Canada: Meeting with Policy Advisor, Ministry of Health

[Mary]

@ScottTriGuy - even though I'm in the U.S., I sent an e-mail too (we do have similar issues) - thank you so much!!!

 

[shannah]

As Kati referred to earlier, it took a new Law to be enacted to force the Canadian govt to address Lyme and develop a Federal Framework for Lyme research and treatment.

Perhaps we with ME should explore that route.

Wasn't it Elizabeth May that was responsible for initiating that in Parliament? Wonder if she's got time on her hands these days.

 

[Kati]

Wasn't it Elizabeth May that was responsible for initiating that in Parliament? Wonder if she's got time on her hands these days.

Yes, it was her, and she is the only seat in the house representing the Green Party. Lyme and Green Party goes hand in hand. The bill got passed, was it when the Liberal got the power, or was it before? I can't remember.

 

[shannah]

It was long before the Liberals @Kati A lot of people worked really hard on that but it came together quite quickly considering they were dealing with government entities.

"First introduced in June 2012, Bill C-442 was passed unanimously with multi-partisan support in the House of Commons in June 2014. It will establish a framework for collaboration between the federal, provincial and territorial Health Ministers, representatives of the medical community, and patients’ groups to promote greater awareness and prevention of Lyme disease, to address the challenges of timely diagnosis and treatment, and to push for further research."

http://elizabethmaymp.ca/news/2014/...h-mays-federal-framework-on-lyme-disease-act/

 

[ScottTriGuy]

First introduced in June 2012, Bill C-442 was passed unanimously with multi-partisan support in the House of Commons in June 2014...

and now its 2016 - almost 4 years just to get the initial meeting...how much longer before actual implementation of Lyme Framework?

There must be a quicker way to disrupt the status quo?

 

[merealcfs]

Hi Scott, Thanks very much for talking to the Canadian Health Minister's office about ME. Advocacy work is a huge drain on ME resources, and I thank you very much for your difficult work.The Health Minister's office received a copy of the DVD, "Forgotten Plague" about a month ago. Could you advise those you talked to that the DVD should be available in their office? As you are aware, this documentary is an excellent panoramic view of the ME crisis, and could be a good starting point for those not very aware of the situation. Thanks very much again!

 

[merealcfs]

Regarding the Canadian Consensus Criteria (CCC): "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working case Definition, Diagnostic and Treatment Protocols" 2003; the reason Canadian doctors do not mention it is of course, because they have never heard of it. And, the reason they have never heard of it, is because the Health Canada of the day did not disseminate this document once it was published. In other words it was shelved. One could say it was suppressed. Page 7 of the CCC says: " An Expert Subcommittee of Health Canada established the Terms of Reference, and selected an Expert Medical Consensus Panel representing treating physicians, teaching faculty and researchers. A Consensus Workshop was held on March 30 to April 1, 2001 to culminate the review process and establish consensus for a clinical working case definition, diagnostic protocols and treatment protocols...." The CCC is diametrically opposed to the Oxford and Fukuda definitions which were both very popular at that time, and still are, despite the NIH saying the Oxford criteria should be retired. It would be interesting to find out why the CCC was not disseminated to doctors.

 

[ScottTriGuy]

Regarding the Canadian Consensus Criteria (CCC):... the reason Canadian doctors do not mention it is of course, because they have never heard of it. And, the reason they have never heard of it, is because the Health Canada of the day did not disseminate this document once it was published. In other words it was shelved. One could say it was suppressed. ... It would be interesting to find out why the CCC was not disseminated to doctors.

Thanks for this @merealcfs - and for your supportive words.

That is a very good question that deserves an answer - it is indicative of systemic failures and gives more weight to the notion that an inquiry is needed to determine how this illness and these patients have been neglected.

 

[Chris]

The CCC document used to be available (though a bit tricky to find) on the Health Canada site, but yesterday I failed to find it. Has anyone else tried? Has it been taken down? Any info?

 

[Kati]

The CCC document used to be available (though a bit tricky to find) on the Health Canada site, but yesterday I failed to find it. Has anyone else tried? Has it been taken down? Any info?

It's on the Public Health Agency website, just enter myalgic encephalomyelitis in the search box. Curiously it leads to an Australian link...

 

[Kati]

It would be interesting to find out why the CCC was not disseminated to doctors.

The National ME/FM Action Network has over the years distributed hundreds of overviews to physicians. The problem is that they gather dust or end up in the recycling bin. From my perspective, family drs have no incentive to take an hour or 2to read these if they have 1 patient in their practice with th is. In my case, she went straight to Cochrane review and to the CDC guidelines.

The other problem is that there is no medical specialty attached to this disease. This means there will not be updates in conferences, no presentations at big conferences and no physicians interested in digging further, minus the odd physician with a particular interest in the matter, many of which have their particular point of view as of what we dhould do: may it be to meditate and attend group CBT, do GET, and make sure that patients is not over- tested.

Lastly. (And I talked about this stuff before) there is no research at the National level, not national strategy. This ensures that patients remain sick and without access to treatments that have potential to make a difference.

 

[ScottTriGuy]

It's on the Public Health Agency website, just enter myalgic encephalomyelitis in the search box. Curiously it leads to an Australian link...

Curiouser and curiouser.

Now the PHAC link for the CCC...http://www.phac-aspc.gc.ca/cd-mc/az-index-eng.php

is linked to the Canadian National ME/FM Action Network...http://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

Well, at least its now a Canadian link.

But why isn't there a direct Public Health Agency of Canada page like there is for every other disease on that list (except for fibromyalgia - surprise, surprise).

 

[shannah]

and now its 2016 - almost 4 years just to get the initial meeting...how much longer before actual implementation of Lyme Framework?

There must be a quicker way to disrupt the status quo?

