KiwiSaver becoming less of a retirement fund and more of a 'life saver' for cancer patients

KiwiSaver is becoming less of a retirement fund, and more of a "life saver" for cancer patients forced to use it to pay for treatments not funded or available here.

Robert Moffitt was diagnosed with blood cancer in 2022, and a specialist recommend daratumumab.

Daratumumab, or dara, which was funded in more than 45 other countries, had been on Pharmac's "options for investment" list for years and was considered a high priority drug - meaning it would fund it if it had the money.

But with no funding for it in New Zealand, dara could cost hundreds of thousands of dollars, with a patient funding the drug privately paying $10,000 a dose.

Some patients have chosen to go overseas to Australia where the treatment is funded, but for Moffitt that didn't seem like an option.

"There was no option of relocating, not at our stage of life. And I admire people who have the courage or the ability to travel overseas."

Moffitt said he was stunned when his specialist told him dara would cost around $220,000.

"We have family in Australia who told us the cost of daratumumab over there and initially that made me angry, frustrated, but at the end of the day, we live here in New Zealand and this is what we had to deal with."

Moffitt was forced to cash up his KiwiSaver to fund the treatment.

"My KiwiSaver just virtually disappeared overnight.

"I started [it] many years ago and like everybody else that was something that we were going to use for trips overseas or whatever eventuated."

Not only was Moffitt spending hundreds of thousands of his retirement fund to stay alive, he also had to pay tax, something he said was appalling.

"We pay $25,000 in GST for the privilege of accessing daratumumab, which I think was criminal."

At the time he wrote to Jacinda Ardern and other politicians to raise his concerns about the high tax on the drugs, but was told it would be too hard to remove the GST.

"I got back 'very sorry to hear what's happened to you, but we're very sorry that will not happen,' it was too difficult."

Moffitt said he was aware of the promise not to forget blood cancer patients made by the National Party, and at the time it gave him some encouragement, but now he views it as an "empty promise."

"I was also sceptical and remain so."

Other blood cancer patients and their families have told Checkpoint they feel forgotten, and were calling on the government to fulfil the broken promise.

Moffit also wanted the government to step up.

"Look at the cost of treating people with standard chemotherapy or drugs that are available now, inefficient drugs. And look at the cost of daratumumab and the ability for it to stop myeloma in its tracks.

"It's not successful with everybody, but the cost of daratumumab is way less than the cost of ongoing treatment, stem cell transplants that aren't successful and having to go through that again."

But he did not have confidence the broken promise would be fixed any time soon.

"Most of the people who make the decisions have very good health insurance, health plans and what happens to the general public in New Zealand doesn't affect them, it's just not on their radar."

Malaghan Institute's CAR-T cell therapy trials

A leading New Zealand research institute was passing the hat to fund the final stages of a clinical trial into a cutting edge treatment for blood cancers.

Checkpoint spoke to a former police officer, who had to cash up his retirement savings and rely on fundraising to pay his way to China for a CAR-T cell transplant for the blood cancer myeloma.

That is where a patient's own blood is harvested, the T cells are separated out and modified to fight the cancer, and then transfused back into the patient. It could lead to remission for some sufferers.

The treatment was not available in New Zealand.

But medical researcher, the Malaghan Institute, was doing clinical trials for CAR-T cell therapy for another blood cancer, non-hodgkin lymphoma, with the hope of making it accessible in the public health system.

Malaghan Institute Clinical Director, Doctor Robert Weinkove told Checkpoint they had treated nearly 50 patients over the two phases of their trials.

Phase one began in 2019 and concluded after treating 30 patients.

"We're now doing what's called a phase two trial, now we've found what we believed to be the right dose of the treatment, with a larger group of patients with certain types of lymphoma and that trial is about a third recruited."

Weinkove said it was hard to say how far they were form delivering the treatment for blood cancer sufferers in New Zealand, but hoped it would be soon.

"It does really depend on the results of the trial and how the results are received by these leaders, regulators and of course funders.

"We're having a lot of conversations at the moment with Health New Zealand, the Cancer Control Agency, Medsafe and Pharmac, about what it would take to offer this routinely here and we'd like to think we can get there in 2027."

While patients travelling to China for CAR-T cell treatments spend their time in hospital, Weinkove said there's hope that here it would operate as an outpatient treatment.

He said this would be a draw card for funders, making the treatment more cost-effective.

"We hope we're providing them with a cost-effective treatment that we can easily deliver in the New Zealand health service if we have the resources to do it, because it's a one off treatment offered as an outpatient it can be highly cost-effective and potentially very deliverable."

While the treatment was still in its trial phase, and only available for non-hodgkin lymphoma, not myeloma, Weinkove hoped it would trigger movement for other treatments.

"I'd like to think that whatever we've done and we've actually set the systems up and shown that we can give this kind of treatment here and hopefully start to bring other treatments, other clinical trials here and hopefully other commercial funded treatments, not just our own."

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