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Health Canada "passes the buck"

Discussion in 'General ME/CFS Discussion' started by Old Bones, Jul 7, 2017.

  1. Old Bones

    Old Bones Senior Member

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    Here's the content of a letter I sent to Jane Philpott, Minister of Health, in March of this year.

    "Thirty years ago, I enjoyed an enviable life, and lifestyle – newly married with a successful career, advanced educational goals, volunteer activities, many friends, an active sporting life, interesting hobbies, and exciting travel plans. In mid-October 1988, I caught a viral infection. I haven’t been well since.

    I was among the lucky ones. It took only two years for me to be diagnosed with Myalgic Encephalomyelitis (ME). Doctors could offer nothing to improve my physical and cognitive limitations, or alleviate my pain. I was told understanding of ME was similar to that of Multiple Sclerosis 25 years prior. So, I mentally marked my calendar for the year 2015, and did my best to manage my disease while waiting for medical science to “catch up”. I’m still waiting. In 2017, it is even more difficult for many ME patients to find a knowledgeable Canadian physician than it was for me in 1990.

    With increasing age, I have developed other health problems. This has provided an opportunity to evaluate our medical system’s effectiveness in diagnosing and treating recognized illnesses. The difference in health care I’ve experienced with Rheumatoid Arthritis, for example, compared with the complete abandonment of ME, is profoundly disturbing. Because, of all my medical conditions, ME is by far the most disabling.

    Now in my 60’s, I can’t recover those lost decades. For me, it’s too late to form memories of a rewarding adult life well-lived; too late to develop the close relationships required to avoid social isolation in my approaching old age; too late for the children, and grandchildren, I would have had. But, with a decision from your Ministry to include ME in its commitment to universal healthcare, it’s not too late for young ME patients to avoid the devastating losses I’ve endured.

    With respect to ME, what are you doing to reduce health inequity as stipulated in the Health Canada objectives? I look forward to hearing from you."

    And here's the text of the response I received today. To be honest, after almost four months, I'd stopped checking the mail box in anticipation -- not that the message received gave me any hope that the situation in Canada will change any time soon.

    "Thank you for your letter addressed to the Honourable Jane Philpott, Minister of Health, outlining the difficulties faced by patients afflicted with Myalgic Encephalomyelitis (ME). Apologies for the delay in responding.

    We are sorry to hear about your health difficulties and about what you have experienced and sympathize with you for your ongoing challenges in seeking adequate treatment.

    The Canada Health Act, Canada's federal health care insurance legislation, defines the national principles that govern the Canadian health care insurance system. The Act establishes the criteria and conditions related to insured hospital and physician services that the provinces and territories must fulfill to qualify for their full share of the federal cash contributions under the Canada Health Transfer.

    Although the federal government plays a role in supporting health care by providing funding to the provinces and territories, the provincial and territorial governments have primary jurisdiction in the administration and delivery of health care services. If you have not already done so, you may wish to contact the Minister of Health for Alberta, who can be reached at:

    Thank you, again, for writing.

    Sincerely yours,

    Strategic Policy Branch
    Health Canada"


    There was no signature, and no name, on the letter.

    Have any other Canadians received a similar letter? If so, what was your interpretation? Mine is that at least for the time being, ME is intentionally not a priority for Health Canada, despite valiant efforts to bring the illness to the attention of the federal government. Why else would the response have come from the Strategic Policy Branch? Take a look at the definition of "strategic"!
     
    Last edited: Jul 7, 2017
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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  3. Dechi

    Dechi Senior Member

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    I am not surprised, but saddened. Canada would rather spend millions on polio, which nobody has anymore, than on ME, affecting hundreds of thousands of Canadians.
     
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  4. Kati

    Kati Patient in training

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    The different answers over the last few months are similar. Passing the buck is what is happening. Dr Phillpott is not interested or willing to address this crisis. She may not have been educated or may have been wrongly educated about the disease.

    Essentially she is correct in that health care is of provincial jurisdiction. However there are things that she the Canadian Health minister can do: allocate more funds for research at CIHR. Invest in a federal strategy where physicians and patients will come together to review the state of affairs, address the gaps in knowledge and science, establish priorities in research, discuss international collaboration, discuss medical education and medical specialty assignment so no patient falls through the cracks. She has the capacity to address the stigma in health care, in research funding and in society. There is plenty of work that the health minister can do, and unfortunately we have very little leadership (not pointing fingers at anyone), if at all.

    Thank you for writing your letter @Old Bones. I encourage others to write too and challenge her to address some of what I mentioned above, and perhaps there are better ideas.
     
    Last edited: Jul 8, 2017
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  5. Old Bones

    Old Bones Senior Member

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    I agree with everything you said in your post, @Kati . Regrettably, I suspect Philpott and Health Canada know exactly what they're doing (or more accurately not doing) with respect to ME, and that it is intentional. Why else did the response to my letter come from the "Strategic Policy Branch"? These three words say a lot more than the content of the entire letter from Health Canada.

    Strategic: carefully designed or planned to serve a particular purpose or advantage.
     
  6. Kati

    Kati Patient in training

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    I think things are bound to change with research, especially the work from team Davis. In the meantime, we have to keep on writing, demanding, educating and telling our stories.
     