Yes @ScottTriGuy - but what is it???

Apparently the Lyme community has just initiated an email campaign to the MOH Jane Philpott. They are protesting the lack of involvement of key stakeholders once the national conference in Ottawa from May 15th - 17th is over. The minister has one year from this date to write a report and present it to the House of Commons outlining Canada's framework for Lyme Disease.

So, not taking any of the preplanning into consideration, from the time the bill was introduced in June 2012 to next year's report deadline of May 2017 will be 5 years just to come up with a national strategy that may or may not (but probably will) need discussion, revision, etc., etc., ad infinitum.

Implementation is a long way off yet.

Does every disease go through this process or just the more controversial ones?

There has to be a quicker way but what is that?

 

[ScottTriGuy]

Wow, I did not hear that about the Lyme folks' concerns about their upcoming conference. I was contemplating attending, but think I will just register online and watch from the comfort of home. It may be quite edifying for our ME community and inform how we should proceed.

I keep thinking of that woman who confronted Minister of Veteran Affairs Julian Fantino in front of the media about the lack of funding: "We're nothing to you" - she got a lot of follow up interviews from that:
http://www.ctvnews.ca/politics/we-r...ptsd-confronts-fantino-over-funding-1.1844167

If memory serves, it was not much longer before Fantino got the boot.

Public shaming is a powerful social lever.

 

[ScottTriGuy]

Hi folks,

Thanks for all your support here on PR and by writing Minister Philpott - the extra effort by the community to bring awareness to Minister Philpott is noted by her office. Every little bit helps move us toward funding and treatment.

Today I emailed the follow up document (attached Patient Perspective - Part II, prepared with the support, skill and wisdom of @Old Bones ) to the Policy Advisor Dr Jesse Kancir and to Minister Philpott - note the explicit need for a Federal Framework for Myalgic Encephalomyelitis.

Below is the email that accompanied the document - including a request for acknowledging May 12th by Minister Philpott, and invitations to the Parliamentary Breakfast co-hosted by National ME Action Network, and a meeting to plan the next steps.

Minister Philpott may attend part of the Federal Framework for Lyme Conference (May 16 and 17). It may be helpful if she were to receive emails / tweets from ME patients about our need for a Federal Framework for ME because we have the least research funding, the most unmet health care needs, and are harmed by contraindicated treatment.

Email:

Hon.Jane.Philpott@Canada.ca

Twitter:

@JanePhilpott


Hi Jesse,


I hope you are well.


I must admit to having mixed emotions regarding our meeting on April 14th. After processing the circumstances of Canadians living with ME, I feel a sense of relief, having shared the burden of responsibility for addressing this ethical issue with you and Minister Philpott.


My concerns go beyond the experience of more than 400,000 Canadian ME patients: the least amount of research funding, the most unmet health care needs, and harmful contraindicated treatment. The long-term pattern of repeated systemic failures, and ongoing, yet preventable, harm to ME patients makes this an ethical issue of relevance to all Canadians.


As noted in the attached Patient Perspective Part II, changing the status quo can only be addressed by Federal intervention. This will require a Federal Framework for Myalgic Encephalomyelitis.


Request


Tuesday, May 12 is International Myalgic Encephalomyelitis Awareness Day. It would be very meaningful to Canadian ME patients if Minister Philpott acknowledged the day, and our health care challenges.


Invitations


On Thursday, May 19, the National ME/FM Action Network, together with Dr. Hedy Fry (MP, Vancouver Centre) will be hosting a Parliamentary Breakfast for Members of Parliament and Senators. This meeting will include U of Alberta ME researcher Dr. Gordon Broderick. The ME patient community would be honoured to have you, and Minister Philpott, attend.


If you and/or Minister Philpott will be attending the Parliamentary Breakfast on May 19, I would welcome a meeting with you to discuss the failures within our health care system with respect to this “forgotten” illness, and to outline a path towards a much-needed Federal Framework for Myalgic Encephalomyelitis. I look forward to hearing from you.


Sincerely,

Scott

 

[TiredSam]

Excellent document. Well done and good luck

 

[shannah]

Another short and sweet document Scott with clear and concise requests. I especially like that you included specific mention of not tabling a bill in order to move forward. Great effort! Thanks so much for doing this so quickly.

Nice to hear some feedback for those who contacted the Health Minister after your meeting a couple of weeks ago.

There were 29 packages mailed out earlier this week to various parliamentarians. All included an invitation to the breakfast, your document 'Patient Perspective: Part 1' as well as other relevant information and items including requesting special attention for ME in parliament on May 12th. These packages should probably be received by them either today or tomorrow.

Looking forward to hearing their reply to you.

Great work @ScottTriGuy !

 

[ScottTriGuy]

29 packages mailed out earlier this week to various parliamentarians.

Awesome!

A push now for a Federal Framework for ME with the Federal Framework for Lyme conference in just 2 weeks is very timely - Minister Philpott may be giving the Opening Remarks for the Lyme conference, so the notion of a Federal Framework will not be a foreign concept.

 

[katefb]

Wow...I am so impressed and grateful. I think the framework is clear simple and dead on. Stop the harm, start the research and the treatment. I particularly appreciate stop the harm as I feel like I have been harmed over many years by many doctors who didn't know what they were doing. I did write a fairly lengthy letter to the minister.....which I wouldn't have done without your initiating and encouraging. I have been completely writing off Canada and have been looking to the States for help. Thank you so much for what you have done.

 

[Thomas]

Great work @ScottTriGuy ! Thank you. It would be great if Health Canada would grant the use of Ampligen in Canada or even OHIP on the Provincial level. At least we could get treatment while waiting for progress. Having to try and get Ampligen through the current Special Access Program is a challenge no ME patient could undertake alone.