On the BCNA agenda: Metastatic Breast Cancer Advisory Group

BCNA’s Metastatic Breast Cancer Advisory Group focuses on issues of concern for people living with metastatic breast cancer. It comprises people living with a metastatic breast cancer diagnosis including Ros Casperson, Belinda Johnson, Kim Parish, Lisa Tobin and Louise Sinclair and is convened by Vicki Durston, Director of Policy and Advocacy at BCNA. Some members also represent the lived experience of metastatic breast cancer as Consumer Representatives in BCNA’s Seat at the Table program.

Dr Andrea Smith brings the unique perspective of a health services and cancer researcher, and a woman living with metastatic breast cancer.

She has recently been appointed to the role of Chair to the MBC advisory group, ABC Global Alliance and to BCNA’s strategic advisory group, which is made up of clinicians and members from Breast cancer governing bodies to ensure there is equal representation to support both Early breast cancer and Metastatic breast cancer when decisions are made.

‘The Advisory Group’s focus is on improving awareness of metastatic breast cancer among health professionals and in the community, and to help inform and shape BCNA’s policy, research and advocacy agendas,’ says Andrea.

Andrea hopes that through the work of the Advisory Group and BCNA, anyone with metastatic breast cancer will feel like their experience is recognised.

‘As more people with metastatic breast cancer get involved with BCNA, the network will become stronger, we can learn from each other and, ultimately, take united action on issues of concern,’ she says.

For those readers who know BCNA’s history, this idea of a small group of passionate people standing up and demanding change will sound familiar. From a similar beginning 23 years ago, BCNA is now a strong network of 150,000 individuals and continues to keep breast cancer issues on government agendas. ‘We are concerned that those in most need of support or who don’t have access to even a basic level of supportive care, are not being heard,’ says Andrea. ‘Everyone should have the opportunity to be heard regardless of the stage of their diagnosis.’

Andrea thinks that some people living with metastatic breast cancer have previously had a low expectation of what sort of care and recognition they are entitled to.

‘Alongside BCNA, the Metastatic Breast Cancer Advisory Group wants to help them find their voice, to speak up, to expect a better level of care, to be included in research and have the opportunity to contribute to the policies and decisions that affect them,’ she says.

Vicki Durston, Director of Policy and Advocacy at BCNA commented that, ‘The changes made to the Metastatic Advisory group in 2021 has seen strong leadership to support informational and supportive needs across BCNA resources and services, awareness through campaigns and events, and strong policy and advocacy priorities through BCNA’s strategic plan for the next 3 years.’

‘We know there is so much more we need to do to highlight awareness of those living with Metastatic breast cancer diagnosis, and we’re extremely pleased that the new BCNA policy and advocacy strategic plan now prioritises issues for Metastatic breast cancer not as a separate group, but rather integrated across all areas,’ she continued.

The Metastatic Breast Cancer Advisory Group meets every two months and we will keep members updated about the group’s progress. If there are issues affecting you or someone you know with metastatic breast cancer, BCNA would like to hear about it. You can get in touch with us at policy@nullbcna.org.au.

Issue 88
Winter 2021