Case for Support 2024–25
Breast Cancer Network Australia Australia’s Leading Breast Cancer Consumer Organisation
Recent improvements in breast cancer survival represent a great success of modern medicine. However, we can't ignore how
many patients are being systematically left behind. Professor Charlotte Coles University of Cambridge and Cambridge University Hospitals NHS Foundation Trust
Case for Support 2024
Table of contents
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Executive Summary
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About BCNA
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Key facts about breast cancer
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What we do
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What guides us – BCNA's Strategic Pillars
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How your investment can help people impacted by breast cancer
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Voice
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BCNA continues its sector-leading advocacy to achieve better breast cancer outcomes and support Our goal: Risk stratification is prioritised for people with high risk of breast cancer Our goal: People with an inherited high risk of breast cancer can access life-saving preventative surgery Our goal: Stronger evidence-based approaches for local and global cancer reforms Our goal: People with metastatic (advanced) breast cancer are not hidden Our goal: Diverse consumer voices help to improve cancer experiences for others
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Information and support
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BCNA is Australia’s trusted source of information that empowers people’s decision making Our goal: Practical support and care for every person diagnosed with breast cancer Our goal: Provide free, tailored resources when they’re needed most Our goal: Enhance online engagement experiences of people affected by breast cancer Our goal: Increase health professional engagement with BCNA
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Connection
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B CNA is a community of knowledge and support of those with a shared experience of breast cancer Our goal: Strategically position BCNA for the next 5 years Our goal: Connect with local communities to raise awareness and support Our goal: Respond to emerging priorities that matter to our network
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Pink Lady Match 2024
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Our goal: Support and grow our valuable volunteers
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Funding the future
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Breast Cancer Network Australia
Case for Support 2024
Key facts about breast cancer BREAST CANCER STATISTICS IN AUSTRALIA 2024
About Breast Cancer Network Australia
Executive Summary
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20,973
will be diagnosed with breast cancer. This means that approximately 21,194 people will be diagnosed with breast cancer in Australia in 2024.
In 2024, it is predicted
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that women men
Today, 58 Australians will be diagnosed with breast cancer. This equates to 21,194 people receiving a breast cancer diagnosis in 2024 alone. Given the growing and ageing population, this number is expected to increase each year and may exceed 25,000 in the next five years. It is estimated that over 240,000 people are living with and beyond breast cancer, having received a diagnosis between 1982–2017 1 . Despite many advances in research and treatment, breast cancer is still one of the leading causes of death and disease burden for women. Approximately 80 per cent of new cases are in females aged 50 or older, but anyone can receive a diagnosis – men, young women, people from diverse communities. Breast cancer has a profound, lifelong impact on the physical, emotional, and financial wellbeing of someone who is diagnosed and their loved ones. These impacts are disproportionately higher for First Nations, LGBTIQ+, culturally diverse and regional and rural communities, who continue to experience poorer health outcomes. As Australia’s leading breast cancer consumer organisation, Breast Cancer Network Australia (BCNA) is proud of its role as an independent, trusted leader in the cancer sector. Corporate and philanthropic investment partnerships make up over 80 per cent of our funding. Without this support, we could not continue to deliver free programs and services that impact every person diagnosed with breast cancer, including our network of over 180,000 members across the nation. This Case for Support presents our priorities for the next 12 months and the opportunities to partner with us. Together, we can continue to support, represent, and be the voice for Australians impacted by breast cancer.
When Lyn Swinburne AO founded BCNA in 1998, her vision was to ensure all Australians affected by breast cancer receive the best care, treatment, and support. That vision remains our priority 25 years on. We are committed to focusing on the personal impact of breast cancer by providing free and timely information and support and using the collective experience of thousands of Australians across our network to advocate for a strengthened health system. Our collaborative leadership with policy makers, researchers, and health professionals improves quality of life and health outcomes for people impacted by breast cancer and contributes to patient- centred care across all cancers.
1 7 FOR WOMEN
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THE RISK OF BEING DIAGNOSED
people will be diagnosed with breast cancer every day. 58 ON AVERAGE,
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WITH BREAST CANCER OVER A LIFETIME IS
The incidence rate of women and men being diagnosed with breast cancer in Australia is increasing;
however the mortality rate from breast cancer is decreasing.
Breast cancer is the most common cancer diagnosed in Australia in women. It is estimated that breast cancer will account for approximately 28 PER CENT of all new cancers in women in 2024.
Australia has one of
Increasing survival is due to earlier diagnosis through screening and improved treatments.
the best breast cancer survival rates in the world.
The chance of surviving at least 10 years (10-year relative survival) is 87.4 per cent .
The chance of surviving at least five years (five-year relative survival) has increased from 78 per cent in 1990-1994 TO 92 per cent in 2016-2020 .
