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Open Letter Seeking Health Equity for ME in Canada! Please sign and share

Discussion in 'Petitions' started by brf, Oct 29, 2017.

  1. brf

    brf Established Member

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    We need to make a powerful statement to our Canadian Health Authorities and we need everyone's help from the international ME community to do that.

    The Petition and Open Letter are available in both English and French.
    Signatures from around the world are welcomed and very much appreciated.
    Remember to add your comments to the already powerful ones there.

    Please sign and share widely.

    Heartfelt Thanks!
    The Millions Missing Canada Team :heart:



    English: "Open Letter to the Minister of Health of Canada"
    En français : "Lettre ouverte à la ministre de la Santé, Madame Petitpas Taylor "





    Dear Health Minister Petitpas Taylor,



    Canada has the highest myalgic encephalomyelitis rates (ME) in the world at 1.9%

    • More than 560,000 Canadians living with ME in 2015
    • A 37.6% increase over the previous year
    • The previous (recorded) Canadian ME epidemic was in 1984
    • Ampligen is the only medication approved for ME in other countries

    Myalgic encephalomyelitis is:

    • A serious complex multi-system neuroimmune disease
    • Occurs in sporadic and epidemic forms
    • Believed to be caused, like poliomyelitis, by enteroviruses
    • First identified in 1934 - initially called ‘atypical polio’
    ME disables and kills:

    • About 25% so ill they are housebound or bedridden
    • Severely ill cannot stand or sit up or speak
    • Require a dark room, no sound, no visitors, and a feeding tube
    • Average age of death is 56 years old

    Recent ME research:

    • People with ME are in a “hypometabolic” state
    • Has found “something being released in the serum” of people with ME
    • Biomarkers identified: “Remarkably, 17 cytokines were associated with severity”
    (Mis)Treatment of ME patients:

    • Harmed by contraindicated treatment
    • Lowest quality of life
    • Highest poverty - often denied disability benefits
    • Highest food insecurity - too ill to shop or prepare food
    • Lowest research funding - by far - due to systemic bias

    Ampligen is medication for ME:

    • Only one medication, Ampligen, approved for ME in other jurisdictions
    • Millions Missing Canada is collaborating with a Canadian physician and Hemispherx Biopharma, the makers of Ampligen, to bring it to Canadians with ME.
    • Quote from Canadian who received Ampligen in another country:

    I was completely bed bound and requiring 24 hour nursing
    before my treatment with Ampligen. On Ampligen, I was back
    to full time study and also able to exercise.

    • Ampligen used by more than 1,200 people in 93,000 doses
    • Most effective within the first eight years of illness. Every year that goes by shuts door to hope for thousands of ME patients.
    We, the undersigned, are demanding Health Minister Petitpas Taylor:

    • Initiate an emergency response as was done with H1N1, SARS, and Zika, to protect and treat Canadians
    • Invest in ME research, at least $88 million is missing each year
    • Fast-track access to Ampligen medication


    Minister Petitpas Taylor, only you have the power to stop the harm, fund the research, and start the treatment.


    Sincerely,

    Millions Missing Canada

    The National ME/FM Action Network

    The ME/FM Society of BC


    CC: Prime Minister Justin Trudeau; Caroline Pitfield, Director of Policy, Health Canada; Dr. Siddika Mithani, President, PHAC; Dr. Teresa Tam, Chief Public Health Officer, PHAC; Dr. Graham D. Sher, CEO, Canadian Blood Services; Dr. Roderick McInnes, Acting President, CIHR; Marilyn Desrosiers, Manager Business Development, CIHR; Nathaniel Erskine-Smith, MP Beaches-East York


    * “chronic fatigue syndrome” - a misnomer, burdened with a negative psychological connotation, is often conflated with the official World Health Organization term ‘myalgic encephalomyelitis’, describing the muscle pain and inflammation of the brain and spinal cord.


    A list of Fact and Data about ME in Canada with references, government graphs and data, and researcher and patient quotes.


    Millions Missing Canada advocates for equitable research funding and treatment access for Canadians living with myalgic encephalomyelitis.


    Find us on Facebook: Millions Missing Canada




    23.10.17 Together.PNG

     
    Jill T, Inara, Sly Saint and 6 others like this.
  2. Andy

    Andy Administrator Staff Member

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  3. brf

    brf Established Member

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    @Andy

    Kind thanks Andy. Every signature counts!
     
