BCNA’s advocacy for equity of access to all breast cancer drugs and tests began with a campaign for a drug known at the time as Herceptin (trastuzumab).
Families were mortgaging their homes and selling their possessions to afford access to this life-prolonging drug. In 2001, BCNA led the network to successfully lobby and worked with government, health professionals and the suppliers to have the drug subsidised for people living with metastatic breast cancer; the real-life stories of those impacted were central to the success of this campaign.
Access was granted, giving those with fewer treatment options renewed hope of more time with their loved ones. Responding to a developing evidence base, in 2006 BCNA led a second successful campaign to have the subsidy expanded to those with early breast cancer.
As a result, more than 32,000 Australians have accessed trastuzumab.
If we were to estimate a previous average cost to patients of $50,000, this has potentially saved families a total of $1.6 billion. It has, literally, saved lives and livelihoods.
This advocacy set a precedent for strengthened consumer and clinician-led advocacy that has brought countless other breast cancer drugs onto the Pharmaceutical Benefits Scheme, with successes including Tykerb (lapatinib) in 2008 for HER2-positive metastatic breast cancer and Trodelvy (sacituzumab govitecan) for triple negative metastatic breast cancer in 2022. Without government subsidy, these life-saving and life-prolonging treatment options would remain out of reach for many.
You can read more about BCNA’s advocacy campaigns.
The establishment of BCNA’s Seat at the Table program in 2001 provides opportunity to ensure the consumer voice is involved wherever there are decisions or discussions about breast cancer across international, national and local levels.
This formal training program elevates consumer representatives to be more than just storytellers, but to represent the broader experience and strategically influence research, policy and service provision not just in breast cancer but across the health system.
Becoming a consumer representative also embodies connectedness, knowingness, humanness, and hope. I now have the privilege of representing every one of the 20,000 women, men and families who will be affected by breast cancer this year, and every person still impacted by cancer years after finishing treatment. My voice now speaks for others in the hope that it creates improvements in patient experiences.
BCNA provides a number of opportunities for people with lived experience to get involved - Working with consumers.
We continue to seek insights from our network in lots of different ways, from travelling to rural and regional locations, to national surveys and partnerships with researchers. All this collectively contributes to an evolving national picture of the issues affecting those with breast cancer to ultimately help to improve outcomes.
BCNA’s landmark State of the Nation report in 2018 aimed to map where progress had been made and where more work needed to be focused. In what is the biggest study of its kind for BCNA and any consumer group in Australia, the report was informed by a survey of over 10,000 of our members.
We continue to leverage the findings of this report to inform our advocacy and create opportunities for partnership in the sector.
I don't think I would be in a position to lead this organisation without the incredible knowledge, insight and strength that I gained from travelling across the country, interviewing more than 3,500 people affected by breast cancer. The stories shared with me continue to inspire me to do better every day.
The financial impact of breast cancer has been an ongoing issue since BCNA began and is an example of how our advocacy efforts often need to be sustained over a period of time.
Out-of-pocket costs are often significant, particularly for people who have their treatment in the private health system. In 2017 BCNA released the Financial Impact of Breast Cancer report, helping to highlight this key issue. We continue to work to reduce the cost of breast cancer by working with Cancer Council Australia, other cancer agencies and government. Some of our successes include Medicare rebates for MRI scans for young women, breast prostheses reimbursement programs, and lymphoedema compression garment subsidy programs.
Importantly, ongoing events such as BCNA’s Think Tank create further platforms for key discussion with consumers to understand the evolving issues affecting those with breast cancer and help us to prioritise and plan our efforts ongoing.
You can read more about our Think Tank in the March 2023 edition of The Beacon.
With so much to be done, our Policy and Advocacy strategy helps to focus our efforts. From July 2023 we will enhance our work to support ‘living well with and beyond breast cancer’ with one key focus being those living with metastatic breast cancer.
Australia’s cancer registries do not routinely collect stage-at-diagnosis or cancer recurrence data. This means that we do not know how many people are living with treatable but not curable metastatic breast cancer, leading to this group being ‘invisible’ to policymakers and health service providers, despite having significant unmet needs. Last year, BCNA released an Issues Paper: Making Metastatic Breast Cancer Count, which calls for improvements to the collection and reporting of cancer data so that we can advocate for improved services for this group and ensure they are ‘no longer hidden in plain sight’.
The release of the issues paper was a bold and clear statement from BCNA of its commitment to addressing the lack of data on metastatic prevalence in Australia. This work flagged to a lot of people with metastatic breast cancer, who perhaps did not think BCNA represented them, that the organisation is operating in this space and takes this issue seriously.
We know we still have much work to do to ensure that the voices of people with diverse experiences of breast cancer are heard. Our Lived Experience Reference Groups, including metastatic, LGBTIQ+, and rural and remote, support our advocacy work with their diverse real world experiences.