Peak cancerA disease where abnormal cells split without control and spread to other nearby body tissue and/or organs. Cancer cells can also spread to other parts of the body through the bloodstream and lymph systems. body, Rare Cancers Australia, has co-authored a pre-Budget submission of $4.7million to ensure funding for the innovative Australian Rare Cancer (ARC) Portal can continue
- The ARC Portal is a true one of its kind: ARC is the only online platform that connects rare cancers patients with rare cancer specialists, to life-saving clinical trials and to breakthroughExtra pain killer medicine that lasts for two (2) to three (3) hours:
• short and bad pain that breaks through (is felt) even though a person is taking pain killer medicine.
• needing stronger pain killer because the medication being used is not lasting and the pain has broken through.
treatments. If funding for the portal ceases so too does a crucial lifeline for the 1,500 Aussies who currently depend on it. - People living in regional and rural Australia set to be the biggest losers: The ARC portal means those in regional and rural settings can access specialist services as quickly and seamlessly as those in the big cities. Should funding discontinue, many living with rare cancer outside of the big cities face further logistical and financial hurdles.
- Rare and less common cancers demand specialist services: Those with rare cancers are twice as likely to die (compared to common cancers) and face significant hurdles accessing life-saving information about their condition and to new treatments and research. Resources specific to RLC cancer patients, including the ARC Portal, are critical.
The Australian Rare Cancer (ARC) Portal is a valuable online referral service that is helping more than 1500 rare cancer patients get appropriate access at the right time, regardless of geographic location, to improved treatment options and ultimately better outcomes.
Administered by the not-for-profit research organisation, BioGrid Australia, the ARC Portal provides access to critical specialist rare cancer care anywhere, whilst also supporting navigation and cost of care. These are all compounding causes of additional stress for rare cancer patients already dealing with the horrific news of their diagnosisUsing medical test results, identify and name a disease and/or condition..
The peak national body for rare cancers, Rare Cancers Australia (RCA) co-authored a pre-budget submission seeking an extension to the Federal Government’s funding of the ARC Portal, appealing for an investment of $4.7million over a three-year period to ensure its continued operation. Professor Clare Scott, Principal Investigator at the ARC Portal, expressed her concern for the rare cancer community, in particular those living in regional areas with limited access, should funding for the ARC Portal cease in a matter of months as allocated.
“The future of this lifeline for so many patients and clinicians trying to navigate the already very difficult and isolating rare cancer journeyWhat a person experiences/lives from the time they think they have cancer., is under serious threat should interim funding cease in July this year, Prof Scott said.
“We, the clinical research and patient community are rallying behind a call for the government to reinstate funding of the ARC Portal so that we can continue to build on the important research, guidance, testing and trial opportunities it has made available to so many patients.”
RCA CEO, Christine Cockburn, emphasised the value the ARC Portal is bringing to regional and rural populations who too often miss out on access to resources, experts and treatments more commonly found in metropolitan areas.
“We already know that people diagnosed with a rare cancer are already facing more complex and isolating experiences in their cancer journey than those with common cancer types,” Ms Cockburn said.
“To have the added complexity of being regionally or rurally located and therefore unable to access the right medical professionals with the right knowledge at the right time is unimaginable.
“That is why the ARC Portal is so valuable as it expands care for Australians with rare cancers, giving them access to information at a crucial time, and making a significant impact on both hope and outcomes for patients, regardless of where they live,” Ms Cockburn said.
Analysis of patient referrals shows that 45% of ARC Portal referrals were for Australians living outside major cities, which is a significant over-representation for regional/rural Australia, when viewed at a total population level. What this exemplifies, however, is that ARC is clearly a critical lifeline for those outside of the majorcities, who don’t have ready access to the same services, expertise, testing, clinical trials or research opportunities.
ENDS
Media Contact
Alicia Ballesty, Head of Strategic Communications
Rare Cancers Australia
0499 880 742
[email protected]