💬 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 💙💊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.🎉A Landmark Win: Australia Bans Genetic Discrimination in Life Insurance!
Declared today - what a start to the month! After ten years of sustained advocacy, Australia has passed legislation banning genetic discrimination in life insurance. This is a historic moment for fairness, medicine, and genomic health. 🧬The bill has now passed the Senate and will become enforceable in October 2026, giving insurers time to update their systems. Once active, Australians will finally be able to access genetic testing without worrying about how their results might affect life insurance 🎉 💙 This reform follows years of work from advocates including our very own Vicki Durston, and Monash University’s Dr Jane Tiller who described the outcome as extraordinary and vital for protecting everyday Australians. It also creates new opportunities for preventive genomic screening through programs like DNA Screen, which has already provided life‑saving information to participants. 🌺 Stories like that of 22‑year‑old Mia Hodder, who carries a BRCA2 variant, show the real impact of this shift. She shared that genetic testing empowered her to take preventive action and expressed relief that others will now be protected from discrimination when making similar choices. 🎊This legislation marks a major step forward for public health, early detection, and equitable access to genetic information. A huge victory for medicine, for genomics, and for fairness. More updates will follow as the implementation date approaches, if you're interested in learning more, you can read the Monash University media release here.📣 BCNA's Strategy 2025–2030 Now Available
We are absolutely thrilled to share something truly special with you - Breast Cancer Network Australia's Strategy 2025–2030 is officially available to view and it marks a bold, inspiring new chapter for all Australians affected by breast cancer. This strategy isn’t just a document. It's a promise to be louder, braver, and more determined than ever in driving change. Built from the voices, experiences, and hopes of people all across our community, this roadmap sets out the ambitious work ahead - from strengthening advocacy and pushing for equity in care, to elevating lived experience so every voice is heard where it matters most. ✨ It reflects where we’ve been. It celebrates where we are. And it charts a powerful path for where we’re going, together. You can read the full strategy here: 👉 https://www.bcna.org.au/media/l5ua3c3e/bcna-strategy-2025-2030.pdf We’d love to know: What excites you most? What sparks hope or inspiration? Your insights continue to shape everything we do, and this moment is very much yours. Thank you for being at the heart of our community - your courage, honesty, and support drive the work ahead. Here’s to five years of impact, connection, and meaningful change. 💗💪🌟 BCNA's 2025 Impact Report Is Here!
What a year it was. In 2025, BCNA reached further, stood louder, and showed up stronger in the places where we’re needed most. From the sparkling shores of Bondi to the heart of Willetton, our community carried us into conversations, fundraisers, gatherings, and moments that truly mattered. We didn’t just raise awareness, we raised voices, hope, connection, and the courage to keep going. And none of it could have happened without you. 💗 At BCNA, everything starts with care for our community. Every story, every milestone, every ripple of change begins with the individuals who make up this extraordinary community. This year’s Impact Report isn’t just numbers - it’s a living, breathing celebration of the people behind them. The women, men, and families who opened their hearts, shared their experiences, and reminded us why this work matters so deeply. We’ve gathered some of our favourite stories from the past year - stories of strength, innovation, resilience, and community spirit that carried us forward. Take a moment to explore them. Let them inspire you. Let them remind you of the difference we make together. 💕Here’s to another year of impact, connection, and hope. Thank you for being part of this incredible community - for standing with us, walking with us, and believing in what we can achieve together. 👉Read BCNA's 2025 Impact Report HereCEO Update - Kirsten Pilatti - Mar26
Hi everyone, Every year, International Women’s Day gives us a moment to pause, reflect, and recommit to creating a more equitable world. This year’s UN Women Australia theme “Balance the Scales” resonates deeply with the work we do at BCNA and with the lived experiences of the hundreds of thousands of women we serve. Recently, I had the privilege of spending time with our long-time partner Sussan to explore what this year’s theme truly means for women navigating Australia’s healthcare system. Their guiding motto “By Women, For Women” pairs powerfully with “Balance the Scales”, highlighting both the strength of women supporting women and the urgency of creating systems that work with them, not against them. In our conversation, I reflected on how often women must fight to be heard, believed, and supported within a healthcare landscape that was never designed with them in mind. At BCNA, our Purpose is to stand for all Australians affected by breast cancer. We want to ensure that everyone can access the care, dignity, and understanding they deserve. 👉 Watch the video here ✨ Our 2025–2030 Strategy: Putting lived experience at the centre For more than 25 years, BCNA has fought to ensure that women's lived experience isn’t an afterthought, it’s the blueprint for action. Our new five-year strategy strengthens this commitment. It sets a bold direction to ensure our: support is stronger advocacy is louder reach is wider impact is deeper ❤️ I believe that the people we serve are the heartbeat of our organisation. This strategy represents their voices, their stories, and their needs. 👉 Explore the 2025–2030 Strategy ✨ Looking back to look forward One of the stories that continues to inspire me is that of our founder, Lyn Swinburne. In the year 2000, Lyn – mum, teacher, and fierce advocate – sat inside the Élysée Palace in Paris. Pen in hand, she paused for a moment, smiling nervously, before signing an international Charter in the presence of French President Jacques Chirac. That moment was more than ceremonial. It marked the beginning of BCNA’s enduring commitment to global advocacy, to women’s rights in healthcare, and to building a future where equity isn’t aspirational, it’s expected. 👉Read more herePolicy & Advocacy Update - Vicki Durston - Mar26
