a group of women with advanced breast cancer hoping to get funding for the drug Ibrance. Photo / Michael Craig
Krystal Hekau can't afford housing but has been told the drugs to keep her alive will cost more than $6000 a month.
The 36-year-old was diagnosed with a rare and aggressive breast cancer in September 2016. Soon, the disease was found in her lymph nodes.
"They said, 'We're so sorry, you are now incurable.'"
She's endured excruciating pain, a total hip replacement and learnt cancer had spread to her spine while she languished on a waiting list for radiation.
Hekau has hung in, determined not to leave her two children. A major milestone came this month when her eldest turned 5.
She's been told by her oncologist the best treatment is a new drug that could significantly prolong her life.
The catch: Ibrance (palbociclib) isn't yet funded by Pharmac, the Government's drug-buying agency.
Hekau would need to find more than $5500 a month for the Ibrance, and another $1100 for a drug taken with it.
Other women in her position have sold properties, re-mortgaged or asked friends and family to help.
But it's out of reach for Hekau's family, already struggling with extra costs. Down to one income, her family have had to move to her sister's place in Weymouth, South Auckland.
"I said to my husband, 'Did you know under the recent Census our status is actually homeless?' That's us.
"At times being in the public system I wonder, are they doing the best for me, or am I one of those lost causes…"
Hekau will join a march on Parliament tomorrow to deliver a 32,000-signature petition calling for the funding of Ibrance, and another petition for breast cancer drug Kadcycla.
Her husband was worried about how much the trip will take out of her. But she was determined to self-fund it, partly to ensure a Pacific voice was heard.
"I get quite achy in the evenings. I said, 'Hey, adrenaline is going to kick in.'
"I'm excited for a good cause. Even if it's not funded in my lifetime, it will benefit somebody. Then I'll come home and suffer later."
The campaign is organised by Metavivors NZ, a support group started and run by some of the roughly 300 New Zealanders told they have stage four breast cancer each year.
That diagnosis means the disease has spread to another part of the body and is incurable.
A report by the Breast Cancer Foundation found a median survival time from diagnosis of 16 months, much worse than in comparable countries like Australia. Doctors "feel keenly the lack of publicly funded access to the latest medicines", the charity noted.
Not all petitioners have been told they need Ibrance or Kadcycla, but they want them as options if required later in treatment, and for them to help other patients.
Ahead of the rally at Parliament, the Herald met Hekau and other Metavivor members at Auckland's Cornwall Park and asked, what would extra time mean to you?
Lynda Ames doesn't want to die before her elderly parents, which would "devastate them completely".
"And my hubby Richard. We've got so much to do still together."
Sarah Olsen wants time with her daughters, away from the treatment rooms that have defined the past six years.
"I haven't been able to do much with them. All they have seen is me in and out of hospital. I just want to do things that normal mothers do."
Paula Neutze has had metastatic breast cancer for nine years, during which time she hasn't planned life more than six months ahead. She wants to see her teenage boys finish school, and hopes for a cure.
"I don't know what my children would say if you asked them [about] extra time. I think they just can't even comprehend that I won't be around that long."
Hekau is also fighting for her kids, aged 3 and 5.
"They would be old enough to remember me with a little bit more substance than they do now.
"For them to hopefully one day understand how much I tried. And how much of a fight I put up to be here for them."
Pfizer put in a funding application for Ibrance in February, and last month it was sent for assessment to Pharmac's cancer treatments subcommittee, made up of working clinicians.
They will assign a priority ranking - decline, low, medium or high - and minutes outlining their discussion will be completed.
Those will then be reviewed by a broader range of experts on the Pharmacology and Therapeutics Advisory Committee (Ptac), which also gives priority rankings.
Drugs are then placed somewhere on a ranking list, to be funded when money allows.
Some drugs assigned high priority have been on the waiting list for years, so the odds for Kadcycla seem poor - its working priority is currently "low".
In opposition, Labour vowed to set up an early access scheme to give faster access to new medicines, a move supported by the Cancer Society which says funding applications can take three years to be processed.
Medicines Australia, an industry lobby group, in 2015 ranked New Zealand 19th of 20 OECD countries for length of time after registration to fund new medicine. Pharmac's average was 579 days, compared to 383 in Australia.
Pharmac chief executive Sarah Fitt told the Herald some drugs had been funded very quickly, and things could move at pace if a medicine promised real benefits.
She acknowledged the process could be frustrating for patients. However, the agency, created in 1993, had to get the most from its limited budget.
Price can drop by more than 50 per cent during back-and-forth negotiations.
"You are not looking to pay the list price. It's like buying a car - you go in wanting to negotiate as best you can."
Fitt said New Zealand's small size meant "often we get a really, really good deal".
