Patient advocates say the Cancer Control Agency's new report on the gaps in cancer medicine funding in New Zealand is flawed, "grossly understates" the reality, and might be used to continue to justify "rationing" drugs.
The Cancer Control Agency Te Aho o te Kahu's report found that, compared to Australians, Kiwi patients were missing out on 18 cancer treatments that offered "substantial additional clinical benefit" above medicines already funded in Aotearoa.
The agency's chief executive Diana Sarfati said it was an "important report" that could help the Government and Pharmac understand which treatments could be funded and would have an impact.
"What we wanted to do was have some really good information to inform us as an organisation, because one of our roles is to provide advice to Government about investment across cancer control, so we needed to be much clearer about this gap," the public health physician told Breakfast.
She said she was happy with the report. She said it had been peer-reviewed by international experts and it kept patients' needs in mind.
But, advocates are worried about the methods the report used to come to its conclusions.
The report, released on Thursday, used the "internationally recognised" European Society of Medical Oncology - Magnitude of Clinical Benefit Scale (ESMO-MCBS). This tool scores the clinical trials of medicines for solid tumours, such as in breast, lung and prostate cancers.
Malcolm Mulholland, husband of the late Wiki Mulholland who lobbied for better access to cancer drugs as she faced metastatic breast cancer, said: "The [Cancer Control Agency] report grossly understates the magnitude of New Zealand's cancer medicine funding crisis."
The Massey University historian said the ESMO-MCBS, for example, had been used in Kazakhstan because the country had a small budget for medicine.
The Cancer Control Agency also compared the availability of treatments to WHO's Essential Medicines List and found "no substantive gaps", as expected for a high-income country.
Mulholland criticised this as well and said the list was usually used for developing countries.
"The only thing that comes out of this report is identifying we are behind by the number of 20. But, this situation is far worse than the number being reported by the [Cancer Control Agency]."
And, even if Pharmac did fill all the gaps identified in the report, New Zealand would still have 69 fewer publicly funded medications for tumours compared to Australia, he said.
"Is the report now saying that the Australian experts got it wrong on 69 different occasions? I find that hard to believe."
Report 'technically excellent' - agency
In response to Mulholland's comments, Sarfati said ESMO-MCBS was highly validated, world-leading, and had been used around the world to help guide decisions about drug funding.
Sarfati said the Cancer Control Agency received advice from international leaders in the sector and had used the best tool available to them for the "technically excellent" report.
Sarfati also said the check against the WHO's essential medicines list was only a small section of the report and was meant to be a "sense check" and not a bare minimum. She said the list had uses in low, medium and highly developed countries.
The report should be seen as a "really positive" thing because it supported the investment in more cancer drugs in New Zealand, Sarfati said.
ESMO also noted the use of its tool in Kazakhstan helped to increase the country's total budget allocated to cancer care because it could demonstrate value for money and focus on effective treatments.
Report's method used to 'justify continued rationing' - charity
The Cancer Control Agency opted to use "medicine indication pairs" in identifying gaps in treatments that needed funding. This method links together a medicine with a specific cancer type where it's used.
"It was important to do this because certain medicines can be used to treat many different types of cancer, so just looking at the medicines alone would not tell the full story," the report said.
Using this method, the Cancer Control Agency identified 20 different medicine indication pair gaps across nine different solid tumour cancer types. To fill these gaps, the agency said 18 unique drugs were needed.
Three of the gaps identified were medicines intended to be used alongside surgery to cure cancer. One of the three was for a specific type of breast cancer and two others were for specific types of melanoma.
The other 17 gaps were non-curative medicines, which aren't used for curing cancer but can extend or improve a person's quality of life.
All 18 of the drugs identified in the report were already being assessed or had already been looked at by Pharmac.
Since the agency collected data in July last year, two non-curative medicines - one each for a type of lung cancer and ovarian cancer - received approval for Pharmac funding.
Breast Cancer Aotearoa Coalition, a charity run by survivors, said they were "deeply disappointed" by the report.
They said they were "stunned" to see only one breast cancer drug - trastuzumab emtansine - had been identified as needed but not funded in New Zealand.
"This is completely out of step with Australia and other countries and disregards international guidelines on breast cancer treatment. There are 18 breast cancer medicines funded in Australia and not in New Zealand.
"These all have clinical benefits and many are recommended to New Zealanders with breast cancer, but only those who can afford to pay privately can be treated with them."
They said The Cancer Control Agency report "used a complex and opaque process, undertaken behind closed doors, to justify continued rationing of cancer medicines for New Zealanders".
"A transparent process involving wide collaboration with New Zealand oncologists and patient groups would have provided a more realistic assessment of the cancer medicines that New Zealanders are missing out on.
"Instead, they compiled a shortlist using a filtering process of their own devising, which made assumptions about equivalence between different medicines."
The Cancer Control Agency's Sarfati pushed back on the statement.
"That's a rather extraordinary statement," she said in response to the accusation of opaque processes.
Sarfati said the report and its methods were publicly available.
"We were very concerned about the people who are coming to us and saying that there are these big gaps in cancer medicines, that's why we did the report.
"The only reason we did the report was to identify the gaps because our role is to improve outcomes for people with cancer in New Zealand."
She said improving care for cancer patients in Aotearoa wasn't just about drugs - it was also about other things like making sure there were enough doctors and nurses.
Health Minister Andrew Little told RNZ New Zealand's drug guidelines were stricter than in other countries.
"One of the things that the report says is that, particularly when it comes to cancer drug procurement, just how challenging that is these days, because a lot more treatments are coming on onto the market, not necessarily always well tested.
"There are a lot more emergency approvals of cancer drugs in other countries, and it tends to put pressure on countries like ours to, sort of, keep up," he told RNZ.
Meanwhile, National leader Christopher Luxon said the Government could be using the money it was spending on the health restructure on more cancer drugs instead.
He said New Zealanders deserved the same standard of cancer care as Australians.
The Cancer Control Agency was established in 2019 and reports directly to the Minister of Health.