After a year-long battle, a miracle drug is about to be made available free for the most critically ill Kiwis living with cystic fibrosis.
Izaeah Twose wasn't sure he'd make his recent 21st birthday, but he's alive and kicking and still celebrating. It's because instead of a car or a new iPhone, he's been given the gift of life.
Life's not been easy for Izaeah Twose. For 21 years his lungs have been destroyed by cystic fibrosis.
Twose is considered one of this country's most critical cases.
"People tell me I shouldn't be alive, people tell me I've been sick my whole life and I should have died several times already," he says.
For the past few months he's been taking Trikafta - a life-saving drug, that isn't yet funded in New Zealand.
It costs hundreds of thousands of dollars a year, money he doesn't have. He's been relying on the generosity of strangers to keep him alive.
But then came, the ultimate 21st present - a consistent supply of the drug for free.
"Just the biggest smile on my face and it was right before my 21st birthday so it was a really lovely birthday present to get. It was amazing," Twose says.
The drugmaker Vertex has announced a compassionate access scheme for the most critically ill Kiwis living with cystic fibrosis and Izaeah is expecting to be accepted.
"It's a lifesaver, it's a great opportunity," Cystic Fibrosis New Zealand CEO Jane Bollard says.
The programme is designed to bridge the gap while applications for the drug's use and funding are considered.
"These people don't have the luxury of time, so they can't wait while the application is considered by Medsafe and Pharmac," Bollard adds.
It's changed Twose's whole perspective on life. Now he and his girlfriend Brooke have the confidence to plan a future, one they hope will include a child.
"Having Trikafta, and having that extra strength and having that extra energy. I'm a lot more confident that I'd be able to raise my kid for a long time," he says.
But Twose says this is bigger than him.
"It's not over until the government funds it for the people who can benefit from it. The fight goes on."
Newshub understands the drugmaker is weeks away from applying to have the drug funded.
So that healthy or sick, all Kiwis living with cystic fibrosis, can breathe easier like Twose.
