Lani and Tawhai Reti. Photo: Supplied
There are calls for the government to settle an unpaid debt to blood cancer sufferers by fulfilling a promise by the National government to close the medicine gap.
For the patients and their families, it's all about the big C: Commitment.
During the election campaign, National pledged to fund a list of medications for solid cancer tumours, and it was forced to make good on that following public backlash over a lack of action.
But it had also given assurances to blood cancer patients, and two years on, they're still dying for life-prolonging drugs currently not funded in Aotearoa.
At the 2023 campaign policy announcement, Dr Shane Reti - who went on to become the Health Minister - gave assurances more than just once.
"I want to just give a shout-out, though, to the non-solid cancer sufferers. That's the people with myeloma and leukaemia. We have not forgotten you."
National was waiting on a report looking specifically at the blood cancer medicine gap between Aotearoa and Australia, and party leader Christopher Luxon said at that same announcement:
"Let's get real about it. New Zealand has a 15 percent higher mortality rate from cancer than Australia. And so that gap is real, and a lot of these treatments here are about extending life, but also are lifesaving.
"And so it is really important that we can access these drugs and give New Zealanders a better shot to actually close the cancer gap."
The Cancer Control Agency, part of the Ministry of Health, subsequently identified 24 individual blood cancer medications that were funded in Australia but not in New Zealand.
Among them was daratumumab, or dara, which is used to extend the lives of people with the incurable blood cancer myeloma.
Dara, which is funded in more than 45 other countries, has been on Pharmac's "options for investment" list for years and is considered a high-priority drug - meaning it would fund it if it had the money.
'We don't feel very remembered at this point'
The National Party commitment made in 2023 rings hollow in the ears of Lani and Tawhai Reti (he is a distant cousin to the former health minister) as they fight to keep the father-of-three alive.
Reti whānau are moving to Australia, so Tawhai can access life-saving drugs. Photo: Supplied
"I have reached out, I have sent multiple emails, I have sent multiple open letters, and the only things I've received back are automated emails," said Lani Reti.
Tawhai Reti was just 30 when he was diagnosed with myeloma after collapsing on the job as a hard-working shearer in North Canterbury.
"We had just got back from our wedding in the Bay of Islands. We'd been up to Tawhai's marae and married with all our family friends around and returned home to what we thought was going to be normal married life," Lani Reti told Checkpoint.
"I got a phone call that he had collapsed on the boards. So that was a bit worrying, you know, but shearing is so physically demanding, just sort of thought maybe he hadn't eaten enough that day or, you know, something had just made him a bit overheated.
"Then he collapsed again, and I thought something's not quite right."
After a visit to his GP, Tawhai was referred to a specialist and underwent multiple tests, including a bone marrow biopsy that showed multiple myeloma, a type of blood cancer that is diagnosed in almost 500 people a year.
"A shock, I don't think, is enough to explain it. How was that happening at this point of our life?"
Now aged 36, Tawhai has been through two stem cell transplants, the most recent in January 2025, and is starting on the last funded drug treatment available in New Zealand.
Lani and Tawhai Reti. Photo: Supplied
Lani said the drug, pomalidomide, may only be effective for six to 12 months before another relapse, so, at the urging of doctors, the family wants to get Tawhai treated with daratumumab as soon as possible.
But she estimates the cost of the drug for the first year of treatment would be $220,000 to $240,000, which is "absolutely not" within their reach.
The couple has four children aged 16, two others coming up 12 and 11, and nine. Tawhai has been carving their 21st birthday pounamu as he undergoes treatment.
"I don't know if I'm going to be there or not," he told Checkpoint, adding he wanted to live to see his mokopuna.
Last year, the Retis bought their first home and settled on the West Coast, but now face packing up and moving to Australia.
"The ultimate goal for us as parents is to provide our children with a home. And the fact that we now have to think about leaving our home that we've been trying to create for our family, just to get standard care for Tawhai to live longer, to spend your time with us, is just absolutely heartbreaking."
The Reti whānau lived in Australia for a time while Tawhai was in remission, and he would still qualify for medicare cover and immediate access to daratumumab. They're fundraising for travel to Australia.
It's a bitter pill to swallow for Lani Reti, who remembers the government telling blood cancer patients: "We have not forgotten you".
"We don't feel very remembered at this point. I have sent multiple emails. I have sent multiple open letters.
"I have had family write open letters that I've also sent through, and the only things I've received back are automated emails (saying) our concerns have been noted.
"It just feels like we're put into the too-hard bracket, or it's 'not my problem'. It's very distressing."
'I cry for the fact it's not more widely available'
Geoff Dawson feels awkward, even guilty, when he talks about being able to afford to access the life-changing drug daratumumab.
"I feel both exceptionally fortunate. I also felt guilty at times for having it when other people with the same disease don't have access to it.
"With the help of three or four very generous friends, we've essentially got a fund that is there for us. It's not bottomless, and in fact we're getting towards the end of it, but thus far it's been there for us."
That fund has allowed Dawson to spend around $350,000 on daratumumab, and the drug has kept him in remission.
Geoff Dawson says he feels guilty when he talks about being able to afford daratumumab. Photo: Supplied / Photographer: Jo Currie
The most recent assessment by Pharmac and its decision not to fund dara was "gutting", he said.
"It's soul-destroying. I know what it's like to be a patient on chemo, and it's not great. You're out of the economy, going from clinic visit to clinic visit, and the side effects are terrible.
"You feel like you're living in a parallel world. Everyone is off to work, and your body is compromised; it's fundamentally grim."
Being on dara was "really wonderful" and has allowed him to return to work, go back to mountain biking and travel overseas with his daughter.
"I cry for the fact it's not more widely available."
Dawson used to write business cases for a living and said Pharmac's decision process does not stack up to his thinking.
"I accept that they're budget constrained, but I also think that at the same time, we need to acknowledge that some of the more primitive treatments, the older treatments, have significant side effects.
"It's very easy for Pharmac to just look right past those side effects (which) keep people out of work, and there doesn't seem to be any motivation to provide treatments that don't have those side effects."
What would he say to the government?
"Those of us with blood cancers are waiting desperately for acknowledgement and that recognition, and new treatments."
This week, Checkpoint will speak to patients who have had to look overseas for treatment, and hear from a specialist who said authorities are downplaying what Kiwi patients are missing.
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