Brian Tink is facing the stark reality that his wealth may determine whether he lives or dies.
The 75-year-old Oxley resident's oncologists have said radiation and surgery are now too risky to halt the growth of his rare Chordoma tumours.
Rare cancer patient Brian Tink
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Rare cancer patient Brian Tink
Mr Tink's story highlights the inequalities in access to treatment faced by rare cancer sufferers.
But the last resort, trying medications not listed on the Australian Pharmaceutical Benefit Scheme, could cost between $4000- $6000 per month.
"I'm not a Rockefeller," he said. "I'm a retiree on a Centrelink pension. That sort of money is outrageous. It's awful, but all I can do is sit back and wait."
Rare and less common cancers account for half of all cancer deaths in Australia and 7 per cent of the total national disease burden.
But with less than 12.6 per cent of the PBS spend and only 13.5 per cent of cancer research funding, patients are under-treated, or not treated at all.
Rare Cancers Australia chairman Richard Vines said with a healthcare system geared to benefit the greatest number, rare conditions were systematically neglected.
He said it was getting harder for patients to access new medicines unless they could afford the full, unsubsidised cost or had been accepted into a compassionate-access program.
However, the 2016 Just a Little More Time report, due to be tabled in Parliament on Wednesday March 16, outlined a range of ways to improve the odds for more than 42,000 Australians diagnosed and 22,000 who die as a result of rare or less common cancers each year.
"If we continue to look at cancer by physical location in the body we are missing the point," Mr Vines said. "What we need is more research and more work in understanding the genetic mechanisms of cancer."
Information borrowed about the genetic structure of common cancers could help to determine treatment of rare cancers and to identify already PBS listed medications that could work for rare cancer types, he said.
Gathering the patient numbers to satisfy clinical trial conditions was virtually impossible with rare conditions affecting less than 6 in 100,000 .
However the use of "basket trials", aimed to test the efficacy of already listed medications against a range of less common cancer types, hoped to provide a base of evidence that would enable the drugs to be listed for use on cancer types with similar genetic structures.
Associate Professor Clare Scott working at Victoria's Walter and Eliza Hall Institute of Medical Research and Professor David Thomas, of the Garvan Institute of Medical Research are two leading experts conducting "basket trials" currently.
"We need to look at exceptions to the PBAC budget which won't break the budget," Mr Vines said.
He said broadening access to already listed and subsidised drugs was an "immediate and obvious first step" but there was still a lot of work to do to improve investment in research and diagnostic excellence in Australia.
Brumbies team chaplain David McDonald was never a smoker but was diagnosed in 2011 with an incurable, inoperable Stage 4 lung cancer.
"It happened totally out of the blue and my initial prognosis gave me about a year to live which was devastating," he said.
"We got testing done and found out it was a rare genetic mutation that was driving the lung cancer."
Discovering he was ALK-positive opened up a range of new medications but of the mix thought to be most effective, Carbo Platinum, Alimta and Avastin, none were listed on the PBS.
"My initial four chemo visits cost close to $8000 each visit and subsequent to that it has been about $3000 every three weeks," he said.
"I was effectively on non-stop chemotherapy for four years. In late 2015 the drug company waived the costs."
The mix of three medications over the years has cost him well above $100,000.
Covering the costs meant Mr McDonald's wife Fiona worked more, the couple extended their mortgage and received support from friends.
The Christian pastor, father of four and grandfather of two, said something needed to change.
He said it shouldn't be that compassionate access or the means to pay for high cost medications should determine people's fate.
"You can't lose your job on one hand due to illness and be faced on the other with thousands of dollars of bills each month," he said.
"Most rare cancer patients just don't have the time to wait for the approvals and subsidies to take place. Something has to change."
Mrs Vines said Rare Cancers Australia was dedicated to providing biannual benchmark reports in the hope they would shock policymakers into action.
"The impact of these cancers across the spectrum, from baby boomers to millennial children, is breathtaking," he said.
"As a society we are almost passive observers to this carnage and we have to change that. We need to get people focused on that there is a problem and see that so far we're not fixing it."