The Federal Government is stepping up its efforts to improve the abysmally low survival rates for rare cancers and other diseases by boosting funding for medical research.
It will invest $26 million in 19 clinical trials across the country that could lead to new and improved treatments for patients who often have few options and poor life expectancy.
That is double the amount of money initially flagged by Health Minister Greg Hunt when he called for applications from clinicians and medical scientists last year.
"We have a once in a generation opportunity to give people a sense of hope and possibility, which previously may not have existed in many cases," he told Background Briefing.
"This will provide real resources for many of those diseases that have a small population base but in many cases catastrophic outcomes that we can and must address on our watch."
Rare cancers are collectively responsible for more than half of all cancer deaths in Australia each year but receive just 12 per cent of the available research funding.
"You're looking at essentially an epidemic and the lack of funding for both research and treatment is outrageous," said Richard Vines from the advocacy group Rare Cancers Australia.
"We're encouraged that it's on the radar, people understand the inequity, they know there's a need for action, but what we now have to battle through is that natural inertia."
Outlook improves for patients
Survival rates for more common cancers have improved dramatically over the past three decades thanks to a huge injection of money from governments, charities and philanthropists.
As a result, 90 per cent of breast cancer patients, for example, can now expect to live for at least five years after diagnosis.
"If you're diagnosed with a rare cancer as opposed to a common cancer, your chances of surviving for five years are less than half so it's dramatic, the difference," Mr Vines said.
Australia's biggest investor in cancer research is the National Health and Medical Research Council (NHMRC).
But many oncologists specialising in rare cancers complain they have a hard time securing grants from the government-funded organisation.
At the end of last year, a cross-party Senate committee called on the NHMRC to make tackling cancers with low survival rates an official priority, but it is yet to act on that recommendation.
Mr Hunt said while he could not instruct the NHMRC to allocate more funding to the cause, he does have that power over the Medical Research Future Fund (MRFF).
"I've been in the fortunate position of defining the priorities," he said.
"What I want to see in Australia is a dedicated funding base for rare cancers and rare diseases aimed at giving patients access to clinical trials and aimed at attracting medical researchers into this space."
Mr Hunt said another $33 million will be spent on additional clinical trials through the MRFF in the 2018-19 financial year.
Background Briefing will release an investigation into funding for rare cancer research on February 1. You can subscribe to the program wherever you get your podcasts or through the ABC Listen app.