PEOPLE LIVING IN RURAL & REMOTE AREAS, YOUNGER
In 2020, we estimate there were at least 10,553 PEOPLE living with metastatic breast cancer in Australia. We do not know for sure because they are not counted by our cancer registries.
(PRE-MENOPAUSAL) WOMEN, MEN, FIRST
PEOPLES & PEOPLE WITH LOW SES STATUS OFTEN HAVE POORER OUTCOMES.
If ever I'm in need of guidance or simply feel alone through my diagnosis, I know I can turn to the BCNA family for information and support. It is the most
In 2024, it is estimated that will die from breast cancer. That means 9 Australians die from breast cancer every day. & 3,272 women 36 men
Breast cancer accounts for 14.1 PER CENT of all cancer deaths in Australian women and is currently the second leading cause of cancer death in Australian women after lung cancer.
accepting and loving community I have ever been part of. Rebecca
Approximately 5-10 PER CENT of breast cancers are due to a strong family
THE RISK OF BEING DIAGNOSED WITH BREAST CANCER INCREASES WITH AGE.
THE FUTURE
Given the increasing and aging population, the number of people diagnosed, with breast cancer is expected to increase each year.
APPROXIMATELY 80 PER CENT OF NEW CASES OF BREAST CANCER ARE IN WOMEN AGED 50 OR ABOVE.
history or genetic mutation, such as BRCA1 or BRCA2.
1. Breast Cancer in Australia Statistics – Cancer Australia, 25 January 2024
2024 statistics from: Australian Institute of Health and Welfare (2024) Cancer data in Australia, AIHW, Australian Government, accessed 26 August 2024. https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia
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Breast Cancer Network Australia
Case for Support 2024
How your investment can help people impacted by breast cancer
What we do
Support services • Helpline • Online Network • My Care Kit
Information and resources • Web-based Information and Resources Hub • My Journey • Service Finder • Podcasts and webinars
OUR GOALS
INVESTMENT
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Voice Risk stratification is prioritised for people with high risk of breast cancer People with an inherited high risk of breast cancer can access life-saving preventative surgery
$35,000
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$50,000
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Stronger evidence-based approaches for local and global cancer reforms $75,000
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People with metastatic breast cancer are not hidden in plain sight
$50,000
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Consumer engagement • S eat at the Table Consumer Representative program • Lived Experience Reference Groups • Review and Survey Group
Sector Leadership and Advocacy • Informing national and global policy reform • C ontributing to breast cancer research through strong consumer engagement • L eading national initiatives to improve timely access to new treatments
Diverse consumer voices help to improve cancer experiences for others
$100,000
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Information and support Practical support and care to every person diagnosed with breast cancer $125,000
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Provide free, tailored resources when they’re needed most
$390,000
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Enhance online engagement experiences of our members
$250,000
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Increase health professional engagement with BCNA
$140,000
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Connection Strategically position BCNA for the next five years
What guides us – BCNA’s Strategic Pillars
$70,000
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Connect with local communities to raise awareness and support
$110,000
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• We respond to the needs of consumers and our network by focusing on providing free and trustworthy information and resources. • We provide evidence-based information and support that empowers individuals affected by breast cancer to make the best decisions for themselves and those they care for. CONNECTION that creates belonging and community • We enable a sense of community for our network, through connection to others going through a similar experience, opportunities to share their lived experience with the wider community, the strength of the BCNA network and the information and resources that make a difference in an individual’s care, experience, and wellbeing. • We strive to ensure everyone in our network is supported and will never feel alone.
THE VOICE that harnesses the power of lived experience • We are the sought-after voice on topics relating to breast cancer policy, research and service development through our strong partnerships with governments, health service providers, researchers and the broader community. We ensure decisions and practice are grounded in consumer engagement and our impact extends to cancer policy overall. • We are consumer-led and work in partnership with our network to improve the health system for the benefit of every individual affected by breast cancer. Many of our advocacy achievements go on to support the entire cancer community. INFORMATION AND SUPPORT that makes a positive difference to experience and health outcomes • We are recognised as a trusted, accessible, and consumer-led source of support.
Respond to emerging priorities that matter to our network
$120,000
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Support and grow our valuable volunteers
$90,000
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Case for Support 2024
Breast Cancer Network Australia
Voice
BCNA continues its sector-leading advocacy to achieve better breast cancer outcomes and support
Advocacy has always been at the heart of what we do at BCNA. Our voice has influenced local and national solutions, as well as global policy reform. It has led to fundamental changes in the delivery of breast cancer care. We are the go-to consumer voice on breast cancer for policy makers, researchers and practitioners. We are recognised nationally and internationally as an organisation that improves breast cancer outcomes and equity through advocacy that harnesses the diverse voices of those with a lived experience. Through our voice, networks, and the stories of those we represent, we work to ensure that – no matter who you are or where you live – people affected by breast cancer have access to the very best care. Our landmark campaigns for Herceptin (trastuzumab) in 2001 and 2006 set a powerful precedent. Building on this legacy, we've secured government subsidy for more crucial breast cancer drugs that have drastically reduced costs of treatments for some from $10,000 to $15,000 every three months to a more affordable level, improving access and extending lives. Responding to the needs identified by our network, we are focussed on reducing the financial impact of a breast cancer diagnosis, improving access to live- saving and life-extending drugs and better cancer care, enhancing quality of life and improving outcomes through increased prevention and early detection.
