PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
WHAT WE HAVE ACHIEVED SO FAR
B CNA exists through the eyes of our network - our members with a lived experience of breast cancer, families that carry on the legacy of their loved one, health professionals providing care and other important supporters of our work. Read about key moments that have defined our network as we have grown into the organisation we are today, while also paving the way for what we will achieve in the future. BEING A STRONG VOICE Our role in advocacy is critical to improving outcomes for all BCNA has been a leader in consumer-led advocacy in the cancer sector and paved the way for many other consumer advocates and organisations. Given breast cancer is a disease with such a widespread impact, BCNA has had the ability to galvanise a strong collective voice of people from all walks of life. BCNA’s advocacy for equity of access to all breast cancer drugs and tests began with a campaign for a drug known at the time as Herceptin (trastuzumab). Families were mortgaging their homes and selling their possessions to afford access to this life-prolonging drug. In 2001, BCNA led the network OUR STORY SO FAR
OUR COMMITMENT TO UNDERSTANDING THE REAL ISSUES
BCNA released the Financial Impact of Breast Cancer report, helping to highlight this key issue. We continue to work to reduce the cost of breast cancer by working with Cancer Council Australia, other cancer agencies and government. Some of our successes include Medicare rebates for MRI scans for young women, breast prostheses reimbursement programs, and lymphoedema compression garment subsidy programs. Importantly, ongoing events such as BCNA’s Think Tank create further platforms for discussions with consumers to help us understand the evolving issues affecting those with breast cancer, and prioritise and plan our ongoing efforts. OUR VOICE IN ACTION With so much to be done, our Policy and Advocacy strategy helps to focus our efforts. From July 2023, we will enhance our work to support ‘living well with and beyond breast cancer’ with one key focus being those living with metastatic breast cancer. Australia’s cancer registries do not routinely collect stage-at- diagnosis or cancer recurrence data. This means that we do not know how many people are living with treatable, but not curable, metastatic
If we were to estimate a previous average cost to patients of $50,000, this has potentially saved families a total of $1.6 billion. It has, literally, saved lives and livelihoods. – Kirsten Pilatti, BCNA CEO, commenting on the impact of BCNA’s advocacy to list the breast cancer drug Herceptin on the Pharmaceutical Benefits Scheme.
We continue to seek insights from our network in lots of different ways, from travelling to rural and regional locations, to national surveys and partnerships with researchers. All this collectively contributes to an evolving national picture of the issues affecting those with breast cancer to ultimately help to improve outcomes. BCNA’s landmark State of the Nation report in 2018 aimed to map where progress had been made and where more work needed to be focused. The report – the biggest study of its kind for BCNA or any consumer group in Australia – was informed by a survey of over 10,000 of our members. We continue to leverage the findings of this report to inform our advocacy and create opportunities for partnership in the sector. WORKING IN PARTNERSHIP TO BRING ABOUT CHANGE The financial impact of breast cancer has been an ongoing issue since BCNA began. Out-of-pocket costs are often significant, particularly for people who have their treatment in the private health system. In 2017,
THE POWER OF LIVED EXPERIENCE TO INFORM,
to successfully lobby and work with government, health professionals and the suppliers to have the drug subsidised for people living with metastatic breast cancer; the real-life stories of those impacted were central to the success of this campaign. Access was granted, giving those with fewer treatment options renewed hope of more time with their loved ones. Responding to a developing evidence base, in 2006 BCNA led a second successful campaign to have the subsidy expanded to those with early breast cancer. As a result, more than 32,000 Australians have accessed trastuzumab. This advocacy set a precedent for strengthened consumer and clinician-led advocacy that has brought countless other breast cancer drugs onto the Pharmaceutical Benefits Scheme, with successes including Tykerb (lapatinib) in 2008 for HER2-positive metastatic breast cancer and Trodelvy (sacituzumab govitecan) in 2022 for triple negative metastatic breast cancer. Without government subsidy, these life-saving and life-prolonging treatment options would remain out of reach for many. For more information about BCNA’s advocacy work, visit bcna.org.au
INFLUENCE AND DRIVE CHANGE
V icki Durston with Andrea Smith at the launch of Making Metatstatic Breast Cancer Count, 2022
