Rare cancers are killing 22,000 Australians a year as resources go to more common forms of the disease, according to a new report.
It’s time for people with rare cancers to benefit from breakthroughs in the decades-long battle against more common forms of the disease, says a new report.
It urges more focus on rare and less common cancers, which kill 22,000 Australians a year.
The main problem is that there are hundreds of them, most lacking significance as an individual disease.
This means most resources go to more common cancer types such as prostate, colorectal, breast and melanoma.
The report released by Rare Cancers Australia on Monday argues for patients to share in treatment advances made for other cancers.
Cancer researcher Associate Professor Clare Scott believes she knows how.
She says the problem can be made more manageable by grouping rare cancers according to similarities in their gene pattern.
Then scientists and cancer specialists could work together to find the most appropriate treatment among those developed for more common cancers with similar characteristics.
“Patients are not being dealt with well in our current system,” said Prof Scott of the Walter and Eliza Hall Institute of Medical Research.
“Best-guess treatment based what the cells look like down the microscope has failed.”
New gene analysis technology is providing new opportunities.
“Patients need gene patterning of their cancer cells to be done at diagnosis. That will link the cancer to a form that we know something about. However, most Australians do not yet have access to the technology needed for appropriate gene analysis, and it is difficult to get PBS funding for drugs to be used to treat cancers for which they were not originally approved.
However, Prof Scott is optimistic appropriate gene tests will be available within 18 months.
There is also a lot of work going on towards the setting up of specialist centres where teams of scientists and doctors can discuss each case in detail.
This will help find the best options for patients and contribute to making a case for the PBS to fund their medicine.
The Rare Cancers Australia report, titled Just a Little More Time, is aimed at inspiring discussion about ways to improve the lives of patients.
“We are calling on the government to improve research, diagnostics and access to medicines,” said Richard Vines, who founded the organisation with his cancer survivor wife, Kate.
“We have seen little improvement in survival rates over the past 20 years.”