More Than a Documentary: Why Kylie's story means so much
Last night, I watched the Kylie documentary and there are so many aspects of it that are swirling around in my head. There was so much joy in it. Warmth, humour, resilience. Kylie’s ability to keep showing up with grace and optimism despite everything life has thrown at her is remarkable and genuinely inspiring. But it was episode three that really resonated with me. Her words were what I have heard for over 20 years in BCNA. I imagine it has stayed with many of you too. There is not a woman in the world who has experienced breast cancer who won’t recognise the emotions Kylie so articulately describes. The fear and sometimes reality of recurrence or progression. The invisible experiences people often cannot fully understand unless they’ve lived them too. The emotional, physical, mental and financial impact. The way breast cancer can change confidence, identity, relationships and how someone moves through the world long after treatment ends. When Kylie shared her diagnosis publicly all those years ago, it prompted thousands of women to book breast screens. I am sure that the documentary will once again be a powerful reminder of the importance of early detection. I am incredibly grateful to Kylie for sharing her story with such honesty and humanity. I have no doubt it will be validating for many of you and encourage important conversations around early detection, while also helping put words to an experience that can often feel impossible to explain. In just one episode she covers so many aspects - family, friends, the importance of cards, fertility, work, fatigue, community, fear and fun. It’s a very real reminder of the extraordinary power of lived experience. Something that sits at the very heart of our work every day. If watching the documentary has brought up difficult feelings or questions, please know we are here for you. Call the Helpline on 180 500 258.182ViewsSign in to react to this post2Comments💬 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.ViewsSign in to react to this postComments💊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.ViewsSign in to react to this postComments🎉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.ViewsSign in to react to this postCommentsCEO 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 hereViewsSign in to react to this postCommentsFriday Update - 1st August 2025
Hello and welcome to our Friday Update! Whether you’re new to the BCNA Online Network or a long-time member, we’re so glad you’re here. This safe space built on connection, understanding, and shared experience. Last month, we’ve seen powerful conversations, and practical advice shared across the community. From navigating treatment side effects to finding emotional support, your contributions continue to make this network a safe and empowering place for all. If you’re just joining us, we encourage you to explore the forums Get started here introduce yourself, or simply read along. And if you’ve been with us for a while, thank you for continuing to support others. 💬 Trending Online Network Discussions – July 2025 Bone and join pain side effects of chemotherapy Offering practical advice and emotional support for those newly starting chemotherapy treatment. From bad to worse, but getting better. Metastatic breast cancer (MBC) after previously having early-stage cancer. Kindly sharing story with the community, sparking conversation and shared experiences. Implant or Autologous Flap? Exploring reconstruction options post-mastectomy, with members sharing their experiences with implants versus DIEP flap procedures. WHO do I tell? Emotional challenges of disclosing diagnosis to loved ones. Members sharing advice on navigating conversations with family and friends. Letting go of blame - WHY did I get cancer? Inspired by a BCNA podcast, this discussion sparks meaningful dialogue about emotional healing and self-compassion. 🌟 BCNA Highlights – July 2025 Expanding the ‘Seat At The Table’ Program BCNA continued to grow its internationally recognised Consumer Representative Program Seat at the Table program , empowering people with lived experience to influence cancer research, policy, and care. This initiative ensures that real voices shape decisions that affect breast cancer patients nationwide. BCNA Consumer Representative Kym shares what she thinks Do you think it’s important that those with lived experience are involved in research? Global Advocacy for Metastatic Breast Cancer BCNA joined forces with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada) at the Australian High Commission in London to launch a joint advocacy pledge. The united call to action urges governments and health systems worldwide to count and recognise people living with metastatic breast cancer; a critical step toward improving care, visibility, and support. Watch Together for visibility, equity, and support! Exciting News! BCNA is proud to welcome Red Energy as our inaugural Principal Partner. This partnership marks a significant milestone in our mission to support all Australians affected by breast cancer. Together, we’re powering hope, connection, …ViewsSign in to react to this postCommentFriday Update - 6th June 2025
Hi everyone, Welcome to your Friday Update from BCNA's Online Network! As we wrap up May, we're excited to share the latest highlights and activity that have shaped our community last month. From the inspiring 25th anniversary of the Pink Bun campaign to powerful advocacy efforts and volunteer celebrations, May has been a month of connection and support. Let’s take a look at what’s been happening across the BCNA network 🌸 Pink Bun Campaign – 25 Years of Support May marked the 25th anniversary of the Pink Bun campaign, a long-standing partnership between Bakers Delight and BCNA. From 1 to 21 May, bakeries across Australia turned pink to raise funds and awareness for Australians affected by breast cancer. Highlights included: 100% of Fun Bun sales donated to BCNA. Beanies and tote bags sold to support the cause. Pink Bun Parties hosted by schools, workplaces, and community groups. Over $2.4 million raised this year and still counting! You can watch BCNA's CEO Kirsten reflect on the success of the campaign via the link Thank you from the bottom of our hearts! 🧡 National Volunteer Week BCNA celebrated National Volunteer Week by recognising the incredible contributions of its volunteers. Their dedication helps BCNA provide vital support and resources to those affected by breast cancer. 