The establishment of BCNA’s Seat at the Table program in 2001 provided the opportunity to ensure the consumer voice is involved whenever there are decisions or discussions about breast cancer internationally, nationally or locally. This formal training program elevates consumer representatives to be more than just storytellers, and to represent the broader experience, and strategically influence research, policy and service provision not just in breast cancer, but across the health system. ‘Becoming a consumer representative also embodies connectedness, knowingness, humanness, and hope. I now have the privilege of representing every one of the 20,000+ women, men and families who will be affected by breast cancer this year, and every person still impacted by cancer years after finishing treatment. My voice now speaks for others in the hope that it creates improvements in patient experiences.’ – Jodie Lydeker, BCNA Consumer Representative BCNA provides a number of opportunities for people with lived experience to get involved. Find out more at bcna.org.au/fundraise/get-involved
breast cancer, leading to this group being ‘invisible’ to policymakers and health service providers, despite having significant unmet needs. Last year, BCNA released an issues paper, Making Metastatic Breast Cancer Count , which calls for improvements to the collection and reporting of cancer data so that we can advocate for improved services for this group and ensure they are ‘no longer hidden in plain sight’. ‘The release of the issues paper was a bold and clear statement from BCNA of its commitment to addressing the lack of data on metastatic prevalence in Australia. This work flagged to a lot of people with metastatic breast cancer, who perhaps did not think BCNA represented them, that the organisation is operating in this space and takes this issue seriously.’ – Andrea Smith, BCNA Consumer Representative living with metastatic breast cancer We know we still have much work to do to ensure that the voices of people with diverse experiences of breast cancer are heard. Our Lived Experience Reference Groups, including metastatic, LGBTIQ+, and rural and remote, support our advocacy work with their diverse real-world experiences.
Herceptin advocacy in action, 2006
State of the Nation launch, 2018
Breast Cancer Network Australia
bcna.org.au
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
WHAT WE HAVE ACHIEVED SO FAR
PROVIDING INFORMATION AND SUPPORT
B CNA knows that seeing the whole person and recognising their psychosocial, as well as clinical needs. Because of this, we communicate with our network in a variety of ways beyond just sharing the latest in clinical advice, including sharing the stories and experiences of our members. Our members’ insights allow us to know firsthand where information and support is most needed. The way we provide information has adapted to treating breast cancer means more than just treating the tumour. It is about respond to these needs amidst the ever-changing health landscape and evolutions in technology. SHINING A LIGHT In 1998, BCNA Founder Lyn Swinburne needed a way to stay in touch with the network that was quickly growing, so she sat at her kitchen table and wrote the first edition of The Beacon . The newsletter’s name and purpose were the same – to provide a light
through the darkness for people affected by breast cancer. Today, this magazine continues to share stories from around the network, and engage our members in conversations – whether about the latest in new drugs and treatments, advocacy wins, or upcoming events. The Beacon is distributed quarterly to over 80,000 subscribers. A TRUSTED SOURCE The trust and respect BCNA has gained over the years comes from our approach in translating the latest in clinical advice with a strong consumer lens and purpose. Since 2005, when we produced the first physical My Journey, each new iteration has evolved based on feedback from our network coupled with the latest health information and advice through strong partnerships with health professionals and the research sector. Today, My Journey is an app and website used by 24,000 people and contains tailored information based on your breast cancer diagnosis as well as other factors that may affect how you access treatment and support. Providing tailored information helps alleviate the ‘information overload’ experienced by many who are newly diagnosed, and ensures we are providing information that is both timely and relevant. INFORMATION PROVIDED HOW AND WHEN YOU NEED IT BCNA’s mission is to reach all Australians affected by breast cancer, in even the most isolated areas where we know access to care can be a challenge. Our suite
of digital resources, including webcasts and podcasts , helps people, particularly those living in rural and regional areas, to get the support they otherwise might not be able to access. Our website is a popular source of information and is visited by over 300,000 people every year. ONLY A PHONE CALL AWAY From the beginning, people have called BCNA for information and support, and to share their experiences. Our Helpline was compassionate and practical support to over 10,000 people every year, including family and friends of those diagnosed. ‘I feel heard, appreciated and not judged.’ – Helpline caller If you or someone you know has been diagnosed with breast cancer, or you’re a health professional looking for trusted resources, call BCNA’s Helpline on 1800 500 258 . PROVIDING SUPPORT IN MANY WAYS officially launched in 2001 and continues to provide In 2004, BCNA teamed up with Berlei to create the My Care Kit to provide a practical support to those who have undergone a mastectomy. My Care Kit is available free of charge to anyone in Australia who undergoes surgery for breast cancer. This year, we will deliver the 200,000th My Care Kit. For more information about My Care Kit and how to order yours, visit myjourney.org.au or call our Helpline on 1800 500 258 .
