Critically ill patients say they're "bitterly disappointed" by today's Pharmac Budget announcement and were left looking into each other's eyes knowing some among them would now likely face an earlier death.
The Government's announced in Budget 2022 that Pharmac would be given an additional $191 million over the next two years to buy much-needed drugs for people with debilitating and life-threatening illnesses.
Government ministers hailed it as the drug-buying agency's biggest-ever funding boost.
Health Minister Andrew Little says Pharmac will now use the cash to buy as many medicines as it can and focus on better cancer treatments.
But the about 30 ill patients and advocates gathered at Parliament for the Budget earlier arrived with much higher expectations.
They had hoped for an additional $417m in funding to clear a wait list of 78 drugs that Pharmac wants to buy but doesn't have enough money for.
Patient Voice Aotearoa Chair Malcolm Mulholland says New Zealand is lagging far behind other nations in subsidising much-needed medicines.
"We're bitterly disappointed," he said.
"Patients will continue to die here, whereas overseas they don't."
Zoey Butcher, 2 years old, has a rare illness called spinal muscular atrophy – but her supporters say medicines could help if funding was approved. Photo / Supplied
Pharmac's operations have been under question in recent years and led to a major review of the way it purchased medicines in March 2021.
The review panel questioned how Pharmac prioritised medicines for treating rare disorders - including potentially expensive medicines which could offer major health gains to small numbers of people.
The panel, which former Consumer NZ chief executive Sue Chetwin chaired, heard it could take from nine months to 10 years to get a medicine through Pharmac's funding process.
The Health Minister received the review's final report in early March and calls have emerged for him to release it.
Pharmac funding was also in the spotlight three weeks ago, after the Cancer Control Agency said New Zealanders were missing out on many potentially life-saving treatments.
The agency identified 20 different gaps across nine different cancer types where the medicine was publicly funded in Australia, but not in New Zealand. Other researchers including Mulholland identified even more gaps.
Today's new funding amounted to $71m this year and $120m next year.
Pharmac's total funding will now be $1.2 billion, which Minister Little said was 43 per cent up since his government came to power in 2017.
Pharmac chief executive Sarah Fitt said the cash injection will mean many more treatments will become available in the next 12-24 months.
The agency said it has started formal consultation on proposals to fund drugs for breast, lung and blood cancer, multiple sclerosis, hormone replacement and HIV.
However, Mulholland said many will still miss out despite the new funding.
Health spending formed a major part of Finance Minister Grant Robertson's Budget 2022 package. Photo / Mark Mitchell
Those gathered at Parliament included patients from the Crohn's & Colitis support group and others with cancer, cystic fibrosis and type 1 diabetes.
It would now be a lottery as to which among them would have the drug they needed funded, he said.
"There was no way I could say to any one of them with certainty that due to this Budget announcement your drug will be funded," he said.
"And for some of us it is a life-and-death decision that will be made – that is the reality when you continually short-fund Pharmac."
Chauntel Wedlake also travelled to Parliament from Auckland with her 2-year-old daughter Zoey Butcher this morning for the Budget.
Zoey suffers from spinal muscular atrophy (SMA), which if untreated will leave her unable to walk or even stand.
Wedlake said she's seen children with SMA treated with Government-funded drugs overseas regain the strength to run, jump and "do so many things".
But after today's announcement there is no way of knowing whether the drug needed for Zoey will be funded.
"We came with real high expectations thinking this was the year because there had been hype that health was going to be improved in this Budget now the costs of Covid had settled down," Wedlake said.
Chauntel Wedlake says she worries her daughter Zoey will not get the medicine she needs as a result of the Government's Budget. Photo / Supplied
"But it just feels like more of a kick in the guts."
Health Minister Little admitted Pharmac was still playing catch-up after years of underfunding.
But he cautioned against criticism that New Zealand and Pharmac are among nations in the developed world that fund the fewest drugs for its citizens.
He said in other countries there is often cases where patients or their insurers have to pay a significant contribution to the cost of their medicines.
However, New Zealand fully funded the medicines, he says.
Still Patient Voice Aotearoa's Mulholland is not convinced. He said New Zealand does lag far behind other developed nations.
He said that while the funding for these drugs was a lot of money, it was small in the scheme of the Budget.
"It's about giving life, surely that is the number one priority for any government," he said.
Mulholland has experienced the anguish of not being able to get funded treatment for a loved one.
Two-year-old Zoey Butcher and family arrive at Parliament earlier today for the Budget. Photo / John Weekes
His wife Wiki died last November after being diagnosed with breast cancer, and she previously raised awareness about unfunded life-extending drugs.
He says not only are the critically ill patients confronted with their own mortality when they are diagnosed, but because of the funding troubles they are suddenly plunged into terrible money trouble.
"You are sitting there thinking either I've got to remortgage my house or find a big dollop of money for a drug or I'll die," he says.
Wedlake agrees, saying she welcomes any funding boost, but the fight is not over.
"There is no way I'll give up, I'll do whatever it takes for my daughter and for other people in the future not to have to go through the same things we are now," she says.
- by Ben Leahy, NZ Herald