The Detail: Medical migration only option for many blood cancer sufferers

Source: Radio New Zealand

The Oz/NZ great divide when it comes to treating blood cancer

This week, actor Sam Neill announced he was cancer free, after groundbreaking treatment for lymphoma blood cancer in Australia.

Now he’s fighting for the lifesaving CAR T-cell therapy to be available for blood cancer patients across Australia, fronting a media campaign there calling for public funding of the treatment.

“Treatments like this – CAR-T therapies and others coming through in a rapidly changing medical world – I hope to be available to everyone who needs them in Australia and NZ [and worldwide],” he said.

CAR T-cell therapy genetically modifies the patient’s immune cells to target and kill the cancer cells.

When chemotherapy he was undergoing in New Zealand stopped working to treat his blood cancer, Neill was accepted into an Australian clinical trial for the T-cell therapy. It was his last option and it worked.

“It’s science at its best,” said Neill, who is patron of Snowdome medical foundation, which has been pushing for the therapy to be accessible to everyone.

The same battle for access to the best blood cancer treatment is going on in New Zealand, but there are stark differences between the two countries in what’s offered to patients and their survival rates.

In Australia, CAR T-cell therapy is already available in the public health system for certain blood cancers at certain hospitals, and the government is set to announce a rollout of the specific therapy used in Neill’s treatment in the next two months.

Here, there is no funded CAR-T therapy. Blood Cancer NZ head of advocacy Rosie Shaw says New Zealanders have to go offshore for the treatment that costs more than NZ$700,000 per patient.

Shaw says a privately funded CAR-T clinical trial is underway in New Zealand and, if it is successful, it could lead to funded treatment, but nothing is promised and the New Zealand health system is grappling with introducing expensive, but revolutionary new blood cancer therapies and medicines.

She says Neill’s news brings a lot of optimism to an issue that is little understood.

Last week, the Blood Cancer NZ charity presented its State of Blood Cancer report at parliament, which detailed the burden of blood cancer for the first time.

There are 100 different types of the disease, including leukaemia, lymphoma and myeloma. It is estimated 27,000 Kiwis live with blood cancer, one in 18 will develop it in their lifetimes.

It is the third-leading cause of cancer death, but in most cases, it cannot be prevented or screened for, and it cannot be removed by surgery.

It can be cured or treated with medicines and, in some cases, a stem cell (bone marrow) transplant.

Like Neill, Auckland man Andrew Mackintosh initially had chemotherapy for his aggressive form of lymphoma and it also stopped working.

Unlike Neill, who had access to revolutionary therapy, Mackintosh’s only lifesaving, cancer-curing option was a stem cell transplant, but he was told he would have to wait in the queue, because there was not enough hospital space or medical staff to treat him immediately.

Eight months later, he got the transplant. In Australia. He says he would have waited 1-2 months, but he was too sick to travel.

By then, he was so ill, he was not sure he would survive. He’s grateful the transplant cured him, but he is angry that the delay cost him, his family and taxpayers.

“The gaps that I had in the system, they cost me more. They cost me in terms of the outcomes that I’ve got, they’ve cost me in terms of not being able to get back to the workforce.

“They’ve also cost the health system, because that entire eight months that I was waiting, I was on very expensive drugs, I was seeing the haematologist every week, I was getting blood tests done, I needed monitoring, I needed tests. It’s not saving the health system money by not providing these services.

“They gave me the treatment that I waited for eventually and then I needed more help out the back side of it, so I’m angry that there’s no point – not even a cost-saving benefit – to not providing these outcomes. It’s just hurting everyone, including the taxpayer.”

Macintosh decided to speak about his experience at Blood Cancer NZ’s presentation to parliament last week, because he says other patients who have fallen through the gaps are “too sick, too busy fighting their disease or the system to speak up”.

“Others are no longer here.”

Just last month, he watched his father die, after he was diagnosed with leukeamia.

“It was brutal watching what could have happened to me, happen to him,” he told the group, but he worried about the next generation of his family.

“I am here today to speak as a patient, as someone who has lost his father to blood cancer and as the parent of a potential future patient.

“I need to know that, if a blood cancer or blood disorder diagnosis is in my son’s future, that this preventable harm will be prevented and that his standard of care will not be riddled with gaps that he has no choice but to accept.

“As a parent, I want him to live. I want him to have the best possible outcome.”

In response to the Blood Cancer report, the government said it would set up a taskforce.

Mackintosh says it is the first step in stopping the so-called medical migration of New Zealanders seeking faster, better, but more expensive treatment overseas and stopping the persistently high death rate.

“Especially on the medicines front, we need the funding opened up to Pharmac to fund the blood cancer medicines appropriately. I’ve heard haematologists say we’re 20 years behind in New Zealand on that stuff.

“We also need to close some of the gaps in terms of treatment differences across the country, so removing what gets called the ‘post-code lottery’ for cancer patients, and the other big one from my perspective is the infrastructure including the number of people in the workforce.”

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– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand