Cancer treatment to cost $700k after door to trial shut

Thursday, 23 November 2023

Simon Hayes and his wife, Donnella Hayes.

If Simon Hayes' blood cancer had returned a couple of months earlier he may have been able to be treated at home in Wellington, for free.

Now a $700,000 bill and a trip to Australia stands between him and the next stage of his cancer treatment.

Less than a fortnight ago, a scan revealed Hayes’ non-Hodgkin’s lymphoma was back. They 52-year-old was told it was no longer treatable and he was unlikely to live beyond 12 months.

Until then, it had looked like the chemotherapy had been successful. Hayes and his wife, Donnella, were about to go on a holiday to the Gold Coast and Uluru, “some bucket list stuff”, Donnella Hayes said.

“The specialist said, ‘I know you’re travelling but you better cancel it, it’s not looking good’.”

The family were told about a local trial for a ground-breaking CAR T-cell blood cancer treatment, only to find out all the spots were full.

Now they must buy the same type of therapy overseas.

“We have made the call to, no matter what, go to Australia and pay for it privately. We're pulling out our KiwiSavers … maxing out our overdraft,” Donnella Hayes said.

Since 2019, the Wellington-based Malaghan Institute of Medical Research has been trialling CAR T-cell therapy with the ultimate goal of making it publicly available.

So far the trial has treated 25 New Zealanders, including Christchurch woman Kirsty Horgan, who was told in September 2020 she would not live beyond Christmas. She is now in remission.

Rachel Perret, team leader of the Malaghan Institute's CAR-T cell Research Programme demonstrates the cocoon which automates the process of treating cancer cells using immunotherapy. (File photo)

Malaghan's clinical director, Dr Robert Weinkove, said it wasn’t easy to turn people like Hayes away.

“We are hugely conscious of the lack of funded CAR T-cell therapies in New Zealand. Indeed, we developed our CAR T-cell manufacturing and clinical trial programme to help address this unmet need.”

The institute planned to scale up the trial to about 60 participants in 2024, but the next phase was dependent on securing the next batch of funding.

Donnella Hayes said they could not afford the gamble.

“[His cancer] is fast moving. He has to be well enough to receive a treatment to get maximum results.“

From left, Donnella Hayes, with Liam Fogarty (son) and Simon Hayes at Liam’s wedding.

Donnella Hayes says the family’s situation underscores the need for work like Malaghan's to continue in order to bring these life-changing treatments to New Zealand.

“The sooner [CAR T-cell therapy] is available to more people, the better. But that would be too late for Simon I expect.”

His daughter-in-law, Eileen Fogarty, began a Givealittle page on Sunday. By 5pm on Wednesday, about $35,000 had been donated.

Fogarty is mum to five-month-old Charlie, who is Hayes’ second grandchild. “I want him to grow up and experience his granddad.“

Weinkove said Malaghan had submitted a proposal for a national CAR T-cell service to the Ministry of Health.

“We hope to see a resourced clinical CAR T-cell service – and are keen to contribute to its development.

“We recognise that this cannot come early enough for patients who are in need right now.”