✨A Week of Leadership, Connection and Progress for Our Community This month was an inspiring and deeply meaningful one for BCNA - the kind that reminds us why our work matters and how powerful it is when lived experience, clinical expertise and policy reform all move forward together. 💪Strengthening Early Detection in Brisbane - A National Push for Modernisation We began this month in Brisbane at the BreastScreen Australia Conference, surrounded by leaders in research, screening and diagnostics who are working every day to improve early detection and outcomes for women. It was a privilege to spend time alongside our CEO Kirsten Pilatti, Krysty Sullivan (one of our Consumer Representatives who presented at the conference) and members of our BCNA team on the exhibition floor. Together, we engaged with health professionals about the ongoing importance of early detection and the critical support BCNA provides to people diagnosed with breast cancer. These conversations were a powerful reminder of how lived experience and clinical expertise enrich each other when they come together with openness and respect. Across the conference, we heard from experts and advocates dedicated to ensuring breast screening programs continue to evolve with emerging evidence. We’re especially grateful to those who champion the voices of people with lived experience - because it’s those voices that ground reform in the realities of diagnosis, treatment and survivorship. As the conference concluded, Minister for Health Mark Butler outlined the Commonwealth’s next steps to modernise Australia’s breast screening program. These commitments include: A national policy framework for risk‑based screening A national strategy to increase participation rates A contemporary quality framework to guide program delivery Stronger collaboration between the Commonwealth, states and territories These are important shifts, and BCNA welcomes them. We look forward to understanding the detail of the upcoming report and what it will mean for the women we support. What remains clear is that every woman, no matter where she lives, deserves access to a modern, evidence‑based screening program. We will continue advocating for transparency, full implementation of recommendations, and - above all - the inclusion of lived experience at every stage of reform. 🧑🤝🧑 Growing the Future of Consumer Leadership Earlier this week, another important milestone event was taking place: one of our most cherished BCNA traditions - our Seat at the Table program. This week, we welcomed 20 new Consumer Representatives, expanding our remarkable network from 44 to 64 advocates nationwide. This growth speaks to the strength of the program and BCNA’s commitment to ensuring lived experience informs everything we do across policy, advocacy, research, service improvement and consumer leadership. Over two-and-a-half intensive days, our new representatives built on their online learning and developed new skills, knowledge and confidence. Throughout the training, participants heard from presenters who brought warmth, expertise and deep insight: Charlotte Tottman, psycho‑oncologist, explored the emotional impact of drawing on lived experience and shared practical strategies for recognising triggers and navigating challenging moments with care. Professor Rick Thompson guided the group through the relationship between evidence and lived experience, illustrating how both perspectives are essential when shaping research and policy. Jen Gilchrist discussed advancements in treatment and the increasingly important role consumer voices play in shaping advocacy priorities and research agendas. The training also created space to explore BCNA’s current priorities, workshop key issues facing our community, and identify tangible ways to contribute. Equally important, it fostered connection, allowing new and long‑standing representatives to learn from each other, share wisdom, and build a strong sense of belonging. We were fortunate to have representation from across the country, with lived experience spanning early breast cancer through to metastatic disease. It was particularly special to spend time with our founder and our new BCNA Chair, both of whom continue to inspire and anchor this work. What makes the Seat at the Table program so impactful is that it doesn’t simply invite people to share their stories. It invests in them — providing the training, tools and support they need to contribute with clarity, confidence and purpose. It strengthens consumer leadership and ensures that lived experience is not an afterthought, but a powerful driver of change. A heartfelt thank you goes to the dedicated team behind the program, including our L&D Consumer Representatives. The scale of what they coordinate, the standard they deliver and the care they pour into every aspect of the training is exceptional. ❤️A Shared Purpose Moving Us Forward This month has made one thing abundantly clear: When expertise, policy, and lived experience come together, we create real and meaningful progress. Whether it was standing on the exhibition floor in Brisbane or sitting in a training room alongside new Consumer Representatives, we received a heartfelt reminder of what we can achieve when we collaborate with purpose, compassion and a commitment to equity. It is work we are proud of, and work we remain deeply committed to.🌱Wednesday Wellness - 3Mar26-The power of advocating for yourself🌱
This Wednesday, we’re focusing on a part of wellness that is so important but sometimes overlooked while navigating the whirlwind of a breast cancer diagnosis: the power of advocating for yourself. Advocating for yourself doesn’t mean having all the answers, being endlessly confident, or navigating everything on your own. It simply means honouring your needs, your values, and your voice - even on the days when speaking up feels hard. It’s about trusting that you are the expert in your own body and your own lived experience. 💗 Why self‑advocacy matters When you advocate for yourself, you help shape a care experience that reflects who you are and what matters to you. This can mean: asking for clearer explanations seeking a second opinion saying when something doesn’t feel right requesting extra emotional, cultural, or practical support taking time to make decisions voicing what you need to feel safe and informed These conversations can deepen trust with your treating team and empower you to make choices with greater confidence and clarity. 🌱 Small ways to strengthen your advocacy You don’t need to be loud or forceful - advocacy can be gentle and supported: Bring a support person to appointments Write down questions beforehand Ask for information in the format you prefer (written, verbal, print, digital) Let your team know how you make decisions best Take space when you need to — it’s okay to say “I need time to think about this” 🔎 Questions to Ask Your Treating Team We've compiled the following lists of questions designed to help you on the path to having your voice heard during appointments with your treating team as you navigate a breast cancer diagnosis. Click the link below: 💪Be your best advocate with your treating team 💬 A gentle reminder Your voice should e an essential part of your health care plan. Give our Helpline team a call on 1800 500 258 if you're feeling stuck and are wanting to explore how you can best advocate for yourself during your breast cancer journey.
