We want to hear your Whole Story 🩷
If you've been affected by breast cancer, we'd love you to share the part of your experience you wish more people understood using #TheWholeStory on social media. By sharing more of these experiences, together we can broaden people's understanding of breast cancer, give greater visibility to what too often goes unseen or unspoken, and strengthen our collective voice as we work towards a future with no life limited by breast cancer. 👉 Share your #thewholestory on instagram here In 15-30 seconds, share #TheWholeStory from your perspective on your own social media channels, and don't forget to tag @breastcancernetworkaustralia and #thewholestory so we can help amplify your voice. 🩷
Policy & Advocacy Update - Vicki Durston - August26
Hi everyone, As BCNA begins planning our next Policy & Advocacy Strategy, I wanted to share some important updates about the work we're doing to ensure the voices of Australians affected by breast cancer continue to drive change. Help Shape BCNA's Future Advocacy Priorities 💗 At BCNA, our advocacy starts with listening. We've recently launched a national survey, in collaboration with Deakin University, to help inform BCNA's next Policy & Advocacy Strategy. This is your opportunity to tell us what matters most to you and where you believe BCNA should focus its advocacy efforts over the next four years. Whether you're newly diagnosed, living with metastatic breast cancer, undergoing treatment, or years beyond diagnosis, your experiences and insights are invaluable. We're particularly keen to hear from a diverse range of people across Australia, including those living in regional and rural communities, people from different cultural backgrounds, and those with a variety of breast cancer experiences. 👉 Access the survey and have your say here Your feedback will help us understand: What's working well Where gaps remain The challenges people continue to face Where BCNA can have the greatest impact The survey takes approximately 15 to 20 minutes to complete and closes on 26 August 2026. Every response helps strengthen BCNA's consumer-led advocacy and ensures our future priorities reflect the real needs of our community. If you haven't already, I encourage you to take part and share the survey with others affected by breast cancer who may wish to contribute. Taking Breast Cancer Issues to Parliament House 🏛️ Advocacy often happens behind the scenes, but it's a vital part of BCNA's work. Recently, BCNA met with federal parliamentarians in Canberra to ensure the experiences and priorities of people affected by breast cancer continue to be heard at the highest levels of government. These discussions focused on several key issues, including: Access to breast cancer medicines and treatments Breast screening reform Support for people living with metastatic breast cancer Challenges facing people affected by breast cancer across Australia Meetings like these help us build relationships with decision-makers and keep consumer experiences front and centre in policy discussions. While meaningful change can take time, ongoing engagement with government is essential to progressing reforms that improve outcomes and experiences for people affected by breast cancer. As the national voice for Australians affected by breast cancer, BCNA will continue advocating for the issues that matter most to our community. Progress Towards a Sustainable Option for Zoladex patients 💊 Our continued advocacy, including in Canberra has led to an important development in securing a sustainable monthly ovarian suppression option ahead of the planned delisting of Zoladex® 3.6mg from the PBS on 1 November 2026. At a recent out-of-session meeting, the Pharmaceutical Benefits Advisory Committee (PBAC) recommended triptorelin (Diphereline®) 3.75mg for PBS listing for breast cancer. While government approval and final listing arrangements are still required, this recommendation is a positive step towards maintaining access to a monthly ovarian suppression treatment through the PBS. For many people with hormone receptor-positive breast cancer, ovarian suppression is an important part of treatment. The planned withdrawal of Zoladex 3.6mg has understandably created uncertainty for those who rely on monthly treatment. Since the withdrawal was announced, BCNA has worked closely with consumers, clinicians, government and industry to help identify a sustainable alternative. As part of the our breast cancer discussions with Parliemnt House, we also convened an urgent national roundtable to ensure the concerns and experiences of those affected were heard directly by decision-makers. This recommendation reflects the collective efforts of consumers, clinicians and the broader breast cancer community. BCNA will continue advocating on this issue and provide updates as PBS listing and supply arrangements are confirmed. BreastScreen Australia Review: Positive Progress, But Funding Matters 🎗️ BCNA has welcomed the release of the long-awaited BreastScreen Australia Review and the agreement by Australian governments on a new National Strategic Framework to guide the future of the program. The review recognises BreastScreen Australia as a trusted and effective program that saves lives through early detection. It also identifies opportunities to improve participation, strengthen quality and safety, reduce inequities, and modernise the program. We're pleased to see commitments to begin work on: A national