📢Advocacy and Awareness BCNA have been highlighting concerns about women being denied knowledge of their increased breast cancer risk, advocating for better access to genetic information and screening. We welcome BreastScreen Australia’s new position statement says every woman should be told her breast density because it affects both your breast cancer risk and how easily it can be detected. Some states are leading the way, but others are still catching up. Every woman deserves to know her risk and have access to support, no matter where she lives. You can read via the link Australian women denied knowledge of their increased breast cancer risk 🤝BCNA Celebrating partnerships BCNA proudly celebrates 20 years of partnership with Sussan, one of our most dedicated Major Partners. Since 2005, Sussan has raised over $3.3 million to support BCNA’s vital services and resources for Australians affected by breast cancer We share a vision to ensure every Australian diagnosed with breast cancer receives the very best care and support. Together, we’ve celebrated many achievements and milestones, paving the way for a better breast cancer experience for all Australians – no matter where they live. State of the Nation Report: Sussan's funding of the State of the Nation report has driven significant policy changes and improvements in services for people diagnosed with breast cancer. This report was the largest of its kind and armed BCNA with the information needed to identify eight priorities for urgent action and to influence the necessary change in the he…ViewsSign in to react to this postCommentsFriday Update - 17th April 2025
Hi everyone, We’re back with your latest update from Breast Cancer Network Australia (BCNA)—keeping you across activity happening within the organisation and the broader community. Whether you’re newly diagnosed, navigating treatment, or supporting a loved one, we hope you find the update useful. We cannot believe it is Easter already! Hope you can enjoy the time in a way that feels right for you. You may even like to grab a hot cross bun this Easter at Bakers Delight! Did you know Bakers Delight and BCNA have had a partnership for 25 years? (Read more about this amazing partnership in this update). 📚 Resource of the Month: “My Journey” upgrade If you haven't explore it it yet, BCNA has launched its new My Journey with better information and support for people impacted by breast cancer! You would've noticed that My Journey and Online Network can now be found in one place for a more streamlined user experience across all devices. We collaborated with consumer representatives and healthcare professionals in creating and reviewing our evidence-based content, ensuring the new My Journey features a broad range of the latest and most credible resources for you. Watch the video here of Naveena (BCNA Consumer Representative) talking about how to navigate the platform. If you have any questions, please go to our Frequently asked questions page in the first instance. To ensure we do not miss any of your feedback or technical issues please log these under the Get in Touch form to ensure feedback is collected in the centralised area. A special thank those of you who have supported us with feedback and troubleshooting solutions during the transition to the new platform. 📢BCNA in Action: Policy Priorities 2025 With breast cancer being the most common cancer affecting Australian women, annually it is costing the Australian Government nearly $1.8 billion. As we approach the federal election, BCNA is advocating for systemic change in four key areas: Reducing the financial costs of breast cancer treatment and support – Women with breast cancer experience high out-of-pocket healthcare costs as well as indirect costs such as loss of income, leading to substantial financial burden. Prioritising risk-based stratification for early detection and breast screening programs – Genetic conditions and breast density can significantly increase breast cancer risk. Access to specialist diagnostic and screening tests is limited due to restrictive eligibility criteria, cost, and workforce shortages, particularly in regional areas. Addressing unmet supportive care needs for people impacted by breast cancer – Advances in treatment continue to improve survival rates, but physical and emotional impacts such as chronic pain, fear of recurrence, and lymphoedema remain complex and require greater attention. Investing in a sustainable and comprehensive cancer data ecosystem – The lack of comp…ViewsSign in to react to this postComments
Palliative care crisis in Victoria - Can you help us? 11/9/2020
Hello everyone, We are reaching out to our network as we are seeing a palliative care crisis in the state of Victoria. We are going to be sending out a media release to highlight the issues associated with visitor restrictions in hospitals and those needing care in the community who are not able to access much needed services. We are looking for someone that is currently experiencing these challenges or can appreciate these challenges to help BCNA with the message. Media won’t speak to us without speaking to someone going through these challenges . If you or one of your family members would be willing to contribute we would love to hear from you. Please contact Vicki Durston directly on 0411 212 261. Thanking you kind regards GiovannaViewsSign in to react to this postCommentMedia request - Women in all states/territories who can speak about allied health
Hello everyone, We are looking for one or two women in every state and territory who would be happy to speak to the media about the importance of allied health services, for example, exercise physiologists, physiotherapists, dietitians, psychologists, lymphoedema therapists, social workers, etc. for a media campaign in relation to Breast Cancer Awareness Month. The key issues include: - Cost - Under GP Management Plans and Team care arrangements, women are eligible to claim a Medicare rebate for up to five visits per calendar year to allied health practitioners; we want this extended to 10 visits per year. - Availability of services – for example availability of services in outer regional or rural areas. If you are interested, please email Andrew Ellis, Media Manager at BCNA [email protected] Thanking youViewsSign in to react to this postComment
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