Rare Cancers Australia

Any cancer diagnosis can come with financial implications, as medical expenses are coupled with a reduced ability to work. But for people diagnosed with a rare cancer, the impact can be even more profound. Reaching a diagnosis can take multiple trips to the doctor and specialists, numerous tests and often, costs that are not subsidised. Treatment options can be limited, with many people self-funding to access off-label medicines. And with specialists and treatments often centralised, travel and accommodation costs can quickly add up too. In fact, about a third of people who contact our patient support team mention financial stress in their first call. Families can face difficult decisions, like accessing superannuation early to fund treatment now, or saving the money to provide financial stability in the future. Read more about how we can create a more equitable future for people with rare cancers in our report, A Rare Cancer Moonshot: Equity for everyone with cancer: https://bit.ly/3AM3nG4

The rare cancer community is greatly encouraged by this significant news for Von Hippel-Lindau patients! Just over a month ago, we were proud to support NeuroEndocrine Cancer Australia at their event in Parliament House, making the urgent need for the approval of Belzutifan through the PBS an issue on the radar of policy makers. This past week, we have seen a recommendation from PBAC for Belzutifan to be listed on the PBS and made more accessible to patients in Australia. We hope to see this life saving drug listed soon!

When you’re thrown into the world of rare cancers, it can feel like you need to learn a new language. Here are some important terms that may come up after treatment. You can find more plain English descriptions of all things rare cancer in our Rare Cancer Support Guide. Download your free copy: https://bit.ly/3VD9C47 #RCSG #youarenotalone

Anil was shocked when some numbness that came and went on the side of his face turned out to be a rare brain cancer. Diagnosed with Unmethylated Glioblastoma, Anil and his son started researching options, alongside his treating team. One, a non-invasive treatment called Optune, has not yet been launched in Australia but has been effective overseas. However, to access the treatment in the US will cost Anil’s family around $32,000 per month. He’s pouring all his resources into accessing the treatment, but needs help to cover the staggering costs. Read more and support Anil at: https://bit.ly/46Vbig9

Registrations are open for the 2024 Melanoma and Skin Cancer Trials Annual Scientific Meeting. It’s being held in Sydney on 24 October, featuring two keynote speakers, 17 melanoma and skin cancer clinical trial experts and six consumers sharing their unique perspectives. Download the program or register to attend at: https://lnkd.in/gcsAm4wB

Achieving a Rare Cancer Moonshot will be a collaborative effort. It needs strategic investment, policy reform, and collective action. Our latest report, A Rare Cancer Moonshot: Equity for everyone with cancer, highlights six priority areas that work within and push further on the Australian Cancer Plan and state cancer plans: 🧪 early detection and timely diagnosis 💰 affordable access to comprehensive personalised medicine 💊 equitable access to subsidised treatment and clinical trials 🫶 specialised care and holistic support 📊 complete and representative data 👨⚕️ rapid translation of research into clinical practice. Together, we can make a difference as we strive for more than 90% five-year survival for all types of cancer. Read the report at: https://bit.ly/3yGInQm

We asked people who have been diagnosed with rare cancers what a better world for rare would look like to them. Their answers provided a powerful opening to CanForum 2024 and reminded us all of the work to be done to provide equitable experiences for everyone diagnosed with cancer. In case you missed it, here’s what they had to say.

Thank you to everyone who joined us in Canberra or online for CanForum 2024 as we launched our Rare Cancer Moonshot 🚀 It was a day that had it all: 💡 inspiring stories about advances in treatments, personalised medicine and improving outcomes for Aboriginal and Torres Strait Islander people and children 💛 insights into the lived experience of our incredible patient advocates, who generously share their stories to help make a difference for others 👩🎨 a talented graphic recorder, Sarah Firth, capturing the day’s concepts in live illustrations 🤝 a visit from the Minister for Health and Aged Care, the Hon Mark Butler MP, and the Shadow Minister for Health and Aged Care, Senator the Hon Anne Ruston 📚 the launch of our new report, A Rare Cancer Moonshot: Equity for everyone with cancer. Read the report at: https://bit.ly/4dB8FCn and we look forward to working with everyone in our community to make our Rare Cancer Moonshot a reality.

Thank you to everyone who attended Canforum24 and for contributing to our Rare Cancer Moonshot. Rare Cancers Australia would like to acknowledge our Canforum24 sponsors and partnering organisations, whose support made this annual flagship advocacy event possible. Special acknowledgement goes to: AbbVie, Astellas Pharma, AstraZeneca, Bristol Myers Squibb, Boehringer Ingelheim, Cancer Australia, Canteen Australia, Children's Cancer Institute, Australian Government Department of Health and Aged Care, Gilead Sciences, GSK, Heng & Hurst, Hunter Medical Research Institute (HMRI), Ipsen, Johnson & Johnson, Medison Pharma, MENARINI Group, Melanoma Institute Australia, MSD, NACCHO Australia, University of Newcastle, Novartis, Omico, patterntwo, Pfizer, Pink Hope, Power Creative; amplified videos and events, QUT (Queensland University of Technology), Roche, Sanofi, Servier, Specialised Therapeutics , Takeda and Telethon Kids Institute.

The countdown is on. Don’t miss the final session of CanForum 2024. Hear from patient advocate Emily Lahey, learn more about the hope offered by genomics and get a better understanding of health workforce needs. Tune into the live stream at: https://bit.ly/3YRenvE