A teenager battling cystic fibrosis (CF) is calling for the Government to subsidise the miracle drug that will keep her alive.
Seventeen-year-old Bella Powell was 15 when she was told she only had two years to live if her condition went untreated.
She told The AM Show the price tag of nearly $500,000 for the drug Trikafta is devastating for everyone with the disorder.
"It's incomprehensible really," she said. "There are more than 500 Kiwis with CF that this could benefit and then you've got to think about the babies being born with this - if they can have this [drug] they're not going to go through some of the struggles I have because my lung function started declining when I was 12."
Not subsidised by state drug-buyer Pharmac, Trikafta is owned by US company Vertex and has set its price tag at $469,000 per year.
Powell only has a three month supply of the drug.
"It's been rough so to try and keep that positive attitude - especially now that I have this [drug] and my life has gotten so much better - it's terrifying to think what's going to happen when these three months end," she said.
Having the condition and not being on the drugs is like being "alive but not living", said Powell.
"It's just the little things like walking with my friends to class - not having to find the shortest way around [my] school."
Appearing alongside her daughter, mum Alley added she doesn't have to worry so much since she started taking the drug.
"Every night I'd used to go to bed and I'd worry - that I'd wake up in the morning and we'd be worse."
Alley said Trikafta is giving them hope.
"I just hope that by making this public that people understand how important it is and if you have a drug like this - you're taking people out of that hospital system," she told host Duncan Garner.
She said Pharmac's model was "definitely not world-class".
"There's a lot of people fighting for this [drug] and for us."
Pharmac says it hasn't had an application from Vertex to fund Trikafta, while Health Minister Chris Hipkins said it isn't for politicians to "second guess" those clinical decisions.