đŁď¸ Invitation to share your voice: Understanding Cancer Related Stigma Through Lived Experience
BCNAâs Consumer Engagement team is inviting members of our Online Network to share their experiences of stigma and shame following a cancer diagnosis. Cancer related stigma is not only about visible changes. It can be social, cultural, emotional, and systemic. It can affect how people see themselves, how others respond to them, and how safe they feel seeking care or support. These experiences are often deeply personal, and they can vary widely across communities, cultures, and healthcare settings. đ Why your perspective matters In June, a BCNA trained Consumer Representative will be presenting at the Multinational Association of Supportive Cancer Care Australia Conference. This presentation will bring consumer voices into an international conversation about whole person care, supportive care, and the importance of patient partnership in addressing stigma. To ensure this presentation truly reflects the diversity of experiences across Australia, we are gathering insights from our broader network of members. đ Take part in the survey By completing this short survey, you will help shape the content of the presentation and strengthen the messages shared with clinicians, program leaders, policy makers, and researchers. Your voice will help ensure lived experience remains central to conversations about stigma, care, and support. đ Take the survey here đď¸ The survey closes on Friday 8 May 2026 đŠ If you have any questions, please contact satt@bcna.org.au Thank you for considering sharing your experience and helping amplify the voices of people affected by cancer.đAdvocacy Update: Standing Strong for Access to Tucatinib
We wanted to share an important update on BCNAâs advocacy for tucatinib, a targeted therapy used to treat HER2âpositive metastatic breast cancer. đ 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. đĽ Advocacy momentum is building Momentum in BCNAâs advocacy continues to build, with strong media engagement helping to raise awareness, including an article in The Australian, coordinated activity across BCNAâs 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. đ¤ 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. Weâll continue to keep you informed as things progress and will reach out if there are any specific actions weâd like your support with.đA 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. đ§ŹThe 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 đ đ This reform follows years of work from advocates including our very own Vicki Durston, and Monash Universityâs 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 lifeâsaving information to participants. đş Stories like that of 22âyearâold 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. đThis 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.đŁ BCNA's Strategy 2025â2030 Now Available
We are absolutely thrilled to share something truly special with you - Breast Cancer Network Australia's Strategy 2025â2030 is officially available to view and it marks a bold, inspiring new chapter for all Australians affected by breast cancer. This strategy isnât 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 weâve been. It celebrates where we are. And it charts a powerful path for where weâre going, together. You can read the full strategy here: đ https://www.bcna.org.au/media/l5ua3c3e/bcna-strategy-2025-2030.pdf Weâd 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. Hereâs to five years of impact, connection, and meaningful change. đđŞđ 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 weâre 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 didnât just raise awareness, we raised voices, hope, connection, and the courage to keep going. And none of it could have happened without you. đ 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 yearâs Impact Report isnât just numbers - itâs 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. Weâve 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. đHereâs 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. đRead BCNA's 2025 Impact Report Heređ˘ Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high outâofâpocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ⨠As part of our EndâofâFinancialâYear national advocacy campaign, weâre calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: đ¸ Travelling long distances or interstate for a diagnostic breast scan đ¸ No public diagnostic facility available in your region đ¸ Significant outâofâpocket costs for essential imaging đ¸ Long waitlists that delayed your diagnosis đ¸ Impacts on treatment, health outcomes, or mental wellbeing due to these delays. đŞ Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - itâs a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If youâre interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; đ https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve â¤ď¸đ˘ Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high outâofâpocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ⨠As part of our EndâofâFinancialâYear national advocacy campaign, weâre calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: đ¸ Travelling long distances or interstate for a diagnostic breast scan đ¸ No public diagnostic facility available in your region đ¸ Significant outâofâpocket costs for essential imaging đ¸ Long waitlists that delayed your diagnosis đ¸ Impacts on treatment, health outcomes, or mental wellbeing due to these delays. đŞ Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - itâs a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If youâre interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; đ https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve â¤ď¸
CEO Update - Kirsten Pilatti - Mar26
