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Twelve months ago, Geoff Nyssen was told by his doctor that he might not live until Christmas.
After a decade of fighting blood cancer and a string of different treatments, his last remaining hope was to travel overseas to access an emerging form of immunotherapy.
The father of two recently returned from the US to his home on Victoria's Mornington Peninsula as a cancer-free man.
"To be sitting here in complete remission, my mind is absolutely blown," he said.
With help from a federal government financial assistance program, Mr Nyssen received CAR-T therapy in Seattle to treat multiple myeloma — a disease he'd endured since 2014.
It is believed about 20,000 Australians are currently living with multiple myeloma – a disease that has a five-year survival rate of about 55 per cent.
Mr Nyssen would like to see the same treatment — in which a patient's immune system is re-engineered to target cancer cells — available on Australian shores for those, like him, whose lives depend on it.
But concern over costs is preventing the therapy – known as cilta-cel – from being funded by Australian taxpayers.
Push for significant price reduction
For the second time, the Medical Services Advisory Committee (MSAC) announced it would defer support for an application from pharmaceutical company Janssen to subsidise cilta-cel.
The MSAC advises the government on whether new medical services and technologies should be taxpayer funded.
Janssen had proposed for cilta-cel to be used as a fifth line of treatment for relapsed or refractory multiple myeloma.
But while accepting the product had "superior effectiveness" compared with other therapies, the MSAC again cited concerns over cost-effectiveness.
Despite hundreds of submissions in support of the application, none of the states or territories – which jointly fund CAR-T therapies with the Commonwealth – was willing to back cilta-cel unless there was a "significant" price reduction.
The decision has bewildered blood cancer specialists and patients nationwide.
Mr Nyssen, who recently celebrated his 50th birthday, said he was "thoroughly frustrated" by the latest MSAC verdict.
"In the four months that I was over in the US, several myeloma colleagues, if you will, have passed away, which is just incredibly sad," he said.
"It feels like a travesty, because there is a therapy that will, or could very well have, kept them alive."
Government 'committed to negotiations'
Subsidised CAR-T therapy is available in Australia for certain types of lymphoma and leukaemia.
The Therapeutic Goods Administration (TGA) has approved cilta-cel for use against multiple myeloma following three lines of previous treatment, but the therapy is yet to be publicly funded.
CAR-T therapies are highly specialised and routinely cost more than $500,000 per patient.
A Department of Health and Aged Care spokesperson said it was committed to working with Janssen to "find a way forward".
"The MSAC considered cilta-cel was not cost-effective at the price proposed by the sponsor, Janssen-Cilag, and advised that cost-effectiveness could be achieved … by reducing the proposed cost of the therapy," the spokesperson said.
"This is consistent with advice the MSAC has provided about the public funding of other CAR-T cell therapies … that are currently funded in Australia, following successful price negotiations."
However, there is a concern among the Australian blood cancer community that Janssen may walk away from the negotiations.
In a statement, Janssen said it was prioritising supply of cilta-cel for countries where the treatment was funded, but reaffirmed its commitment to bringing the product to Australia.
"There are currently no effective treatment options available for patients who have exhausted four or more lines of treatment, and these patients are waiting in hope for the government to make a timely decision," said Urs Voegeli, Janssen Australia and New Zealand managing director.
The ABC sent questions to the health ministers of Queensland, New South Wales, Victoria and Western Australia – the states where CAR-T therapies are delivered.
The specific questions were either unanswered, or the ABC was referred to the Commonwealth by government spokespeople.
At what price?
The Leukaemia Foundation's general manager of blood cancer partnerships Tim Murphy implored the government and Janssen to strike an agreement as soon as possible.
"Fifth line treatment for multiple myeloma is terrible, people have gone through a huge amount of relapse, and they're in a terrible state of their disease," he said.
"To not give them hope, because there's a protracted negotiation, is unconscionable."
For Jane Anderson, having a stem cell transplant was "like running a marathon through hell".
"You think it can't get worse, and the next day it did," she told the ABC from her home in the Illawarra region of New South Wales.
After being diagnosed with multiple myeloma at age 60, she underwent a series of gruelling treatments, but continued to relapse.
A few years ago, she successfully joined a clinical trial and became the first person in New South Wales to receive CAR-T treatment for myeloma.
She has been in remission for more than 30 months and is now a "proud grandmother".
"What price does the government put on two or three years of extra life?" she said.
"Of seeing your children graduate and marry, your elderly mother turning 95, or having the joy of grandchildren.
"How do you apply a quantitative economic model to those quality-of-life things?"
Reporter Hayden Smith has previously undergone CAR T-cell treatment for relapsed lymphoma.
March is multiple myeloma awareness month.