In 2025, we are redoubling our commitment to positively influence cancer policy, practice, and treatment. Our expert policy and advocacy team will engage across our national consumer network and key stakeholders, ensuring our planned advocacy actions remain relevant, targeted, and bipartisan. This approach allows us to stay focused on the issues that matter most to people impacted by breast cancer, while maintaining independence from government, the for-profit pharmaceutical industry, and the broader biomedical sector.
Vicki Durston, Director Policy, Advocacy and Support Services, BCNA at the press conference announcing the listing of Enhertu for the treatment of a new sub- type of metastatic breast cancer, HER2-Low, on the Pharmaceutical Benefits Scheme (PBS). September, 2024
When BCNA speaks, people listen. Patricia Edgar AO Founding Chair BCNA
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Breast Cancer Network Australia
Case for Support 2024
Case study: Extending the lives of people with advanced (metastatic) breast cancer
Our goal: Risk stratification is prioritised for people with high risk of breast cancer
This has had significant benefits for an estimated 1,700 Australians with HER2- low metastatic breast cancer, including dramatically reduced treatment costs and the potential for extended quality of life, as Enhertu is estimated to extend life by an average of 23 months. Our success with Enhertu in 2024 demonstrates the ongoing importance of consumer-led advocacy to improve breast cancer care in Australia and ensure patients can access innovative, life-prolonging treatments. My heartfelt thanks for all that you and the team continue to do – and achieve – for people like me. Congratulations on enabling so many to now, and in the future, access Enhertu through the PBS.
Our advocacy focuses on ensuring equitable access to supplemental screening for those at high risk, addressing regional disparities in screening technology and infrastructure, and pushing for the adoption of risk- based screening criteria that account for factors like breast density and family history. Through these efforts, we are championing the integration of advanced screening technologies and AI to overcome workforce shortages, while improving early detection, outcomes, and quality of life for all Australians impacted by breast cancer. How your investment can help In 2025, our response to the Australian Government’s breast screening review will draw from extensive consultation with our consumers and key stakeholders about the impact and benefit of proposed changes. We have seen the power of public calls for action in our previous advocacy efforts. We will use our network’s voice and collective policy expertise, as well as our contributions to research to ensure high-risk individuals are able to access services regardless of where they live or their background.
Enhertu (trastuzumab deruxtecan) is an innovative treatment for HER2-low metastatic breast cancer. However, its high cost — between $10,000 to $15,000 every three months — made it inaccessible for many Australians who could potentially benefit from it to prolong their lives. BCNA recognised the urgent need to make Enhertu affordable and accessible. Our advocacy strategy included consulting with our consumers about the impact of the drug and the financial burden of its cost, engaging with medical professionals to compile evidence of Enhertu's efficacy, and collaborating with pharmaceutical and cancer sector stakeholders. We then communicated directly with the Pharmaceutical Benefits Advisory Committee (PBAC) and government decision-makers to encourage Enhertu's inclusion on the Pharmaceutical Benefits Scheme (PBS). In early 2024, we submitted a comprehensive report to the PBAC, incorporating patient experiences and clinical data. We then mobilised our consumer network to participate in the PBAC's public consultation process and engaged in media advocacy to raise public awareness about the importance of accessing Enhertu. The results paid off. In April 2024, the PBAC recommended listing Enhertu on the PBS for HER2-low metastatic breast cancer. We then advocated directly to the Federal Minister for Health for the speedy listing of Enhertu on the PBS once PBAC had made its recommendation so that people would not have to wait many months to access the drug. On 1 September 2024, Enhertu became available via PBS subsidy for people with metastatic HER2-low breast cancer.
