Policy & Advocacy Update - Vicki Durston - Oct26
Telling the Whole Story This Breast Cancer Awareness Month October is Breast Cancer Awareness Month, a time when breast cancer is front of mind for many people across Australia. Every day, 56 Australians are diagnosed with breast cancer, and 1 in 7 Australian women will be diagnosed during their lifetime. Awareness matters. It helps increase understanding, encourage early detection, and foster support for people affected by breast cancer. But Breast Cancer Network Australia, we believe it's important to tell the whole story. That means recognising that breast cancer is not one experience. While many people complete treatment and move forward with life after diagnosis, others live with metastatic breast cancer (MBC), an incurable form of breast cancer that has spread beyond the breast to other parts of the body. Their experiences and needs must be part of every conversation about breast cancer awareness. This month, as we reflect on the impact of breast cancer, we're also highlighting the importance of ensuring that people living with MBC are seen, heard and counted. 💗 🌍 Metastatic Breast Cancer Awareness Day: Why Counting Matters Yesterday on 13 October, we marked Metastatic Breast Cancer Awareness Day. For many years, one of Breast Cancer Network Australia's key advocacy priorities has been ensuring that people living with MBC are accurately represented in Australia's cancer data. Without good data, it is difficult for governments, health services and researchers to understand the true impact of metastatic disease or plan the services and support people need. In November 2025, Australia reached an important milestone when the first national estimate of people living with metastatic breast cancer was released. The estimate showed that approximately 20,950 Australians are living with MBC, including around 20,800 women and 150 men. The result was significant not only because of the number itself, but because it confirmed what many people in the breast cancer community had long known: metastatic breast cancer had been substantially undercounted for decades. This achievement followed years of sustained advocacy by Breast Cancer Network Australia's and the wider breast cancer community. 📍 Our advocacy journey ✅ 2022: Breast Cancer Network Australia released the Making Metastatic Breast Cancer Count issues paper on MBC Awareness Day. ✅ 2023: We convened leading cancer and data experts at a national roundtable and developed a roadmap for collecting stage and recurrence data. ✅ 2024: The Australian Government committed $1.5 million to the Australian Institute of Health and Welfare (AIHW) to deliver a national estimate of people living with MBC and scoping a national cancer registry. ✅ 2025: Australia's first national estimate of people living with MBC was published. While this progress is worth celebrating, the work is not finished. A one-off estimate is an important first step, but it does not create a sustainable system for knowing the number of people with metastatic breast cancer over time. Currently, people living with MBC are still not routinely identified as a metastatic population within Australia's cancer registries, and information about stage at diagnosis, recurrence and disease progression is not consistently collected or reported nationally. 📊 The Next Step: Building Better Cancer Data Breast Cancer Network Australia is continuing to advocate for a Multijurisdictional Cancer Registry (MCR) that would connect cancer registry data across states and territories. A national cancer registry would help build a more complete picture of cancer in Australia, including information about stage, recurrence, progression and outcomes. Importantly, it would help ensure that people living with metastatic breast cancer are counted consistently, not just once. We have raised this issue directly with the Prime Minister, the Minister for Health, Disability and Ageing, and the Department of Health, Disability and Ageing. Accurate data is not simply about numbers. It influences decisions about: 💙 Healthcare planning 💙 Treatment access 💙 Support services 💙 Research priorities 💙 Future policy development As we often say, counting people is not the end goal. It's the foundation for delivering better care, better policy and better outcomes. 🗣️ Your Voices Are Shaping Breast Cancer Network Australia's Future Advocacy One of the most important pieces of work we've undertaken this year has been the development of Breast Cancer Network Australia's next Policy & Advocacy Strategy. Between 29 July and 26 August 2026, 2,859 people participated in our Policy & Advocacy Strategy survey. We heard from people diagnosed with breast cancer, family members, carers, health professionals, consumer advocates and many others. The survey was co-designed with Breast Cancer Network Australia's Consumer Representatives and conducted in partnership with Deakin University. Thank you to everyone in the Online Network who took the time to contribute. ❤️ When we asked where Breast Cancer Network Australia should focus its advocacy efforts over the next four years, respondents identified these as the top priorities: Early detection and screening (53.1%) Affordability of tests and treatments (34.7%) Equitable access to treatment (28.1%) Regional and rural access (23.7%) Several themes emerged consistently throughout the survey. 💰 Cost remains a major challenge The financial impact of breast cancer continues long after diagnosis. More than 84% of respondents identified treatment-related costs and out-of-pocket expenses as a moderate or major issue during treatment, with concerns increasing after treatment. 🌏 Where you live matters People living in regional, rural and remote communities reported greater challenges accessing services, highlighting the ongoing importance of addressing geographic inequities in care. 