She was critical of early access schemes, saying they could weaken Pharmac's bargaining power. That includes when it agrees "package deals" to fund a bundle of medicines from the same company.
"Often they'll want to get their medicine funded so they'll give huge discounts on other medicines."
Fitt cited research that concluded the UK's cancer drugs fund did more harm than good, because too many high-cost ineffective drugs were funded.
Drug companies often claimed products were breakthroughs, she said, but studies later disproved that.
Pharmac believes more drugs are now released without clear evidence they work as claimed, partly because the US Food and Drug Administration had changed its regulatory process.
"It raises expectations for patients - this medicine is available now, why can't I have it - whereas previously these medicines were more proven," Fitt said.
Putting aside speed of access, is New Zealand spending enough on pharmaceuticals?
Last November, the NZ Institute of Economic Research produced a report for Medicines NZ, a lobby group for the drugs industry, finding when population growth and inflation was taken into account medicine funding fell in real terms each year since 2007.
Pharmac is working with DHBs to prepare a bid for the next budget, after increases in recent years to bring its budget to $985m.
"Our budget has gone up quite a lot ... so who knows whether we'll get more money or not," Fitt said.
"You don't want to fund medicines that aren't good value for money. Because the money might be better spent on hip operations or nurses' pay. But that is part of the budget process that ministers go through."
Dr Chris Jackson, oncologist and medical director of the Cancer Society, said patients were rightly up in arms about a lack of access to drugs.
Treatments for advanced cancer were developing at a rate never seen before, Jackson said, which made it incredibly difficult for governments to keep pace.
"Some treatments have high costs or uncertain benefits ... however, New Zealanders have poorer access to cancer drugs than many comparable countries such as Australia, the UK or Canada."
The Cancer Society wants a scheme similar to the UK cancer drug fund. Jackson said the research referred to by Fitt had assessed only the first version of the UK fund.
"The UK is on to a second iteration of a cancer drugs fund and their new scheme - much improved on the first - could show the way for New Zealand."
Pharmac should also bring in clearer goal posts for funding, Jackson said. That could use criteria like that used by the European Society for Medical Oncology's "magnitude of clinical benefit scale".
Ibrance scores a 3 or 4 from a maximum of 5 on that scale, depending on the circumstances. Jackson said that demonstrated the drug was an advance for people with metastatic hormone receptor positive breast cancer.
Tomorrow's march on Parliament will reignite political debate about New Zealanders' access to life-saving and extending drugs.
Pharmac is designed to take the politics out of funding decisions, but that line was crossed when the National Government in 2008 over-ruled the agency to extend access to breast-cancer drug Herceptin.
Labour vowed to direct Pharmac to fund a drug for advanced melanoma such as Keytruda in 2016, and then health spokeswoman Annette King joined hundreds of petitioners at Parliament and pledged to investigate an early access scheme.
National's Jonathan Coleman, health minister at the time, backed Pharmac's independence, saying research had shown National had been wrong over Herceptin and "lessons have been learned".
However, not long afterwards, Pharmac announced it would fund rival melanoma drug Opdivo after the National government confirmed a budget boost.
Funding of Keytruda followed, despite Pharmac having previously talked down the evidence for it.
Health Minister David Clark declined to be interviewed. In a statement, he said Pharmac's independence guaranteed impartiality in funding decisions, and the country had been well served by its purchasing power.
"We cannot have politicians second-guessing clinical experts."
Clark said he completely understood calls for new cancer drugs. He was waiting for advice about the case for setting up an early access scheme.
In 2016 Coleman fronted a crowd handing over a Keytruda petition. However, Clark's office said he had no plans to meet petitioners tomorrow.
Elisa Lavelle Wijohn will be another no-show. The 50-year-old starts radiation treatment today in Auckland.
Lavelle Wijohn had primary breast cancer in 2013, and went to the doctors in August after noticing her arm felt odd, and finding a lump in her lymph node.
She's had surgery to remove lymph nodes. The cancer was in her spine, too.
With the support of family, Lavelle Wijohn has paid for two cycles of Ibrance so far.
Her children are 11, 16 and 21. It's them she speaks of when asked about extra time.
"I think they already know what our values are and what's important ... but it's just getting those memories and their sense of being really loved just locked in solid.
"And also get used to the whole idea of this, and be strong - for them to cope, with when, if, we're through this whole stage and I'm not around. To be able to strengthen for that."
Lavelle Wijohn's career as a clinical psychologist involves rehabilitating people who have had brain injuries, and her research has included inequities in the health system. She said she was keenly aware of how fortunate she was to self-fund Ibrance.
"Right now, I'm buying extra months, I hope years. And that's not right. And there's no reason others shouldn't have that same access ... everyone deserves a decent chance on this one."
OPINION: The colour of picked rose blooms offers vibrancy and life.