Making metastatic breast cancer count

Today, Breast Cancer Network Australia (BCNA) announced that there are over 10,000 people living with metastatic breast cancer in Australia.

This figure is only an estimate because Australia’s cancer registries are currently only mandated to report the number of people diagnosed with cancer (incidence) and how many people die from cancer (mortality). This means we currently don’t count people who are living with metastatic breast cancer.

Vicki Durston, BCNA’s Director of Policy, Advocacy and Support Services says data about cancer recurrence or the cancer’s stage at diagnosis is not consistently reported across all states and territories to paint a national picture of breast cancer.

Download the issues paper, Making Metastatic Count.

BCNA has long been calling for improvements to the collection and reporting of metastatic data as well as advocating for improved services to address the currently unmet needs of this population.

People living with metastatic breast cancer have significant health care needs. It is the most severe form of breast cancer and requires ongoing and often intensive treatment. Thanks to new advances in treatments, metastatic breast cancer survival has doubled in the past 20 years. However, health care goals extend beyond prolonging life and must also incorporate ways to define and live a quality life with metastatic cancer.

BCNA’s 2017 Member Survey Report demonstrated that people with metastatic breast cancer in Australia are not receiving the care they need. This is problematic from an equity perspective as people with metastatic breast cancer have significantly higher supportive care needs than people with non-metastatic breast cancer, yet our health and supportive care services are less likely to meet these needs.

Fear and anxiety, financial pressures, access to palliative care services, pain and symptom management, and assistance with daily living are some examples of the complex, chronic and often unpredictable needs that impact on the quality of life of the ‘treatable but not curable’ cancer population.

Dr Andrea Smith, a BCNA Consumer Representative living with metastatic breast cancer and researcher at the Daffodil Centre in New South Wales, contributed the modelling required to estimate those living with metastatic breast cancer and says this figure will help increase visibility for this group.

Incomplete data means those living with metastatic breast cancer are also invisible to our health systems and policymakers. Without this figure we cannot advocate, plan or invest to ensure our health systems are meeting the needs of this group.

This current gap in cancer registry data has been recognised in Australia for many years. However, a solution is yet to be implemented on a national scale, and it is unclear where accountability is placed.

Other breast cancer consumer organisations around the world have also been advocating for strengthened visibility of metastatic breast cancer, with some progress now being seen in the United Kingdom and United States. This initiative from BCNA has already received support from international breast cancer organisations with the hopes that it may serve as an incentive to many other countries worldwide.

Systematic capture and reporting of cancer stage and recurrence data is essential if policymakers and health providers are to accurately predict Australia’s future health service utilisation and workforce needs, as well as the costs related to delivering these services.

BCNA is calling for national leadership, investment and accountability, as well as legislative change, to ensure those living with metastatic breast cancer are counted and made visible. We must have this visibility to plan for and invest in this growing population with complex needs.