Breast cancer doesn't discriminate, but some face higher risks than others. Early detection through risk stratification, including screening is crucial in reducing the risk of getting breast cancer and preventing advanced- stage diagnoses (metastatic breast cancer) where longevity and quality of life are severely compromised. One in seven women in their lifetime will be diagnosed with breast cancer. Currently, Australia's public BreastScreen program offers free services based primarily on age, with women over 50 proactively invited to participate. However, this approach overlooks critical risk factors beyond age. Genetic conditions, breast tissue density, and lifestyle factors can significantly increase an individual's lifetime risk of developing breast cancer. We are at the forefront of advocating for a more contemporary, risk-based approach to managing risk and preventing breast cancer through early interventions such as medication and appropriate screening approaches. Through our extensive consumer network and national profile, we are promoting greater awareness about eligibility for breast screening from the age of 40 to increase participation and promotion of the use of risk stratified digital tools like iPrevent. BCNA is leading the charge in advancing breast cancer screening and risk stratification through both our research partnerships and strategic advocacy efforts. We are deeply involved in shaping the national conversation, working alongside BreastScreen Australia and Cancer Australia in their current review.
Investment opportunity: $35,000
Glenda, BCNA Metastatic Breast Cancer Lived-Experience Group member
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Breast Cancer Network Australia
Case for Support 2024
Our goal: People with an inherited high risk of breast cancer can access life-saving preventative surgery
Our goal: Stronger evidence-based approaches for local and global cancer reforms
Approximately 5-10% of breast cancers are linked to inherited genetic conditions. Some individuals face up to an 80% lifetime risk of developing breast cancer. Preventative breast surgery (mastectomy) can significantly reduce this risk, but access is severely limited. Our 2021 Breast Reconstruction in Australia report also highlighted the need for better access to breast reconstruction following mastectomy. This vital advocacy issue has significant potential impact as more Australians are becoming aware of their hereditary cancer risk through advanced genetic testing and counselling. In the public health system, these surgeries are not classified as urgent, leading to unacceptable wait times of a year or more. Tragically, some people with inherited genetic risks are diagnosed with breast cancer while they are waiting for their preventative surgery. Surgery delays have significant impacts on mental health and quality of life. For those seeking alternative pathways through the private health system, surgery can cost over $20,000, making it an unfeasible option for many.
With our focus on reducing risk of breast cancer, we are leveraging our network and collaborations with others in the sector to push for the reclassification of preventative surgeries and improved access. We are leading advocacy through our partnership with the Australian Access to Breast Reconstruction Collaborative Group, with Breast Surgeons ANZ and others to improve access for those at high risk who are seeking surgery that reduces their risk. We will continue to do this nationally. How your investment can help Better access to preventative or risk reducing surgery will result in fewer breast cancer diagnoses for those with higher genetic risk. With your support, we can focus on our collaborative partnerships and the advocacy activities that will lead to improvements in timely access to risk reducing strategies for those that need them.
As a consumer-driven organisation, we are uniquely positioned to lead sector collaboration and share learnings that improve outcomes for people impacted by breast cancer and other cancers. In the past year, we have showcased our successes in advocating for more equitable cancer care, delivering consumer-led initiatives, and creating research partnerships at major sector events including the Clinical Oncology Society of Australia’s (COSA) annual scientific conference, the Multi-Association Supportive Service Conference (MASSC), and the Cancer Nurses Society of Australia. Our presentations, particularly those by trained consumers, build health professional and researcher knowledge, encourage collaboration with consumers and raise our profile as a leader in consumer-led advocacy. Our presence at these events has promoted our work in co-design with consumers in the development of our member and health professional surveys, the utilisation of our Helpline and other resources that lead to more optimal cancer care. We have built strong partnerships with leading Australian universities, addressing issues like First Nations people's fear of cancer recurrence, and informing new models of cancer care. Our Metastatic Breast Cancer Roundtable and Roadmap highlights our ability to lead cross-sector collaboration in the broader cancer community. It also ensures lived experiences are represented in clinical practice, research and policy decisions. Globally, we play a key role as President of the European-based Advanced Breast Cancer Global Alliance. This allows us to share Australia's progress in MBC advocacy and learn from worldwide best practices. We also contribute to initiatives that improve the lives of those impacted by breast cancer in lower socio- economic countries, in partnership with the World Health Organisation. This cements our position as a respected international voice.
Continuing our strong presence at national and global forums enables us to actively contribute to evidence-based approaches in cancer care. Our consumers and staff also contribute to research and benefit by learning about international approaches, establishing new shared learning networks. Our broader advocacy and content priorities can then match emerging research and ideas about innovative supportive care tools and new treatments. How your investment can help Over the next 12 months, we plan to expand our conference participation with targeted presentations and submissions, and dedicated exhibition booths that raise awareness of our services and our leadership role. Upcoming national opportunities include: • International Breast Cancer Conference – Leura, NSW, in October 2024. The focus will be on promoting our services and strengthening relationships with Australian and global cancer sector leaders. • M ammographic Density Conference – Melbourne, VIC, in October 2024. Aligning with our advocacy efforts around improving access to breast screening for people at high risk of breast cancer, including breast density. • C OSA Annual Scientific Meeting – Gold Coast, QLD, in November 2024. • C OSA Survivorship Conference – Melbourne, VIC, in March 2025. • C ancer Nurses Society of Australia – Adelaide, SA, in June 2025. We are also seeking to attend the international conference of the Multinational Association of Supportive Care in Cancer (MASCC) in Seattle USA in June 2025, with a focus on informed decisions in supportive cancer care.