annual screening policy A National Participation Strategy Improvements to quality and safety These are positive steps forward. However, BCNA remains concerned that the funding announced to support reform does not yet match the scale of the changes identified in the review. For many communities, including Aboriginal and Torres Strait Islander women, culturally and linguistically diverse communities, and women living in regional and remote areas, barriers to screening continue to exist. BCNA will continue advocating for meaningful investment to ensure everyone can access high-quality breast screening services, regardless of where they live. As governments move from review to implementation, it's essential that consumer voices remain at the centre of the reform process. Lived experience must continue to help shape the future of breast screening in Australia. You can read more about BCNA's response to the review here: 🔗 https://www.bcna.org.au/latest-news/bcna-news/bcna-welcomes-breastscreen-review-warns-on-funding Thank You 🌸 Everything we achieve through advocacy is strengthened by the voices of people affected by breast cancer. Whether you're completing a survey, sharing your story, participating in consultations, or contributing here in the Online Network, you're helping shape a better future for our community. Thank you for your ongoing support and for helping ensure that lived experience remains at the heart of BCNA's advocacy work. Warm regards, Vicki Durston Policy & Advocacy Director Breast Cancer Network AustraliaPolicy & Advocacy Update - Vicki Durston - July26
📢 Policy & Advocacy Update: Medicines Access and Shaping BCNA's Future Advocacy Hi everyone, one of BCNA's most important advocacy priorities is ensuring people affected by breast cancer can access the treatments they need, when they need them. 💗 I wanted to share a brief update on some of the key work happening behind the scenes. 💉 Zoladex: Advocacy Continues Many of you will be aware of BCNA's ongoing advocacy regarding the planned discontinuation of the monthly 3.6mg formulation of Zoladex from 1 November 2026. While we've shared updates previously, we also know that for many people this news has raised very real concerns about what it means for their treatment, routine, and peace of mind. We've been hearing from community members who are worried about the personal and immediate impact of this change, and we want you to know that your concerns are being heard. BCNA remains actively engaged with consumers, clinicians, government and AstraZeneca to better understand the impact on patients and to advocate for practical, longer-term solutions. Our focus continues to be on continuity of care, clear communication, and ensuring treatment decisions are guided by clinical need and individual circumstances. If you have questions or are feeling uncertain about how these changes may affect you, please know that support is available. Our Helpline is here to listen, provide information, and connect you with appropriate resources on 1800 500 258. We're continuing to work behind the scenes on this issue and will keep the community informed as developments occur. Thank you to everyone who has shared their experiences and concerns—your voices play an important role in informing our advocacy. 🤝 ✅ PBS Listing for Perjeta There was welcome news recently with the PBS listing of Perjeta (pertuzumab) for eligible Australians with HER2-positive high-risk early breast cancer from 1 July 2026. This is a significant outcome that will improve access and reduce financial barriers for many Australians affected by breast cancer. 🎉 At the same time, the Perjeta journey highlights ongoing challenges within Australia's medicines access system. Although the medicine received a positive PBAC recommendation in March 2025, patients waited more than a year for PBS funding to be confirmed. Perjeta, alongside issues such as Zoladex, reinforces why medicines access remains a key BCNA advocacy priority. We believe people should be able to access recommended treatments as quickly and equitably as possible. 💪 🗣️ Help Shape BCNA's Future Advocacy BCNA is also beginning work on our next Policy & Advocacy Strategy, which will guide our advocacy priorities through to 2030. We're committed to ensuring this strategy is shaped by the lived experiences of people affected by breast cancer. Consumer representatives are already helping guide the development process, and over the coming months we'll be seeking feedback from consumers, clinicians and other stakeholders. Importantly, there will be opportunities for members of the Online Network to have their say through a survey that will be available later next month. The insights gathered will inform our Policy and Advocacy Strategy, guide our priorities and strengthen our efforts to improve equity and outcomes for all people affected by breast cancer. 🌟 Your experiences are at the heart of everything we do. As we look to the future, we want to ensure BCNA's advocacy continues to focus on the issues that matter most to our community and where we can make the greatest impact. Thank you for continuing to share your insights and experiences with us. Together, we're helping create a stronger voice for everyone affected by breast cancer. 💕📢 Perjeta is now listed on the PBS!✨
