It was a stunning and frightening diagnosis for Peter Barber in March 2019 when he found out he had the rare and aggressive asbestos-related cancer, mesothelioma.
"The ground dropped away from me. It had been dormant for years. I had the asbestos in my 20s. Total shock," the retired Eden-based environmental lawyer told The Canberra Times.
"I sort of went into hiding. I didn't want to tell my family apart from my immediate family. And I was looking at death soon, sort of hanging over my head. I'd been given a death sentence."
Mr Barber believes he was liberally exposed to asbestos working on large building sites as a young man. An all too familiar story of a different time, when less was known.
"I used to instruct tradesmen where to put steel girders and I used to push asbestos out of the way to show them," he said. "There was asbestos wrapped around ducts and everything up in the ceiling we were installing. And I did that very frequently".
"We're totally innocent. We just didn't know. The companies knew, but they weren't letting on."
But Mr Barber says he is in remission after using a combination therapy of the drugs, Opdivo and Yervoy, to help his immune system fight the cancer.
"I am still active, working, riding bikes, everything," he said.
The catch is there is a high cost - more than $130,000 per course of treatment, or $20,000 or $30,000 a shot.
In a first for asbestos related cancers, Opdivo and Yervoy, which work in tandem in different ways, have been given an expanded listing by the federal government on the Pharmaceutical Benefits Scheme to include treatment for inoperable or unresectable malignant mesothelioma.
The federal Health Minister Greg Hunt expects 700 patients a year will benefit from the listing which will start on July 1.
"The Morrison government's commitment to ensuring Australians can access affordable medicines, when they need them, remains rock solid," Mr Hunt said.
Canberra Hospital's staff specialist medical oncologist Geoffrey Peters has welcomed the expanded listing.
"This is the first time that immunotherapy has been reimbursed on the Pharmaceutical Benefits Scheme for mesothelioma," Dr Peters said.
"We're fortunate in Australia that we have the Pharmaceutical Benefits Scheme and that we have access to cutting edge cancer therapies for our patients. This is universally an incurable cancer with dismal five year survival outcomes, so this is an excellent and exciting opportunity for our patients."
Dr Peters says the Canberra region typically sees around five to 10 new mesothelioma patients a year, up to 700 a year across the nation.
"There's a long latency period between exposure to asbestos and the development of mesothelioma," he said.
"So there are sort of waves of patients where incidence is expected to increase over the coming years."
There are other potential drug candidates for a similar PBS listing for mesothelioma.
Some mesothelioma patients and their families are campaigning for the listing of the immuno-therapy drug Keytruda.
"Certainly expanded access to immunotherapy would be welcomed for our patients," Dr Peters said.
The federal government has also approved the listing of Kuvan or sapropterin on the PBS to include treatment of maternal phenylketonuria (MPKU), a major cause of foetal abnormalities.
The PBS listings have been recommended by the independent Pharmaceutical Benefits Advisory Committee.
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