Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Canada: Meeting with Policy Advisor, Ministry of Health

Discussion in 'General ME/CFS News' started by ScottTriGuy, Apr 15, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,066
    Likes:
    4,256
    Toronto, Canada
    Hi folks,

    Yesterday was an important day. Whether it’ll prove to be pivotal remains to be seen.

    Yesterday I flew to Ottawa to meet with a Federal Policy Advisor, Dr. Jesse Kancir, from the Ministry of Health to talk about the lack of (zero) research funding for myalgic encephalomyelitis (ME), and the harm caused to over 400,000 Canadians living with ME when the medical establishment recommends contraindicated treatment.

    I was only able to get a meeting with a Policy Advisor because I have met our new Minister of Health, Dr. Jane Philpott, a few times when our paths crossed during our international HIV/AIDS advocacy and fundraising work. I reached out to Minister Philpott to let her know the plight of Canadian ME patients and yesterday’s meeting was a result of her support.

    I invited two other key people to the meeting with greater knowledge and experience with ME policy, research and treatment: the President of the National ME Action Network (Margaret Parlor), and the leading Canadian ME doctor (Dr. Alison Bested). Dr. Bested called in from Florida where she is collaborating with leading US researchers. The unexpected release of a Supreme Court Decision yesterday demanded time and energy from Dr. Rancir, but he still honoured his commitment to our meeting.

    A few days prior to the meeting I sent Dr. Kancir a document I called ‘Living with Myalgic Encephalomyelitis in Canada - Patient Perspective’, (attached) that I wrote with the support of other Canadian ME patients @oldbones @katiissick and others. It basically has 3 sections: stop the harm (caused by zero research and harmful ‘treatments’), start the research (funded commensurate with severity and prevalence), and start the treatment (testing and treatment access).

    I began by telling my narrative and experiences with the health care system, as a person living with HIV and living with ME. I shared how I was diagnosed with HIV in 1998, for which effective treatment had just been developed by research. How I was only alive because of these medications, and with that came the recognition that millions of people in sub-Saharan Africa were dying needlessly because they did not have access to HIV treatment.

    I shared how, morally and ethically, I had to take action. To that end, I founded the Race for Dignity fundraising events and worked with prominent Canadians, Dr. James Orbinski and James Fraser, the co-founders of Dignitas International, to bring access to HIV medications to communities in Malawi. I also shared how I currently work in HIV research at the AIDS Committee of Toronto and with Dr. Trevor Hart’s HIV Prevention Lab at Ryerson University.

    I contrasted my experiences with HIV in the health care system, to ME in the health care system. The former (eventually) had focused leadership to intervene in research and health care. Because of that leadership and intervention, HIV is now a chronic, manageable condition, and no longer a death sentence.

    But with ME, there is no research, no diagnosis, no access to relevant tests, no access to proper treatment, no hope to escape the suffering of an untreated chronic illness. (This is why I included the quote; “I wish they would stop calling us ‘ME patients’, it implies we receive medical care” in the Patient Perspective.)

    I shared that I felt the same ethical and moral pull to take action for Canadian ME patients as I did for African HIV patients.

    I explained that there was hope: researchers in Norway are using the cancer drug Rituximab with ME patients, and there is about a 66% response rate. But Canadian ME patients can’t access Rituximab as an off-label medication, and of course there are no Canadian research studies using Rituximab in ME patients, because there is no ME research funding.

    I then disclosed that I had been recently diagnosed with a high-grade squamous lesion on my colon. So now, as a Canadian living with ME, my health choice is to either treat the lesion with a simple, safe procedure, or wait, hope the lesion turns into cancer, so I can maybe get access to Rituximab to treat both cancer and ME. I stressed how currently the only hope for treatment for Canadian ME patients was to hope for cancer.

    Dr. Bested then spoke to the challenges in research and treatment, and Margaret Parlor spoke to the statistics that expose the unmet health care needs of ME patients. As a next step, Dr. Rancir asked us to provide an outline of what is expected of the Ministry of Health to make progress on biomedical ME research.

    As the meeting ended, I also shared with Dr. Kancir my passion for triathlons - that I was the first person living with HIV to compete at the triathlon world championships and had represented Canada 3 times at the triathlon world champs. The last time I was well enough to race a triathlon was 2014. The medals from those last few triathlon races hold a lot of meaning for me.

    As a reminder of what I was capable of before I got sick with ME, what I hope to be able to do again, and the critical importance of taking action, I gave Dr. Kancir my first place medal from the Wasaga Beach triathlon in 2014.

    ______________________________________________________________________________________

    It may be helpful if Minister Philpott receives positive feedback for this opportunity to inform the new government of the health care needs of Canadians with ME.

    Even something simple like: Thanks for hearing ME patients' unmet health care and research needs.

    Email:

    Hon.Jane.Philpott@Canada.ca

    Twitter:

    @JanePhilpott
     

    Attached Files:

  2. Kati

    Kati Patient in training

    Messages:
    5,433
    Likes:
    19,361
    Well done, Scott! Fantastic!
     
    Mary, Jennifer J, Ritto and 13 others like this.
  3. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    866
    @ScottTriGuy, @Kati, @Old Bones -- way to go -- excellent work!!

    As I prepare to ask for an appointment with my MP to draw their attention to National ME/FM Action Network's invitation to the Parliamentary breakfast in Ottawa on May 19th, what do you recommend as the best way for my MP to support Minister Philpott & Dr. Kancir?

