Breast cancer patients rally for visibility in landmark panel discussion with policymakers

Pharma News: In a deeply moving event at Parliament House, Canberra, more than 100 people living with metastatic breast cancer gathered to demand visibility and support from health service providers and policymakers. Organised by the Breast Cancer Network Australia (BCNA) and the Parliamentary Friends of Women’s Health, the panel discussion shed light on the challenges faced by those living with this treatable but incurable form of breast cancer.

The panel, co-hosted by MPs Peta Murphy and Bridget Archer, heard from Lisa Tobin, a BCNA consumer representative from Perth. She has been courageously battling breast cancer for an incredible 23 years, with the last 11 years marked by metastatic breast cancer. The inspiring testimonials from patients like Lisa resonated with the gathering of politicians, health professionals, and policy makers, as they spoke about the challenges of being “invisible” within the healthcare system due to the lack of accurate data registries.

The urgent need for accurate cancer registries was a key focus of the event. Vicki Durston, BCNA’s Director of Policy, Advocacy, and Support Services, highlighted the startling fact that people living with metastatic breast cancer are not consistently counted in Australia’s cancer registries, even though they have every right to be. This invisibility poses significant challenges in planning and investing in services for this growing population with complex and unmet needs.

Peta Murphy MP, added a unique perspective, being both a Member of Parliament and someone living with metastatic breast cancer herself. Peta, who was first diagnosed with breast cancer in 2011 and later with metastatic breast cancer in 2019, spoke passionately about the importance of bringing this issue to the forefront of Australian politics. She stressed that it’s not just a matter of personal experience but a national imperative, with 57 women being diagnosed with breast cancer in Australia every day. Peta vowed to be a relentless voice for patients and their families, pushing for greater visibility and support.

The Clinical Oncology Society of Australia (COSA) expressed its support for developing new systems to report cancer recurrence, emphasising its critical role.

“Without this, we cannot plan services, ensure adequate resources, and learn how our treatments for cancer are working in the real world,” said Professor Fran Boyle, an esteemed medical oncologist from Mater Hospital North Sydney.

The Advanced Breast Cancer (ABC) Global Alliance also joined the chorus of support, acknowledging that the lack of adequate epidemiological data about metastatic breast cancer hinders patient care and outcomes worldwide.

This event followed a National Roundtable on metastatic breast cancer, also organised by BCNA, which brought together key policy makers, cancer experts, and individuals affected by breast cancer. The Roundtable’s recommendations, slated for release later this year, promise to further fuel the momentum for change and better support for metastatic breast cancer patients in Australia.

In the fight for visibility, recognition, and optimal care, these brave individuals and organisations stand united, determined to make a difference in the lives of those living with metastatic breast cancer.

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