A cystic fibrosis patient is calling out American drug company Vertex, for not achieving Pharmac funding.
Bella Powell, 17, was told at age 15 she had just two years to live if her disease went untreated.
"I was looking at not making Christmas and now I'm starting year 13," Bella told Newshub.
Bella's health was so bad she could barely get out of bed. But thanks to a drug called 'Trikafta', it's completely changed her life.
"I would give my left arm to stay on it. It's something that has just completely changed my life," she said.
"There is no other way of putting it... It's been a miracle."
The American company that makes Trikafta, Vertex, raised hopes in August last year by saying it would apply to achieve Pharmac funding "in the fastest possible way".
But, in a heart-breaking development, six months on - Vertex has not yet come through on that promise - stalling the process - so Bella is calling them out.
"You're robbing people of a life by sitting there in your big towers overseas," she said.
Pharmac says without an application, it can't do anything… And is calling Vertex out too.
"We're really interested, we want the application and we're ready to look at it when you're ready to make the application to us," PHARMAC director of operations Lisa Williams said.
"It's all well and good to say there is this amazing cure of a treatment out there. But if it's not getting to the people who need it. What's the point?" Bella said.
Until now, Cystic Fibrosis was effectively a death sentence - those with it usually don't live past 40, and often die as teenagers like Bella was expected to.
The disease causes the body to make thick, sticky mucus that plugs up tubes and passageways and puts massive amounts of pressure on the lungs, wearing them out.
Bella was on stand-by for a lung transplant - but Trikafta has cleared the mucus, and changed all that.
"I haven't been allowed out of Auckland since I've been on the transplant list so it was cool to leave the Auckland region for the first time in a while."
That meant a classic Kiwi summer - like bungy-jumping with her sisters.
The problem is - Trikafta costs more than $430,000 a year.
Give a Little donations from Kiwis have ensured she has enough for this year.
Yet the hope was to get it funded here by drug buying agency Pharmac, so it was cheap and accessible for the 530 other Kiwis with Cystic Fibrosis.
And the push went right to Prime Minister Jacinda Ardern.
"She said that she had seen my story and she was following it and again recognised the need for it but again, can't make any promises as to 'we're going to get your specific drug funded," Bella said.
The point is - people like Bella Powell need it to live.
