Senator Ruston and Assistant Health Minister Kearney unveil new report in breast cancer

Pharma News: In a landmark event held at Parliament House, Ged Kearney MP, Assistant Minister for Health and Aged Care, Senator Anne Ruston, Shadow Minister for Health, and Peta Murphy MP, Member for Dunkley, joined the Breast Cancer Network Australia (BCNA) to introduce a pivotal report aimed at shedding light on the challenges and opportunities surrounding the collection of Australian breast cancer data.

The report, unveiled during this collaborative effort, is designed to offer crucial insights into the hurdles, facilitators, and a strategic roadmap for the routine gathering of stage and recurrence data concerning breast cancer across the nation.

Vicki Durston, Director of Policy, Advocacy & Support Services at BCNA, emphasised the significance of this initiative, stating, “We have known for some time that those living with metastatic breast cancer do not feel they belong amongst the ‘sea of pink’ and often feel invisible in the wider breast cancer sector. Despite being raised as an issue throughout BCNA’s 25-year history, we remain in 2023 with no national picture of metastatic breast cancer.”

This absence of specific cancer data impedes Australia’s capacity to identify nationwide trends in delayed diagnoses, cancer resurgence, survival rates, and critically evaluate screening initiatives and potential new treatments for breast cancer patients in the country.

To tackle this challenge head-on, BCNA orchestrated a roundtable gathering in Canberra in August 2023, convening leading data and cancer experts. The resulting report, titled The Time to Count People with Metastatic Breast Cancer – A Way Forward, not only presents an evidence-based rationale for future investment but also aligns with the objectives outlined in the new Australian Cancer Plan.

During the roundtable, BCNA Consumer Representative Lisa Tobin underscored the importance of being counted, expressing, “If we can’t be counted, how can we be looked after properly? With that data, they could do things like identify locations for staff placement, for specialty training, and we would have better access to psychosocial services. We have different needs, our tests never end, our treatment never ends. We need those services because we are living longer, and so we need more of those services for a lot longer.”

Peta Murphy MP, who lost her battle with metastatic breast cancer today, lauded the resilience and determination exhibited by individuals with firsthand experience, emphasising their profound impact on driving positive change.

“I’m just struck again by the strength and courage of the women and men with lived experience who haven’t just gone through something and said, okay… I’m just going to focus on myself. So never ever for a second think that anything that you’re doing isn’t making a difference,” she said during the BCNA roundtable.

The report’s primary message underscores the necessity of considering data as an invaluable asset rather than a risk. Additionally, the report recommends the formation of an Australian Cancer Data alliance to spearhead and implement national data collection standards, increased funding and staffing for state and territory cancer registries, and enhanced capabilities for consistent stage and recurrence data collection through improved health provider data linkages.

Ms Durston highlighted the transformative potential of capturing metastatic breast cancer data, asserting, “We know that those living with metastatic disease have significant unmet needs, due in part to the fact that they are not visible to health systems and policymakers. Having access to this data will improve outcomes across the entire spectrum of cancer care, from clinical trials for new and innovative treatments, to supportive care. We have delivered a roadmap with key recommendations for change to address the lack of staging and recurrence metastatic breast cancer data nationally.”

Acknowledging the collaborative effort behind this pivotal report, Ms Durston expressed gratitude to the BCNA team, consumer representatives, Professor Sanchia Aranda, and key experts involved in the co-design and production of the report.

The commitment of Assistant Health Minister Kearney, Senator Ruston, and Ms Murphy MP was particularly praised for enabling this crucial step toward addressing the pressing need for enhanced data collection and utilisation in the fight against metastatic breast cancer.

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