Rare cancers baseline report: 2014

17 Mar 2014

This report calls on the Australian government to take action for improving outcomes for rare and less common cancer patients.

Executive summary: Cancer is the leading cause of the total burden of disease and injury in Australia, accounting for approximately 19 per cent of the total disease burden in 2012.1 Despite a decline in cancer mortality and an increase in survival over time, 1 in 2 Australians will be diagnosed with cancer and 1 in 5 will die from it before the age of 85.

‘Rare cancers’ are defined as those with an incidence of less than 6 per 100,000 Australians per annum and ‘less common’cancers as those with an incidence of between 6 and 12 (inclusive) per 100,000 Australians per annum.

Every year there are over 42,000 diagnoses of rare and less common (RLC) cancers and around 22,000 deaths here in Australia and there is very little available, from patient support to new treatment options, for RLC cancer patients. Rare and less common cancers account for seven per cent of the total burden of disease in Australia.

For those Australians with rare or less common cancers we have, for the most part, failed dismally. While it is true that we have made some excellent progress in common cancers over the last 20 years, survival rates in many rare cancers have only improved marginally if at all, our research funding into rare cancers remains disappointingly and disproportionately low, as does the money we spend on government funded treatments for these patients. It is hard to believe that in the 20 years from 1990 to 2009 with all the advances in medical science and technology, that we have achieved so little for this group of patients and their families.

During the last twenty years Australia has seen the introduction of screening programs for common cancers (breast, prostate and bowel), awareness programs (lung cancer and melanoma) and significant monies allocated to both research through National Health and Medical Research Council (NHMRC) and treatment through the Pharmaceutical Benefits Scheme (PBS). The impact of these programs and funding has been significant for common cancers, but in contrast RLC cancers have not been given attention and resources and there has been little or no improvement.

Unsurprisingly, the survival rates for many RLC cancers are very low when compared with rates for the more common cancers indicating at least in part, that we are much better at diagnosing and treating common cancers.

This report calls on the Australian Government to take action for improving outcomes for rare and less common cancer patients, to review existing mechanisms and improve research, diagnostics and access to medicines for rare and less common cancers.

Without targeted mechanisms specifically designed to address the prevention, diagnosis, and treatment of RLC cancers we cannot hope to have an impact on mortality or improve patient outcomes in the coming years.

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