Making Metastatic Breast Cancer Count - Parliamentary Friends of Women's Health panel discussion

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Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
edited October 2023 in Community news and events


BCNA and the Parliamentary Friends of Women's Health are holding a panel discussion – Making Metastatic Breast Cancer Count – at Parliament House, Canberra, 8-9am Thursday 3 August.  

It’s part of our advocacy calling for people living with metastatic breast cancer in Australia to be consistently counted on our cancer registries.    

If you are not counted you are not seen, which means you are ‘invisible’ when health service providers and policymakers plan cancer services and support.    

The event to be co-hosted by MPs Peta Murphy and Bridget Archer, will also hear from BCNA Consumer Representative Lisa Tobin from Perth who has been living with breast cancer for 23 years and metastatic breast cancer for the past 11 years.   

This event will be livestreamed from 8-9am AEST on Thursday 3 August via this link: https://aph.webex.com/aph/j.php?MTID=m7904c34e381cececf621eb6987c0e4c4 

Please note that the livestream is being hosted by the Australian Parliament House on Webex. Webex is free to use either in-browser or by downloading the client onto your computer.  

We are aware that this may be your first-time using Webex, we encourage you to join the meeting early to ensure everything is working.  You can also find troubleshooting assistance here.  

When you join, please ensure that your microphone and cameras are turned off. 

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  • Cath62
    Cath62 Member Posts: 1,311
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    Oh I would love to join but have a commitment @Mez_BCNA. Do these discussions get recorded?
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
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    No problem @Cath62 you will be able to watch the recording when it becomes available (I'll post on this thread)
  • arpie
    arpie Member Posts: 7,667
    edited August 2023
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    Hi @Mez_BCNA, Is there any word on the video link yet from the Mets Database discussion last week?

    I found this link that shows that Mets/recurrences don't 'count' on the data base, which is absolutely ridiculous!   

    Some recurrences/Mets diagnoses are DECADES after the first diagnosis & would have 'dropped off' the previous 'data base' and as we all know, some are diagnosed straight up with Stage 4 too. 
    https://www.aihw.gov.au/about-our-data/our-data-collections/australian-cancer-database/about-australian-cancer-database

    How on earth can they do accurate funding forecasts if they don't even know the figures??

  • Cath62
    Cath62 Member Posts: 1,311
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    @arpie and @Mez_BCNA. I was shocked to learn there is no data on metastatic breast cancer. Out of sight and out of mind!! Easier to just look at breast cancer as the success rate reads better doesn't it. Metastatic data is so important to determine funding and services needed for people with this disease.
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
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    Hi @arpie I have been advised that we had an external organisation at the breakfast recording the event that will be available on-demand in the coming weeks.


  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
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    @Cath62 Would you like a hardcopy of the 'Making Metastatic Breast Cancer' paper?
  • Cath62
    Cath62 Member Posts: 1,311
    edited August 2023
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    Thank you. I would like that please @Mez_BCNA
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
    edited August 2023
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    (From BCNA's Policy Advocacy & Support Services team)

    We are excited to share with you an update on our National Metastatic Breast Cancer data roundtable that was held last week in Canberra.

    The roundtable was a key recommendation of our inaugural issues paper, Making Metastatic Breast Cancer Count, launched in October of last year. After several months of careful planning and extensive engagement with the sector, we successfully held a national roundtable bringing together over 35 experts across cancer registries, cancer epidemiology, policy, research, and several peak clinical groups.

    The roundtable was facilitated by Professor Sanchia Aranda AM who drew on her extensive expertise working in cancer control to help drive and moderate conversation. The resounding consensus from all those in the room was that there needs to be a shift to view cancer data as an ‘asset’ rather than a risk. The group work across three streams of ‘data and processes,’ ‘resources and technology,’ and ‘governance and policy’ to first identify barriers and challenges, and secondly workshop and prioritise recommendations to start to overcome these across short-, medium- and long-term timeframes.

    Through extensive stakeholder engagement prior to the event, we arranged for key background context to be shared via re-reading as well as several presentations throughout the day by Professor Jason Pole, Cancer Australia, Danica Cossio, Professor Sue Evans and Dr Sally Lord.

    Formal analysis will now be undertaken by BCNA to write-up the discussion from the day as a formal paper than can then drive advocacy to state/territory and federal government. We will also work further with our roundtable attendees and other key stakeholders to determine accountability and drive a joint advocacy plan.