Breast Cancer Network Australia warmly welcomes the announcement that Perjeta (pertuzumab) will be listed on the Pharmaceutical Benefits Scheme (PBS) from today onwards, 1 July 2026 for eligible Australians with HER2-positive high-risk early breast cancer. For the approximately 2,500 Australians diagnosed each year who may benefit from this treatment, this is more than just a policy change. It’s a life-changing moment. The PBS listing will remove a significant financial barrier, making this important treatment far more accessible to those who need it most. 🙌💗 While this is a major step forward, it also shines a light on the ongoing challenges many Australians face when trying to access new and vital medicines as there are still too many life-saving breast cancer treatments not PBS listed. There is still more work to be done to ensure timely, equitable access for everyone. Today, we celebrate progress and continue to advocate for a future where no one is left behind. 💕 👉 Read more about Perjeta listing on the PBS herePolicy & Advocacy Update - Vicki Durston - June26
Zoladex, access and what this means for patients Hello everyone, I want to speak directly to you about the recent announcement from AstraZeneca to withdraw the monthly 3.6mg formulation of Zoladex from Australia. For many people, this is not just a medication. It is a critical part of treatment — used for ovarian suppression in breast cancer, for fertility preservation during chemotherapy, and for reducing the risk of early menopause in younger women. So when a treatment like this is removed — particularly without a clear, long-term pathway — it creates real uncertainty. What we are hearing We are hearing from both clinicians and people affected by breast cancer that this uncertainty is already influencing care. There are questions about switching treatments. Concerns about whether alternatives are appropriate. And of particular concern, we are hearing that some people are being advised to consider irreversible options, including surgical removal of the ovaries, because of uncertainty about ongoing access to a reliable monthly treatment. That is not where clinical decision-making should sit. Decisions about treatment should be based on evidence and what is right for the individual — not driven by uncertainty about access. What matters right now In a situation like this, it is critical that people feel informed and supported. That you have access to clear, reliable and up-to-date information as this situation evolves. And that you are able to make decisions about your care with confidence — alongside your treating team. What BCNA is doing We are actively working with government, clinicians and AstraZeneca to understand what comes next. This includes: advocating for a clear and reliable pathway for ongoing access following November 1st2026when this drug is no longer available on the PBS • working to identify an appropriate alternative monthly option • ensuring there is a smooth and clinically appropriate transition, where needed Our focus is on making sure that people are not left navigating uncertainty, and that continuity of care is protected. What we are seeing more broadly There has been significant coverage of this issue across both traditional and social media. We know that many people are already living with uncertainty in their diagnosis and treatment — and situations like this can understandably add to that concern. For some of you within our Online Network, this may feel particularly unsettling. Please know this: We will not stop advocating until there is a clear and sustainable resolution to this issue. We are continuing to work closely with government, clinicians and AstraZeneca to ensure there is a pathway forward that supports patients and protects continuity of care. We will keep you informed as this situation evolves. For the most up-to-date information, please continue to follow updates within the Online Network and on the BCNA website. Further information We also encourage you to watch our recent video with A/Professor Belinda Kiely, where we discuss this issue in more detail and outline what you can do to better understand your options and what is happening. A message to our community We understand the concern this is causing. And we will continue to stand beside you, advocate for you, and push for a solution that ensures people are not left uncertain about access to the treatment they need. Thank you for continuing to share your experiences and raise your voices.Policy & Advocacy Update - Vicki Durston - May26
I’m incredibly proud to have represented BCNA at the European Society for Medical Oncology (ESMO) Breast Cancer Congress this year. One of the most significant moments for BCNA at the Congress was presenting Australia’s first national estimate of people living with metastatic breast cancer. For the first time, we now have a clearer understanding that around 20,950 Australians are living with metastatic disease. This is a significant milestone and one that has been a long time coming. For many years, people living with metastatic breast cancer have not been counted and have been under represented in our systems. This has made it incredibly difficult for governments, researchers and healthcare providers to fully understand the scale of need, and to plan services, support and care appropriately. It has also meant that many people in our community have not felt fully seen or recognised. That is why this work matters so deeply. By using linked health data, BCNA has helped shine a light on people with metastatic breast cancer that have too often been invisible in the data. 