Policy and advocacy priorities

Breast Cancer Network Australia’s policy and advocacy purpose is to improve the lives and outcomes of all those affected by breast cancer in Australia. 

Our approach to policy and advocacy means that we: 

• demonstrate leadership in consumer driven advocacy within the broader health sector.  
• help drive and design how policy can be informed to reflect the issues that matter the most for those affected by breast cancer. 
• represent the voices of 180,000+ people from diverse communities and give them a voice across forums, committees and discussions with stakeholders. 
• engage and foster relationships, bring people together, and work as a collective for positive change. 
• advocate for system change – in policy, practice and treatment – to improve experiences and outcomes for people affected by breast cancer. 

Our Strategic Plan: Towards 2025 

In July 2021 BCNA launched its Policy and Advocacy Strategic Plan: Towards 2025, which clearly outlines the gaps and inconsistencies in breast cancer treatment and care and our plan for change. 

We divided the plan into four areas of focus. They are: 

1. Year one – reducing the costs for those diagnosed with breast cancer 
2. Year two – improving equity of access to optimal breast cancer care 
3. Year three – improving the experiences of living well with and beyond breast cancer.
4. Across all years – improving outcomes in tackling breast cancer through increased prevention and early detection activity.

The plan has been informed through extensive consumer engagement and research into the lived experiences of people with breast cancer and their key issues of concern.

This includes our 2018 State of the Nation, and 2021 Breast Reconstruction in Australia reports as well as research into the impact of COVID-19. You can read more about these on our Publications and reports page.

By prioritising these areas, we aim to make real progress in improving the lives and outcomes of people affected by breast cancer. 

Towards 2025 provides a clear plan for: 

• investing our resources and energy 
• harnessing the strength of our network 
• actively connecting and partnering with organisations and individuals who can further our progress 
• building greater connection between the lived experience of breast cancer and decision-making. 

Read BCNA’s Policy and Advocacy Strategic Plan: Towards 2025

Case study: Making Metastatic Breast Cancer Count  

Around 10,000 people are living with treatable but not curable metastatic breast cancer in Australia.  

But we don’t know the number for sure because they are not counted consistently by our cancer registries.  

Incomplete data means those with metastatic breast cancer are invisible to health service providers and policymakers.   

BCNA is calling for increased visibility through routine collecting and reporting of recurrence and stage data to change the way we view metastatic breast cancer and shine a light on the unmet needs of this group.  

It is vital that this gap in cancer registry data be addressed now to provide government, health services, researchers, cancer consumer organisations and the broader public with an accurate picture of metastatic breast cancer in Australia to assist with service provision and planning.  

To help drive our advocacy, BCNA has:  

• released an issues paper Making Metastatic Breast Cancer Count – No Longer Hidden in Plain Sight 2022   
• hosted a national roundtable in Canberra in August 2023, which provided a unique and important opportunity to engage with a broad range of policymakers, consumers and cancer data experts to make recommendations on ways forward to address this issue.  

For a more extensive exploration of these issues, read BCNA’s 2022 Issue Paper, Making Metastatic Breast Cancer Count.

Case Study: Equity of access to breast reconstruction

BCNA is calling for greater transparency of elective surgery wait times, decreased out-of-pocket costs in private health care, and provision of information at the right time for those diagnosed with breast cancer to make an informed decision related to breast reconstruction. 

This will help empower people diagnosed with breast cancer to make decisions that are right for them. 

A 2021 survey of 3,350 women diagnosed with breast cancer revealed that many women across Australia are waiting too long and paying too much for a breast reconstruction after a mastectomy.

The survey informed BCNA’s Breast Reconstruction in Australia 2021 report which found women would like to see improvements including:

• reducing the cost of reconstruction
• reducing waiting times in public hospital
• improving the provision and type of information about the different types of procedures.

The report highlighted the disparities in access and costs for breast reconstruction based on residential location, socio-economic position and between the public and private health systems. 

These disparities must be addressed to ensure people are informed of out-of-pocket costs upfront and have access to timely, affordable, and equitable breast cancer treatment that meets their individual needs.

Read the full report and recommendations in our Breast Reconstruction in Australia 2021 report.

Access to new drugs and treatments

BCNA’s advocacy for equity of access to 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 to successfully lobby and worked 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) for triple negative metastatic breast cancer in 2022.

Without government subsidy, these lifesaving and life-prolonging treatment options would remain out of reach for many. BCNA continues to work with consumers and clinicians to identify emerging new treatments, and advocates to both industry and the government for timely consideration of these treatments for subsidy.

International advocacy - reducing inequalities in metastatic breast cancer care

In collaboration with an international group of experts at The Health Policy Partnership (HPP), BCNA has contributed to policy briefs aimed at reducing inequalities in metastatic breast cancer care. These briefs outline three key areas of action for policymakers:

1. addressing structural barriers,
2. ensuring access to appropriate care along the treatment pathway, and
3. improving patient empowerment.

Recommendations include integrating metastatic breast cancer into cancer policies, investing in research, addressing social barriers, and providing clear, tailored information to patients. This project reinforces BCNA’s role as a leader in advocating for equitable care and amplifying the voices of those living metastatic breast cancer.

Read the policy briefs:

Reducing inequalities in metastatic breast cancer care: An overview.   

Addressing structural and systemic barriers to care.

Ensuring access to appropriate care along the pathway.

Improving patient experience, involvement and empowerment.