💬 Access to treatment matters - an update on Tucatinib
Right now, hundreds of Australian women with HER-2 positive breast cancer are stuck in limbo, denied affordable access to a life-extending drug, Tucatinib. Tucatinib has been approved for listing on the Pharmaceutical Benefits Scheme (PBS) by our own government, and is easily available for women in other countries. Despite the urgency, negotiations between Pfizer and the Australian Government have stalled, denying Australian women affordable access, and they're running out of time. It’s a trend we’re seeing more often with other drugs and health concerns: delay tactics from big pharmaceutical companies and lack of leadership from the Australian Government. All the while, it’s the patients who suffer. We won’t stop fighting for these women to live a better quality of life and have more time with their families while they still can. Vicki Durston, BCNA’s Director of Policy, Advocacy and Support Services, explains how our system is failing women with metastatic breast cancer and that we must address the growing threat to medicine access caused by big pharma stalemates. Read more about this and how it affects Australians like Georgie Cooper, 46 years old with 3 teenagers living in Melbourne who has been navigating metastatic breast cancer for eight years.🎉🏃♀️Celebrating Sarah’s incredible marathon milestone!
We love sharing moments of strength, joy, and achievement from within our community, and today we are celebrating some truly wonderful news from Sarah, one of our Consumer Representatives. This week, Sarah completed the London Marathon, an extraordinary achievement at any time, and even more remarkable while living with metastatic breast cancer. Covering 40 kilometres through some of London’s most iconic sights, Sarah described the day as “big” in every sense. From Big Ben to the Tower Bridge and a powerful finish down The Mall, it was a marathon filled with determination, challenge, and unforgettable moments. Like many long distance runners, Sarah experienced highs and lows along the course. She started strong, slowed to soak up the atmosphere, and faced the infamous wall later in the race. With grit and resolve, she regrouped, kept moving forward, and finished strong, supported by the cheers of the crowd and the encouragement of loved ones along the way. What makes this milestone especially meaningful is the reflection Sarah shared afterwards. For the first time, she embraced that being “awesome” is not about times or performance, but about showing up, persevering, and doing something extraordinary simply by being there. Only a small percentage of people ever complete a marathon. Fewer still complete more than one. And the number of people who have completed 13 marathons while living with metastatic breast cancer is incredibly small. That makes this achievement not just impressive, but deeply inspiring. Sarah also shared how powerful it was to see the stories of others running for loved ones, causes, and personal reasons. A reminder of how sport, movement, and community can connect us and lift us up in unexpected ways. We are so grateful to Sarah for being willing to share her experience with our community. Stories like this remind us that there is no one way to live with metastatic breast cancer, and that moments of strength, pride, and joy still matter. 💪 Congratulations Sarah!💊Advocacy Update: Standing Strong for Access to Tucatinib
We wanted to share an important update on BCNA’s advocacy for tucatinib, a targeted therapy used to treat HER2‑positive metastatic breast cancer. 📍 Where things currently stand While tucatinib has received a positive PBAC recommendation, talks to secure its listing on the PBS have stalled, particularly around pricing between the Australian Government and Pfizer. In the meantime, the current cost to patients is around $64,000, creating significant financial barriers and uncertainty for those who need it. 🔥 Advocacy momentum is building Momentum in BCNA’s advocacy continues to build, with strong media engagement helping to raise awareness, including an article in The Australian, coordinated activity across BCNA’s Instagram, Facebook and LinkedIn channels, and a radio interview on ABC Melbourne. Each of these moments helps keep tucatinib access firmly on the public and policy agenda. 🤝 What comes next Behind the scenes, we are actively progressing advocacy with both government and Pfizer, and a number of potential pathways are being explored to address this. We remain focused on keeping pressure on Pfizer and decision-makers while also identifying any interim options. We’ll continue to keep you informed as things progress and will reach out if there are any specific actions we’d like your support with.
