Geoff Dawson has been living with myeloma, a type of blood cancer, for six years. Photo / The Medicine Gap / Jo Currie
A Kiwi dad of two who’s forked out $300,000 for private cancer treatment wants to see it publicly funded in New Zealand.
Geoff Dawson, who works for the Royal New Zealand Yacht Squadron, knew almost nothing about myeloma, a blood cancer that affects white blood cells and weakens bones, until he was diagnosed with it six years ago. He hadn’t noticed any signs of symptoms apart from a sore back, until the day he sneezed and broke a rib.
Finding out he had the second-most common blood cancer in New Zealand, Dawson, now in his late 50s, headed straight to “Dr Google”.
“It was pretty scary,” he tells the Herald. “We probably shouldn’t have done that, because there’s a lot of scary stuff in terms of life expectancy ... it wasn’t looking too rosy.”
Dawson counts himself lucky to have had medical insurance so he could see a haematologist (a blood cancer specialist) privately, before undergoing oral chemotherapy to prepare for a stem cell transplant — the standard treatments for myeloma patients in New Zealand.
“At the end of that process, you have essentially no immune system,” Dawson explains, adding that he “coped pretty well through that, but it can be quite a rough road for a lot of people”.
The treatments bought him three years of remission before the cancer reared its head again. But Dawson wasn’t so keen to go through another round of chemotherapy and a second stem cell transplant. Wanting to explore other options with his specialist, he settled on daratumumab, an immunotherapy drug. It’s Medsafe-approved and is the default treatment for myeloma in 49 other countries, but it’s not publicly funded in New Zealand.
One year of the treatment at retail price costs $230,000, or around $10,000 per dose — and it’s cost Dawson $300,000 to get where he is today, starting on weekly injections before going down to monthly and now quarterly doses. But it’s meant he can go back to work and stay active instead of spending months in hospital.
“It’s incredible, and I’m very lucky — for me, it’s side-effect-free. It takes about six minutes to deliver the dose,” he explains.
A bone marrow biopsy revealed that thanks to the treatment, his cancer has reached MRD negative status, signifying an exceptionally low number of cancer cells in his body. So on an Australian specialist’s advice, Dawson has gone down to a three-monthly dose, “so it makes my limited funds go a little bit further”.
“Hopefully we’re not compromising the efficacy of the drug by reducing its frequency,” he adds. “Time will tell.”
Some myeloma patients decide to move to Australia, where daratumumab is publicly funded — so has he ever thought of doing the same?
“No — I’m a Kiwi,” he says. “I’ve got too much else going on here in New Zealand. My mum’s here, and I want to stay close to Mum. I’ve got two kids, one’s just finished university, one’s just started, and I want to be part of their lives. My wife’s got a thriving business and I certainly wouldn’t expect her to move with me, and I can’t imagine going to Australia by myself,” he adds with a smile.
Thanks to generous friends and his retirement savings, he’s managed to find a way to afford the treatment so far — but he “desperately” wants to see it funded in New Zealand, if not for himself, then for other Kiwis diagnosed with myeloma.
“I know through experience that it’s such a different treatment journey from going through a stem cell transplant and chemotherapy,” he says. “Chemo leaves you a shell of your former self and it really takes the wind out of your sails, whereas the daratumumab — I haven’t had a bad day since starting it.
“It’s a much more effective treatment strategy. I can be out of the clinic in about 20 minutes, I’m straight back to work, and it doesn’t affect me in the least, whereas a massive dose of chemo took me out for months.”
One side effect of the chemotherapy was peripheral neuropathy, which left him with nerve damage in the soles of his feet that has in turn affected his balance. It’s meant the ocean-loving Dawson, who’s spent much of his life on boats, can no longer sail — though he’s “grateful to be vertical”.
For Dawson, it just makes sense that if there’s a treatment available that doesn’t have such damaging side effects, it needs to be offered as a funded treatment option.