🧠 Emotional wellbeing remains a priority Support for fear of recurrence and access to mental health support were among the highest-rated concerns after treatment, demonstrating the lasting emotional impact of a breast cancer diagnosis. 🧭 Navigating care can be difficult Almost three-quarters of respondents reported care coordination and navigating the health system after treatment as a moderate or major challenge. 🎗️ A Community-Wide Concern for Metastatic Breast Cancer One finding stood out clearly. Respondents rated metastatic breast cancer as the part of the breast cancer experience associated with the greatest challenges. More than 82% of participants said the challenges faced by people living with MBC were very or extremely significant, a higher rating than any other stage of the breast cancer experience. This result reinforces something important: concern for people living with metastatic breast cancer extends across the entire breast cancer community. Whether someone is newly diagnosed, in active treatment, living well after treatment, supporting a loved one, or living with metastatic disease themselves, there is strong recognition that more must be done. The survey findings are now being analysed and there will be ongoing focus groups that our with consumers and stakeholders, including an invitation to participate extended toward this wonderful Online Network community – these voices will continue to shape Breast Cancer Network Australia's Policy & Advocacy Strategy 2030 🌎 Taking Australia's MBC Advocacy to the Global Stage Australia's work to improve metastatic breast cancer data is also attracting international attention. Breast Cancer Network Australia recently contributed to Strengthening Data Collection and Insights for Metastatic Breast Cancer, an international initiative led by The Health Policy Partnership. New advocacy resources, including an infographic and call-to-action video, were released this month, with a policy brief launching on MBC Awareness Day. This international collaboration highlights a growing global recognition that improving data collection is essential to improving outcomes for people living with metastatic breast cancer. 💗 Looking Forward Breast Cancer Awareness Month is an opportunity to celebrate progress, reflect on challenges, and spotlight the issues that still need attention. This October, we are committed to making sure awareness reflects the whole story of breast cancer. That includes ensuring people living with metastatic breast cancer are visible in the data, represented in policy discussions, and supported through meaningful improvements to care. Thank you for continuing to share your experiences, insights and advocacy with us. Your voices shape our work and strengthen our advocacy every day. Together, we can help create a future where no life is limited by breast cancer. 🎀💕 Together, we are stronger 💪55ViewsSign in to react to this post0CommentsPolicy & Advocacy Update - Vicki Durston - Sep26
For many women affected by breast cancer, the past few months have been filled with uncertainty, frustration and, in some cases, fear. When the decision was announced to removemonthly Zoladex (goserelin 3.6mg) from the Pharmaceutical Benefits Scheme (PBS) and Australia, thousands of women who rely on ovarian suppression as part of their treatment were left wondering what would happen next. With no confirmed monthly alternative available on the PBS at the time, many women were understandably concerned about whether they would continue to have access to the treatment they depend on. Today, we can share some welcome news. The Australian Government has announced that monthly triptorelin will be listed on the PBS from 1 October 2026, providing an evidence-based, funded treatment option for people who require ovarian suppression as part of their care. Triptorelin is a well-established treatment that has been used safely for many years and has been studied extensively. Its PBS listing means women will have access to a funded monthly option with evidence supporting its use as an ovarian suppression treatment for women with breast cancer. This is an important outcome for our community and one that BCNA has been advocating strongly for alongside consumers, clinicians and other stakeholders. For many women with hormone receptor-positive breast cancer, ovarian suppression is not optional. It is a critical part of treatment. Put simply, some breast cancers are fuelled by oestrogen. Ovarian suppression helps switch off a major source of that fuel, reducing the risk of cancer returning and helping to control metastatic breast cancer. For some younger women, it can also help protect ovarian function and preserve the possibility of having children in the future. This is not simply about managing symptoms. It is about treating cancer, protecting lives and preserving future choices. 💗 🌸 The Impact of Uncertainty Since the announcement of the withdrawal of monthly Zoladex, BCNA has heard from women across Australia who were deeply concerned about what this might mean for their treatment and future. Many shared fears about treatment disruptions. Others were left trying to understand what alternatives might be available. Some questioned whether they would need to make significant decisions about their bodies because they could not be certain that ongoing treatment would remain accessible. These stories highlighted just how important it was to ensure a funded monthly alternative would be available before the withdrawal of monthly Zoladex took effect. No woman should be left worrying about whether an essential cancer treatment will still be there when she needs it. 