💊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🗣️Help keep metastatic breast cancer on the national agenda
As we continue to push for change to ensure that people living with metastatic breast cancer are counted in Australia’s cancer registries, we’d love your input through a short survey. The survey asks you to share: - The top three challenges you face living with MBC - A time when you’ve felt invisible Your experiences will help inform an upcoming advocacy campaign. The survey is open until 11.59pm Tuesday 28th October. Take the short survey (5-10 minutes) - complete the survey here This work is vital to making sure you are visible in the data that drives cancer policy, funding and services. Thank you for continuing to be part of this important work, together we can make sure that people living with metastatic breast cancer are seen, supported and counted. If you have any questions, please contact us at livedexperience@bcna.org.au
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 visibility📢 Capivasertib (Truqap) to be listed on the PBS!
The Australian Government has announced that as of 1 October capivasertib (Truqap) will be listed on the Pharmacetucial Benefits Scheme (PBS), providing another vital option for Australians with HR+/HER2- metastatic breast cancer. This means more equitable access to a treatment that previously cost over $98,000. This decision addresses an urgent need for effective treatments and provides another vital option for patients when their cancer has developed resistance to existing therapies. BCNA remains committed to fighting for equitable access to innovative treatments and supporting those living with metastatic breast cancer through every step of their journey. Read more about the announcement at https://www.bcna.org.au/latest-news/bcna-news/government-announce-access-to-capivasertib-truqap-another-option-for-those-living-with-metastatic-breast-cancer/🗣️ Share your views: Finding My Way Advanced+
Finding My Way-Advanced was one of the first self-guided web-based programs designed to improve wellbeing for people with metastatic breast cancer. Flinders University are now seeking participants to take part in Finding My Way-Advanced+, which aims to test whether adding human support and/or guidance to Finding My Way-Advanced, improves how much people use, and benefit from, the program. The aim is to find out whether guidance improves engagement with the program and outcomes, such as quality of life and distress, and if this differs by whether people received guidance via email, phone-call, or video-call. Recruitment is open for 12 months, with the closing date expected to be mid-2026. You can particpate in this program if you are a person who has been diagnosed with metastatic breast cancer. If you are interested, simply complete the following baseline survey and the researchers will be in contact with you shortly; https://redcap.link/findingmywayadvancedplus.Friday 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 visibility