“Under another strategy, I’d have had to have multiple months off work and may not even have been able to go back to the same job,” he notes.
“Daratumumab should stack up light years ahead of chemotherapy medication. Yes, it’s more expensive, but it’s massively superior and has huge financial benefits.”
According to Pharmac chief medical officer Dr David Hughes, the drug is being assessed as an option for investment, meaning “we would like to fund [it] when we have the budget available”.
But in Dawson’s opinion, “somewhere there’s some health economics gone wrong - and it really needs a massive revamp”.
“That’s the big problem. We’ve got to be calculating efficiencies, comparing different treatments a lot more comprehensively and broadly looking at all the different advantages that one treatment provides over another, because we’re clearly not doing it now or we’d already be funded for daratumumab.”
For now, his message to other Kiwis who get a myeloma diagnosis is that “while it’s pretty scary, life doesn’t stop”.
“I’m having some great years, and I feel like I have many years ahead of me. It’s called a terminal disease, but that doesn’t mean you’ve arrived at the end of life.
“And it does change your perspective on life. It’s made me actually a lot more grateful for the time I do have. I guess I stop and smell the roses a little bit more.”
Nichola Oakenfull is a trustee at Myeloma NZ, an organisation supporting Kiwi myeloma patients and calling on the Government to fund more modern treatments.
Oakenfull, 44, has herself been living with multiple myeloma since June 2020 — and the mum of one says it’s “beyond” concerning that patients are having to either pay astronomical sums or move overseas to access treatments that are standard in other parts of the world.
“There are myeloma patients who have been told, ‘You are out of options, you’re going to die’,” she tells the Herald. “And they’ve moved to Australia and they’re still alive years later.”
According to the Cancer Society, one in three Kiwis will develop cancer during their lifetime. Around 360 New Zealanders are diagnosed with myeloma each year. The average age of diagnosis is 65-70, but it can occur in patients as young as people in their 20s. Sixty per cent of those diagnosed are male, and Pasifika and Māori people are over-represented in the myeloma population, with a worse overall survival rate.
“New Zealanders are almost saturated with the message of how bad cancer is, [the lack of] cancer funding and seeing these constant Givealittles, that I think people almost just ignore it because they don’t want to know about it,” Oakenfull points out.
“But what people need to understand is that we are at the bottom of the OECD for our medicines funding, and things that people are doing Givealittles for are just standard-of-care treatments overseas. People aren’t trying to get anything flash. It’s almost a bit like we’ve got the Panadol, but we don’t have the ibuprofen.
“Overseas, myeloma is more [like] a chronic disease where there is no cure yet. It’s still a terminal illness, but people live with it for a number of years.”
In November last year, Myeloma NZ made a submission to Pharmac’s Pharmacology and Therapeutics Advisery Committee about the need to fund daratumumab. Now Oakenfull says Pharmac needs to push the Government for funding.
“And the Government needs to invest in New Zealanders by funding Pharmac to comparable levels to what overseas countries spend,” she adds.
“If Pharmac doesn’t have enough money, then we’re just banging our heads against a brick wall. And it’s just heartbreaking. We deserve to live - our lives have value, and we should be seen as an asset, not a cost.
“And the fact that we’re a small country can’t be used as an excuse, because there are smaller countries that have much better medicine funding than New Zealand.”
Oakenfull herself has lost several of her friends to the cancer in the years since her own diagnosis.
“People need to understand that this situation could happen to them,” she says.
“Myeloma is an incurable cancer. People’s years are limited. I should be out spending time with my son; I shouldn’t be having to spend my evenings and weekends arguing about whether my life has value. We shouldn’t be having to fight for these patients to live.”
Bethany Reitsma is an Auckland-based journalist covering lifestyle and entertainment stories who joined the Herald in 2019. She specialises in telling Kiwis’ real-life stories, money-saving hacks and anything even remotely related to coffee.
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