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BCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data

Mez_BCNA Administrator, Staff, Member, Moderator Posts: 832

A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced over the weekend by Prime Minister Anthony Albanese to fund a cancer data alliance. 

Almost two years ago a group of Breast Cancer Network Australia (BCNA) consumer representatives living with metastatic breast cancer told us they feel invisible. 

They wanted to be made visible by being counted properly on all our cancer registries across Australia. Currently this data is not consistently collected across all states and territories. 

Last November BCNA launched the roadmap to address the lack of national cancer data for those living with MBC at Parliament House, Canberra. 

The roadmap was the result of a roundtable that saw experts from across the sector work towards recommendations to improve Australia’s cancer data, which aligns with one of the priorities of the first Australian Cancer Plan, launched last year. 

BCNA Director Policy Advocacy & Support Services, Vicki Durston acknowledged everyone who had come together to make this roadmap a reality, including the late Peta Murphy MP who stood with BCNA for many years to have people with MBC made visible through national data collection.

“She would have been so incredibly proud that we are now closer to ensuring that the many thousands of invisible Australians with metastatic breast cancer will no longer be hidden in plain sight,” Ms Durston said. 

“We know that cancer sectors in other countries around the world are watching Australia, this is our chance to build on progress being made and to become a world leader in health data.”  

This $1.5 million funding to the Australian Institute of Health and Welfare will ensure the formation of an Australian Cancer Data Alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. 

“This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said. 

“How can we possibly support this population living with metastatic disease and meet their needs when we don’t know how many people in Australia are living with metastatic breast cancer?

“Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.”

BCNA has been calling for improvements to Australia’s cancer data since 1998 and will today mark this key milestone alongside all those with a lived experience of cancer and their advocates. 

Read BCNA’s report Time to Count People with Metastatic Breast Cancer – A Way Forward 


  • Cath62
    Cath62 Member Posts: 1,241
    Thanks for the update @Mez_BCNA
  • MargaretTurner
    MargaretTurner Member Posts: 6
    This is absolutely thrilling news - I am one of many who feel invisible in Australia with MBC - thank you!
  • arpie
    arpie Member Posts: 7,466
    That is wonderful news @Mez_BCNA- it made NO SENSE that after an initial cancer diagnosis, that statistics were NOT kept of those who then developed Mets - as they need those statistics to make informed decisions on future costs and specialist treatments .... 

    Well done BCNA on flying the flag - Peta Murphy would have been SO thrilled ... 
  • Blossom1961
    Blossom1961 Member Posts: 2,344
    Thank you BCNA. 
  • cranky_granny
    cranky_granny Member Posts: 683
    edited February 7
    Cant express how proud I am of BCNA’s efforts on our behalf
    I brag about this website and the online network all the time 
    Thank you   thank you, thank you for all your hard work 
  • Julez1958
    Julez1958 Member Posts: 1,089
    Thanks so much to all the team and BCNA and their supporters who made this happen 👍
  • Tri
    Tri Member Posts: 27
    I have been so surprised to learn this data hasn’t been collected on a national scale. I salute this network’s advocacy efforts and this first step in funding so we can support better research and effectively assist people living with metastatic disease.