Investment opportunity: $50,000
Investment opportunity: $75,000
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Breast Cancer Network Australia
Case for Support 2024
Case study: Consumer-led advocacy for cancer data changes in Australia
Our goal: People with metastatic (advanced) breast cancer are not hidden
How your investment can help Building on the success of our metastatic breast cancer issues paper and Roadmap report, we will continue to oversee the implementation of the Australian Cancer Data Alliance to be able to report on MBC and ultimately understand how many people are living with MBC in each state and in Australia. We will also promote the Roadmap internationally and monitor updates about data improvements that impact our consumers and stakeholders. The eyes of the world are watching for the outcomes of our work in Australia.
In January 2024, the Prime Minister announced $1.5 million in support of our priority recommendation from the roadmap report to establish a new Australian Cancer Data Alliance, with BCNA included as a member. The Alliance brings together state and territory cancer registries, led by the Australian Institute of Health and Welfare and Cancer Australia. The Alliance will accelerate progress to support the development and implementation of a cancer data framework. It will ensure state and territory governments work towards improving cancer data collection, analysis, and insights that inform methods to report stage and timing of cancer recurrence for all cancers. This will be a game changer for cancer reporting. Our leadership has not only brought national attention to the needs of people living with MBC but has also set in motion systemic changes that will improve care planning, resource allocation, and treatment development for people living with all types of metastatic cancer. By bridging the gap between decision-making and lived experience, we have made sure that those with MBC are prioritised, heard, counted, and supported.
For decades, people living with metastatic breast cancer (MBC) have been under- represented in Australia's cancer data. This lack of information has hindered efforts to plan and provide appropriate care, allocate resources, and develop targeted treatments for those with MBC. Knowing how many people live with MBC is vital for resource allocation, health system planning, incentivising clinical trials, medication subsidies, and supportive care. In 2022, we worked with a group of consumer representatives to advocate for change to improve the collection and reporting of MBC data across Australia. Together, we published our inaugural national issues paper Making Metastatic Breast Cancer Count , highlighting the urgent need for consistent MBC data collection in cancer registries. Following the release of our issues paper, we convened a national stakeholder roundtable with consumers, academics, the cancer sector workforce and policy makers in August 2023 to understand what changes needed to be implemented. Our national roadmap, Time to Count People with Metastatic Breast Cancer – A Way Forward , was published in November 2023. It outlined recommendations to improve cancer data collection and reporting for people with MBC.
Metastatic breast cancer (MBC) is when breast cancer has spread beyond the breast tissue to other parts of the body. It is treatable but not currently curable and is a life-limiting disease. In our 2022 issues paper, Making Metastatic Breast Cancer Count , we estimated there were at least 10,553 people living with MBC in Australia in 2020. The actual figure is unknown due to inconsistent data collection across every state and territory. Having no national picture about people living with MBC means their voices have often been unheard, misunderstood, or disregarded. Since 1998, we have advocated for improvements in Australia's cancer data to address the complex healthcare needs of people living with MBC and their right to be counted. By launching our metastatic issues paper in 2022, we redoubled our advocacy in this space. The result is the Australian Cancer Data Alliance. This collaborative initiative brings together researchers, clinicians, BCNA consumers and policymakers to improve cancer data collection, analysis, and sharing. This is a world-leading initiative with just one other country currently reporting MBC data. We are proud to have played a significant part in this truly world leading work that will benefit people with all types of metastatic cancer. It demonstrates the strength of our BNCA network and its ability to harness the consumer voice to influence change. Today we are continuing to work in partnership with our consumers who are living with MBC to raise awareness and understanding that their needs are often more complex and currently unmet. Their voices are reflected in everything we do including our range of specialised resources.
Investment opportunity: $50,000
The 'Making Metastatic Breast Cancer Count' panel discussion, Parliament House Canberra, August 2023
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Breast Cancer Network Australia
Our goal: Diverse consumer voices help to improve cancer experiences for others
We know that breast cancer impacts groups in the community in different ways. We are committed to engaging with people with different lived experiences of breast cancer. Through their personal insights and stories, we ensure that cancer policy, research, and services lead to a better experience for others. Consumers also benefit by developing skills in research and data, building confidence to contribute to future projects. Our recently established Consumer Advisory Group elevates consumer leadership within BCNA by creating a formal role for our consumers in providing strategic advice that supports governance and decision-making. The Seat at the Table program, our flagship initiative, trains consumers to represent diverse voices in government policy, stakeholder engagement, research, and advocacy. We also appoint Consumer Representatives to organisational working groups and projects to ensure lived experiences are considered across all aspects of our work.