Hi everyone,⯠Every year, International Womenâs Day gives us a moment to pause, reflect, and recommit to creating a more equitable world. This yearâs UN Women Australia themeâŻâŻâBalance the ScalesââŻresonates 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 yearâs theme truly means for women navigating Australiaâs healthcare system. Their guiding motto âBy Women, For WomenââŻpairs powerfully with âBalance the Scalesâ, highlighting both the strength of women supporting women and the urgency of creating systems that workâŻwithâŻthem, 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. đ Watch the video here â¨âŻOur 2025â2030 Strategy: Putting lived experience at the centre For more than 25 years, BCNA has fought to ensure that women's lived experience isnât an afterthought, itâs 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 â¤ď¸âŻI believe that the people we serve are the heartbeat of our organisation. This strategy represents their voices, their stories, and their needs. âŻđ Explore the 2025â2030 Strategy â¨âŻLooking back to look forward One of the stories that continues to inspire me is that of our founder,âŻLyn Swinburne. In the year 2000, Lyn â mum, teacher, and fierce advocate â sat inside the ĂlysĂŠe 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 BCNAâs enduring commitment to global advocacy, to womenâs rights in healthcare, and to building a future where equity isnât aspirational, itâs expected. âŻđRead more hereChest Cancer Breast Cancer
Hello readers (all members, carers, staff, the public), Having read various requests, pleas, posts that communicate the need to INCLUDE males, in fact all people of any gender and age, and still see vastly inadequate awareness and action, please understand why this call for action might reflect how urgent, emphatic and furious it can become. How many requests, how many years, how many lives suffering shame/embarrassment/stigma/isolation, how many deaths, how much ignorance, even among today's GPs, how little support, how many undiagnosed cancer cases??? For anyone who cannot feel empathy, like it-does-not-affect-me or they-are-JUST-minority, then think⌠if it is your: son, brother, father, partner, husband, grandfather, grandmother, child, other loved ones, or someone you respect. Actions please, especially by BCNA, and other organisations, in the position of power to do something about it -right now. Strongly recommend: Marketing Team, able and influential. BCNA pagesâ banners are the worst misinformation propagator of âwomen-only, pink pink bathing-big-busts-the-goal-in-life; no children, no males, no matter cancer undiagnosed untreated they are nobody. Requests of years ago still ignored. Please right now stop plastering pink pink bright pink all over, highlighting bulging breasts in pink bathing suits as if for a women-only swim club, exclusively pink bright pink skirts, and just women maniacally laughing. Over-the-top incongruous. Please donât switch to extreme stereotypes either, like typically the most wrinkly hand being held by an age-contrast hand, in copy-cat robotsâ stock-photos marketing. While youâre adjusting, please very ably and kindly reduce all the auto flipping/sliding panels, hyperactive donate-button, and fast drop-drown whenever we just hover or just breathe; itâs turning us into a nervous twitchy moving-image-nauseous wreck. Some have x months to live, can marketing spend 3 hours to make a beta, 3 days to go live, for them to see in time? Merchandise. Please adjust the pink pink pink ribbons. How about a more INFORMATIVE, educating, creative, inclusive pink+green+brown for example, avoiding gender-again gender blue. Something neutral and universal? A flower+leaf+stem, sun moon star, or a simple band? A sticky post please, kind can-do staff, to educate and change habit. Something like âGenderless breast cancer affects allâ, in green? Avoid gender-colour. Members posting please use neutral communication instead of all these âlovely ladiesâ. We are supposed to know better, and the public can read these posts to learn from us. No, it is not enough to have ONE day of the year for half the population -cancer affects everyone in the personâs life. No, it is not acceptable to shove males, children, and so-name-called CALD (we are all of us diverse multicultural so itâs not right for one group to name call the âothersâ as diverse) to go talk among yourselves in that corner or in a locked group. As if get out of my sight. As if we donât care. As if youâre not one of us. It is not fair to burden this task on the shoulders of the ânot one of usâ to educate the mass. The task is on us. Please get updates of info to reach and make sure GPs and all other medical professionals are up-to-date and aware. Still a problem, in 2026. Please action, everyone. Kind members please do, if not already. Please search âmaleâ, âmenâ, and topic âInclusionâ 2019? on this site, to listen, to hear, to understand, to be kinder. Letâs mark todayâs date 20-Mar-2026 awaiting action. We are counting, each day. More suffering. Any effective action. Please. With hope and thanks. [Edit: Tagging PeterBâ and traveltextâ to acknowledge and show appreciation.]
Policy & Advocacy Update - Vicki Durston - Mar26
â¨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. đŞStrengthening 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. Weâre especially grateful to those who champion the voices of people with lived experience - because itâs those voices that ground reform in the realities of diagnosis, treatment and survivorship. As the conference concluded, Minister for Health Mark Butler outlined the Commonwealthâs next steps to modernise Australiaâs breast screening program. These commitments include: A national policy framework for riskâbased 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, evidenceâbased 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. đ§âđ¤âđ§ 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 BCNAâs 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, psychoâoncologist, 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 BCNAâs current priorities, workshop key issues facing our community, and identify tangible ways to contribute. Equally important, it fostered connection, allowing new and longâstanding 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 doesnât simply invite people to share their stories. It invests in them â 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. â¤ď¸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.
