A group representing patients with cancer and rare disorders says New Zealand's access to medicines ranks at the bottom of the OECD.
It's calling on political parties to double Pharmac's funding. But the Health Minister says the claim isn't verified by an official source.
Just before she turned 13, Summer Sheridan was diagnosed with cystic fibrosis.
"That was a big massive shock to us because we weren't expecting it. None of the doctors were expecting it and she's pretty rare, none of her mutations, I don't think there's another set in New Zealand, I think there are about four in the world," her mother Emily Sheridan said.
And the rare mutations mean Summer doesn't qualify for Trikafta - the drug Pharmac approved for funding this year.
"I'd like to just be a normal kid but being in and out of hospital all the time doesn't exactly let me do that," Summer said.
The obstacles facing people like Summer are what a group representing more than one million patients want to highlight in a new campaign.
They say most Kiwis have no idea how limited their access to life-saving medicines is until they or their loved ones need them.
"They won't realise just how close they are to needing to move to Australia where more medicines are funded than they are here in New Zealand," said Cystic Fibrosis New Zealand CEO Lisa Burns.
They're calling for urgent investment in Pharmac to give New Zealand clinicians the tools and resources that are standard treatment in other OECD countries.
"The reason we're the only country in the world that has a waiting list of medicines that we want to fund is because we don't fund Pharmac to the levels that it needs to be," said Malcolm Mulholland, from Patient Voice Aotearoa.
"If we want to clear the waiting list we need to give Pharmac an additional $400 million annually."
"New Zealand is at the bottom of the OECD, 32nd out of 32 countries is embarrassing," added Burns.
Health Minister Ayesha Verrall said: "Look I agree that access to medicine is important and the Government has a strong track record on funding, however that particular figure, I haven't seen it officially verified."
Summer's already been in hospital for several two to three-week stints for infections.
"So far these have been mild infections, but that still has a massive impact. If she was to get a more serious one that we can't get rid of with antibiotics then that would be quite debilitating to her lung function and we would go on a slippery slope downwards then," Emily said.
The percentage of people with Summer's mutation is so small Emily says it wouldn't take much to add it to the Pharmac funding regime.
But for now a teenager's life is on pause and her future is in the hands of political decision-makers.
