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We’re going to ask Minister Philpott some questions about ME. What would you like answered?

Discussion in 'Millions Missing Campaign' started by ScottTriGuy, Aug 22, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    If you could ask Minister of Health Dr Jane Philpott any question about ME, what would it be?


    Millions Missing Canada is gearing up for our campaign’s objective of meeting with Minister Philpott about creating a national strategy for ME and we need your help in developing the questions we will pose to Minister Philpott in our new “Ask Minister Philpott” video campaign.


    We want to build on the momentum created by the upcoming global Millions Missing campaign and the Canadian virtual demonstration on September 27th.


    To leverage that momentum we are producing a series of videos intended to increase awareness of ME issues with Minister Philpott, the media and the public. In the series “Ask Minister Philpott”, we will pre-record ME patients asking Minister Philpott a question about ME research funding or healthcare.


    These videos will be edited for consistent branding and messaging and will be released every week or so as part of our consistent and persistent advocacy campaign to have a meeting with Minister Philpott about creating a national strategy for ME.


    But now we’re at the brainstorming stage and creating a list of relevant questions to ask Minister Philpott and need the ME communities collective wisdom determine the best questions.

    Basically each question will have 2 parts: first a statement of fact (X) about ME, followed by a question framed by ‘a meeting to discuss a national strategy for ME to address fact X’.


    Examples:


    Minister Philpott, the government’s own data in the Canadian Community Health Survey 2014 shows ME patients have by far the highest unmet healthcare needs of all chronic diseases. When will you meet with ME patients to talk about how creating a national strategy for ME will improve the quality of healthcare of ME patients?


    Minister Philpott, the government’s own data of research funding shows that the average investment for MS, Alzheimer’s, Parkinson’s, and Epilepsy was $158 per patient, but for ME it was a shocking and paltry 11 cents per patient. When will you meet with ME patients to talk about how creating a national strategy will establish biomedical research funding commensurate with the severity and prevalence of ME?



    What question would you like to ask Minister Philpott about ME research funding or healthcare experience? What is important for her and the public to know? What question is important that she answers?
     
    Comet, Kati, leela and 5 others like this.
  2. Groggy Doggy

    Groggy Doggy Senior Member

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    Well I am not Canadian...so I hope it's okay to offer my feedback. I don't know the full situation in Canada for ME HealthCare. But from the little bit I do know, it seems there may be a few options to consider (maybe not for the videos, but just to think about):
    1) If Minister Philpott is unwilling to improve the 11 cents per patient in research, then is she willing to consider placing ME research into another bucket (or 2) that's well funded? For example, in the US we have serious diabetes issues; it's very well funded. I consider ME to be an illness that can be helped with Metabolic knowledge. The other area is heart disease (many ME peeps have tachycardia/POTS/OI); in the US heart disease is also well funded.
    2) If the health care system is not offering comprehensive testing, then how can a doctor correctly diagnose ME? What specific tests are done to rule out other illnesses? I would push this point!
    3) If all else fails, then ask her what kind of reimbursement plan does Canada offer, so patients can see a ME specialist outside of the country?
     
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  3. L'engle

    L'engle moogle

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    If there is one I have not heard of it! Good question.

    Patients here have no way to prove they are ill yet are still on the hook for this fact and made to feel like their integrity is worthless because they cannot prove their illness.
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks @Groggy Doggy

    I like the reimbursement question, very timely - twice in the past week Minister Philpott has been outed by the media for charging grandiose expenses on the public tab and has had to reimburse out of her own pocket.
     
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  5. Groggy Doggy

    Groggy Doggy Senior Member

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    In the US, we call it medical tourism. We can apply to get our health insurance to cover out of country costs. I wondered if you can do the same thing? Here are a few links:

    http://www.health.alberta.ca/AHCIP/coverage-outside-Canada.html
    http://www.health.gov.on.ca/en/public/programs/ohip/ooc_faq.aspx
    http://www2.gov.bc.ca/gov/content/h.../medical-benefits-outside-of-british-columbia

    http://www.hc-sc.gc.ca/hcs-sss/medi-assur/faq-eng.php#a10
    "Am I covered for health services that I leave the country to obtain?
    Prior approval by your provincial/territorial health insurance plan may be required before coverage is extended for elective (non-emergency) health services obtained outside Canada. Individuals who seek elective treatment out-of-country without obtaining approval from their provincial or territorial health insurance plans may be required to bear the cost of the services received."

    So basically, ask Philpott if she can give some kind of blanket authority for ME patients, so they may gain access to tests and treatments that are not available in Canada. Argue that Canada does not hold ME health care expertise as compared to for example the United States. You can show a slide with the numerous clinics we have in the US, with tests and treatments offered. So the choice is up to Philpott, either send doctors to the US to get training/expertise, expand testing to include what is offered in the US, and up the research money for ME ....OR allow Canadians access to reimbursable health care in the US.
     
