October 16th 2024 sees the launch of Metastatic Breast Cancer Action Australia (MBC Action Australia), Australia’s first and only advocacy organisation devoted specifically to the needs of the growing number of women and men living with incurable and life-limiting metastatic breast cancer.
Professor Frances Boyle AM, medical oncologist and co-founder of MBC Action Australia said that ‘for too long, people with metastatic breast cancer have been in the shadows, forgotten in the sea of celebratory pink that focuses primarily on survivorship and recovery from breast cancer. Many of those diagnosed with metastatic breast cancer desperately need support, both emotional and physical, and many are simply not getting this.’
MBC Action is a national, grassroots, consumer-led advocacy organisation that has been established by people with metastatic breast cancer, for people with metastatic breast cancer. It is the first of its kind in Australia, that is, an advocacy organisation dedicated specifically to the needs of people with metastatic breast cancer. MBC Action Australia will fill a critical gap in Australia’s cancer advocacy landscape and drive much-needed change in cancer service delivery.
Novel treatments mean people with metastatic breast cancer are living longer, which is cause to celebrate. However, cancer service organisations remain relatively unaware of this growing population of people. Consequently, supportive care services are lagging behind the advances in treatment and gains in survival that these treatments have brought.
A key priority for MBC Action is to understand how many people are living with metastatic breast cancer in Australia. Currently, Australia’s state and territory cancer registries do not collect and report staging or recurrence data. Without these data, it is not possible to report how many people are living with cancer that has metastasised, that is, spread to more distant sites in the body. Within Australia and internationally, it is recognised that this is a significant gap in our cancer data ecosystem. This data gap was acknowledged earlier this year by Prime Minister Anthony Albanese’s announcement of $1.5M of federal funding for a national Cancer Data Alliance to support cancer registries to report stage and recurrence data.
MBC Action Australia takes this opportunity to congratulate the Cancer Institute NSW on its groundbreaking work in this area. Using data collected by the NSW Cancer Registry, they estimate that 7900 people (7850 women and 50 men) are living with incurable, life-limiting metastatic breast cancer in NSW. When extrapolated to the whole of Australia, this means an estimated 24,000 people are living with metastatic breast cancer in Australia.
Dr. Andrea Smith, co-founder of MBC Action Australia and cancer survivorship researcher at the Daffodil Centre, University of Sydney, and Dr Sally Lord, a cancer epidemiologist at the University of Sydney, have been working closely with the Cancer Institute NSW to understand how existing cancer registry data can be used to report prevalence of metastatic breast cancer.
Dr Smith, who herself has a metastatic breast cancer diagnosis, has been campaigning tirelessly for years around the importance of people with metastatic breast cancer being counted. “Novel treatments mean we are living much longer. However, up until now, no one knew how many people were living with metastatic breast cancer in Australia. If we don’t know these numbers, how can governments and cancer service providers plan for and deliver the appropriate care and support that we need?”
This achievement demonstrates the power of consumer advocacy in bringing to light issues that are important to consumers and of direct relevance to healthcare policy.
MBC Action is committed to improving outcomes for those with metastatic breast cancer. We thank St Vincent’s Health Australia and the Mater Hospital in North Sydney for hosting our launch. Our goal is to ensure anyone diagnosed with metastatic breast cancer no matter where they are diagnosed in Australia has access to the same level of excellent care and support that is available to patients with metastatic breast cancer at the Mater Hospital.