NZ cancer patient travels to Australia for CAR-T therapy, not funded in New Zealand

A New Zealand blood cancer patient who was forced to leave his children behind and make a last-chance dash to Australia to access funded drugs has now been given a cutting-edge transplant that is not publicly available here.

Late last year, Tawhai Reti, who has myeloma, had exhausted all his funded treatment options in New Zealand, and his family was preparing for the worst.

But instead, in February, the former shearer and his wife, Lani, made the decision to go to Australia to access a lifesaving drug, Daratumumab, which is funded over the ditch, but not in New Zealand.

Having lived and worked in Australia for a time while he was in remission, Reti still qualified for Medicare cover.

For the past five months extended family has looked after their four children on the West Coast while Lani commuted back and forth to be with Tawhai.

Lani said that without that treatment, Tawhai would not still be here today.

The treatment has been so effective that he has just been given a type of CAR-T cell therapy, which is also not yet available in New Zealand, but can put some patients into remission indefinitely.

CAR-T cell therapy involves a patient’s own blood being harvested and modified to fight the cancer, then transfused back into the patient.

Lani said they are incredibly humbled that Tawhai is able to receive the treatment.

“Tawhai is officially the first patient in Australia to receive government-funded CAR-T cell therapy called CARVYKTI.”

If the couple had to fund the treatment themselves, it could have cost anywhere between $150,000 and $400,000, depending on where it was accessed.

“This has just been the icing on the cake for us; we could not have even imagined that this would be possible so soon for him.”

While the couple are extremely thankful to have been able to access treatment, having to uproot their lives and leave their children behind has not been ideal.

“We have always felt massively let down by our health system. We know that there are so many people just like us, and at times we do feel a little guilty in the sense that we have been able to have this opportunity when there are so many people stuck in New Zealand, unable to have what we have or be able to access what we’ve been able to access.”

Originally, the pair were told that Tawhai would have to remain in Australia for at least a year while he received treatment.

However, the success of the treatment could mean that the time is cut down.

“Because of how Tawhai has been handling the treatment and how tough he is, that may be a little bit shorter, hopefully. It all just depends on this next stage and how he copes with the CAR-T and then recovers.”

Tawhai’s cells were first harvested around six weeks ago, and then shipped to the United States, where they were manufactured to “attack the cancer”.

The cells were then shipped back, and Tawhai is now receiving cells back into his body.

He said the treatment has gone smoothly so far.

“It’s a lot easier and not as scary as what you think.”

“It didn’t take long, and all the nurses and everything made it real comfortable for you and sort of takes your nerves away.”

In March, Tawhai told Checkpoint that being away from his children had been “horrible”.

But despite the difficulties, he said the possibility of seeing his kids grow up has made the temporary move worth it.

While the family hopes to be back together and settled in New Zealand in the near future, Lani said there is still a lot that needs to change back home.

The government is currently setting up a Blood Cancer Oversight Group, which Health Minister Simeon Brown said is all about making sure the resources put in are delivering better outcomes for patients.

The group aims that no lives are needlessly lost to blood cancer by 2035.

Lani said that is no where near soon enough.

“I don’t anticipate much change, and it absolutely cuts me. The fact that he has said, they’re aiming for these medicines and things to be available or no lives to be lost to blood cancer by 2035,”

“That’s nine years away, and how many people are we going to lose in that nine years unnecessarily when things could be changed right now, action could be put in place right now. They could save lives today.”

Currently, Tawhai is able to leave the hospital and spend time with his family at their accommodation.

Soon he’ll be admitted back into hospital to be closely monitored, and after a month he’ll be reviewed.

From there, the family hopes they will be able to begin to plan for Tawhai’s return home.

For Tawhai, he can’t wait to be back and finally get a “decent” mince and cheese pie.

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