditch single-digit dollars instead of the hundreds of thousands some Kiwis have paid and most cannot afford.  

Sophie Shelton and Chloe Hunt, whose young children Poppy and Alaric have CF, are among the signatures on the 43,000 strong petition. It could one day help their little ones and it could also help Tania Tanfield's 16-year-old son Max right now. 

"How do we have a quality of life when we know even when we're out of [the] hospital? It's only going to be a few weeks until we're back there again," Tanfield tells Newshub. "We're absolutely desperate for Trikafta - we need it [and] Max needs it today."

On Monday, the petition was presented to Labour MP Shanan Halbert in Cornwall park - with representatives from ACT and the Greens speaking at the event too. 

Carmen Shanks is behind it the petition. She lives with CF herself and has used Trikafta through donations. 

"It's truly mental torture to know there is something as life-changing and effective as Trikafta but it is out of reach for me because of the country that I live in," she says.

Trikafta costs hundreds of thousands of dollars a year in New Zealand. Families here want it funded as it has just been across the ditch; as little as $6.80 for a prescription, at most $42.50.

"It would mean Poppy would have limitless life and she could fulfil any goals that she has," Shelton says.

Evidence of that has been made clear in Lili and Manaia Graham, who Newshub interviewed last year. On Monday they shared their news for the first time; they have been using Trikafta for a month and it's changed their lives. 

"I just know this is a life-saving drug that I know everybody should have and I don't know why kids, CF patients, all have to be on the verge of dying for their lives to be saved," Lili says. "I just want everyone to have this drug."

But Pharmac says before that can happen, it would need a deal with Trikafta's supplier and enough money in its budget.