Tracey Trumper had already survived breast cancer when she was hit last year with a devastating new diagnosis.
After seeking treatment for a persistent cough, she learned she had Stage IV lung cancer. The mother of three, who had never smoked, was advised by her doctor to get her affairs in order.
Lung cancer is the leading cause of cancer deaths in Australia, expected to account for almost 19 per cent of all cancer deaths this year.
A targeted therapy for her rare cancer, known as ROS1, offered Mrs Trumper some hope - but the drug, Crizotinib, was not subsidised by the federal government as part of the Pharmaceutical Benefits Scheme. It was going to cost her more than $7000 a month.
"Unless you're a millionaire you can't afford it," Mrs Trumper said. "I said to my husband, 'I'm not going to put the family in debt'."
More than 186 cancer types are defined as rare or less common, affecting fewer than 12 in 100,000 people.
While individually they are rare, collectively they account for almost one-quarter of cancers diagnosed and almost 40 per cent of cancer deaths, according to the Garvan Institute of Medical Research, which says a patient with a rare cancer is almost twice as likely to die as a patient with a common cancer.
Yet rare or less common cancers receive only 13.5 per cent of research funding and 12.6 per cent of funding for treatments through the PBS. Many patients cannot afford the tens of thousands of dollars needed to pay for their own treatment, affecting survival rates for the 42,000 Australians diagnosed each year.
Vicky Cutler describes it as "a terrible inequality".
Ms Cutler's husband Ian died in January 2013, just eight months after he was diagnosed with a rare thyroid cancer. She said the treatment that "gave him a little bit more time" with her and their three daughters cost $2500 a week.
"You ask, 'Will we get another month and have Christmas with him and pay for that, or not?'" Ms Cutler said. "What do you do? You find the money and pay for it, because time with that person is so precious."
A Senate Select Committee is holding public hearings in Sydney on Thursday and Friday into research funding for cancers with low survival rates.
When the Federal health budget is already stretched, allocating funds for diseases affecting small numbers of patients is a challenge. But the poor investment in research and treatment meant "patients with rare cancers are, almost without exception, those most likely to have the lowest survival rates, " the charity Rare Cancers Australia said in its submission to the inquiry.
"What is alarming is the diagnoses and deaths from these cancers are actually increasing in Australia today and there is no significant research being undertaken," Rare Cancers Australia chairman Richard Vines, told Fairfax Media. "We need to understand that lack of research means lack of clinical knowledge. As a consequence we have insufficient highly expert clinicians with specialist knowledge of the treatment of these cancers."
Cancer Council Australia will also appear at the Senate inquiry, with CEO Professor Sanchia Aranda saying there were "lost opportunities within our current health system to reduce stark survival inequities between cancer types".
The five-year survival rate is 90 per cent for breast cancer and melanoma and 95 per cent for prostate cancer, but just 16 per cent for lung cancer.
"Some of those survivors ... may have been lucky enough to get an early diagnosis and optimal treatment," Professor Aranda said. "We don't have a systematic way of knowing why some people survive for five years when most people don't - because the research hasn't been funded."
Professor Aranda said well-defined pathways to diagnosis and treatment had contributed to high breast cancer survival rates.
"If we can become more systematic in detecting and managing some of the poor-survival cancers, we could help people now - at the same time as we change the culture of biomedical research to develop new treatments for all of the forgotten cancers."
Mrs Trumper, who had a double mastectomy after being diagnosed with breast cancer a decade ago, said there was "so much support and information out there for breast cancer. Patients know what they have to do, the doctors know about treatments. But with rare cancer, it's a completely different story; there's nothing out there."
A campaign by Rare Cancers Australia raised the money to provide her with Crizotinib. Sixteen months after her diagnosis she is back at work and "thriving".
Mrs Trumper has never asked her specialists how long she might have left. "I said to my kids, 'I'll fight it with everything I've got'. Even though I've got Stage IV, I can live with this. I can be with my family."