📊 Sharing our approach at ESMO sparked strong interest from international audiences, with many recognising the importance of not just counting diagnoses, but recognising people living with ongoing disease. It was incredibly encouraging to see Australia acknowledged as a leader in this space. More importantly, it reinforced that our advocacy here at home is helping shape global conversations about how we better understand and support people living with metastatic breast cancer 🌍 But for me, this is about much more than data. It is about people. It is about ensuring that every person living with metastatic breast cancer is acknowledged within our health system, that their experiences are understood, and that their needs are not overlooked. It is about dignity, visibility, and making sure no one feels forgotten 🤝 Being able to carry your stories and your experiences into a global forum was something I did with great pride and responsibility. Moments like this show what is possible when we come together as a community and advocate for change. The discussions at ESMO reinforced how rapidly breast cancer treatment is evolving globally, particularly in precision medicine, biomarkers and targeted therapies. But they also highlighted the growing gap between what science can offer and what patients can actually access through health systems. For Australians living with breast cancer, these conversations matter. International forums like ESMO help shape advocacy here at home- supporting efforts to improve access to new treatments, ensure equitable care regardless of postcode, and better recognise and support the growing number of people living longer with metastatic breast cancer. 👉 You can see a glimpse of my time at the conference here: https://www.instagram.com/bcnapinklady/reel/DYRW8tJiFcf/ 💊Impacts of the 2026–27 Federal Budget While I was proud to represent our community internationally, I have also been reflecting closely on the 2026 to 2027 Federal Budget and what it means for people living with breast cancer here in Australia. There are positive elements, including continued investment in precision oncology and medical research. Advances in targeted therapies, genomics and personalised medicine are changing what is possible for people with breast cancer, and Australia must continue to invest in innovation and research. But innovation only matters if people can actually access it. One of BCNA's key concerns remains timely and affordable access to medicines, particularly the Pharmaceutical Benefits Scheme. Too often, Australians face delays in accessing new and potentially life-extending treatments that are already available in comparable countries. These are not abstract delays. They are real and they impact on people's lives and the precious time they have with their families and loved ones. Without meaningful reform and sustained investment, there is a real risk that Australia will fall behind internationally and that a two-tiered system will continue to emerge - where access to treatment depends on someone’s financial capacity rather than their clinical need. That is not acceptable. Access to the best available care should never be determined by postcode, income or circumstance. This is why BCNA continues to advocate so strongly in this space, including current work to improve access to treatments like tucatinib and Zoladex 💊 We will keep advocating for a system that is fair, responsive, and centred on people. I want you to know that this work is ongoing and that your voices are at the heart of it. Every story, every shared experience, and every conversation helps us strengthen our advocacy and drive change. At home and on the global stage, this is about one thing: making sure you are seen, heard and supported. BCNA will keep showing up, speaking out, and pushing for a system that delivers the care you deserve💪💊 Update: Changes to Ribociclib (Kisqali) Storage & Packaging
We wanted to share an important update for anyone currently taking ribociclib (Kisqali), a targeted therapy used for HR-positive, HER2-negative breast cancer (early or advanced), often alongside hormone therapy. 🔄What’s changed? From early May, ribociclib tablets no longer need to be stored in the fridge. They can now be kept at room temperature (below 30°C). 📦During the transition period Some packs will still have the old refrigeration instructions Others will reflect the new room temperature guidance You may notice changes to packaging, including: A longer expiry date (up to 24 months) Different blister pack sizes A new layout showing how many tablets to take each day 💡Why the change? The medication itself has not changed. Updates to manufacturing and packaging now allow the tablets to be stored safely at room temperature. Because of this transition, both “old” (refrigerated) and “new” packs will be in circulation for a while. ✅What do you need to do? Always follow the storage instructions on your specific pack If your pack says to refrigerate, continue to do so until it’s finished Don’t be concerned if packaging looks different, the medicine remains the same Speak to your healthcare team if you have any questions or concerns For more information check out the following resources 👉Early breast cancer 👉Metastatic breast cancer As always, we’re here to support you. If you’ve noticed these changes or want to share your experience, please call our Helpline on 1800 500 258 Monday-Friday 9am-5pm💬 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.