Lived Experience Reference Groups focus on specific populations experiencing higher unmet supportive care needs, such as those with metastatic breast cancer, regional and rural residents, and people from LGBTIQ+ communities. Members of our metastatic reference group, for example, played a crucial leadership role in our national roundtable and roadmap report to improve collection and reporting of cancer data across Australia. Our Review and Survey Group plays a pivotal role connecting research outcomes to lived experiences of breast cancer. It offers a flexible option for people affected by breast cancer to contribute their insights to various research projects though online surveys, focus groups, reviewing clinical trial protocols, and providing feedback on new breast cancer resources. Outcomes from research projects involving our consumers are often presented at conferences across the cancer and wider health sector, amplifying the impact of their involvement.
I found the training highly worthwhile. It reinforced my understanding of the purpose of BCNA and the role of Consumer Representatives, together with my interest and determination to continue to be involved and to contribute. BCNA Consumer Representative
How your investment can help We will implement an audit of current Review and Survey Group membership to make recommendations for future recruitment that focuses on diverse views and experiences. By expanding and enhancing the role of our Review and Survey Group, we can encourage more consumer-informed breast cancer research. Co-designing research with consumers ensures that projects focus on the issues that matter most to people impacted by breast cancer, and ultimately result in better treatment and support outcomes. To keep building on the success of our consumer network, we need to invest in
their education and development. We want to invite up to 15 members of our broader consumer network, including our Lived Experience Reference Groups, to attend our national consumer workshop at the COSA Cancer Survivorship Conference in March 2025. By representing BCNA at this event, our consumers become collaborative leaders with us to speak on behalf of all people impacted by breast cancer and demonstrate the value of co-design. It also creates an opportunity for peer-to-peer connection, shared learning, and will help build our next generation of consumer leaders.
Consumer Advisory Group strategic advice to support governance and decision making
Seat at the Table Formal training program for consumer representatives
Lived Experience Reference Groups advice from unique perspectives (LGBTIQ+, rural and regional, metastatic breast cancer)
Review and Survey Group research project engagement and participation
Investment opportunity: $100,000
Consumer Network over 180,000 members
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Breast Cancer Network Australia
Case for Support 2024
Information and Support
Our goal: Practical support and care for every person diagnosed with breast cancer
BCNA is Australia’s trusted source of information that empowers people’s decision making
For 20 years, we have worked alongside Berlei to deliver our My Care Kit free of charge to anyone who undergoes surgery for breast cancer. The Kit serves as both a practical aid and a critical first step to connect people to BCNA. Together, we have distributed more than 220,000 My Care Kits across Australia. Each My Care Kit contains a specially designed post-surgery bra to aid recovery in the first 12 weeks following surgery and provide comfort and support during radiation treatment. This year, the bra has been re- designed with the input of our consumers and health professionals, for greater comfort and support. The My Care Kit is often someone’s first interaction with BCNA – a gift from those who understand – and an entry point into the full range of BCNA services. We work collaboratively with breast care nurses and other health professionals across Australia to extend the Kit’s reach. With over 20,000 people diagnosed with breast cancer in 2023, we sent over 15,000
kits to people across Australia. A group of dedicated BCNA volunteers assist with packing and distribution. Over the last few years, we have seen a 34% increase in the number of requests for a My Care Kit through our Helpline service – both from people who have been diagnosed and health professionals on behalf of their patients. How your investment can help The cost of sending our Kits to people in regional and remote communities can be expensive, but it may be the only way someone can access personalised support when they most need it. We want to make sure that a My Care Kit is in the hands of every person as early as possible following their diagnosis and surgery. By funding our national postage costs, you’ll be sending a message of support to let those diagnosed know that they’re not alone.
By offering free, tailored information, we're aiming not only to educate people — but empower them. We're providing tools and information which enable people to become active participants in their own breast cancer care. With our resources, every person can make informed decisions about their treatment and receive the support they need. Our 2023 national survey of over 2,500 consumer and health professionals confirmed that there is high trust in BCNA’s resources but awareness of the full suite available could be developed further. Our focus for 2025 is on building this awareness and ensuring referral pathways into BCNA continue to grow, while also providing tailored information that reflects diverse experiences.
Investment opportunity: $125,000
My replacement bra arrived yesterday. Thanks for going the extra mile for me. I now have a bra that fits and is comfortable. I appreciate your effort and that Berlei is making this donation to women with breast cancer.