⭐ 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
Metastatic Breast Cancer Awareness Day
On this Metastatic Breast Cancer Awareness Day, we acknowledge that Metastatic Breast Cancer (MBC) is treatable but incurable. Katie shares what she wants others to know about living with MBC and her message for other young women. Watch the full video here BCNA has information and resources for those living with MBC. Read more about our latest international MBC advocacy efforts here: Count Us In. From Australia to the world: Leading the push for global metastatic breast cancer visibilityFriday Update - 1st August 2025
Hello and welcome to our Friday Update! Whether you’re new to the BCNA Online Network or a long-time member, we’re so glad you’re here. This safe space built on connection, understanding, and shared experience. Last month, we’ve seen powerful conversations, and practical advice shared across the community. From navigating treatment side effects to finding emotional support, your contributions continue to make this network a safe and empowering place for all. If you’re just joining us, we encourage you to explore the forums Get started here introduce yourself, or simply read along. And if you’ve been with us for a while, thank you for continuing to support others. 💬 Trending Online Network Discussions – July 2025 Bone and join pain side effects of chemotherapy Offering practical advice and emotional support for those newly starting chemotherapy treatment. From bad to worse, but getting better. Metastatic breast cancer (MBC) after previously having early-stage cancer. Kindly sharing story with the community, sparking conversation and shared experiences. Implant or Autologous Flap? Exploring reconstruction options post-mastectomy, with members sharing their experiences with implants versus DIEP flap procedures. WHO do I tell? Emotional challenges of disclosing diagnosis to loved ones. Members sharing advice on navigating conversations with family and friends. Letting go of blame - WHY did I get cancer? Inspired by a BCNA podcast, this discussion sparks meaningful dialogue about emotional healing and self-compassion. 🌟 BCNA Highlights – July 2025 Expanding the ‘Seat At The Table’ Program BCNA continued to grow its internationally recognised Consumer Representative Program Seat at the Table program , empowering people with lived experience to influence cancer research, policy, and care. This initiative ensures that real voices shape decisions that affect breast cancer patients nationwide. BCNA Consumer Representative Kym shares what she thinks Do you think it’s important that those with lived experience are involved in research? Global Advocacy for Metastatic Breast Cancer BCNA joined forces with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada) at the Australian High Commission in London to launch a joint advocacy pledge. The united call to action urges governments and health systems worldwide to count and recognise people living with metastatic breast cancer; a critical step toward improving care, visibility, and support. Watch Together for visibility, equity, and support! Exciting News! BCNA is proud to welcome Red Energy as our inaugural Principal Partner. This partnership marks a significant milestone in our mission to support all Australians affected by breast cancer. Together, we’re powering hope, connection, and change. Stay tuned for more on how this collaboration will make a meaningful impact. Male Breast Cancer Awareness In November 2024, Martin noticed signs that something was wrong with his health. Read his story via the link Humbled by the love and support 📅 BCNA Events BCNA Pink Lady Match – Sunday 10 August 2025 Join BCNA and major partner Red Energy at the Melbourne Cricket Ground (MCG) as the Melbourne Demons take on the Western Bulldogs in support of Australians affected by breast cancer. Watch video Pink Lady Match is back, and tickets are on sale now Event Schedule 1:30 PM – BCNA Tribute Field opens in Yarra Park 1:30 PM – BCNA merchandise available outside Gate 1 and between Gates 5–6 2:00 PM – MCG gates open; attendees take seats for entertainment and pre-match ceremony 3:00 PM – Players enter the field 3:20 PM – Match begins Carman’s Fun Run Sydney– Sunday 21 September 2025 🏃♀️ Location: Metcalfe Park, Pyrmont, Sydney Time: 6:00 AM – 1:00 PM AEDT Event Options Half Marathon (21.1K) – Wave A: 7:15 AM | Wave B: 7:20 AM 10K & 5K Runs – Waves start from 9:00 AM Pink Lady 5K Walk – Starts at 10:15 AM Read more and register via the link Carman’s Fun Run 2025 - Sydney That’s a Wrap! Thank you for joining us for another month of connection, support, and shared strength in the BCNA Online Network. If you have any questions, concerns, or feedback, please don’t hesitate to reach out to our moderators via BCNA_Mod or email helpline@bcna.org.au . We’re here to help and always happy to hear from you. Until next time, take care and stay connected! BCNA_Mod TeamCount Us In. From Australia to the world: Leading the push for global metastatic breast cancer visibility
BCNA has teamed up with global partners to launch a powerful new pledge calling for visibility and support for people living with metastatic breast cancer (MBC). The message? Just because MBC is incurable doesn’t mean people should be invisible. This global push—unveiled at Australia House in London—brings together voices from Australia, the UK, and Canada, demanding better data, recognition, and care for those living with MBC. It’s a bold step toward making sure no one is left out of the picture when it comes to cancer care. Read the full media release via the link Count Us In. From Australia to the world: Leading the push for global metastatic breast cancer visibilityFinally counted: A milestone for Victorians living with metastatic breast cancer
For the first time, Victoria has counted everyone living with metastatic breast cancer in the state, marking a major step forward for visibility, recognition, and support. New data released by the Victorian Cancer Registry (VCR) estimates that 4,461 Victorians are living with metastatic breast cancer, making them visible in the health system and ensuring their needs can are not overlooked. This achievement is the result of decades of consumer-led advocacy by Breast Cancer Network Australia (BCNA), collaboration with the Victorian Cancer Registry and Cancer Council Victoria, and the determination of women living with metastatic breast cancer who have long called for change. Read more via the link Finally counted: A milestone for Victorians living with metastatic breast cancer
