BCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data
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 ForwardPharmaceutical Benefits Advisory Committee (PBAC) - Enhertu for HER2-low Metastatic Breast Cancer
The Pharmaceutical Benefits Advisory Committee (PBAC) has recommended the drug Enhertu (trastuzumab deruxtecan) for people with HER2-low metastatic breast cancer (MBC) to be subsidised on the Pharmaceutical Benefits Scheme (PBS). We now call on the Australian Government to work with the pharmaceutical company to list Enhertu on the PBS as quickly as possible, to save people thousands of dollars. BCNA also urges AstraZeneca to reduce the cost of its Patient Access Program for Enhertu whilst we await PBS listing, to ensure as many people as possible can access this life-prolonging dug. Sarah (pictured), who was diagnosed with metastatic breast cancer in 2017 at the age of 41, has spent over $200,000 on Enhertu privately until she recently became eligible for the patient access program. “[Enhertu means that] my children will have a mum who loves them unconditionally – for longer. My husband will have a wife – the love of his life – for longer.” If you have any questions about Enhertu we encourage you to speak to your treating team. Read further details via the link https://www.bcna.org.au/media-releases/enhertu-recommended-for-pbs-subsidy-but-it-is-not-time-to-celebrate/
Article from USA re patient advocacy & metastatic bc
Thought this article was topical given some of the issues expressed on recent threads. Patient centred care and engagement with consumers to inform practice, research and priorities is the way ahead to create better outcomes for all. Best wishes to everyone for festive season. 🎄🌈 https://www.npr.org/sections/health-shots/2018/12/16/676809440/commentary-how-patients-have-transformed-a-medical-meeting-about-breast-cancer ;
