Australians living with rare and less common cancers, particularly those in rural and regional parts of the country, have been given a lifeline today with the Federal Government announcing a funding commitment of $6.7 million over four years for the innovative online platform known as the Australian Rare Cancer (ARC) Portal.
Launceston based mother of four, Amanda, describes the ARC Portal as a game changer in her cancer care experience, providing hope, assurance and invaluable information on her rare and aggressive small cell carcinoma of the ovary.
“No one in my medical team had even heard of my cancer, and if you Google it, the results are awful, and the prognosis sounds really grim. That’s when my Oncologist referred me to the ARC Portal,” Amanda says.
“There were so many unknowns with my cancer, but the ARC Portal enabled me to talk to someone who knew about it and who was up to date with treatments, as well as connect my treatment team with other professionals from all over the world.
“Having a resource like the ARC Portal available to people who are regionally based, like me, here in my little corner of the world in Tassie, is crucial.
“I’m so happy to hear that it has this funding. If I didn’t have the support I did from the ARC Portal, my cancer experience would have been a lot different”, Amanda says.
Principal Investigator of the ARC Portal, Professor Clare Scott, explained the value that this injection of funding will bring to cancer patients and clinicians alike.
“The ARC Portal is a true one of a kind. It is the only digital platform that connects rare cancer patients to rare cancer specialists, life-saving clinical trials and breakthrough treatments, whilst the patient stays based with their regional specialist, supported by the expert advice” Professor Scott said.
“Today’s funding announcement is welcomed by the medical community, as it brings much needed hope and relief to those who depend on it, particularly for those in regional areas.
“I commend the Albanese government in recognising the value of the ARC Portal through this crucial funding promise, and I thank our stoic advocates and partners for their support,” Professor Scott concluded.
People living in regional and rural Australia are set to be the biggest winners of this announcement, with the Portal providing them with access to specialist services as quickly and seamlessly as those in the big cities, whilst keeping travel to a minimum.
The funding is also going to allow for a targeted expansion throughout Queensland to provide care to people in remote areas, through a partnership with Cancer Alliance Queensland and others. This will mean better access to specialty care for Queenslanders with rare cancers.
The peak national body for rare cancers, Rare Cancers Australia (RCA), co-authored a pre-budget submission in the last Federal Budget cycle seeking an extension to the Federal Government’s funding of the ARC Portal. Today, CEO of RCA, Christine Cockburn, says she is overjoyed with the news.
“To have certainty of funding for the next four years for this valuable online referral service is wonderful and I commend the Albanese Government, and the partners of the ARC Portal, for working together to ensure its future for the sake of all people living with rare or less common cancers regardless of postcode,” Ms Cockburn said.
“Rare and less common cancers made up 24% of cases diagnosed in Australia in 2024 and 33% of all cancer deaths. This means that people with a rare cancer are more likely to die from their cancer than those with a more common cancer, like breast or prostate cancer. They face significant hurdles accessing information, treatments and clinical trials.’.
“The ARC Portal ensures people receive expert advice, from Australian and international experts, including recommended treatment options. This leads to better outcomes,” Ms Cockburn concluded.
Maureen Turner, CEO of Australian non-profit and partner of the ARC Portal, BioGrid Australia, said the company is honoured to be supporting such an important initiative for overcoming the ‘tyranny of distance’ that impacts rare cancer knowledge and treatment.
“BioGrid Australia is uniquely positioned to support the ARC Portal by facilitating secure links for cancer specialists to expert advice, research opportunities, and clinical trial options, whilst maintaining patient confidentiality,” said Ms Turner.
“We have twenty years of experience providing secure data linkage services for sensitive clinical data across distributed locations, and we’re the only enduring collaboration network in Australia with the legal and ethical framework to enable this.
“The doctors and their patients who use the ARC Portal’s referral services can be confident that their data is in good hands,” Ms Turner confirmed.
“The ARC Portal is exactly the type of innovative, patient-centric initiative that BioGrid was created for, changing the paradigm of isolated clinical practice and data analysis, and we are now seeing how this translates into a tangible, positive impact for both doctors and patients who need help, regardless of where they are located,” she concluded.
Key partners and supporting organisations of the ARC Portal: Rare Cancers Australia, The Clinical Oncology Society of Australia, The NHMRC Clinical Trials Centre, Walter and Eliza Hall Institute of Medical Research (WEHI), The Garvan Institute of Medical Research, Melbourne Health, Sunshine Coast University Hospital, BioGrid Australia and Omico.
ENDS
Media contact:
Alicia Ballesty, Head of Strategic Communications
Rare Cancers Australia
0499 880 742 | [email protected]