⭐ How Australia Built Its First National MBC Estimate
Last week, I had the honour of announcing the outcome of BCNA's 3-year project, as the technical report underpinning Australia’s first national estimate of metastatic breast cancer was released. This milestone was delivered through a national collaboration between AIHW, Cancer Australia, the Department of Health, the Australian Cancer Data Alliance, state and territory cancer registries, data leaders in NSW, Victoria and Queensland, and BCNA. Using “new innovative methods”, the report found that “approximately 20,800 Australian women and an estimated 150 Australian men were living with metastatic breast cancer in 2024.” This work addresses a long-standing gap, with “Australia’s cancer data system currently fragmented” and most state and territory cancer registries not reporting stage at diagnosis unable to record whether a cancer has relapsed or recurred to metastatic. 🔍 How the estimate was created. The technical report highlights several key developments: “the development at AIHW of the national linked cancer and treatment analysis asset (CaT-Link)” “development of a counting method and estimates for NSW by the CINSW and associated researchers” “estimated MBC prevalence in Queensland and Victoria by CAQ & CCV” “counts for three states… which cover a large proportion of the Australian population” These inputs enabled AIHW “to estimate national prevalence, as well as indicative estimates for each state and territory.” 🔭 What’s next? Phase 2 will “rely on the use of soon to be available linked data” through the National Health Data Hub to produce “more complete and reliable estimates and analyses for specific populations.” This national estimate is the first step in delivering the vision set out in BCNA’s 2023 roadmap delivered to government , Cancer Australia’s Australian Cancer Plan, and the National Cancer Data Framework. The priority now is to call for deepened jurisdictional and state data. We want researchers, industry, governments and policymakers using this evidence immediately to drive planning, investment and reform. 👉 I've attached the two important reports for you below. Give them a read and comment below what stood out the most for you 💬 AIHW report : https://lnkd.in/gKMAnqpY BCNA From Invisibility to Influence: Progress on MBC data reforms in Australia: https://lnkd.in/gngYrngy20,950 pledges for 20,950 Australian living with metastatic breast cancer
For the first time, data shows that 20,950 Australians (20,800 women and 150 men) are living with metastatic breast cancer (MBC). This figure is double previous estimates and exposes the scale of need and urgency for health system reform. ✨ Being counted is fundamental to being cared for ✨ The Hon Mark Butler MP, Minister for Health & Ageing, says the national estimate marks an important milestone in Australia’s cancer data reform and visibility for people living with metastatic breast cancer. Whilst we celebrate this extraordinary national milestone, we will not stop here - our work continues. This first national estimate has given Australia long-overdue clarity, but sustained visibility now depends on every state and territory playing its part. With the recent launch of Cancer Australia’s national data framework, the time is right to strengthen our cancer data systems and ensure they reflect the realities of people living with metastatic disease. 📣 BCNA is calling on all Australians to show their support for people living with metastatic breast cancer by urging state and territory governments to invest in their cancer data registries to ensure this population is counted in our health system. We’re collecting 20,950 pledges for the 20,950 Australians living with metastatic breast cancer. 📝Visit bcna.org.au to show your support and sign the Together We Count pledge today.📣 20,950 Australians.
After 27 years of BCNA advocacy, we've reached a milestone moment: For the first time, Australia has a national figure for people living with metastatic breast cancer (MBC). That number is 20,950 Australians. These are people with unique, long-term needs who, until now, have been invisible in our health data and largely overlooked in health system planning. On 27 November, we officially announced this landmark data alongside our report; 👉 From invisibility to influence: progress on MBC data reforms in Australia. Together, we can ensure this data translates into meaningful change. People with MBC deserve a health system that sees them, plans for them, and supports them to live longer and live well. This data gives us the foundation to make that happen - but only if we maintain the momentum. What can you do? Sign BCNA's pledge calling for investment in ongoing MBC data collection in all states and territories. 👉 Sign the pledge today 📞 For further support or questions about this announcement, call our Helpline on 1800 500 258 Monday-Friday 9am-5pm AEDT‼️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.‼️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 episode📣 BreastScreen progress has flatlined. BCNA’s response to AIHW data.
Breast Cancer Network Australia (BCNA) is calling on the Federal Government to immediately action recommended reforms to the national BreastScreen program. The newly released BreastScreen Australia Monitoring Report 2025 reveals a disappointing 2% increase in participation between 2021–22 and 2023–24. “Yes, more women are being screened — but that’s because there are more women, not because the program is performing better.” Says Vicki Durston, BCNA’s Director or Policy, Advocacy and Support Services BCNA is calling for urgent reform: ✅ Risk-based screening ✅ Breast density reporting ✅ AI & innovation investment ✅ National consistency ✅ Equity for Indigenous women BCNA says women and families cannot wait any longer for an effective, modern breast screening program and is calling for urgent action. Read BCNA’s full response at https://www.bcna.org.au/media-releases/breastscreen-progress-has-flatlined-bcna-responds-to-aihw-data/BCNA responds to GP breast density guidelines.
Breast Cancer Network Australia (BCNA) welcomes today’s release of national clinical guidance to support GPs in managing and advising women with high breast density. 🩺 This new GP guidance accompanies the national move toward breast density notification, and BCNA strongly supports all BreastScreen programs informing women of their breast density as a minimum standard. Women have a right to this information, and today’s guidance provides GPs with clear, evidence-based pathways to support decision-making, risk assessment and referral to appropriate imaging where clinically indicated. ✨ Breast density is one element of breast cancer risk and must be considered alongside family history, genetics, previous breast conditions, lifestyle factors, and overall personal risk. This comprehensive guideline gives GPs the tools they need to confidently assess risk and discuss supplemental screening options with women who may require further imaging. 🫶 BCNA also welcomes the collaborative approach taken by BreastScreen Australia and acknowledges the inclusion of lived experience in shaping these guidelines. Ensuring consumer voices were part of the development process strengthens the guidance and ensures it reflects the real needs and concerns of women. 📣 We now call for strong promotion, education and dissemination of this guidance — particularly in rural and regional communities — to ensure equity of access to information and screening options for all women, regardless of where they live. BCNA will continue to advocate for clear communication, consistent national practice, and equitable access to screening and follow-up imaging for every Australian affected by breast cancer 🗨️ Quote from Vicki Durston, Director, Policy, Advocacy & Support Services, BCNA: “We welcome these guidelines which give GPs clear direction on managing breast density and associated risk. We commend BreastScreen Australia for this comprehensive work and for embedding consumer perspectives. We now need strong national promotion so GPs can easily access this guidance, and we urge states that have not prioritised breast density notification to act to prevent widening inequities.” 🗨️ Quote from BCNA Consumer Representative, Krysty Sullivan: “My cancer was hidden by dense breast tissue, and I know how dangerous that can be. Mammograms are essential for all women over 40, but women with dense breasts may need additional screening. These new GP guidelines are a significant step to help women understand their risks and access extra screening that could save their lives. I’m proud to have been one of the BCNA Consumer Representatives working alongside experts to help shape them, but cost and access will still hold too many women back. Early detection shouldn’t depend on where you live or what you can afford. My cancer was found late; these guidelines can help ensure other women find theirs sooner. We urgently need the states and territories that are not yet reporting breast density to start.”November 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. 💖November 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. 💖