My Care Kit recipient
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Breast Cancer Network Australia
Case for Support 2024
Our goal: Provide free, tailored resources when they’re needed most
Our goal: Enhance online engagement experiences of people affected by breast cancer
How your investment can help To meet expected increases in website usage and network growth, in the next 12 months, we plan to redesign critical online tools including the Symptom Tracker, which helps people identify and monitor symptoms from treatment and more confidently manage them. We will also improve how people search and navigate to different resources and topics through our Information and Resources Hub, ensuring they can quickly locate our updated online content. We will also improve accessibility and inclusivity of our tools to support our diverse user groups. Health professionals are a critical part of our network. This project will also improve their online experiences with BCNA, including the design of new ways to access resources, order My Care Kits and provide patient referrals. By integrating various digital systems, we will improve the experience for people who engage with us in multiple ways, allowing us to reallocate time and funds to increased support and information services for those diagnosed.
We are changing how we use technology to better serve those affected by breast cancer. We are making our website easier to use, more accessible and personalising the way people experience our resources, matching information to each person's preferences and needs. Our digital experience project is a three-year commitment to continually improve user experience by offering access to everything people need and use at BCNA in one place, with one login and a simplified sign-on experience. This includes enhancements to our Online Network, a peer-to-peer support service that has over 20,000 users and many special interest chat groups, as well as an enhanced My Journey that provides tailored information to everyone, no matter where they are on their journey – from someone who has been diagnosed with breast cancer to someone living with metastatic disease, a carer, or a family member. Our goal is to streamline access to online information and have members determine the type of information and level of engagement that suits them.
Our 2023 national survey confirmed our reputation as a trusted source of breast cancer information. However, our members told us they also want more tailored content that reflects their diverse experiences. The projects below respond to this feedback. Our content is critically integrated with our policy and advocacy goals. To support our current advocacy efforts for preventative surgery and high-risk/genetic factors, we are prioritising a new suite of text, video and illustrative resources about breast reconstruction that will be available in early 2025. The work is being co-created with clinical experts and people with lived experience of breast cancer. Over the next 12 months, we will be updating our other breast cancer information resources to better meet our consumers’ needs. We are developing more lived experience insights and stories to strengthen connections across our member network. The use of videos and other interactive
media makes complex and often challenging content easier to understand. We’ll also be offering alternative formats like telephone and text for people with different preferences. This multi-channel approach ensures that people can access resources that best suit their needs, maximising our reach while providing a tailored experience. How your investment can help To ensure our content remains relevant and useful, we are planning to co-design content with our members and users by involving them in research and evaluation activities on topics they have identified; such as breast reconstruction, treatment options and managing the side effects of treatment, including physical and emotional support needs.
Investment opportunity: $390,000
Investment opportunity: $250,000
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Breast Cancer Network Australia
Case for Support 2024
Our goal: Increase health professional engagement with BCNA
The Australian Cancer Plan calls for more specialised, cohesive cancer care through building of a world-leading cancer workforce. Continuing to collaborate with health professionals will enable us to strategically influence the outcomes of these national priorities and ensure they translate to person- centred care.
The results of our 2023 experience survey showed just how vital health professionals are to BCNA. Not only do they connect people to our resources; they also extend the reach of our services across their local communities and health sector networks and are vital partners in the development of BCNA’s evidence-base information. We are launching a new engagement strategy to work more closely with health professionals, recognising the value that health sector expertise brings when we are working to advocate for improvements alongside governments and other cancer organisations. It will also encourage opportunities to co-design and develop specialist resources in partnership with consumers to address emerging information and support needs.
How your investment can help Over the next 12 months, we will be
implementing the first phase of our health professional engagement strategy. These initial steps will shape future plans to deliver online enhancements specially for health professionals. Dedicated staff resources will help to coordinate efforts across both programs of work and lead engagement activities with health professionals across the sector.
Investment opportunity: $140,000
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Breast Cancer Network Australia
Case for Support 2024
Connection
Our goal: Strategically position BCNA for the next 5 years
BCNA is a community of knowledge and support of those with a shared experience of breast cancer
We are reaching the end of our current Strategic Plan (2020–2025) and are turning our attention to our next phase of planning. With the rapidly evolving cancer landscape, we want to be clear about how to employ our resources and target our efforts to position BCNA for the future. We will engage with consumers and other stakeholders, supported by consultants to drive the development of our strategy and set out a comprehensive and well-structured vision about what we want to achieve and how we will do it. Over the last few years, we have seen the opportunities and challenges presented in the release of the first Australian Cancer Plan, advances in research, workforce shortages, innovative healthcare delivery, and the need for more personalised patient care. With increasing breast cancer prevalence, improving survival rates and drugs that can prolong life, we will be servicing a growing network in the future.
By investing in strategic planning and consultation and placing our members at the centre of this process, we are building a stronger, sustainable, and more responsive organisation that demonstrates impact and better supports Australians affected by breast cancer for years to come. How your investment can help Strategic planning consultations with members, consumer leaders, staff, and other key stakeholders from the sector will ensure we reflect on our achievements to date, consider the data from our own services and those of the sector, identify unmet needs and use these insights to identify future actions that will deliver the greatest impact for Australians affected by breast cancer. We aim to have the Strategic Plan 2025-30 finalised by May 2025.
