Global pledge shifts visibility and action for patients with advanced breast cancer

Three breast cancer organisations have united internationally to demand that people living with metastatic breast cancer (MBC) are no longer overlooked. Launched at the Australian High Commission in London, the Advancing Global Visibility for Metastatic Breast Cancer Advocacy Pledge signals a major shift in the way metastatic breast cancer is recognised, recorded, and prioritised.

Backed by the Australian Government and supported by members of the World Health Organisation’s (WHO) Global Breast Cancer Initiative, the pledge was jointly introduced by Breast Cancer Network Australia (BCNA), Breast Cancer Now (UK), and Rethink Breast Cancer (Canada).

This global effort comes as the incidence of breast cancer continues to rise. Over 2.3 million people are diagnosed with breast cancer each year, and a 40% increase is projected by 2050. While survival is improving due to advances in treatment, patients with incurable MBC remain largely invisible to governments and health systems.

“We live in a digital age, but too often when it comes to cancer, the data is decades behind,” said MJ DeCoteau, Executive Director of Rethink Breast Cancer. “Without visibility, there’s no accountability. That’s why we’re demanding change, and we won’t stop until people living with MBC are counted and prioritised.”

For decades, MBC patients have been hidden in plain sight – excluded from cancer registries, underrepresented in services, and silenced in policy decisions. The failure to track recurrence and staging has left them systematically unsupported.

Australia, however, is breaking ground. At a national roundtable last year, BCNA launched its landmark report Making Metastatic Breast Cancer Count – A Way Forward, calling for urgent reforms to include all MBC patients in cancer registries.

The report’s impact is already evident. New South Wales, Victoria, and Queensland have implemented world-first linked data methodologies to identify people living with MBC. The result? Over 16,000 people have been identified across the three states, a staggering 60% higher than the last national estimate.

“For over two decades, BCNA has fought for every person with MBC to be counted,” said Vicki Durston, Director of Policy, Advocacy & Support Services at BCNA. “This pledge marks a global promise: we won’t stop until this community is visible in every health system, everywhere.”

The push for greater visibility is also backed by a recent discussion paper, Out from the Shadows, supported by AstraZeneca. The paper outlines critical priorities: amplifying patient voices, expanding MBC nurse support services nationally, improving access to psychosocial care, and creating platforms to discuss the unique and ongoing needs of people living with incurable breast cancer.

“Numbers don’t get sick – people do,” said Claire Rowney, CEO of Breast Cancer Now. “Until people with MBC are visible in data, they’ll continue to be left behind. We’re standing together today to make sure that ends now.”

For patient advocates, the global action is long overdue. Australian consumer advocate, Lisa Rankin, said “As someone living with metastatic breast cancer, I am incredibly excited it is now possible to be recognised. Until now we have been hidden in plain sight and vastly underestimated in numbers.”

Mark Butler MP, Federal Minister for Health, Disability and Ageing, welcomed the pledge, saying “The groundbreaking work by New South Wales, Victoria and Queensland shows what’s possible when governments work together to prioritise data for people with metastatic breast cancer. We are proud to support this global pledge alongside our Commonwealth partners.”

The Advocacy Pledge sets out four key demands: governments must prioritise data collection and reporting for MBC, invest in data infrastructure and workforce, embed MBC into global initiatives like the WHO Global Breast Cancer Initiative, and ensure people living with MBC have a voice in shaping their care.

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