Top photographer’s incurable cancer diagnosis - and his fear of missing out
Monday, 14 April 2025
After turning 50 visual journalist Jason Oxenham learnt he had blood cancer. Pharmac wants to fund the drug that will keep him alive, but this week told him it doesn’t have the budget. He tells Nicholas Jones about a fear of missing out - on milestones like walking his daughters down the aisle, holding his grandchild and growing old with his wife.
As one of the country’s top news photographers Jason Oxenham has captured decades of New Zealand history, including cyclones and other major disasters.
Conditions on the ground could be gnarly, but it was when walking the six blocks from his newsroom to the Auckland District Court that Oxenham felt physically defeated.
He figured it was due to middle age - he’d recently turned 50 - or being out of shape.
“I was starting to make excuses not to walk with a reporter. I'd leave early and try to not let people see me puffing and stopping.”
After a blood test his GP told him he was anaemic, and he’d need a blood transfusion at Auckland Hospital, followed by a specialist appointment.
Oxenham, a father of three, assumed the March 2020 meeting would be about his iron levels. “Do you know why you’re here?” he was asked, before being told he had a blood cancer called multiple myeloma.
Currently incurable, myeloma 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.
Alone in an isolation room: ‘Will I see my family again?’
Oxenham began a cocktail of chemotherapy and steroids. Three weeks into the first Covid-19 lockdown his temperature spiked. Rushed to hospital, he stayed in an isolation room for a week, without visitors and was treated by scared medical staff covered in space suit-like PPE.
“My heart rate and my temperature were going through the roof. It was horrendous. I was lying there thinking, ‘Will I see my family again?’”
Eventually his vitals improved and it was determined he’d had a bad reaction to his chemotherapy.
In September/October 2020 Oxenham had an autologous bone marrow transplant, in which healthy stem cells were removed from his bone marrow, and stored.
He was then blasted with high-dose chemotherapy, to kill as much cancer as possible. That also destroyed healthy bone marrow and his immune system, and his stored stem cells were returned to his blood to regenerate what was sacrificed.
With the help of maintenance chemotherapy he had 2.5 years of partial remission, but last September blood tests showed his disease was, “getting angry”.
The 55-year-old began and remains on other medications, in the form of up to 23 pills a day - “if you shake me I’ll rattle, but I haven’t heard it yet” - and weekly and monthly injections. He does these himself - stabbing a needle into his stomach is easier than finding a carpark at Auckland Hospital, he says.
His cancer levels have fallen, but not enough for his specialist’s liking.
‘I have only a very short time to live’
The drug Oxenham should start on, daratumumab, is a highly effective medicine that is funded in 49 other countries, including Australia (since January 2021) the UK (since March 2019), and Canada (as early as March 2018).
The private price here is at least $120,000 for the first year, and about $60,000 for following years. Hefty administration costs are on top of that.
Pharmac would pay the drug’s maker Johnson & Johnson much less, but negotiations are confidential.
About 300 New Zealanders could need the drug each year. Pharmac received an application to fund daratumumab in 2017, and wants to do so as a high priority, but has lacked the budget.
Instead, daratumumab has languished on Pharmac’s confidentially ranked “options for investment” list, along with 88 other medicines, vaccines and products.
Oxenham and other patients recently wrote to Pharmac’s board, pleading for action.
“I am literally writing this as I am crying. I am desperate. I have only a very short time to live and it’s breaking my heart,” read his February 21 email.
“I am out of treatment options. I have three daughters and a wife of 28 years.”
On Tuesday - soon after Stuff lodged questions with Pharmac and ministers - he got an answer in an email from Geraldine MacGibbon, Pharmac’s director of pharmaceuticals.
“Earlier this year, our staff considered an updated proposal from the supplier. We reviewed our assessment of daratumumab and compared the updated proposal to other medicines that we are considering for funding,” MacGibbon explained.
“The ranking of the updated proposal for daratumumab, and the amount of budget currently available to us, unfortunately means we are not able to fund daratumumab at this time.
“This does not prevent us from considering it for funding in the future. I appreciate this news will be disappointing to hear.”
FOMO (Fear Of Missing Out)
Oxenham, whose daughters are aged 23, 20 and 17, says that stance, “limits my life expectancy”.
