A long-time advocate for breast cancer patients has died, as Pharmac's drug advisory panel has again delayed its decision on funding life-prolonging cancer treatments.
Marlborough mother Emily Stein, who was 32, died at home on Friday, a victim of the most commonly diagnosed cancer among women in New Zealand.
Her fellow stage four patients are calling for the government to double Pharmac's funding in the upcoming budget, and again demanding more transparency around its decisions.
Ms Stein was at parliament last October delivering a petition for the funding of Kadcyla, generically known as T-DM1, which international experts say gives terminal breast cancer patients vital months and even years - and a decent quality of life as well.
Without funding it costs $10,000 every three weeks.
Libby Burgess, the chair of Breast Cancer Aotearoa Coalition, told Checkpoint Ms Stein needed the drug, because her young children needed her.
"She wanted her kids to remember her when they grew up, but she's lost her battle," she said. "She did not have access and she had a short lifespan and many people are feeling her loss deeply."
Late last year, Pharmac promised that its advisory committee would consider breast cancer drugs Kadcyla, as well as Ibrance, or palbo-ciclib, at its February meeting.
It's just released the minutes of that meeting, and in 44 pages there was one paragraph on Ibrance, referring a discussion to a future meeting.
But there was a page and a half considering a drug to be used in hospital tests for erectile dysfunction.
Pharmac sent a statement today promising to look at Ibrance at another meeting later this month.
But patients said that wasn't not good enough, and Ms Burgess agreed.
"It's just shocking, and it does really seem that cancer patients are being disadvantaged," she said.
"It is inhumane for us to withhold treatment for cancer patients while we are improving the quality of life for people with erectile dysfunction, for instance. You know, it's something that should be treated but where does that stand in relation to giving a woman more time for her kids to grow so that they will remember her?"
Sue Wall Cade has stage four cancer and is part of the group 'metavivors' that have petitioned parliament to fund the drugs.
She said Pharmac had not made it clear why it disagreed with international experts on the effectiveness of the drugs.
"It's the same old rhetoric that more evidence is required," she said. "And yet the evidence is there, it has been supplied by the clinical experts, and there's just a lot of frustration."
She said a decision to fund the drugs would be made easier if Finance Minister Grant Robertson gave Pharmac more money in the upcoming Budget.
She said he needed to at least double the budget for Pharmac on spending on modern medicines.
"That would then lift New Zealand into a position with the OECD countries where we should be," she said.
In the meantime, she was staring down other options such as turning to a Givealittle page, drawing down her KiwiSaver, or downgrading her home to fork out for the massive bill.
Tracy Barr Smith is another stage four patient and said she was trying not to hold her breath, but couldn't help but be apprehensive.
"We kind of feel like a hamster on a wheel," she said.
"We're just constantly in a spinning mode going around and around in circles. It's just exhausting, you've got people who are on the edge of their seat praying that these drugs get approval."
Pharmac announced late last month that it would overhaul its decision-making process around the funding of drugs and be more transparent.
But this week no spokesperson has been available to talk to Checkpoint.
In the meantime, Ms Burgess said more women would die prematurely, all the while putting up with empty phrases from Pharmac.
"They've got these little catch phrases, that it doesn't do what it says on the tin, and that Pharmac has a model that the world envies," she said.
"That is just dark PR, actually."
Same old story from Pharmac, Cancer Society boss says
The Medical Director of the Cancer Society, Dr Chris Jackson, said despite the vow to be more open, nothing much has changed with Pharmac.
"We've seen this time and time and time again," he said.
"We only need to think back to Keytruda with melanoma a couple of years ago. It was the same issue, we had no fixed time for decisions.
"So it's the same thing every single time - no fixed time frame, no clear decision criteria, the goalposts seem to move and the patients are the ones left in the dark."
Dr Jackson said the patients had mounted a strong case to the government.
"They see the gap between New Zealand and other countries like Canada, the UK and Australia and they say quite rightly why is New Zealand not doing as well as those others countries that we compare ourselves to.
"People affected by those cancers are saying loud and clear that they don't have world class care, and they're right - they don't."
The government was criticised last year when it announced Pharmac would save $200 million dollars over four years thanks to new modelling.
This year, Mr Robertson is promising a well-being Budget.
Meanwhile, these cancer patients say they just want a small slice of well-being, for the limited days they have left.