A New Zealander living with cystic fibrosis (CF) says an application for miracle drug Trikafta to be funded is only the first step forward.
US supplier Vertex Pharmaceuticals has indicated it will officially apply to New Zealand drug-buying agency Pharmac for funding after appeals from Bella Powell and other sufferers. It has a price tag of nearly $500,000.
But 17-year-old Powell says her fate is now in the Government's hands.
Powell told Newshub on Tuesday the funding for the drug will take a huge burden off families.
"Just because us CF kids don't essentially look like we're sick doesn't mean our health problems and our struggles need to be ignored."
Powell has received donations from around the country, which she said has already made a difference. A Givealittle page to help pay for the drug has raised more than $55,100 as of Tuesday morning.
"It alleviates a lot of worry because I know that I'm not going to go back to how I was feeling and that just takes so much stress off me, and it takes so much stress off a family having to think, "How can we keep this [drug] around'?"
Meanwhile, Medicines NZ chief executive Graeme Jarvis said the drug may not cost Pharmac as much as it might seem.
"Those prices are not actually the prices that the New Zealand Government or any other Government pays," he told The AM Show.
"The companies that make modern medicines reduce the prices - they offer rebates often between 50 to 90 percent of the actual prices that you're often quoting, so we need to move away from these large numbers."
In a statement on Monday evening, a Vertex spokeswoman said it was committed to exploring access to the drug for New Zealand patients.
"Our mission is to secure the broadest sustainable access supported by the scientific evidence available, to ensure the greatest value and benefit can be delivered to patients and [the] healthcare system," the spokeswoman said. "We plan to apply to the appropriate Government agencies, using their available pathways, to achieve Pharmac-funded access in the fastest possible way."