Everyone experiences shock when diagnosed, but as a man with breast cancer, there’s also a kind of stigma. A lot of men won’t talk about it, and I think suffer psychologically from the fact they have what’s known more commonly as a woman’s disease, which it’s not. I’ve tried to change that for other men through my work with BCNA, so other men don’t feel alone or like they can’t talk about it. – Harry, BCNA Member
Harry with his wife Yvonne
MEETING DIVERSE NEEDS Our growing network has helped us reach more people, hear their diverse experiences, and better understand and address their needs. We offer tailored resources for men with breast cancer, people living with metastatic breast cancer , First Peoples , people from LGBTIQ+ communities , those from culturally and linguistically diverse backgrounds and young women . SHARING EXPERTISE BCNA is fortunate for the many health professionals who share their expertise with our network. Our podcast series Upfront About Breast Cancer – What You Don’t Know Until You Do with clinical psychologist and breast cancer survivor, Dr Charlotte Tottman, helps address the gap in access to psychosocial support for those with breast cancer, especially for those in rural and regional areas who may experience further challenges in accessing these services. Listened to over 63,000 times since
psychological support, people living in rural and regional areas and even those who felt their post-treatment adjustment wasn’t a priority in the mental health system.’ – Dr Charlotte Tottman, Clinical Psychologist Season 2, What You Don’t Know Until You Do: Unlimited , is available now via bcna.org.au or wherever you get your podcasts.
being released, the first season covered many topics including dealing with the initial shock of diagnosis, impact on sexuality and intimacy, and fear of cancer recurrence. A second season has just been released. ‘The first series revealed a huge demand for lower-level ongoing support for those with chronic illness. It really filled an unmet need for people on waitlists for
ISSN 1834-5921
RAELENE AND LYN A dynamic duo
Stuart Diver THE INSPIRATIONAL
20 YEARS OF IMPROVEMENTS IN BREAST CANCER TREATMENTS
MANAGING LYMPHOEDEMA
METASTATIC BREAST CANCER Living well with
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 82 | APRIL 2018
20th Anniversary edition of The Beacon
Dr Charlotte Tottman (right) with Kellie Curtain at the SEN recording studio
Breast Cancer Network Australia
bcna.org.au
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
WHAT WE HAVE ACHIEVED SO FAR
T he Field of Women is BCNA’s most powerful and visible message and brings the statistics of breast cancer to life. In 1998, to launch BCNA, an inaugural Field of Women was planted on the lawns of Parliament House in Canberra with 10,000 Pink Lady silhouettes that represented the women diagnosed that year and 2,500 white silhouettes to remember the women we would lose. Since then, Mini-Field of Women tributes have been held in hundreds of locations across the country to raise awareness of breast cancer and provide support to communities. In 2005, we brought the Field of Women to life on the biggest stage – the MCG in Melbourne. Over 11,500 people wearing pink ponchos formed the Pink Lady silhouette in a moving and inspirational tribute. This moment catapulted BCNA into the spotlight and united the network in a powerful and meaningful way. CONNECTING PEOPLE
This month we are holding two information forums – Karratha and Bunbury, WA. To register visit bcna.org.au PARTNERING FOR CHANGE BCNA’s committed, long-term corporate partners have expanded our reach and provided the funding we need to keep innovating. Our Foundation Partner, Bakers Delight, and Major Partners, Berlei, Sussan and Red Energy, continue to support us because they truly believe in what we do and are committed to helping us support everyone affected by breast cancer. ‘We have franchisees and customers who have been diagnosed with breast cancer, so our connection to BCNA goes well beyond our partnership. Our relationship has thrived for more than 20 years because it’s not dependant on just one or two people – it really is a network of people helping each other.’ – Lesley Gillespie OAM, Bakers Delight Co-Founder ‘In 25 years’ time, my granddaughters will be reaching an age where breast cancer may come into their lives. If breast cancer is still here, if it hasn’t been eradicated or if we haven’t found a way to prevent it from happening, then I would hope that BCNA is still a haven that can be relied upon.’ – Lyn Swinburne AO, BCNA Founder ‘I want to see everyone, not just those with the strongest voices, getting the best care. I also want BCNA to continue to help those diagnosed to find each other and to feel a sense of shared understanding through the connections we foster.’ – Kirsten Pilatti, BCNA CEO
