‼️Tomorrow is the day.
No one knows how many people are living with metastatic breast cancer, not just in Australia, but around the world - something that BCNA has been advocating to change for over 27 years. Together, we acknowledge the missing link and everyone who has waited to be counted. Tomorrow, we make it count. For too long, a community has been living in the shadows, their experiences missing from our national data. BCNA has been fighting to change that. Change begins tomorrow.November 27th is almost here..... 🥳🥳
Metastatic breast cancer (MBC) is treatable but incurable. No one knows how many people are living with MBC not just in Australia, but around the world, something that BCNA has been advocating to change. "Our advocacy over the last three years has focused on counting those living with metastatic breast cancer (MBC) and our attention and determination has led to this defining moment. Through strong collaboration with governments, researchers, data experts, and consumer advocates, we have achieved what once seemed impossible - visibility for people living with MBC in our national data systems. This outcome is the result of the collective strength of a sector determined to transform invisibility into insight, and insight into influence. " - Vicki Durston, Director of Policy & Advocacy BCNA 📝The successful reporting of national metastatic breast cancer data marks a significant step forward in Australia’s commitment to improving cancer outcomes. It demonstrates how far we have come in recognising and responding to the needs of people living with metastatic disease. Stay tuned to find out the numbers on November 27th....let's make metastatic breast cancer count. 👉Learn more about MBC with our Upfront about breast cancer podcast episodeNovember 27 🚨 Big News Coming! 🚨Counting Metastatic Breast Cancer
In 2022, BCNA began the Making Metastatic Breast Cancer Count initiative - a vital step toward ensuring every person living with metastatic breast cancer is counted and supported. After years of advocacy, collaboration, and research, we’re thrilled to announce that on November 27, we will finally share the outcome of this groundbreaking work. This is more than just numbers - this is a long awaited step in the right direction towards visibility, equity, and driving change for thousands of Australians living with metastatic breast cancer. 📖 Learn more about the journey: 🔗 Time to Count: A Way Forward 🔗 Our Pledge 🎉 Get ready for the big announcement on November 27! Together, we’re making metastatic breast cancer count. 💖
Living with metastatic breast cancer in QLD?
Good afternoon, I hope this message finds you well. We're looking for individuals living with metastatic breast cancer (MBC) in Qld who may wish to participate or share a quote for a BCNA press release surrounding MBC advocacy. If you are interested please comments on this discussion or send an email to BCNA's Policy and Support Services Media and Communications Specialist: Edwina Pearse, at EPearse@bcna.org.au by Wednesday 4 2025. More details about this engagement can be provided for those who enquire.BCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data
A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced over the weekend by Prime Minister Anthony Albanese to fund a cancer data alliance. Almost two years ago a group of Breast Cancer Network Australia (BCNA) consumer representatives living with metastatic breast cancer told us they feel invisible. They wanted to be made visible by being counted properly on all our cancer registries across Australia. Currently this data is not consistently collected across all states and territories. Last November BCNA launched the roadmap to address the lack of national cancer data for those living with MBC at Parliament House, Canberra. The roadmap was the result of a roundtable that saw experts from across the sector work towards recommendations to improve Australia’s cancer data, which aligns with one of the priorities of the first Australian Cancer Plan, launched last year. BCNA Director Policy Advocacy & Support Services, Vicki Durston acknowledged everyone who had come together to make this roadmap a reality, including the late Peta Murphy MP who stood with BCNA for many years to have people with MBC made visible through national data collection. “She would have been so incredibly proud that we are now closer to ensuring that the many thousands of invisible Australians with metastatic breast cancer will no longer be hidden in plain sight,” Ms Durston said. “We know that cancer sectors in other countries around the world are watching Australia, this is our chance to build on progress being made and to become a world leader in health data.” This $1.5 million funding to the Australian Institute of Health and Welfare will ensure the formation of an Australian Cancer Data Alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. “This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said. “How can we possibly support this population living with metastatic disease and meet their needs when we don’t know how many people in Australia are living with metastatic breast cancer? “Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.” BCNA has been calling for improvements to Australia’s cancer data since 1998 and will today mark this key milestone alongside all those with a lived experience of cancer and their advocates. Read BCNA’s report Time to Count People with Metastatic Breast Cancer – A Way ForwardPharmaceutical Benefits Advisory Committee (PBAC) - Enhertu for HER2-low Metastatic Breast Cancer
The Pharmaceutical Benefits Advisory Committee (PBAC) has recommended the drug Enhertu (trastuzumab deruxtecan) for people with HER2-low metastatic breast cancer (MBC) to be subsidised on the Pharmaceutical Benefits Scheme (PBS). We now call on the Australian Government to work with the pharmaceutical company to list Enhertu on the PBS as quickly as possible, to save people thousands of dollars. BCNA also urges AstraZeneca to reduce the cost of its Patient Access Program for Enhertu whilst we await PBS listing, to ensure as many people as possible can access this life-prolonging dug. Sarah (pictured), who was diagnosed with metastatic breast cancer in 2017 at the age of 41, has spent over $200,000 on Enhertu privately until she recently became eligible for the patient access program. “[Enhertu means that] my children will have a mum who loves them unconditionally – for longer. My husband will have a wife – the love of his life – for longer.” If you have any questions about Enhertu we encourage you to speak to your treating team. Read further details via the link https://www.bcna.org.au/media-releases/enhertu-recommended-for-pbs-subsidy-but-it-is-not-time-to-celebrate/
Article from USA re patient advocacy & metastatic bc
Thought this article was topical given some of the issues expressed on recent threads. Patient centred care and engagement with consumers to inform practice, research and priorities is the way ahead to create better outcomes for all. Best wishes to everyone for festive season. 🎄🌈 https://www.npr.org/sections/health-shots/2018/12/16/676809440/commentary-how-patients-have-transformed-a-medical-meeting-about-breast-cancer ;
