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Advocacy Action: Urge your Representative and Senators to Support Improved Coverage of Clinical Trials!

Discussion in 'Advocacy Action Alerts' started by Emily Taylor, May 31, 2019.

  1. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Los Angeles, CA

    Advocacy Action: Urge your Representative and Senators to Support Improved Coverage of Clinical Trials!

    The CLINICAL TREATMENT Act (H.R. 913) was introduced by Representatives Ben Ray Lujan (D-NM-03) and Gus Bilirakis (R-FL-12) to guarantee insurance coverage of routine care costs for clinical trials. This bill targets Medicaid enrollees with a life-threatening condition or disability. Currently, Medicaid is the only insurance payer which does not provide this coverage for clinical trials.

    Medicaid insures nearly one-fifth of the U.S. population and is the only major payer that is not required by federal law to provide coverage of the routine care costs for participating in a clinical trial. Improved access and coverage of clinical trial participation benefits ME/CFS patients and helps reduce the overall cost of clinical trials. This is vital for under-funded diseases, like ME/CFS, which struggles to secure funds for clinical trial research.

    The Clinical Treatment Act (H.R. 913) is one step towards improving the representation of ME/CFS patients in clinical trials and reducing the cost of ME/CFS clinical trials in the future.

    Congressman Bilirakis, who spoke at ME/CFS Advocacy Day in 2018, is an outspoken advocate for improving research and access for people with chronic illness.


    “All patients should have access to the best possible treatment for their condition, and that includes participation in clinical trials. This legislation removes a barrier that exists for some of our most vulnerable populations, our children and very low-income Americans. By eliminating that barrier, we are leveling the playing field and allowing access to the hope for a cure.” – Rep. Gus Bilirakis (R-FL-12)


    Mij, Webdog, ahimsa and 9 others like this.
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you @Emily Taylor!

    And thank goodness the US is moving ahead - albeit too slowly. Canada, as per usual is behind.....way behind. Health Canada "supported the Cochrane reviews on GET and CBT for ME. Don't know if that debunked info was disseminated to physicians or not. Canadian research funding for ME is pennies per pwME at best.

    So, thanks again for your, and all US advocates' work!
    Mij, rvallee, ahimsa and 4 others like this.
  3. Marylib

    Marylib Established Member (Voting Rights)

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