    Thanks!
     
    meadowlark, L'engle, Kati and 2 others like this.
  4. helen1

    helen1 Senior Member

    Messages:
    968
    Likes:
    1,339
    Canada
    Wow, what a wonderful surprise that you made this happen @ScottTriGuy! Excellent presentation, thank you...

    How did Dr Kancir appear to respond to you? What about Min Philpott?
     
  5. Old Bones

    Old Bones Senior Member

    Messages:
    800
    Likes:
    4,763
    CANADA
    Hi Scott,

    I thought of you numerous times yesterday, wondering how things were going . . . and hoping that it won't take you too long to recover from the intense mental exertion, and the demands of travel. If you felt a supporting hand on your shoulder, it may have been mine.

    Thanks again for "putting yourself out there". Good job!
     
    MastBCrazy, Hutan, Mary and 11 others like this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    12,759
    Likes:
    33,927
    UK
    Very impressive, @ScottTriGuy!

    So sorry to hear about your latest health problem - and what a ridiculous situation it points up for us all.
     
    MeSci and ScottTriGuy like this.
  7. Amaya2014

    Amaya2014 Senior Member

    Messages:
    215
    Likes:
    541
    Columbus, GA
    @ScottTriGuy nicely done! Sending you a virtual hero award today.:thumbsup::love:
     
  8. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
    Excellent @ScottTriGuy ! A very powerful Canadian testimony and voice for us!

    I too am preparing something for my MP in response to the Breakfast invitation extended by the National ME/FM Action Network. Good opportunity to include something further as @waiting has alluded to.
     
    Kati and ScottTriGuy like this.
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,066
    Likes:
    4,256
    Toronto, Canada
    Thanks!

    I'm partial to sound bytes cause they're easy to remember - that's why I like 'stop the harm, start the research, start the treatment' - I think captures - but any positive, civil response would be helpful.

    ETA: I think if your MP indicates they have ME patients in need of health care and research, would reinforce our concerns.
     
    katefb, Justin30, L'engle and 4 others like this.
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,066
    Likes:
    4,256
    Toronto, Canada
    The meeting was only with Dr. Kancir - he seemed to empathize with my narrative, and receptive to learning more about the illness - he indicated that physician groups were outside the jurisdictional boundary of the Ministry - he also expressed concern about jurisdictional boundaries with the CIHR.

    Problem is we've been trying to change those institutions approach to ME for decades to little avail, and they've failed to self-correct.
     
    MastBCrazy, ukxmrv, Cheshire and 6 others like this.
  11. BurnA

    BurnA Senior Member

    Messages:
    2,005
    Likes:
    8,992
    @ScottTriGuy thanks so much for all the effort you put into this.

    Really inspiring, its great to read a thread here and think wow, isn't that great. :thumbsup:
     
    mango, Amaya2014 and ScottTriGuy like this.
  12. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
    @ScottTriGuy

    Email of thanks sent to Dr. Philpott - good idea!
     
    Mary and ScottTriGuy like this.
  13. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
    @ScottTriGuy

    May we use your document 'Patient Perspective' to send to our MPs ?
     
    ScottTriGuy likes this.
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,066
    Likes:
    4,256
    Toronto, Canada
    Yes, that's a great idea!
     
  15. panckage

    panckage Senior Member

    Messages:
    621
    Likes:
    733
    Vancouver, BC
    Thanks Scott!
    Following email sent to Dr. Philpott:

     
  16. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,809
    Likes:
    9,237
    Toronto
    Wow. This is terrific news. Thanks @ScottTriGuy for your efforts.
     
    MeSci, BurnA and ScottTriGuy like this.
  17. Kati

    Kati Patient in training

    Messages:
    5,433
    Likes:
    19,361
    Tell your story. Speak about the neglect, how the lack of research affects you. Speak of the stigma. Speak of missed career, and how there are over 400 000 like you, where only 100,000 (25%) of us is able to work and 100,000 (25%) is housebound and bedbound with no health care.
     
    Last edited: Apr 15, 2016
    MeSci, mango, L'engle and 2 others like this.
  18. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    866
    Yes, I definitely will speak about these important things -- it's what I did with my previous MP for the 2013 breakfast...

    ... however, as @ScottTriGuy mentioned above, what, specifically, can an MP can do about the jurisdictional issues (e.g. are we talking a bill presented to parliament)?

    I'm wondering what specific action an MP, representing constituents who have ME like us, can take, at least re: CIHR? A PR member recently (so sorry, can't recall who) discussed how the US works differently from other countries (i.e., if I understood correctly, they were saying in the US, speaking to a congress member can result in action by NIH).

    So, the question is: do our Canadian MP's have the same power with CIHR? (Canadian Institute for Health Research) If not power per se, what can an MP specifically do on our behalf?

    (add: if the MP's attend the breakfast, I assume the National ME/FM Action Network will tell them what they are being asked to do! :)I'm just wondering if we can emphasize the message when we contact our MP's to invite them.)
     
    Last edited: Apr 15, 2016
    MeSci, panckage, shannah and 2 others like this.
  19. L'engle

    L'engle moogle

    Messages:
    1,552
    Likes:
    2,326
    Canada
    @ScottTriGuy Great work Scott and others who participated! :)
     
    MastBCrazy, MeSci and ScottTriGuy like this.
  20. meadowlark

    meadowlark Senior Member

    Messages:
    237
    Likes:
    398
    Toronto, Canada
    What an achievement Scott. And thank you.
     
    MeSci and ScottTriGuy like this.

See more popular forum discussions.

Share This Page