    Last edited: Aug 23, 2016
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  6. Kati

    Kati Patient in training

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    Dear Dr Philpott


    Question 1
    ME does not belong to any medical specialty nor is it officially part of the curriculums in medical schools.
    1) How can patients have access to competent care if the physicians have no knowledge of their disease
    2) what can Health Canada/ministry of Health/public health agency of Canada do to address the situation with the physician groups to discuss specialist care and medical education?
    3) should there be a study to measure the impact of 30 years of neglect on a diseases which leaves 410,000 Canadians behind?

    Question 2
    The Canadian government has generously pledged over 700 millions to help third world countries in dealing with AIDS, tuberculosis and malaria, while 411,000 Canadians live with myalgic encephalomyelitis, with no treatments, no biomarker and oftentime below the line of poverty due to their disability. One of the first visit that Minister Philpott did when she went in power was to visit Dr Julio Montaner to discuss HIV/AIDs.
    1) in the spirit of equality for all in Canada, do you think that 411,000 patients living with ME deserve funding for research, compassionate access to drugs that may help in the light of no treatment made available?

    Question 3
    MInister Philpott may or may not be aware of the huge controversies surrounding flawed and harmful Cochrane reviews surrounding ME, which recommends useless and harmful use of cognitive behavioral therapies and graded exercise therapies. The influence of the psychiatric lobby has unfortunately been successful in inserting its bias at all levels of health care from government to medical schools to the doctor offices.
    1) What strategy can the health ministry use to change the narrative and begin a new era in Canada for the ever growing community of patients whose illness began with a viral infection?
    2) How can the ministry recruit biomedical researchers in entering the field of ME
    3) what new and upcoming technologies can be used to find cause and treatment of the disease?
    4) how can Canada collaborate with the international community in finding solutions for patients with ME?
     
    Last edited: Aug 24, 2016
  7. Groggy Doggy

    Groggy Doggy Senior Member

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    Hi Kati,

    These are all well thought out; great job!

    Regarding #3, I am assuming the Minister is looking for ways to reduce costs. Is there any way to show that international collaboration will reduce costs for Canada? (avoid redundant research, avoid silos)

    Thanks!

    Janine
     
  8. Kati

    Kati Patient in training

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    I was thining about international collaborations so the new researchers can be primed into the current state of knowledge, as to not reinvent the wheel and also so they do not stray with the current closed minded physicians who think it's all in our heads.
     
    Last edited: Aug 23, 2016
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  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Awesome!! Thanks @Groggy Doggy I had not thought of that angle!!

    Perhaps a provocative headline would be:

    "ME patients forced to be medical tourists by healthcare system"
     
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  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Kati

    Those are all smart and excellent questions Kati - so much info to work with - please keep them coming!!
     
    Kati likes this.
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    With the Global AIDS, TB, and Malaria Replenishment Fund in Montreal on Sept 16, getting this question out during that news cycle may gain some traction.
     
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  12. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    On further thought - perhaps the Global AIDS, TB, and Malaria Fund conference is an opportunity for the global ME voice to also be heard - a press release, a live facebook press conference, etc

    "ME patients demand to be included in global epidemic funding"

    ME: the ignored / forgotten / hidden / invisible epidemic
     
  13. Valentijn

    Valentijn Senior Member

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    Perhaps "medical refugees" instead? "Tourists" sounds a little ... casual.
     
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  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    oh yeah, way better!
     
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  15. L'engle

    L'engle moogle

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    I'm hesitant about the angle of comparing ME funding to relief for third world epidemics. This could backfire and make us sound like spoiled first-worlders catastrophizing. Comparing how bad our situation is to other disease categories in first world countries seems fair to me. Comparing us to illnesses that kill off entire third world populations but can be prevented or mitigated by existing treatments doesn't seem like an accurate parallel to me.

    Yes the situation for ME patients, particularly severely affected, is very bad, but I don't think we will win support by looking like we begrudge humanitarian aid to the millions in the world who live in very very extreme poverty.
     
    Valentijn likes this.
  16. Kati

    Kati Patient in training

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    i tried to get out of country coverage. The answer from my provincial government is " we don't cover chronic fatigue for out of country care" in the same way, Lyme patients are not covered for US treatment. The rules are pretty clear. The treatment you are seeking must be endorsed by a local doctor- it must not be experimental. And so on.
     
    L'engle likes this.
  17. Groggy Doggy

    Groggy Doggy Senior Member

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    Okay, then i would ask philpott to change the policy for patients diagnosed with chronic fatigue (a blanket diagnosis). At the very least, you need access to testing to find out why you are ill.

    I would spin it this way to philpott..... I would state that there are no biomarkers to determine a diagnosis of chronic fatigue. That's it's an unfair diagnosis, because it's basically a death sentence. Patients will be ignored, no further testing or treatment will be provided.

    Where is the medical test (labwork, MRI, xray, etc) that proves I have Chronic Fatigue? There is none. If there is not a proven methodology to determine the diagnosis, then it's unfair diagnosis in Canada, because my health system will stop treating me.

    I would say, that you feel a diagnosis of CFS is basically being used as a 'creative way' to reduce medical costs. It's unfair, biased, and hurts people.
     
    Last edited: Aug 24, 2016

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