BCNA has undertaken many successful national campaigns on a range of issues that are important to women with breast cancer. Our campaigns have resulted in improved treatment, care and support for women with breast cancer.
- Making Metastic Breast Cancer Count Campaign
- Increasing equity of access to breast reconstruction campaign
- Herceptin campaigns
- Tykerb campaign
- MRI Screening for High Risk Young Women
- Breast prostheses subsidy program
Making Metastatic Breast Cancer Count campaign
Around 10,000 people are living with treatable but not curable metastatic breast cancer in Australia.
But we don’t know the number for sure because they are not counted consistently by our cancer registries.
Incomplete data means those with metastatic breast cancer are invisible to health service providers and policymakers.
BCNA is calling for increased visibility through routine collecting and reporting of recurrence and stage data to change the way we view metastatic breast cancer and shine a light on the unmet needs of this group.
It is vital that this gap in cancer registry data be addressed now to provide government, health services, researchers, cancer consumer organisations and the broader public with an accurate picture of metastatic breast cancer in Australia to assist with service provision and planning.
To help drive our advocacy BCNA:
- Has released an issues paper Making Metastatic Breast Cancer Count – No Longer Hidden in Plain Sight, 2022
- Will be hosting a national roundtable in Canberra to in August 2023, which will provide a unique and important opportunity for us to engage with a broad range of policymakers, consumers and other stakeholders to shine a light on the unmet needs of those living with metastatic breast cancer and what needs to change.
For a more extensive exploration of these issues, read BCNA’s 2022 Issue Paper.
Increasing equity of access to breast reconstruction campaign
BCNA is calling for greater transparency of elective surgery wait times, decreased out-of-pocket costs in private health care, and provision of information at the right time for those diagnosed with breast cancer to make an informed decision related to breast reconstruction.
This will help empower people diagnosed with breast cancer to make decisions that are right for them.
A 20212 survey of 3,350 women diagnosed with breast cancer revealed that many women across Australia are waiting too long and paying too much for a breast reconstruction after a mastectomy.
The survey informed BCNA’s Breast Reconstruction in Australia 2021 report which found: Reducing the cost of reconstruction, reducing waiting times in public hospital, and improving the provision and type of information about the different types of procedures are key areas that women would like to see improved.
The report highlighted the disparities in access and costs for breast reconstruction based on residential location, socio-economic position and between the public and private health systems.
These disparities must be addressed to ensure women are informed of out-of-pocket costs upfront and have access to timely, affordable, and equitable breast cancer treatment that meets their individual needs.
Read the full report and recommendations on our website here.
Herceptin (trastuzumab) is a very effective drug treatment for women with HER2-positive breast cancer. It is, however, an expensive drug which many women could not afford without government assistance. In 2001 and again in 2006 BCNA ran successful campaigns to make Herceptin available to women through government subsidies. In 2012, we advocated for neoadjuvant Herceptin to be included on the PBS.
Metastatic Breast Cancer Herceptin Campaign
'It's great news [that Herceptin is now available]. It looks like the Prime Minister was listening and Breast Cancer Network Australia has done some great lobbying' - Janet
In 2001 Jill Supree, a young mother with HER2-positive metastatic breast cancer, became the face of BCNA's Herceptin campaign. Herceptin had been approved for use in Australia for women with HER2-positive metastatic breast cancer, but it was not included on the Pharmaceutical Benefits Scheme (PBS) as it did not meet the cost effectiveness criteria. As a result many women were unable to afford the treatment, while others took drastic steps, such as selling their home, in order to pay for treatment with Herceptin.
Throughout 2001 we advocated strongly for Herceptin to be subsidised by the Australian Government. Our campaign included direct approaches to the Prime Minister, the Health Minister and other key politicians. We also directly approached the Pharmaceutical Benefits Advisory Committee to discuss our concerns. We notified our members and encouraged them to take action and voice their concerns.
This resulted in pre-election commitments from both major political parties to subsidise Herceptin. After the election the Herceptin special access program was established to subsidise the cost of Herceptin for women with HER2-positive metastatic breast cancer, and continues to operate to this day.
Early Breast Cancer Herceptin Campaign
In 2006 the issue of Herceptin emerged again following positive results from a number of clinical trials for the use of Herceptin in women with HER2-positive early breast cancer. BCNA's campaign this time took a partnership approach and we worked closely with the Pharmaceutical Benefits Advisory Committee, the Minister for Health and Ageing, Roche (the company that produces Herceptin), the Medical Oncology Group of Australia, the then National Breast and Ovarian Cancer Centre and of course, women with breast cancer.
