Judy Morrison remembers exactly where she was when she received a diagnosis of multiple myeloma in 2018.
"It was Melbourne Cup day. I was with my husband not far from home in Arrowtown. I just remember thinking: 'oh my god.' It's a horrible feeling," says Morrison.
Following her diagnosis at the age of 64, Judy's husband Neil told her of a woman in their cycling group who also had multiple myeloma.
That woman was Arrowtown local, Jo Neep who lived just minutes away from the Morrisons.
"I'd heard Judy had multiple myeloma so I told her husband Neil I was here if she needed any advice or support," says Neep.
Multiple myeloma is the second most common blood cancer in New Zealand.
The Myeloma New Zealand charitable trust says it is an incurable blood cancer of the plasma cells which are usually found in the bone marrow.
There are around 3000 New Zealanders currently living with myeloma.
Neep herself was diagnosed in 2017 when she was aged 51.
"I was sent to Dunedin hospital. The haematologist told me I had multiple myeloma. I was in shock and cried for days."
After treatment in New Zealand, Neep went into remission for five years.
"In 2022 my blood markers started going up. My haematologist was on maternity leave and no one had replaced her. So I saw one privately through an online consultation. He told me straight out to go to Australia where the treatment I needed was funded," Neep told Newshub.
Neep has had two stem cell transplants. But she also needed the multiple myeloma drug Daraturumab which is not funded in New Zealand.
The drug is funded in at least 49 countries around the world - including Australia.
"I sold my house so I could buy a small apartment in Sydney and be able to receive daraturumab there," says Neep.
"When you want to live longer you will chase the better drugs and the drugs are in Australia. I'm fortunate to be able to make funds available to do that. Not everybody can sell their house and do that especially if they have kids and school," Neep adds.
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After Judy Morrison's diagnosis she had her initial treatment in New Zealand including a stem cell transplant.
But when Morrison relapsed last year, she too was advised to take daratumumab.
Morrison - who was still working as a radiographer at the time, made the decision to move to Melbourne where her son lives.
"I stayed in Melbourne for 6 months and got a Medicare card which enabled me to access the daratumumab. For the first 10 weeks of treatment it was one injection a week as well as a combination of other drugs. In New Zealand it would cost 10 thousand dollars per injection but I get it for free in Australia," Morrison told Newshub.
Now she has one injection every four weeks so can commute between New Zealand and Australia for treatment.
"I'm lucky I can commute but I understand so many other people can't."
Both Jo and Judy spend one week a month in Australia for their treatment.
Despite selling her house and buying an apartment in Australia, Jo Neep was able to also buy a small home in Arrowtown allowing her to live in New Zealand but go to Australia for her blood cancer treatment.
University of Auckland associate professor and Auckland City Hospital haematologist Rodger Tiedemann says the response rate to daratumumab is very good. He says that in combination with another drug it can control a patient's myeloma for around five years on average. He does say that if it's used later in a patient's illness, the benefit is less.
Dr Tiedemann - who previously worked in Canada, has been advocating for better blood cancer treatments in New Zealand.
"Patients have had to go into palliative care as there's no other treatment options for them. Daratumumab would have made a difference to them," Dr Tiedemann told Newshub.
He says that out of all the blood cancer medicines on Pharmac's Option for Investment list daratumumab has the greatest ability to improve patient outcomes and survival.
"Without this treatment - which has a 60 percent reduction in progression and deaths, people will die earlier as a result," he says.
Professor Judith Trotman is a Kiwi haematologist now working in Sydney.
She says while there have been huge advancements in therapies for hematology in the past twenty years, New Zealand has fallen way behind.
"Not only are patients suffering but I have witnessed the despair of the haematologists and nurses who have to practice without the life-saving treatments broadly available in the developed world. This is feeding an exodus of clinicians to Australia and beyond, and a failure to return home for those clinicians unwilling to practice old world medicine," says Professor Trotman.
She says some New Zealanders with blood cancer are being dealt another blow as not only can they not access drugs like daratumumab, many are also missing out on taking part in clinical trials.
"Previously, a few fortunate patients could access these medicines through New Zealand's clinical research portfolios. However, now New Zealand is getting so behind it is harder to access the cutting-edge clinical trials where prior exposure to the standard of care medicines available globally is a requirement," Professor Trotman told Newshub.
Dr Ruth Spearing, CNZM, a New Zealand haematologist and medical researcher for blood cancers agrees.
"In a clinical trial you compare internationally accepted standard of care drugs to cutting-edge drugs. We don't even get these standard of care drugs in New Zealand so can't take part in many trials. This means that Pharmac is doing a double disservice to New Zealanders," says Dr Spearing.
She says that clinical trials are being offered to other countries instead.
Dr Spearing told Newshub clinical trials also attract top medical specialists to New Zealand but without the trials there is no incentive for specialists to come here.
"The return on investment of clinical trials is outstanding and so not supporting clinical trials is a waste not only in human lives but also for the economy," she says.
Pharmac's Director of Pharmaceuticals, Geraldine MacGibbon says Pharmac empathises with New Zealanders living with cancer.
"Pharmac is considering a number of funding applications for daratumumab, the first received in July 2017," says MacGibbon.
"We are continually engaging with the supplier of daratumumab to discuss commercial proposals and provide an update on the progress of the funding applications we have received."
MacGibbon says that Pharmac is unable to give a definitive timeframe for if, or when, a decision to fund daratumumab would be made.
"The Government has said it will fund 13 new cancer drugs but none of these are for blood cancer which I'm horrified by," says Dr Spearing.
Health Minister Dr. Shane Reti says New Zealanders with cancer are not "forgotten."
In a statement, he told Newshub the Cancer Control Agency is starting analysis for blood cancer medicine gaps with more information expected to be available by the end of this year.
"Time delays do add up and patients need treatment now. We don't need to wait for another report to tell us that blood cancer treatment in New Zealand is far behind other countries. Pharmac has a waiting list known as the 'options for investment list.' That list includes daratumumab so this drug is already on their radar," says Dr Tiedemann.
Time is something Jo Neep and Judy Morrison no longer take for granted.
After taking daratumumab, Jo is now in remission.
"I know the cancer will come back. You can't keep it at bay forever. But in Australia I have a bigger choice of treatment, and a better chance of a longer life."
Judy too has had very promising results. While she's not in remission, she's shown great improvement.
"How can New Zealand get so far behind the rest of the world with this? The Government needs to give Pharmac more money to fund more drugs, says Morrison"
"The Government needs to get its priorities right and give more money to Pharmac. My view at the moment is that those with cancer are not prioritised," Neep adds.
