Rare Cancers Awareness Day (26 June) is a timely reminder of the substantial disparities facing those living with rare and less common (RLC) cancers. The cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs community is calling for action, not words, with the recent Senate Inquiry into RLC cancers demonstrating the urgent need to begin improving outcomes for those affected.
- Rare and less common cancers represent over a quarter of people diagnosed but over a third of cancer deaths in Australia – more than any one cancer type.1-3 Despite this, rare cancers are still being left behind with limited access to early diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results, screeningtesting for cancer or conditions that can lead to cancer before symptoms appear, also known as cancer screening and treatment.
- Without urgent reform, every day delayed costs lives: A recent Senate Inquiry revealed profound inequities facing those with RLC cancers, proposing over 40 recommendations for change. But progress remains sluggish while we await the Government’s response, as well as the outcomes of the Health Technology Assessment (HTA) review.
- Rare Cancers Awareness Day brings the community into focus: The National Press Club in Canberra will host experts and community members who share the realities of living with rare cancers, and outline the urgent steps needed to support this group and improve their outcomes.
26 JUNE 2024, CANBERRA: Today, on Rare Cancers Awareness Day, many of the major players in RLC cancers will gather at the National Press Club, Canberra to unite and support Australians affected by some of our most overlooked, and unknown, cancers.
Last year, over 51,000 people died from cancer,4 with more than one-third from a rare or less common cancer.1 While overall cancer survival is improving, the outlook remains vastly different for those facing RLC cancers. On average, only 62% of those with rare cancers and 45% for less common cancers will survive beyond 5 years, compared to 77% for common cancers.4 Sadly, for some, survival is stagnating or even declining.
Brisbane local, Patricia Curnow, 68, is all too familiar with the challenges of living with a rare cancer, after a shock diagnosis of Stage 3 Fallopian Tube last year turned her life upside down.
“Since my diagnosis, it has been a whirlwind. I had never heard of rare cancers before my diagnosis, let alone fallopian tube cancer,” she said.
“My mother had breast cancer, so I’ve always been very diligent with mammograms thinking that that was where my riskthe possibility that something bad will happen was. When in reality, there are so many other cancers out there that you just don’t hear about. On days like today, I’m reminded that I’m not alone, and that support is available.
“Through Rare Cancers Australia, I’ve even been introduced to someone who is also living with my unique type of cancer. Connecting with her has given me great hope.”
For many of these patients, they face the reality of a cancer so rare, that nobody has ever heard of it, not even their doctor. They must navigate a complex health system with limited information and little support, and often face huge financial burdens. These individuals are left to feel isolated, scared and lost.
According to Rare Cancers Australia CEO, Christine Cockburn, Rare Cancers Awareness Day is a critical reminder of the often-unspoken challenges people diagnosed with a rare or less common cancer face, and the change families need and deserve.
“What we know for certain is that greater support is urgently needed for those with rare and less common cancers. Too often this community is overlooked, put in the ‘too hard’ basket, meaning patients miss out on the critical care and support that every Australian should have access to.”
“It is for this reason that RCA broadly welcomed the recommendations of the recent Senate Inquiry into equitable access to diagnosis and treatment for individuals with rare and less common cancers, in particular several of those that echo the key advocacy asks we’ve been championing for years now – from greater opportunities for genomic screening and profiling for patients, to reviewing the evidentiary standards when it comes to rare cancer clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases,” Ms Cockburn stated.
“The issues have been established and are well understood. We need action. We eagerly await the Government’s response to the Senate Inquiry; patients can’t afford to wait any longer.”
As part of Rare Cancers Awareness Day, Professor David Thomas, renowned for his significant contribution to rare cancer research and precision oncologythe study, diagnosis and treatment of cancer, will address the public health crisis in Australian cancer care for those battling RLC cancers. Politicians are also encouraged to don ‘Rare’ pins on the day in solidarity with the RLC cancer community.
Rare Cancers Australia will also be selling limited edition ‘Rare’ hoodies, available in a range of colours with a limited-edition fingerprint design.
Pledge your support this Rare Cancers Australia Day to raise awareness about rare cancers and the stories of people living with them, like Patricia. Visit www.rarecancers.org.au/pledge for more information.
ENDS
Media Contact
Alicia Ballesty, Head of Strategic Communications
Rare Cancers Australia
M: 0499880742
About Rare Cancers Australia
Rare Cancers Australia (RCA) is a charity whose mission is to improve the lives and health outcomes of Australians living with rare, less common (RLC) and complex cancers. RCA believes that no Australian should have to go through their cancer journeywhat a person experiences/lives from the time they think they have cancer alone, which is why RCA provides 360-degree personalised support and navigation to patients and their loved ones. For more information, and support, please visit www.rarecancers.org.au
References
- Rare Cancers Australia. Why Rare Cancer Patients Need Our Support. Available at: https://www.rarecancers.org.au/page/158/why-rare-cancer-patients-need-our-support#:~:text=Approximately%2052%2C000%20Australians%20are%20diagnosed,half%20of%20all%20cancer%20deaths. Date Accessed: June 2024
- Breast cancer in Australia statistics. Cancer Australia. Available at: https://www.canceraustralia.gov.au/cancer-types/breast-cancer/statistics. Date Accessed: June 2024
- Prostatea walnut-shaped gland in the male reproductive system that is responsible for producing semen - a bodily fluid that acts as a vessel for sperm transport during ejaculation cancer in Australia statistics. Cancer Australia. Available at: https://www.canceraustralia.gov.au/cancer-types/prostate-cancer/statistics. Date Accessed: June 2024
- Australian Institute of Health and Welfare. Cancer data in Australia. Available at: https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/overview-of-cancer-in-australia-2023. Date Accessed: June 2024.