A campaign to make Trikafta - a life-saving but eye-wateringly expensive medication for cystic fibrosis - more accessible has had a major breakthrough on Friday night.
Vertex, the American company that manufactures the drug, has promised to work with Medsafe and Pharmac to make the drug available in New Zealand in the near future.
Vertex told Newshub on Friday that the company is going to apply to Medsafe.
It's great news for young Kiwi Izaeah Twose, who has had his lungs gradually destroyed by cystic fibrosis, a genetic condition affecting more than 530 people in the New Zealand, over 20 years.
For the past three months, Trikafta has kept Izaeah alive.
"I will die without Trikafta. Less than six months, less than a year," he said.
The problem is Trikafta costs $430,000 a year, and Izaeah was reliant on a four-month supply provided by an American charity.
He was down to his final 40 days when a $35,000 surprise arrived in the mail.
"We got home and there was a package on the counter, which was curious because I pretty much never buy things online. So we opened it up and it was another box of Trikafta," he told Newshub.
It was the gift of life, which had come from a complete stranger.
"[It had] no return address or number of anything else attached to it," he said.
It has also been a difficult journey for Twose's mother, Lavinia Van Duin.
"I spent most of my life waiting for him to die because that was expected, rather than watching him live," she said.
She said she was overwhelmed by the gesture.
The new box of pills brings Izaeah one month closer to the possibility of having the drug funded in New Zealand.
Trikafta would need to be funded by Pharmac to bring the price down for people like Izaeah.
When Newshub first met him in early February, Vertex had not even applied - but on Friday, it said it is "pleased to confirm it will submit its application to Medsafe over the coming months".
"We have reached out to Pharmac and are already in discussion with them about a path forward."
Medsafe, which approves drugs for use in New Zealand, said they are talking to the company about using a "streamline process" and Pharmac is asking the drug company to make a funding application at the same time, which would speed things up.
Lavinia hopes Izaeah holds on long enough to see the day it's funded.
"I know there are only a small amount of people with CF but they are the people we have. They're our children, grandchildren, nephews, and they deserve to live too."
Lavinia knows it better than most. In 2001 she lost her son Lucky to cystic fibrosis.
"He was one of my twins, they are 22 now. He died the day before they turned three years old," she said.
Together, Izaeah and his Mum have battled on - something Izaeah's anonymous Trikafta donor is urging him to do too.
"There was a message on it, and it just said 'keep fighting bro'," Izaeah said.
