Non secretory patients not eligible for trials

This topic contains 1 reply, has 2 voices, and was last updated by  bear 1 year, 9 months ago.

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  • 25th August 2022 at 10:52 pm #146789

    copter
    Participant

    Hello all

    Just raising awareness that the 2% of myeloma patients are currently excluded from clinical trials purely due to the difficulty in measuring outcomes as paraproteins do not show in the blood and scans are required.

    There have been articles in the press – please support this injustice and lack of equality of medical provision

    Personally , I am getting to the point when all avenues have been pursued and I need a clinical trial. They are happening within an hours drive. I am not eligible purely because of being non secretory.

    For the people who come after me this must change. I intend to do my best to change things with the help of myeloma uk who have helped with the media campaign and are trying to exert some influence on the ‘powers that be’

    If anyone can help or has an idea please let me know!

    Thank you for reading this

    Simon

    26th August 2022 at 6:50 am #146790

    bear
    Participant

    We were in the same position as Sheila appeared to be oligosecretory…now not the case. We did find trials, but the issue you raise is of entitlement. If trials receive public funding, then yes, you may have an angle here.

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