When Herceptin was still not available to women some months later, BCNA convened a round table meeting bringing together all the key stakeholders. It was at this meeting that agreement was reached to add Herceptin for women with early breast cancer to the PBS. On 1 October 2006 Herceptin was made available through the Pharmaceutical Benefits Scheme (PBS).
Sometimes women require treatment with chemotherapy or other drugs, such as Herceptin, before their breast cancer surgery, usually to shrink the tumour and make it easier for the surgeon to operate. This is called 'neoadjuvant' treatment.
In 2012, BCNA and the Medical Oncology Group of Australia lobbied for neoadjuvant Herceptin to be included on the PBS for women who need this treatment. The application was approved by the Pharmaceutical Benefits Advisory Committee, and neoadjuvant Herceptin was listed on the PBS from 1 December 2012.
Women who require treatment with Herceptin for early breast cancer are still entitled to 12 months of subsidised Herceptin, but can now have some of this Herceptin treatment before their breast cancer surgery if this is the best treatment for them.
Tykerb (lapatinib) is another highly effective treatment for women with HER2-positive metastatic breast cancer. Like Herceptin, it is a very expensive drug.
In late 2007, BCNA worked hard both behind the scenes and publicly, advocating for the inclusion of Tykerb on the Pharmaceutical Benefits Scheme (PBS). In January 2008 it was announced that Tykerb would be available through the PBS. However Tykerb would not be included on the PBS until May 2008, meaning that women who needed the drug durig this interim period still had to pay for it.
BCNA convinced the company that produces Tykerb, GlaxoSmithKline (GSK), that they should extend their Tykerb patient access program (which allowed women to access the drug at no cost) until May, when the drug became available to women through the PBS.
MRI Screening for High Risk Young Women
Women who have a known gene mutation such as BRCA1 or BRCA2, or a very strong family history of breast cancer, are at a higher risk of developing breast cancer than women in the general community. While mammograms are an effective way for women over 50 to monitor for any changes in their breasts, mammograms are often not as effective for younger women (under 50), who tend to have denser breast tissue.
Young women who are at a much higher risk of breast cancer may be recommended to undergo regular Magnetic Resonance Imaging (MRI) screening, however MRIs are very expensive, often costing up to $800 or more.
In 2005 BCNA worked with a group of health experts to develop a submission to the Medical Services Advisory Committee (MSAC) recommending that a Medicare rebate be implemented for MRI screening for young women at high risk of breast cancer.
After many delays, in 2007 the Minister for Health announced that funding would be provided for the Medicare rebate. However a change in federal government later that year once again resulted in delays. BCNA continued to apply pressure behind the scenes and finally, in February 2009, the rebate came into effect.
'Thank you, thank you, thank you!!! To everyone at BCNA and elsewhere who have helped to bring this about for the sake of my daughter and all those who have to walk her path of BRCA2.' --Jenny
Breast prostheses reimbursement program
Since 2004 BCNA had called for a national, government supported scheme which would allow women with breast cancer to access breast prostheses at minimal cost. While subsidy programs for breast prostheses had been developed in most Australian states and territories, they varied wildly in terms of the subsidy available to women, and the difficulties and waiting times that women encountered receiving reimbursement.
BCNA argued for a uniform national program which would provide women with a reasonable subsidy to cover the cost of a prosthesis and which would be simple and easy to use.
We were delighted when, in 2009, the Minister for Health and Ageing announced that a national scheme would be introduced.
The External Breast Prostheses Reimbursement Program allows women to claim the cost of a prosthesis every two years (up to the value of $400 per prosthesis), with all claims made through Medicare - making it simple and convenient for women to use, no matter where they live in Australia.
While the Program has benefited many women since its introduction, BCNA is concerned that some women, particularly those on low and fixed incomes such as pensions, may not be able to afford the upfront cost of a prosthesis (up to $400) and so may not be able to access the Program.
BCNA has raised these concerns directly with the Health Minister, the Department of Health and Ageing (DoHA), and through an evaluation of the Program undertaken by DoHA in 2009-2010. You can read about the results of the evaluation, and find a link to the evaluation report, in our News pages.
For more information on the External Breast Prosthesis Reimbursement Program, visit the Australian Government's Department of Human Services website.
You can also read BCNA's breast prostheses position statement.