Kiwi with cystic fibrosis says he'll 'probably die' once his supply of life-saving drug runs out

A 20-year-old with cystic fibrosis who isn't expected to live much past his 21st birthday is calling on regulators to help fund a life-saving drug.

Izaeah Twose received a one-off four-month supply of Trikafta, a drug that drastically changes the lives of people with cystic fibrosis, but he only has 40 days' worth of pills left.

"I'll probably die," he says, addressing the brutal reality of his genetic disorder that has been destroying his lungs.

"You cough so much you think 'this is how I'm going to die'. You're coughing so much you're not taking any air in. So it's scary."

Cystic fibrosis clogs up your lungs with mucus, wearing them out, and making it harder and harder to breathe. Even getting down the stairs filled Twose with fear, until he got his four-month supply of Trikafta.

"It's a miracle drug. It's changed my life so much."

The problem is Trikafta costs over $430,000 a year.

Twose was donated this one-off supply by an international organisation called CF Vests for Life.

"I just pop two of these [pills] out, $467 a pill," he says.

But once his supply runs out, he says he can't afford to buy more.

"I'm very very lucky to have what I do have."

There are no other options, not even a lung transplant because he "wouldn't survive on the operating table".

Trikafta has had remarkable results for Kiwis Bella Powell and Ed Lee, and both say it's a "miracle" drug.

For Twose, his "miracle" is getting to live.

"I will die without Trikafta. Less than six months, less than a year," he says.

His friend Juliet died last year while waiting for Trikafta. She was 36.

"It was the only thing that could help her, that had a chance to help her. But she couldn't afford it, so unlucky. Just couldn't live. Didn't have enough money," he says.

The problem is that Trikafta isn't publicly funded.

So on behalf of the 540 Kiwis with cystic fibrosis, Twose is calling on American drug company Vertex, drug buying agency Pharmac, and political leaders that know about the drug to help.

"Just please, care. Just care," he says.

But for him, there's the realisation that any help for him may not come in time.

"It is going to be a battle to stay alive."