    Initial recommendations for investment in the short term included:

    • Deriving metastases from existing and linked cancer data
    • Funding smaller cancer registries to achieve minimum consistent standards.
    • The need for a national cancer data strategy and subsequent framework, discussed as part of the upcoming Australian Cancer Plan.
    • Leveraging of existing leadership groups and networks such as the Australian Association of Cancer Registries

    We are incredibly excited by the discussions we facilitated last week and want to thank all attendees as well as Sanchia Aranda for her facilitation. We also pay a special thanks to our Consumer Reps, Dr Andrew Smith, Dr Jodi Steel, Louise Sinclair and Jodie Lydeker, from our project steering committee who were also in attendance to ensure that the consumer voice was present in everything discussed.

    The day after the roundtable, we were delighted to be hosted by the Peta Murphy MP and Bridget Archer MP as part of the Parliamentary Friends of Women’s Health for a breakfast panel discussion at Parliament House. We welcomed over 50 guests, including politicians, health professionals, and people living with metastatic breast cancer at Parliament House, with many others joining us virtually from across Australia as well. Assistant Minister for Health and Aged Care Ged Kearney gave an opening address and welcomed everyone to Parliament House.

    Our panellists, Peta Murphy, Sanchia Aranda, and BCNA Consumer Representative Lisa Tobin made reflections on both the preliminary outcomes of the roundtable, as well as what ‘visibility’ would mean to those living with metastatic disease. We are happy to report that we have recorded the breakfast panel and will shortly have it available for on-demand viewing.

    Some key quotes from the breakfast panel:

    Assistant Minister Ged Kearney - Today and yesterday's round table is another example of the incredible work that the BCNA and all of you are doing to save lives. And I can assure you that alongside the Minister for Health and Aged Care, who sends his warm regards today, the wonderful Mark Butler, we are absolutely committed to this cause with you. With your help, we're working to make the health system better, particularly for people affected by cancer and breast cancer. We can't do it without you. Please keep up your energy. Please keep up your good work because we need each and every one of you if we are going to beat this terrible disease.

     

    Peta Murphy – Don't get me wrong, I am so pissed off that I have metastatic breast cancer and would do anything to have not had it. But when I'm in these sorts of rooms, there's a part of me that thinks that it's an amazing opportunity that I've been given by having it to be part of this sort of community, but also to play a small role in what all of you are going to achieve. So never ever for a second think that anything that you're doing, even if it takes 25 years to get the result, isn't making a difference.  


    Sanchia Aranda – One of the key messages that came out of yesterday was that data isn't abstract, every data point has a person at the end of it is about the people. And at the moment, our cancer system models of care are built around diagnosis and getting people into treatment. They're not built around ongoing systems of care.
     
    Lisa Tobin - I want better understanding in the general community because people never understand that we never finish treatment. That when we talk about the war and early breast cancer and beating it, that doesn't apply to us. And I know a lot of metastatic ladies don't like that because our war won't finish and there is no finish line. So, I really want everyone to be more aware of what we go through. 

    Thank you so much for supporting this work and we look forward to sharing more formally with you very soon. If you have any specific questions, please reach out to the Policy & Advocacy team at policy@bcna.org.au


  • Cath62
    Cath62 Member Posts: 1,311
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    Thanks for sharing this. 
  • arpie
    arpie Member Posts: 7,667
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    A couple of ABC discussions (31/7/23) that those with Advanced Cancer may like to listen to ..... with the chance of free gene testing and clinical trials ...

    What I would like to see happen as 'the norm':

    I would like to see that ANYONE diagnosed with Stage 4 has the 'current' biopsy compared with the 'ORIGINAL' biopsy as an automatic process (if not diagnosed straight up as Stage 4) and it be made available to researchers to do comparisons to see EXACTLY what has changed in those 2 samples - to try & help determine WHY that person went on to Stage 4 - which may then help predict others in the future - those who are more likely to go Stage 4.   If it is a gene thing, maybe they could be manipulated, to prevent that progression?

    Currently, up to 30% of ALL of us diagnosed with BC, may go on to develop Stage 4 .... they still just don't know 'who', 'why' or 'when'.  This research may assist in understanding the 'who', 'why' and 'when' .... and even possibly prevent it.

    But, if there isn't a 'list' of those with Advanced Cancers ..... how do these gene tests/trials get to the people who NEED THEM?

    https://www.abc.net.au/radionational/programs/healthreport/free-gene-analysis-for-advanced-or-rare-cancers/102668854

    and

    https://www.abc.net.au/radionational/programs/healthreport/metastatic-cancer-gene-analysis-initiative-isometric-exercise/102590088

    Check out these recordings - and contact your Onc if you want to discuss the options xx
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 901
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    Hello everyone,

    The recording is available for the BCNA - Parliamentary Friends of Women's Health Panel Discussion:

    https://www.youtube.com/watch?v=-Hku5PtYzbk