Game-changing cancer program secures funding injection

Australians living with rare and less common cancers, particularly those in rural and regional parts of the country, have been given a lifeline 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. 

Principal Investigator of the ARC Portal, Professor Clare Scott, explained the value that this 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.  

Launceston based mother of four, Amanda, described 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 said.  

“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,” she added.

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.

“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,” stated RCA CEO, Christine Cockburn.

“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.”  

Maureen Turner, CEO of Australian non-profit and partner of the ARC Portal, BioGrid Australia, said “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 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.”

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.

Professor Scott added, “The 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.”

“The ARC Portal ensures people receive expert advice, from Australian and international experts, including recommended treatment options. This leads to better outcomes,” Cockburn 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.

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