Since the PM's announcement back in January, the funding has been allocated to Cancer Australia and the Australian Institute of Health & Welfare (AIHW). It will be their joint responsibility to set up the 'cancer data alliance' who will allocate funding the state and territory cancer registries for projects that will help us progress towards cancer stage and recurrence data.
We maintain regular contact with Cancer Australia and AIHW who plan to have the alliance up and running in September, ready to start allocating the funding.
In the meantime, we know this work cannot pause and so we've been working with the individual state and territory cancer data registries to encourage them to get projects ready for funding. There's amazing work being done in Victoria who are now sharing learnings with other states and territories which is great progress and previously there wasn't much collaboration between the cancer registries.
We understand how frustrating the pace must be. The roadmap that BCNA launched is working towards a ten year timeframe for implementation which may seem like an incredibly long amount of time for a seemingly simple request - to know how many people are living with MBC - but it is very complex. We need to see investment in our cancer registry infrastructure, better alignment between hospitals, pathologists, and primary care, improved data governance, and leveraging of new technology like AI. It's all happening, and we're not giving up.
Besides the data issue, we continue to advocate on behalf of those with MBC in a variety of different areas. We recently released an
MBC Media Guideline for journalists, we are constantly pushing for earlier access to new drugs and treatments through the PBS, and we're working with various other orgs to increase access to clinical trials for those living with MBC in rural and regional areas.
Happy to answer any other questions and thank you so much for keeping the conversation going! I can also pass onto the team the suggestion to post some regular updates, perhaps quarterly for the time being. I think that is a great idea.