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    Signed :)
     
    Inara, Andy, Luther Blissett and 2 others like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't think Ampligen is the proper goal to chase here.
    I would look for acknowledgement, disability benefits and research money or Rituximab instead of Ampligen.
     
    Perrier, dannybex and Valentijn like this.
  6. brf

    brf Established Member

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    @Wonko
    Thanks so much!
     
    Inara, Wonko, Andy and 1 other person like this.
  7. brf

    brf Established Member

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    All things in due time. There's a method in the madness.
    Money for research is included in the asks.
     
    Inara, Wonko, Andy and 1 other person like this.
  8. Inara

    Inara Senior Member (Voting Rights)

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    Thanks for sharing, it's signed and re-shared.

    Reasons for the non-educated? :)
     
    brf likes this.
  9. brf

    brf Established Member

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    Thanks so much @Inara!
     
    Inara likes this.
  10. Alvin

    Alvin Senior Member (Voting Rights)

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    Its efficacy is unproven and inconsistent and the manufacturer makes promises then ignores them. Health Canada won't approve the drug because patients ask them to without data and its a dead end at this point.
    That said money towards research on the disease mechanism would be easier to get (though not by much it seems).
    We would have better luck getting approval for Rituximab.
     
    Webdog and Inara like this.
  11. Inara

    Inara Senior Member (Voting Rights)

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  12. brf

    brf Established Member

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    @Alvin

    Ampligen has been approved multiple times via the Special Access Programme for ME, so yes, Health Canada has approved Ampligen. We are not aware of Rituximab being approved for ME via SAP.

    In our meetings with Hemispherx, they provided data that showed Ampligen has 50% efficacy for those sick less than 8 years.

    Perhaps you can ask your doctor to try to get you Rituximab via SAP. That would be proactive and contribute to our collective efforts.

    As for research money, again - that is included in the requests contained in the Open Letter. Advocates have been asking for years for research money, yet piddles have been offered. They are unlikely to offer more until forced to by other means. Moving along other areas will also move along the research area.

    This petition and our 'Meet your MP about ME' are meant to help force our government into acting on some level - any level.

    Your participation in any of the above ways would help.
     
    Inara and Perrier like this.
  13. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm not speaking of exceptional access (typically on a case by case basis), i speak of regular approval as we have for any other prescription drug. I have some personal experience i'm not going to get into on a public forum somewhat related to this.

    For drugs to get approved there is a dance between the drug company and the national health regulator, the FDA in the US, for us i believe Health Canada. Hemispherx has not been successful and its more in their court then ours. We have little energy so we need to focus on essentials, which can indirectly help, if for example the stigma of ME/CFS is keeping Ampligen out we can get a disease mechanism and legitimacy then they would be morel likely to approve potential treatments such as Ampligen.
    The way i see it is its about strategy, you get the core message out and accepted then work on the details because its easier to dismiss a "controversial" drug for an "unproven" disease then it would be to dismiss a potential drug for a disease with a biomarker and mechanism. In both cases i am refering to Ampligen and ME/CFS. This is why i would drop Ampligen for now but its already done so never mind.

    This is rather personal but i have discussed it with my doc, and at this point i am not ready to go down that road and she is not familiar with the treatment except from me so is not pursuing it until i get worse or more information is published. I'm exceptionally pragmatic as a person and have explored as far as i can right now and more data will be published i due course.

    Sorry i didn't explain this well earlier, i would just have employed a different strategy, but its now an academic point and i probably should not have mentioned it at all.

    Of course, sorry to have started a debate for no reason.
    I will have a look at your website and go from there
    Cheers :thumbsup:
     
    Inara likes this.
  14. brf

    brf Established Member

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    My apologies @Alvin for coming across snarky.

    There are so many issues we could have focused on in this petition. We consulted with many others during the process and took numerous factors and approaches into consideration.

    We very much wanted the petition to include specific requests that were actionable and to convey the urgency of the situation here in Canada. With 1.9% of the targeted population diagnosed with ME, (the highest in the world), we felt we needed to jolt government officials out of their long term complacency towards ME and to face the crisis head on.

    So it was designed to have lots of attention drawn to it, maximum impact to radiate from it and concrete action to result from it.

    I'm sure that each person designing a campaign would do it differently. These are some of the ingredients that went into this one.
     
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