  7. Old Bones

    Old Bones Senior Member

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    Absolutely, but advocacy efforts are not effective when those on the receiving end don't read the message. I suspected this would be the case with my letter to Minister Philpott, and this appears to be the case.

    The content/tone of my letter was very intentional, targeted from one woman of "advancing years" to another. It was designed to link my story to her primary "photo op" issue at that time -- the impact of social isolation on peoples' well being. Also, I was hoping she would remember her words from a very moving article on her website about the death of her young daughter years ago. She closed the article by saying:

    "Sometimes we do have to be patient in the face of loss. We cannot change the past. But we can change the future. If I can help transform circumstances so that the children of today have better opportunity to live long, healthy and meaningful lives, I will have found grace in the face of grief."

    Doesn't that sound like the perfect mindset for a health minister to have when contemplating Canadians living with ME (or any abandoned, invisible illness)? The full article can be read here: http://janephilpott.ca/grace-in-the-face-of-grief/

    Unfortunately, the strategic policy bureaucrat who responded to my letter wasn't the right target for this particular message.

    Personally, I wonder if we're not including as many groups of people with our advocacy efforts as we could/should be. During the past year or so, I've had many appointments with medical specialists and recently-graduated doctors regarding non-ME conditions. I've made a point of educating every one of them. Not one was aware of ME, but they all appeared receptive.

    At some point, treatments will be available. And when they are, we'll need to already have in place a broad base of medical practitioners who are knowledgeable enough to demand these treatments for their patients. They may have more clout in influencing change. Perhaps advocacy efforts should also include educating the large cohort at the bottom of the pyramid, rather than the few at the top. I know I'll continue to do so, one person at a time.



     
    Last edited: Jul 8, 2017
  8. Alvin2

    Alvin2 If humans were rational...

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    Sounds like a boiler plate letter to me, it may be meant for anti vaxxer type myths, it may be just the result of a bureaucracy, it could be dismissal.
    I agree that they are not going to listen till we make them listen, but the nature of ME/CFS makes it hard for us to force this issue to the mainstream until they acknowledge and put their money where their mouths are and take this seriously.
     
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  9. Kati

    Kati Patient in training

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    I just had an idea. i wonder if we could gather all letters to and from the government onto one website. Some will keep answers in their records. There will come a day when it will matter to have all this in the open.

    Comments?
     
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  10. panckage

    panckage Senior Member

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    Vancouver, BC
    That's a good way to think about it. I'm planning to do this with a letter abiut my "treatment" at the CCDC. There will be a portion for each specialist listing the goals I had, what was said and what actually happened at the appointments. I hope it can help educate them about "chronic fatigue." But I think that is a minor issue in the grand scheme of things. I think the main issue is the the goal of the center is minimum cost... Which it certainly wins a shiny gold medal for. I want to see if I can expand on this higher up the food chain

    Currently I'm waiting until my treatment at the center ends (begins?? :rofl:) before sending the letter
     
  11. Wishful

    Wishful Senior Member

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    I too have written letters to Health Canada and my MP. Same pass the buck response. The provincial level is the same. It's always someone else's responsibility to help you. The people who are supposed to help (Patient Advocate, ombudsman, etc) seem to be just paid apologists for the system.

    I don't think there's much we can do until the research community provides incontroversial proof that CFS is a valid medical disorder. Without that proof, the powers-that-be can just ignore it.

    BTW, has anyone noticed how difficult it is to access the people in the medical system? There used to be an email address for various departments in Alberta health Services. Last time I tried, there was only one address for AHS, and that department was useless at providing help. The powers-that-be have built a wall to keep the lesser people out, so they don't have to listen to complaints.
     
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  12. Old Bones

    Old Bones Senior Member

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    @Wishful I'm sorry, although not surprised, to hear you've received the same "pass the buck" response to your advocacy efforts.

    I suspect you meant "incontrovertible", until it was possibly changed by your computer's spell check program! This is the exact statement my husband repeatedly makes, and I usually challenge him that the proof is already there. But of course he, and you, are correct. Until there's an easy, cheap, and readily available diagnostic test, ME/CFS will not have widespread support as a valid illness. Not to mention . . . we don't have support from most members of the healthy community, who still consider us "no count, good for nothing, lazy scroungers" (quoted description attributed to "Aunt Marge" in the Harry Potter series).

    I've noticed this with all levels of government. The people who respond to our queries are usually nameless, or offer a first name only, so as not to be identifiable. Perhaps it is not only ME patients who are considered vexatious and threatening.

    With respect to our province, here's one thing I find particularly strange. In 2016, Alberta published Clinical Practice Guidelines for ME considered reputable enough to be listed as one of three resources for healthcare providers on the updated CDC site ( https://www.cdc.gov/me-cfs/healthcare-providers/index.html ), yet few Alberta doctors seem to be aware of them.
     
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  13. Wishful

    Wishful Senior Member

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    Yes, I meant incontrovertible. I thought I had the wrong word, but for some reason, I just didn't have the mental energy to pursue it. :rolleyes:

    I'm not surprised that the province 'did something' about CFS, just to say that they did something, but didn't make any effort to have it make a difference for the patients.
     

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