CEO Update - Kirsten Pilatti - May26
Hi everyone, I wanted to take a moment to check in with you all, the heart of this community. At BCNA, our purpose is grounded in being alongside people through every stage of breast cancer. Information, advocacy, and support are not separate strands of our work. They are woven together, and they are shaped by your voices, your questions, and your experiences. What you share here helps guide where we focus our energy and how we show up for the broader breast cancer community. Right now, we are seeing how powerful good information can be. Clear, trustworthy resources help people move through uncertainty with a little more confidence and a little less fear. That is why we continue to invest so heavily in evidence-based guidance, practical explanations, and support that meets people where they are, emotionally as well as medically. Over the past year, BCNA has been working across many fronts. We have continued to advocate for system wide change, while also strengthening day to day support for individuals and families. One of the most significant advocacy milestones recently was the Australian Senate passing legislation that bans life insurers from using genetic test results to discriminate against new policyholders 🎉. This is a major step forward. It means people can consider genetic testing and preventative care without the fear that this knowledge will be used against them when seeking life insurance. This outcome reflects years of advocacy and the courage of people who shared their stories to help drive change. We are also closely engaged in national conversations about breast screening reform. After attending the BreastScreen Australia Conference in Brisbane, and following recent commitments from the Commonwealth, we are encouraged to see momentum building. At the same time, we know that real reform must deliver equitable, accessible screening for everyone, regardless of where they live or their personal circumstances. We will continue to speak up clearly about what matters to our community and what needs to happen next 📣. Alongside this policy and advocacy work, we remain focused on what day to day life can look like when you are diagnosed with breast cancer. Many of you come to the Online Network with very practical questions. What should I do first after diagnosis? How can my GP support me alongside my specialist team? Why does food taste different during treatment? How do I look after my body when everything feels unfamiliar? These questions are deeply human, and they deserve thoughtful, compassionate answers. Caring for your physical wellbeing during treatment is one part of the bigger picture. Gentle movement that feels right for you, nourishing food when you can manage it, and asking for help when you need it are all acts of strength, not weakness 💞. Everyone’s experience is different, and comparison is rarely helpful. What matters is finding support that respects your body and your pace. I also want to acknowledge the role generosity plays in everything we do. Our 2025 Impact Report shows what is possible because of your support. Every program, event, resource, and advocacy win exists because people in this community believe in making things better for others 📘. That shared commitment continues to drive us forward. Most importantly, I want you to remember that BCNA is always here for you. Our Helpline is available whenever questions arise, whether they feel small, complicated, unclear, or overwhelming 📞. Our team is there to listen first, and then help guide you to information, services, or support that fits your needs. Reaching out can feel hard, but you never have to have the right words. Thank you for being part of the BCNA Online Network. Thank you for your openness, your care for one another, and your trust in us. This community matters, and so do you 🌸Policy & Advocacy Update - Vicki Durston - Apr26
Hi everyone, I hope you are doing well today. I wanted to share some reflections with our Online Network community, because many of the issues we are hearing about right now go to the heart of why this community exists. Thank you for being here, for supporting one another, and for continuing to lend your voices to the changes that are so urgently needed. This is about access, advocacy, and what happens when the system does not move fast enough for the people depending on it. Access delayed is access denied 🕰️ Australians deserve a Pharmaceutical Benefits Scheme that delivers timely, affordable access to life saving medicines. It is one of the foundations of our health system, and something Australians trust to be there when it matters most. Right now, that trust is being tested. Women living with metastatic breast cancer still cannot access tucatinib, an evidence