She read the life expectancy was six to 12 months. She did not find out her prognosis.
The diagnosis was confirmed the next month. A bone marrow biopsy confirmed she also had myeloma – blood cancer.
Rotorua cancer survivor Tove Jensen-Munroe is calling for public funding of the drug Daratumumab for patients with AL amyloidosis and myeloma. Photo / Megan Wilson
She and husband Tony moved to Rotorua to be closer to an amyloidosis specialist in Hamilton.
”Pretty much for the next year, I was dire. My husband was pushing me in a wheelchair.”
Chemotherapy began at Rotorua Hospital in March 2017, when her heart was functioning at about 30%.
She said a doctor tried to have “the palliative conversation” with her, because “aggressive” chemotherapy was difficult while keeping her comfortable.
Jensen-Munroe insisted she could do it.
Rotorua cancer survivor Tove Jensen-Munroe pictured in 2017 while getting treatment at Rotorua Hospital.
Between “miracle” chemotherapy and the drug bortezomib, her heart recovered.
”It took me four years. So, I was in bed for a year. The second year, I started to kind of get myself out into the community.”
She volunteered at the Cancer Society and visited hospice patients, offering meditation and relaxation practices.
Jensen-Munroe relapsed in 2023 and was told unfunded, $220,000-a-year drug daratumumab was her “best option”.
Unable to afford that, last year she took the second option of a stem cell transplant.
Chemotherapy and the transplant improved her heart function enough that she could be active again, with careful monitoring, and part-time work.
Rotorua cancer survivor Tove Jensen-Munroe in 2024 during her stem cell transplant at Waikato Hospital.
Another relapse would leave her even more limited options, including daratumumab — which she would still be unable to afford, like many AL amyloidosis patients. Publicly funding it would “save lives”.
Jensen-Munroe grew up in the United States and Norway and had lived in New Zealand for 20 years.
“I owe my life to our health system … but the Government needs to come up with more money [for Pharmac].”
Auckland Hospital haematologist and University of Auckland associate professor of medicine Dr Rodger Tiedemann said patients with multiple myeloma lived longer on daratumumab.
It worked best when received as the first or second line of treatment and reduced the risk of cancer progression by about 60%.
It could give AL amyloidosis patients “many more years” as it suppressed the abnormal protein.
Associate Professor of medicine at University of Auckland and Auckland Hospital haematologist Dr Rodger Tiedemann. Photo / Jason Oxenham
“The bad protein is no longer circulating and damaging patients’ organs.”
He said New Zealand was “far behind” most OECD nations for funding blood cancer medicines, including daratumumab.
He said the drug was funded in 50 other countries, including the United Kingdom, Spain, Italy, and France.
Myeloma New Zealand trustee Nichola Oakenfull said it was “extremely concerned” daratumumab was not funded after Pharmac had a funding application since November 2017.
Patients regularly considered moving overseas or running a Givealittle to access the drug, but these were “not realistic options” for most.
Rare Disorders NZ chief executive Chris Higgins said Australia approved funding for daratumumab in January 2023.
The charity was calling on the Government to prioritise increasing Pharmac’s medicines budget to clear the options-for-investment list.
The estimated global incidence of AL amyloidosis was one in 95,800 people. New Zealand data was not recorded, he said.
Pharmac, minister respond
Pharmac director of pharmaceuticals Geraldine MacGibbon said it understood the significant impact of multiple myeloma and AL amyloidosis, and was speaking with daratumumab supplier Janssen.
Daratumumab for AL amyloidosis was first ranked on the options-for-investment list last March, she said.
Pharmac had received “a few applications” for multiple myeloma at different treatment stages. It most recently re-ranked two applications in September. The actual rankings were confidential to support supplier negotiations.
“We appreciate this is difficult to hear when you want to see a medicine funded as soon as possible.”
Associate Minister of Health David Seymour. Photo / Alex Burton
She said Pharmac aimed to fund as many medicines as possible within its fixed budget.
Applications could be on priority lists for “some time” due to available funding and relative priorities.
Funding systems for medicines in other countries were “often not comparable to ours”.
Pharmac was committed to working with consumer groups and clinicians advocating for patients with multiple myeloma and AL amyloidosis.
Associate Minister for Health David Seymour acknowledged the hardship faced by people in these situations.
He said Pharmac was independent and operating at arm’s length from ministers for funding decisions, within Government-set budgets.
Seymour said the Government had, in 2024, allocated Pharmac its largest-ever budget of $6.294 billion over four years, plus a $604 million uplift, to negotiate the best medicine deals.
Since then, it had “nearly funded treatments for all the cancer types in the pre-election list” — National’s promise to fund 13 new cancer drugs — and had funded other blood cancer and tumour treatments.
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.
