Simon and Libby Clark. Simon Clark had a shock diagnosis of multiple myeloma on Christmas Day 2021. Photo / Jason Oxenham
New blood cancer drugs could be funded sooner than indicated, Health Minister Dr Shane Reti has revealed.
His comments follow a Herald article, published on Saturday, about the desperate situation facing myeloma patients such as Simon Clark, whose family collects cans to sell as scrap to try to pay for a life-prolonging drug.
That story caused a large public response - more than 600 readers donated over $55,000 to Clark’s Give-a-little page, and health and patient groups reiterated calls for urgent Government action.
Ahead of the election, National pledged to introduce ring-fenced funding for 13 cancer treatments that are available in Australia.
Blood cancer medicines weren’t included. Reti has previously said that omission was because further analysis was needed by the Cancer Control Agency, which “expects further information to be available by the end of 2024″.
He now says that work should be done by the end of June, at the latest.
“Simon’s story, and that of so many other Kiwis and their families affected by cancer, has a deep impact on me as Minister of Health,” Reti told the Herald.
“I understand that work by the Cancer Control Agency is progressing well, and the agency now aims to have a report available in the first half of this year.
“We can then consider the Government’s response to the findings.
“I do recognise the frustration of people and whānau trying to access the best possible treatment for their loved ones.”
Clark, 49, has multiple myeloma, the second most diagnosed blood cancer in New Zealand, with about 400 new cases a year. Currently incurable, it can be kept below detectable levels (remission) for years by treatment and medicines.
Each combination of drugs eventually stops working and myeloma returns, more aggressively. When that happens, a patient switches to another option.
These lines of defence have strengthened and multiplied in the past decade. Newer medicines have greatly increased life expectancy from diagnosis, and more are being released and developed.
New Zealanders have been excluded from that revolution, however, because no new myeloma drugs have been funded since 2014.
Proven medicines, including daratumumab, pomalidomide and carfilzomib, are on Pharmac’s “options for investment” list, meaning the government drug-buying agency accepts their benefit and wants to fund them, but doesn’t have the budget.
Clark has run out of funded medications, and turned to daratumumab, a routine and highly effective treatment for myeloma cancer in 49 other developed countries.
The private cost here is prohibitive - about $240,000 for the first year - and Clark’s extended family has done everything possible to raise funds, including selling aluminium cans as scrap.
The response and generosity of Herald readers has buoyed the family during a tough period while Clark has been in hospital, suffering side effects from high-dose chemotherapy used to try to improve his liver function enough to make him eligible for a clinical trial of another, newer drug.
“We are blown away by all the support both in words and money,” his wife Libby told the Herald. “We also want to thank the hospital staff, particularly Dr Eileen Merriman and the haematology team and nurses.”
Pharmac first received an application from pharmaceutical company Janssen to fund daratumumab in July 2017. Between 270 and 290 New Zealanders could need the drug each year, and any negotiations over price would be confidential.
A recent review of Pharmac estimated funding the entirety of its “options for investment” list - the 134 medicines and therapies it wants to fund - would cost more than $400 million annually.
The list is confidentially ranked. However, daratumumab offers the highest survival gain of any of the oncology treatments listed, and in November 2021 was recommended with high priority by Pharmac’s expert cancer treatment subcommittee.
Nichola Oakenfull, a trustee of the patient group Myeloma NZ, said the delay related to the Cancer Control Agency analysis was difficult to understand, given the extensive work by Pharmac - which independently decides what drugs to fund - and long-running use and funding of daratumumab overseas, including in Australia, the United Kingdom, Canada and the United States.
The ongoing delay “means heartbreak, it means some patients move overseas, it means some families spend time raising money that they should be enjoying with each other, and it means more people will die”.
Reti said the analysis by the Cancer Control Agency - which is part of the Ministry of Health - was independent from Pharmac.
“The purpose of the analysis is to identify the potential gaps for all haematological cancer medicines - not just those for multiple myeloma. Any medicine identified as a gap also needs to be assessed for clinical benefit.”
In the meantime, Pharmac today announced it will fund a new medicine - midostaurin (branded as Rydapt) - for people with de novo acute myeloid leukaemia (AML) that is FLT3 mutation positive.
That step has been welcomed by haematologist Dr Ruth Spearing, who said acute myeloid leukaemia can shorten someone’s lifespan to a matter of months, if not successfully treated.
Having midostaurin available will be life-changing as it increases the chance of cure.
“It targets the abnormality that is causing the cancer in a sub-group of people with AML who respond poorly to standard treatment. It will be a real advance for us as clinicians to be able to target this abnormality.”
Having midostaurin available could also increase the chances of New Zealand patients being accepted into trials for cutting-edge drugs, because the medicine is considered ‘standard of care’ internationally.
Leukaemia and Blood Cancer Foundation chief executive Tim Edmonds said the organisation had advocated for access to midostaurin since 2019.
“Approximately 130 people are diagnosed with AML every year, and around a third have the FLT3 mutation. We know, from international studies, that this medicine will aid in the prevention of disease progression and improve outcomes.
“This funding decision takes New Zealand a step closer to providing people with what is considered ‘standard of care’ internationally. We hope that similar gaps in access to life-saving medicines can be bridged for a wider group of blood cancer people in the near future.”
Pharmac has also announced funding for ribociclib (branded as Kisqali) for people with HR-positive, HER2-negative locally advanced or metastatic breast cancer.
That is the same class of medicine as another drug, palbociclib, which has been funded since 2020.
The Breast Cancer Foundation had asked Pharmac to widen the criteria for ribociclib to include patients who experience severe and life-threatening side-effects on palbociclib.
That has been refused, said Adèle Gautier, the foundation’s research and strategic programmes manager.
“Drugs like this work really well for many, sometimes extending survival by several years, so we’re really pleased to have another option. But some patients are forced to stop a drug due to life-threatening side effects, even though it’s doing wonders for their cancer.
“We asked Pharmac to scrap its ‘one drug per lifetime rule’ for this type of drug to allow patients to switch to another one, which would involve no extra cost and no additional patients, but they’ve declined that.”
The agency will also remove the funding renewal requirement for sacubitril with valsartan (branded as Entresto), a treatment for heart failure used by about 15,000 New Zealanders. That means people can stay on the drug for as long as needed, without the hassle of further applications.
Geraldine MacGibbon, Pharmac’s director of pharmaceuticals, said the agency “works really hard to make sure that we are funding the best treatments for New Zealanders from within our fixed budget”.
“We take our decision-making responsibility seriously and while it is ultimately our role to decide which medicines are publicly funded, we’re guided by evidence and the expertise of clinicians and the healthcare sector when making these difficult decisions.”
Nicholas Jones is an investigative reporter at the Herald. He won the best individual investigation and best social issues reporter categories at the 2023 Voyager Media Awards.
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