based therapy for HER2 positive brain metastases. The Pharmaceutical Benefits Advisory Committee recommended tucatinib for PBS listing in December 2025. Despite this, negotiations between the Australian Government and Pfizer have stalled on price, leaving the medication unaffordable at $64,000-$70,000 for treatment. This is more than an administrative delay. It represents a breakdown in the system. For women with metastatic breast cancer, time is not a policy concept. Disease progresses. Treatment options narrow. Time with loved ones disappears. When neither government nor industry moves, it is women who carry the consequences. As highlighted recently in The Australian, BCNA is raising awareness about what this failure means for women with metastatic breast cancer. This is not just about one medicine. Allowing PBAC recommended therapies to stall indefinitely risks setting a dangerous precedent that could undermine timely access to future medicines across many disease areas. The reality of metastatic breast cancer 🎗️ People living with metastatic breast cancer continue to tell us that the public conversation does not reflect their reality. While pink ribbons, survivorship and positivity have their place, they do not capture what it means to live with incurable disease. As Dr Ilana Galgut has shared, many people with metastatic breast cancer feel the pressure to present a version of themselves that feels palatable to others, while carrying the ongoing reality of scans, progression and uncertainty. People are living longer, but longer does not mean easier. It means ongoing treatment, constant monitoring, fear of progression, and for some, devastation when disease spreads to the brain. This is where awareness must move beyond storytelling. When women courageously make themselves visible, the system must respond with urgency, fairness and access to treatment. It is not acceptable to ask people to share their truth while access to medicines like tucatinib collapses quietly behind closed doors. Modern treatments need modern care models 🏥 Cancer treatment has changed, but too often our models of care have not kept pace. Today, more Australians are receiving oral cancer therapies at home. For many, this reduces time in hospital and improves quality of life. But oral treatments can be dangerously underestimated. Too often, taking a tablet is treated as predictable and low risk. Yet questions remain unanswered. Who monitors adherence? Who manages toxicity? Who identifies early deterioration? Who intervenes before someone presents to emergency? We are hearing directly from nurses, nurse practitioners and oncologists who are calling for care to be reimagined. Nurse led clinics, electronic patient reported outcomes, digital monitoring, urgent symptom clinics, specialist telehealth and improved navigation pathways all exist. The challenge is not innovation. It is whether the system is willing to listen and act. With MASCC coming to Melbourne in June, one of the world’s only major conferences dedicated entirely to supportive cancer care, we urge those working in cancer care, research and policy to engage deeply with the global evidence and consider how change can be implemented locally. When advocacy works ✨ Amid these challenges, it is important to acknowledge what sustained advocacy can achieve. Australia has now passed landmark legislation banning genetic discrimination in life insurance. This reform means people can access genetic testing without fear that results will be used against them when seeking life insurance. This change did not happen quickly. It followed more than a decade of determined advocacy led by Dr Jane Tiller and Krystal Barter, supported by researchers, organisations and advocates across the country, including BCNA. It is a powerful reminder that even when progress feels slow, persistence matters. For women at risk of breast cancer, this reform removes a significant and unfair barrier. It creates greater confidence to access information that can influence prevention, early intervention and life changing decisions. Where we stand now 💬 Advocacy is not abstract. It is deeply human. It is about ensuring women living with metastatic breast cancer are not left waiting while negotiations stall. It is about designing care systems that support people receiving treatment at home. It is about removing barriers that never should have existed. BCNA is calling on our community, clinicians, researchers, leaders and decision makers to stand with us and demand urgent access to tucatinib. For women with metastatic breast cancer, delays are not theoretical. They are measured in time women do not have. Australians deserve better, and together, we will keep pushing for a system that delivers when it matters most 💙