Breast cancer affects not just individuals but entire communities. This year, over 21,000 people are expected to receive a breast cancer diagnosis in Australia, creating a ripple effect that touches families, workplaces, and local networks. A diagnosis often leaves people feeling isolated and unsure where to turn for support. BCNA seeks to be that place where people with a shared experience connect and support each other while contributing their voice to making a breast cancer experience better for those diagnosed in the future.
Investment opportunity: $70,000
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Breast Cancer Network Australia
Case for Support 2024
Case study: Kansas’ breast cancer diagnosis
Our goal: Connect with local communities to raise awareness and support
“Chemotherapy was not the nicest thing I have done, but I was lucky in that being young meant I dealt with side effects relatively well,” Kansas says. “I was still able to work and exercise lightly throughout and having had a lumpectomy meant less recovery time than there would be for a mastectomy.” Having been through this journey at 24 years old, there is one message Kansas wants to share with anyone who believes they are too young for a breast cancer diagnosis. “I want to advocate for younger women to be able to get checked earlier and not be dismissed because of their age or because there is no family history,” she says. “If you feel there is something wrong with your body then trust that instinct – you should be able to access the appropriate testing – so always keep advocating for yourself!” While being diagnosed with breast cancer in her 20s was never something Kansas could have imagined, it has given her a new and powerful philosophy on life. “Life is short, so I am grateful to see a sunrise or a sunset, taking the time to listen to people, and just to appreciate how beautiful life really is,” she says. “I have had to learn to manage myself in ways I never imagined – and through situations and feelings I didn't think I would have to – but I am really proud of how I held myself, still smiling, still going to work to support families and young people.”
Kansas was watching the Pink Lady Match which prompted her to get a lump checked and led to her breast cancer diagnosis. At just 24 years old, Kansas was enjoying the start to her career as a social worker and was on the verge of beginning her Masters degree. “It was a complete shock as I don't have any family history of breast cancer, nor did I have any of the gene mutations,” Kansas says. While Kansas was a regular self-checker thanks to breast cancer awareness campaigns, when she identified a lump in February 2021, she decided just to “keep an eye on it”. “About a week later I tore my ACL and I completely forgot about it until August, when I watched Breast Cancer Network Australia’s AFL Pink Lady Match and remembered the lump,” she says. By this time the lump had grown significantly, so Kansas made an immediate appointment with her GP, who listened and sent her for immediate testing. Following an ultrasound and biopsy, Kansas was diagnosed with breast cancer. “I didn't have anything to compare it to other than what I had seen in movies and, at that point, I thought the worst,” says Kansas. “I was really scared about how long I had left the lump and disappointed in myself as well.” In February 2022 Kansas began six rounds of chemotherapy, followed by a lumpectomy and lymph node removal. She underwent 15 rounds of radiation and continuous Herceptin for 12 months, with her treatment finishing in September that year. Currently, Kansas receives a Zoladex injection monthly to protect her ovaries and manage her hormones, and will be taking Tamoxifen daily for another 5-7 years due to her age.
To support the success of local fundraisers, BCNA provides free support kits and digital tools to all registered event hosts to help them plan, promote and deliver their event. Our high-profile major events highlight our sporting and charity partnerships, such as the Pink Lady AFL match and Carman's Fun Run. These events are a key part of our public awareness campaigns about breast cancer and can have a lifesaving impact for someone who has not yet been diagnosed or who needs support. How your investment can help To grow our impact, we are planning to expand our community events in 2025. We also want to bolster our corporate partnerships to raise the profile of BCNA and our work. We want to strengthen community connections and encourage more local fundraisers by continuing to provide BCNA supporters with kits, wherever they live across Australia. The cost of delivery to remote, regional, and rural areas can be cost prohibitive for both the host and for BCNA, so sponsorship would enable BCNA to redirect those funds to other emerging priorities and its information resources.
Our community events program serves a vital role by offering safe spaces for connection and opportunities for the wider community to actively demonstrate support for those with a diagnosis. These events raise awareness about breast cancer and the importance of early detection, while also generating valuable funds so that we can continue to deliver our free resources and support. Our community fundraising programs encompass over 2,000 events across the country each year. They empower individuals, businesses, sporting organisations, schools and community groups to acknowledge those affected in their communities, get involved and fundraise to support BCNA, whether that is through hosting a morning tea, running a marathon or hosting a Pink Sports Day with their local sporting club. These events also offer an important grassroots opportunity to promote greater awareness about breast cancer, including the importance of early detection and screening.
Investment opportunity: $110,000
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