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 fin…54ViewsSign 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 w…60ViewsSign in to react to this post0CommentsWe 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. 🩷47ViewsSign 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, includ…48ViewsSign 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 l…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…83ViewsSign in to react to this post0CommentsPolicy & 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/ 💊Impact…60ViewsSign in to react to this post0Comments💊 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-5pm733ViewsSign in to react to this post0Comments💬 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.132ViewsSign in to react to this post3Comments
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