🤝 BCNA's Advocacy Efforts Throughout this process, BCNA's role was to listen, advocate and work towards a solution. We heard directly from women affected by breast cancer and brought those experiences together with clinical expertise and evidence. We engaged closely with government, the Department of Health, clinicians and industry representatives to ensure the voices of those affected remained at the centre of discussions. Our message was clear: Women needed a funded monthly alternative available through the PBS before monthly Zoladex was withdrawn. Today’s announcement means that goal has been achieved. 💞 A Collective Effort This outcome would not have been possible without the efforts of many people and organisations. BCNA acknowledges Minister Mark Butler, the Department of Health, the Pharmaceutical Benefits Advisory Committee and the clinicians who responded quickly to this issue and recognised the impact it was having on women affected by breast cancer. We also acknowledge Ipsen, which stepped forward with tTriptorelin, an established treatment that has been used internationally for many years, and worked through the necessary processes to make it available to Australian women. Most importantly, we want to thank the women who courageously shared their stories. Your voices mattered. Your experiences informed the conversation. And your advocacy helped drive this outcome. ❓What Happens Next? While today's announcement provides welcome certainty, we know that many people will still have questions. BCNA will continue to support our community by sharing information, answering questions and helping people understand what this change means for them. We encourage anyone with concerns about their treatment to speak with their healthcare team about the options available to them. Every person's situation is unique, and treatment decisions should always be made in partnership with your medical team. 💗 Looking Forward At the heart of this announcement is something women have been asking for throughout this process: certainty, continuity of treatment, affordability and choice. Cancer already brings enough uncertainty. Access to essential treatment should not be another burden for women and their families to carry. This is a positive step forward and a powerful reminder of what can be achieved when consumers, clinicians, advocates and government work together to put patients first. To every woman who shared her story, asked questions, advocated for change, or supported others through this period of uncertainty, thank you. Today, women have greater certainty about their treatment options and that is something worth celebrating. 🌸💕60ViewsSign in to react to this post0CommentsPolicy & 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 Australia48ViewsSign in to react to this post0CommentsPolicy & 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. 💕33ViewsSign in to react to this post0Comments📢 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 here60ViewsSign in to react to this post0CommentsPolicy & 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.83ViewsSign in to react to this post0CommentsPolicy & Advocacy Update - Vicki Durston - Feb26
As we continue to move through 2026, there’s a real sense of progress building across breast cancer outcomes - both here at home and internationally. I want to share two important moments that highlight how evidence, leadership, and advocacy are shaping a better future for those affected by breast cancer. ✨ Why AI in mammography can’t wait Eric Topol’s recent article, “Why All Mammograms Should Incorporate AI,” brings together powerful evidence showing that AI in breast screening is no longer a future idea - it’s part of modern, effective care today. One of the strongest examples is the large MASAI trial from Sweden, involving more than 105,000 women. When radiologists used AI as support, the outcomes were remarkable: 👉 29% more cancers detected 👉 24% more invasive cancers found 👉 No increase in false positives or recalls 👉 44% reduction in radiologist workload Two-year follow-up findings were equally compelling: fewer interval cancers, fewer invasive cancers, and fewer aggressive types such as triple negative and HER2-positive cancers. What international evidence now shows International evidence is telling a very consistent story. Large trials and real-world evaluations show that AI-supported mammography can safely increase cancer detection while reducing radiologist workload, without increasing false positives or unnecessary recalls. This matters in a system already under pressure. AI is also changing how we think about risk. New image-based risk models can analyse a mammogram that appears “normal” to the human eye and still identify women at higher risk of developing breast cancer in the next few years. This opens the door to more personalised, risk-stratified screening, rather than the one-size-fits-all model we rely on today. Here in Australia, BreastScreen is a highly respected program, but it was designed more than 30 years ago. While Victoria and NSW are now piloting AI within their services, we still lack a coordinated national approach for integrating AI into breast screening that reflects today’s evidence. What BCNA is calling for We are now at a decision point. The question Eric Topol poses - “If not now, then when?”- is the same challenge facing Australia. For BCNA, this is not about chasing technology for its own sake. We are calling for AI to be treated as a core part of the evolution of breast screening, not an optional add-on. That means: Embedding AI research, evaluation and implementation within BreastScreen Ongoing, in-program national investment in screening research and quality improvement Ensuring that the benefits of new technology are delivered equitably, so no woman is left behind because of where she lives or her background If we get this right, AI won’t replace the program Australians trust - it will strengthen it, helping detect cancers earlier, supporting an overstretched workforce, and moving us closer to truly personalised, risk-stratified screening.81ViewsSign in to react to this post0Comments
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