Fundraising to stay alive: ‘Life’s come down to dollars and cents’
Friday, 16 May 2025
Increasingly, New Zealanders are flying offshore for a revolutionary cancer treatment that can put patients with only months to live into long-term remission.
In a five-part investigation, senior reporter Nicholas Jones tells some of those incredible stories, and investigates what it will take to embed CAR T-cell therapy into New Zealand’s health system. This is part five.
Jason Oxenham is set to make the second-biggest purchase of his life, in an effort to save it.
The news photographer and father-of-three has battled a common blood cancer, multiple myeloma, for five years, and has reached the end of funded treatments in New Zealand.
The 55-year-old will soon travel overseas for cutting-edge treatment, and is urgently fundraising to cover the huge associated cost.
“It's quite draining - every waking hour, I'm thinking about fundraising. Meanwhile, I’ve got chemo brain - focusing can be challenging at the best of times, and you’re tired.
“It's like your life has come down to dollars and cents.”
Oxenham is one of a small but growing number of New Zealanders looking offshore for a revolutionary treatment called CAR T-cell therapy.
This involves the collection of a patient’s immune cells which are genetically modified to recognise and kill their cancer, and then infused back into the patient’s blood.
It’s used overseas for blood cancers including relapsed lymphoma, leukaemia and myeloma, and has put a high proportion of patients without other good treatment options into long-term remission.
However, costs are high - more than $1 million in Australia and the United States, and hundreds of thousands of dollars in other countries including China.
Oxenham, whose daughters are aged 23, 20 and 17, spoke to Stuff last month after Pharmac confirmed it didn’t have the money to fund a drug, daratumumab, that is highly effective against myeloma and provided in 49 other countries.
“I’ve got massive FOMO. I don’t want to miss out,” he said. “I don’t want to miss out on my children’s futures. I want to walk them down the aisle when they get married, if they choose to, I want to bounce my grandchild on my knee. I want to get old with my wife.”
He prepared to fundraise for daratumumab, but then learnt he’d need to take another unfunded drug in tandem, doubling the cost to well over $200,000 for the first year alone.
That forced a rethink, and he’s now determined to get CAR T-cell therapy overseas, probably in China in June/July.
The bill for the CAR T itself could be up to $380,000, depending on the private hospital he opts for, but it’s a largely one-off cost for what could be years of remission afterwards.
Oxenham understands his relatively young age and having had fewer lines of previous treatments gives him a good shot at a lengthy remission.
After five years of chemotherapy and side effects the prospect of being on no medication is “mind blowing,” he said.
A Give-a-little has reached nearly $55,000 in two weeks. Those posting accompanying messages of support include colleagues from Oxenham’s career as a visual journalist, which began in 1993 at the Nelson Mail, and has spanned the Marlborough Express, Sunday Star-Times, Sunday News, Stuff’s predecessor Fairfax, and the NZ Herald.
A former colleague, Aroha Awarau, has organised an online auction for May 29 with donated items and experiences, including from artists Owen Dippie, Emma Bass, Jimmy Kourboudis and Martin de Ruyter, lunch with John Campbell, Jennifer Ward Leyland or rapper Melowdownz, and signed gear from the Warriors, Silver Ferns and Joseph Parker.
New Zealand’s leading news photographers are also donating their favourite photographs, which will be sold from a gallery on Queen St, a space sourced through Oxenham’s old workmate and friend Lincoln Tan.
Oxenham hopes to cash out his KiwiSaver, and his elderly parents are doing all they can within their limited means.
One of Oxenham’s recent projects was telling the story of West Aucklander Simon Clark, whose family collected cans as scrap metal to try to pay for daratumumab, and who died in June last year.
Simon’s widow Libby is planning a samosa sale to fundraise for Oxenham - despite having four kids to raise as a solo mum - and his sisters Lisa and Megan are also fundraising (Lisa through her can collection, Megan via a fundraising concert).
Tim Edmonds, chief executive of Leukaemia & Blood Cancer NZ, said CAR T-cell therapy, “is one of the most significant breakthroughs in the treatment of some blood cancers”.
“CAR T-cell therapy has already transformed outcomes for thousands of blood cancer patients worldwide, and is considered standard of care in many countries.”
Auckland Hospital haematologist Dr Rodger Tiedemann, also an associate professor in medicine at the University of Auckland, said CAR T was particularly effective for patients with diffuse large B cell lymphoma.
About 40% will achieve remission lasting over 5 years after CAR T-cell therapy - a point at which they are considered cured.
“For multiple myeloma it is a bit more of a mixed picture, in that the CAR T-cells are highly effective, but they don’t appear to be curing patients.
“The medium response duration depends on the product and the protocol that the patient is treated with. That response duration can range from anything from a year to three years, and hopefully longer than that with newer products.”
CAR T and other treatments are rapidly improving, raising the prospect that in the not too distant future myeloma can be treated as a chronic condition.
Oxenham has tapped into a “wonderful” network of Kiwi patients who have had CAR T overseas, but numbers are still small - his own haematologist has had only one patient get the therapy overseas.
“This might be the second biggest purchase of my life, other than my house, and there's a time pressure, obviously.
“You’re shooting in the dark a little bit…I wish there was a cheat sheet.”