Rare and less-common forms of cancer are the number-one killer of Australian children, claiming one life every four days, a report says.
The figures are even worse among middle-aged adults, with 10 people dying every day, double the number of deaths from heart disease.
The report from charity Rare Cancers Australia, entitled Just a Little More Time, revealed cancers were the most common cause of disease-related death across all ages in Australia.
For young adults aged 20 to 29, rare cancers are the fourth most common cause of death and accounted for more than half of all cancer deaths, the report said.
Among younger adults aged between 20 and 39, one person dies every day from rare or lesser-known forms of cancer.
In the Baby Boomers age bracket, rare cancers are the most common cause of death, with more than 4,500 deaths every year — more than lung cancer and coronary heart disease combined.
Rare Cancers Australia said while awareness of these lesser known forms of cancer had improved significantly, there was little research into them, which meant limited expertise in their treatment.
“It is not surprising that the survival rates of rare and super-rare cancers are significantly lower than those of common cancers, but the fact that we have made so little improvement for these patients remains disappointing,” the report said.
Cancer Australia was quoted in the report, revealing that of the $350 million spent annually on cancer research, only 2 per cent of that is going to solid rare tumours.
Lack of specialist knowledge has ‘enormous consequences’
Rare Cancers Australia CEO Richard Vines said the survival rates were also lower than for other forms of cancer, because diagnosis was often so late.
“Almost every patient was initially misdiagnosed for some period of time and it’s that early detection that is critical,” he said.
“That’s why we’re seeing such huge improvements in survival for breast cancer and prostate cancer.”
Mr Vines said the lack of research into rare forms of cancer had implications for knowledge, but also for the clinical expertise in treating them.
“Clinicians and scientists are not engaging in research, we’re not building up centres of excellence and understanding around these cancers,” he said.
“So … when patients are diagnosed, there’s not extensive, deep knowledge like there is with breast cancer or melanoma or prostate cancer about how to treat them.
“The consequences are enormous.”
Mr Vines also said it was a “tragedy” cancer specialists believed many medicines available for common cancers could also be effective in treating rarer forms of cancer, but sufferers often could not access them due to high costs.
He said the medicines were not listed on the Pharmaceutical Benefits Scheme because the standard of data required to list the drug needed large numbers of patients.
“There’s an immunotherapy that was approved for melanoma some time ago. Now we know that has application across another 30 cancers, but none of those would be funded on the PBS at present,” he said.
“So you have the situation where two people diagnosed on the same day could be confronted — one with paying $37 for a treatment, and the another with $10,000 per treatment; it’s just not equitable.
“This is not a problem that this Government created, but it’s certainly an opportunity for this Government to fix it.”