‘It’s incredibly powerful to stand together alongside others and, whilst acknowledging those who haven’t made it, say, “I’m grateful to be alive and stand here and celebrate.”.’ – Lyn Swinburne AO, BCNA Founder This year’s Field of Women will be held on 20 August. Buy your tickets at fieldofwomen.org.au CREATING MEANINGFUL CONNECTIONS Our network is formed and strengthened by connecting people and communities affected by breast cancer. Our members benefit from connecting with others who understand what they are going through. Whether it’s through our Online Network , attending a BCNA Information Forum or reading personal stories in The Beacon , these connections can make a real difference to people’s experiences and make them feel they are not alone. To join the Online Network, visit onlinenetwork.bcna.org.au
The amazing members were so open and welcoming. They were honest with
their support, advice and suggestions. This network saved me from being in a big black hole feeling all alone and helpless. I have made life- long friends. – Online Network user
BCNA’s Living Well with breast cancer Information Forums
COMING TOGETHER TO CONNECT, LEARN AND SHARE Connecting with our network face to face around the country is an important way that we provide information and support and hear firsthand our members’ experiences. This has been the case since 1998, when 300 women from across Australia gathered at Old Parliament House in Canberra for the first National Breast Cancer
Conference for Women. Over the past 25 years, BCNA’s conferences, summits and information forums have provided face-to-face support to over 18,000 people. ‘Leading up to the Information Forum in Port Lincoln, I hadn’t felt emotionally supported since my diagnosis. Listening to others share their stories, even though they were on different paths, allowed me to feel that my feelings and emotions were normal.’ – Rachael, BCNA Member
THE RIPPLE EFFECT Local community organisations are often the heart of a personal support network that extends beyond the immediate family, close friends and medical treatment team throughout someone’s breast cancer experience. For 25 years, local community groups have been connecting with BCNA for ways to show and extend support to those around them. Some host PLAY4BCNA Pink Sports Days or Pink Lady events. Others participate in activities like fun runs or head shaves. Every dollar raised for BCNA helps us continue to be here every day for those who need us. To find out more about how your community can get involved to support BCNA and those around you, visit bcna.org.au
THERE IS SO MUCH MORE TO DO!
BCNA remains committed to being a strong network that continues to evolve in response to the needs of those affected by breast cancer in Australia. We know that in another 25 years’ time, this may be very different, in anticipation of further advances in prevention, improved services to support living with and beyond breast cancer, and innovative new ways that we access health information. We asked BCNA’s Founder and CEO for some thoughts on where they see BCNA in 25 years’ time:
2014 Field of Women, Melbourne
Kirsten Pilatti and Lyn Swinburne AO
Breast Cancer Network Australia
bcna.org.au
HOW BCNA CAN SUPPORT YOU
HELPLINE If you or someone you know has been diagnosed with breast cancer, call BCNA’s free and confidential Helpline on 1800 500 258 or via email at helpline@bcna.org.au MY JOURNEY My Journey is a free information resource that provides you with reliable and up-to-date information tailored to suit your situation. Download the My Journey app or visit myjourney.org.au ONLINE NETWORK Connect with others who understand what you’re going through on BCNA’s online network. Join at onlinenetwork.bcna.org.au INFORMATION FORUMS BCNA presents Information Forums across rural and regional Australia for people diagnosed with breast cancer and their support people. Hear about upcoming events at bcna.org.au DIGITAL RESOURCES BCNA has a range of digital resources covering a variety of topics that share insights from health professionals and those with a lived experience and provide access to up-to-date information. Listen or view at bcna.org.au PODCAST LIBRARY Upfront About Breast Cancer provides advice, stories and support. Listen via bcna.org.au or wherever you get your podcasts. MY CARE KIT My Care Kit is available to those who undergo surgery for breast cancer and contains a specially designed Berlei bra and soft form/s, provided through a partnership with Berlei. Contact BCNA’s Helpline .
HELPLINE 1800 500 258 BCNA.ORG.AU
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