Introduction
While treatment advances enable people with metastatic breast cancer (MBC) to live longer, their needs remain distinct from those with early-stage disease. The absence of accurate national data on MBC prevalence creates challenges to plan for healthcare services and targeted research investment. Historically Australian cancer registries have not been required to collect diagnosis stage or recurrence data.
Breast Cancer Network Australia (BCNA) has long advocated to improve MBC data collection and visibility. In November 2024, these efforts resulted in the Cancer Institute NSW, in collaboration with BCNA, confirming people living with MBC can now be counted in NSW, highlighting previous national estimates have significantly underestimated the MBC population.
Methods
To drive systemic change, BCNA has led a staged, evidence-based approach:
1. White paper estimating the number of people living with MBC using available methodologies.
2. National consultation to galvanize the data sector and facilitate a roundtable to build consensus on solutions and achievable outcomes.
3. Developed a roadmap for change with key actions and responsibilities to achieve national consistency in MBC data collection.
4. Implementation using advocacy as a mechanism to drive sector-wide adoption of solutions.
Results
• Secured federal funding to establish the Australian National Cancer Data Alliance, implementation of standardized national data collection.
• NSW now reporting staging and recurrence data, demonstrating feasibility of this approach.
• Continued advocacy, expanding methodology nationwide, ensuring all Australians with MBC are counted.
Conclusion
The concept of survivorship must include people with MBC being counted, seen, and supported with the right policies, services, and care. BCNA’s work ensures MBC data collection informs the development of meaningful health policies and equitable access to treatment and support. Securing national commitment lays the foundation for a healthcare system that acknowledges the realities of those living with MBC and ensures their needs are met now and into the future.