Blood cancer is the third leading cause of cancer-causing deaths in New Zealand. File photo. Photo: 123rf
Blood cancer patients are asking National not to break the promise it made in opposition that they would not be forgotten.
When the National Party announced its policy to fund 13 cancer treatments, it did not include any for blood cancers.
It said blood cancer patients would not be overlooked, but a report from the Cancer Control Agency would be needed first to assess the clinical benefits of different blood cancer medicines.
An earlier Cancer Control Agency report - which National used to develop its policy - was only based on solid tumour cancers.
The agency's new report was released on 24 October, and found that blood cancer patients in Australia had access to 24 individual blood cancer medicines that were not available in New Zealand for 42 different treatment indications. Twelve medicines were found to significantly improve survival rates and quality of life.
The report looked at the 12 drugs' statuses as of May 2024. Three have since been funded. Of the remaining nine, Pharmac was considering funding for six of them, while it had not received applications for the other three.
Blood cancer patients now want the government to heed the report's words and remember its pre-election commitment to them.
"A promise is a promise. And they need to follow through with it," said Vonda Nepia, who has acute myeloid leukemia.
Nepia's cancer is curable, and its treatment is funded by Pharmac. But she was frightened for patients whose treatments were not.
"I'd hate to think paying for medicine. I'd hate to think what would've been going through my mind, because your families suffer enough as it is," she said.
Nepia is one of more than 600 people who have signed an open letter to the prime minister Christopher Luxon, health minister Dr Shane Reti and associate health minister David Seymour.
The letter - authored by mantle cell lymphoma patient Elvin Tibbs - said the report brought to light "the harsh reality that life-saving blood cancer medicines remain unfunded in New Zealand while readily available to patients in comparable countries".
A treatment for mantle cell lymphoma was idenfitied by the Cancer Control Agency has having substantial clinical benefit, and two brands of it are on Pharmac's options for investment list. Only one brand would need to be funded.
Tibbs said she wrote the letter as a representative voice for thousands of New Zealanders battling blood cancers, and felt the absence of action on blood cancer medicines left patients filled with frustration and desperation.
"National's pre-election promise to fund cancer medicines was a beacon of hope to many patients and their families, who believed that your leadership would bring progress in the equitable delivery of modern cancer medicines. Many cast their votes based on this promise, trusting that in power you would stand by us and honour your word," she wrote.
"Should your commitment go unfulfilled, it will feel as though our lives and struggles were leveraged for political gain rather than supported with compassion and integrity."
Leukaemia and Blood Cancer New Zealand, which has hosted the letter on its website, said blood cancer was the third leading cause of cancer-causing deaths in New Zealand, and with no prevention or screening options available to patients, their survival relied heavily on timely access to effective treatments.
Health Minister Shane Reti. Photo: RNZ / Samuel Rillstone
Nepia was hopeful the government would prioritise the funding, and hoped the open letter would spring it into action.
"The power of the consumer voice, the power of consumer votes, I would think they would listen and see that we will vote accordingly. I guess that's a decision they need to make, but it is powerful. That's why I signed the letter, because if we're all just, 'ah well, we're willing to put up with it and just be quiet about it,' they're not going to do anything."
Health minister Dr Shane Reti confirmed to RNZ he had received the letter.
In a statement, he said the government was proud of its "transformative investment" in cancer treatments, including for blood cancers.
"The $604 million funding boost for Pharmac has enabled an overall package of up to 54 more new medicines, and will change the lives of thousands of New Zealand cancer patients and their families," he said.
Reti said this year Pharmac had funded four blood cancer drugs for six different uses that were included in the agency's report.
On Monday, the Prime Minister said he had not been briefed on the 24 October report.
Like Reti, Christopher Luxon touted the treatments the government had already funded, and its boost to Pharmac's coffers.
"Our focus right now is to get the cancer and the new medicines that we talked about and we've announced out into the public domain and being well-executed so they're available and there's access to those drugs. Beyond that, I haven't had any further conversations," he said.
"Of course, we would like to be able to do more, but for us to do more, we actually have to build a bigger economic engine to get the public services we often see in wealthier countries that we'd love to have here, and that's the reality of it."
Labour leader Chris Hipkins said the Prime Minister's response was not good enough.
"Christopher Luxon and Shane Reti said to blood cancer patients that they wouldn't be forgotten under this government. The Prime Minister indicated today clearly they have been. He hasn't even bothered to ask what's being done around the additional support for blood cancer patients. I think that's another broken promise," he said.
"When it's literally a matter of life and death for sufferers of cancer, I think to dangle things in front of them like that in the midst of an election campaign and then not deliver on them is just cruel."
Ministers cannot direct Pharmac to fund specific medicines, to preserve its independence. It can increase Pharmac's budget so more medicines on its 'options for investment' list can be funded, but the decision of what gets funded lies with Pharmac.
The options for investment list, a wishlist of sorts, ranks the medicines from highest to lowest priority. The ranking is however kept secret for commercial reasons, so Pharmac can continue to negotiate with drug companies.
In order to fund the cancer drugs National promised pre-election, the government had to significantly increase Pharmac's budget to capture those thirteen drugs and any others that may have been ahead of them in the rankings.
David Seymour, the minister responsible for Pharmac, said while the government had set a budget for Pharmac of $6.294b over four years, it had to respect Pharmac's independent decision-making.
"It's their job alone to decide which medicines get the best value for New Zealanders with the taxpayer money we allocate," he said.
Seymour said the Cancer Control Agency's report had highlighted the gap between New Zealand and Australia when it came to medicines access.
"To afford more medicines, we need a stronger economy, or a higher proportion of our wealth going on medicines. Affording more medicines is perhaps the best of all reasons to grow the New Zealand economy, which the government is making many changes to do. I'm also undertaking work to justify putting more of the government's budget into medicines," he said.
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