“I’ve got massive FOMO. I don’t want to miss out,” he says, breaking down with emotion.
“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.”
Before the last election National campaigned on funding 13 cancer treatments available in Australia. Those didn’t include drugs for blood cancers, but Dr Shane Reti - standing next to Christopher Luxon - promised the country’s 21,000 blood cancer patients that “we have not forgotten you”, and they were excluded only because more analysis was needed.
Hopes were raised when in June last year the Government announced an extra $604m over four years for Pharmac.
“[National] said they wouldn't forget blood cancers. They've been in [power] for 18 months or so, I feel like they have forgotten blood cancers,” Oxenham says.
“How long do we have to wait? Some of us don't have time.”
Pharmac delivers when ‘given support it needs’: Seymour
Health Minister Simeon Brown referred all questions to Associate Health Minister David Seymour, who has responsibility for Pharmac. Seymour, the Act Party leader, said in a statement that, “I acknowledge the hardship faced by people in situations like Jason’s”.
“Decisions over what medicines are funded are independent of the Minister. As the responsible Minister my preference is to secure as much funding as possible for Pharmac because we have seen what it is capable of when given the support it needs.
“Last year we allocated Pharmac its largest ever budget of $6.294 billion over four years, so that it can get on and do its job – negotiating the best deals for medicine for New Zealanders.”
Seymour has told Pharmac it can secure more money by showing how funding medicines would save the Government money overall, such as by keeping patients in work and out of hospital.
“While Budget 2025 is still under consideration, I have confidence in Pharmac’s ability to increase medicines access for Kiwis with the budget provided to them.”
MacGibbon told Stuff that Pharmac would release its latest assessment of daratumumab, “so that people can see how we have considered the evidence and benefits”.
“Pharmac has updated the supplier and will work with them to make sure their funding applications are in a good position to move forward if we have available budget in the future.”
The decision has dismayed patient advocacy groups including Myeloma NZ and Leukaemia & Blood Cancer NZ, whose chief executive Tim Edmonds told Stuff that last year’s Pharmac boost “has already been committed and has failed to meet the urgent needs of blood cancer patients”.
“Of the 175,000 Kiwis expected to benefit from new medicines in the first year of funding, just 180 - 0.1% - are blood cancer patients.
“Chronic underfunding of medicines has meant that patients are denied access to essential treatments like daratumumab and are left with heartbreaking choices: self-fund, leave their families to access funded medicines in Australia, or face the life-limiting consequences of going without.”
Both organisations joined an alliance of health groups and 60 haematologists who last month wrote to the Prime Minister and health ministers, warning “the failure of this Government to provide access to modern medicines for these patients is wrecking lives and families, as Kiwis with blood cancer are left to deteriorate or die whilst waiting for treatments that are readily available in similar and often poorer nations”.
A Johnson & Johnson spokesperson told Stuff it had “worked in good faith for over eight years to bring this treatment to New Zealand patients”.
“Johnson & Johnson calls for an uplift in funding to Pharmac in next month’s budget and expects blood cancer treatments like daratumumab to be at the front of the queue for funding, and for Pharmac to work with us on a viable deal to bring this treatment to patients.”
An agonising calculation
Oxenham has thought about trying to fund daratumumab, but calculations aren’t just financial.
“You could pump in hundreds of thousands of dollars, and the drug might not actually work for you, because not all drugs work for everybody. Is it selfish to buy myself a few more years and then to leave [my family] with a bigger debt?”
He lives with both uncertainty and fatigue - digging the hole for a Nikau frond in his Mount Albert backyard took him six sessions. That has slowed a career that began in 1993 at the Nelson Mail, and has spanned the Marlborough Express, Sunday Star-Times, Sunday News, Stuff’s predecessor Fairfax, the New Zealand Herald, and assignments for Getty Images and AFP.
He’s photographed nine prime ministers, more than 50 All Blacks tests, and countless everyday people and newsmakers, including West Aucklander Simon Clark, a father of four whose family collected cans as scrap metal to try to pay for daratumumab, and who died in June last year.
It’s strange being on the other side of the lens.
“It’s difficult to put yourself out there, when I have actively tried not to do that for my whole career,” he says.
“But I really feel the Government doesn’t see the human face of these issues. It’s not a spreadsheet, it’s not just a number. It is real people, with hopes, dreams and families.”