The federal government of Canada NOT acting in good faith so far on Bill C-442

[CanLyme note: The federal survey titled, “Consultation on the Federal Framework on Lyme Disease”  that was sent out this week to medical professionals and patient groups Canada wide is devoid of the most important stakeholder’s involvement (patients, their advocates and experts).  We should have been consulted as to the questions that were to be asked in the survey.  You can read the full survey via the link at the bottom, and as you look at the questions, ask yourself, “What has this to do with Bill C-442? and, “How will this help any Canadians with Lyme Disease?”

In fact, under Theme II “Guidelines and Best Practices” it refers only to a 1991 Consensus Conference on Lyme Disease. It completely ignores the 2006 consensus conference called the “National Lyme Disease Meeting” that was held in Toronto funded by the Public Health Agency of Canada. Here is the government’s rather whitewashed version of that meeting.  At that meeting the Canadian Lyme Disease Foundation (CanLyme) was given ten percent of the seats.  We provided experts from within and outside of Canada including from our Board of Directors. Consensus failed on many important issues due to the weight of the science and questions put forward by CanLyme and our experts.  Ignoring the 2006 conference is an insult to all of our effort and finances that went into it, and is an attempt to cleanse it from record by way of never referencing it.  This insult is on top of the insult that none of what was promised at that 2006 conference was ever acted upon.

Without any consultation with the most important stakeholders, PHAC sent this survey out to physicians, nurses, naturopaths, and patient groups. They have titled it, “Consultation on the Federal Framework on Lyme Disease” alleging this is to do with Bill C-442.  It has very little if anything to do with the Bill.  It directs those respondents to the survey to answer pre-designed questions, offers very limited ability for input, and is more about seeking data about who responds, and how they like what the government has done so far. It provides no room for the debate of the quality of the data PHAC has gathered and disseminated using our tax dollars.]

Here below is the wording of page one entering into the survey.  What it fails to recognize is that consultation with stakeholders is a requirement of all they do, under various aspects of legislation. This is not new and is not reflective of only Bill C-442.  The patients, their advocates, and their experts, have NOT been partners nor considered stakeholders in any of the federal role on any issue relative to this Bill to date.

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“An Act respecting a Federal Framework on Lyme Disease

An Act respecting a Federal Framework on Lyme Disease (Act) came into force on December 16, 2014. The Act commits the Minister of Health to convene a conference within one year of the Act receiving Royal Assent with provincial/territorial health ministers, and representatives of patients’ groups and the medical community for the purpose of developing a federal framework on Lyme disease that includes:

National medical surveillance: to track incidence rates and the associated economic costs of Lyme disease in Canada.
Guidelines: to establish guidelines regarding the prevention, identification, treatment and management of Lyme disease, and to share best practices throughout Canada.
Education and awareness: to develop standardized educational materials for use by Canadian public health providers to increase national awareness about the disease.

What is the Federal Role in Lyme Disease?

The Government of Canada is committed to reducing the risk to Canadians posed by Lyme disease. While medical diagnosis and treatment for Lyme disease fall under the responsibility of provincial and territorial healthcare systems, the Government of Canada provides a national leadership role in the following areas: surveillance, guidelines, best practices, research, laboratory diagnostics (testing), prevention, and public education and awareness.

Surveillance: The Government of Canada coordinates national surveillance of Lyme disease in partnership with provincial and territorial governments and local public health authorities. Through this activity, the Government of Canada reports annually on the national number of Canadians with Lyme disease and the locations of tick populations to identify where in Canada there is a risk of getting Lyme disease. This information helps Canadians to better protect themselves against this infectious disease.

Guidelines: The Government of Canada is responsible for national public health guidelines for Lyme disease. These guidelines are used by public heal
Clinical or treatment guidelines on Lyme disease fall under the responsibility of the medical associations/colleges and provincial licensing authorities. The Government of Canada mobilises these groups to update the national guidelines.

Research: The Canadian Institutes of Health Research is the Government of Canada’s health research funding agency, with a mandate to support the creation of new knowledge and its translation in various health areas including Lyme disease.

Laboratory Diagnostic Testing: The Government of Canada’s National Microbiology Laboratory, along with some provincial laboratories, provides assistance to clinicians through laboratory testing to diagnose Lyme disease.

Prevention/Awareness: The Government of Canada works closely with provincial and territorial governments and other partners to educate and raise awareness of Lyme disease so that Canadians can better protect themselves against this infectious disease.

This online consultation is intended to capture input from stakeholders which will inform the development of the Federal Framework on Lyme disease.th officers and health care practitioners to assist them in carrying out prevention, identification, and surveillance of Lyme disease.

In partnership with provincial and territorial governments, the Government of Canada develops laboratory diagnostic guidelines on Lyme disease. These guidelines assist physicians in assessing patients for Lyme disease, and help guide laboratory testing to detect Lyme disease.”

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We invite any medical professional or scientist to offer their input as to how the results of this survey would have any value what so ever.

Access all pages of the survey without having to answer page by page as is what the government requires you to do…

Click Here

9 Comments

  • Linda Hartford says:

    This is not very kind, but, if one or maybe several of the “Powers that Be” contracted Lyme Disease (or maybe their wife, child, parent!) maybe they would begin to take Lyme Disease seriously.
    Right now in BC it’s easier for an animal to be tested for Lyme Disease (and have correct results) than it is for humans to be tested properly. Maybe we should be visiting the vet!

  • Tom Yurkiw says:

    Hi

    So now do we do? I had a tough day to and went and sat
    On a chair overlooking our lake. I was in horrific pain. I have tried everything.
    I am not suicidal, however today if I had a gun I would have
    Pointed at my head and pulled the trigger. I don’t want to die
    But I can’t keep living with this severe pain. At least the pain would
    Stop. I love life to much to do this but when are backs are against
    The wall it is tempting.

  • Myrna Lee says:

    Wasn’t there another conference in Winnipeg a few years ago that is being completely ignored? I have been trying to get the report from that conference and nobody seems to know what happened to it. Anyone out there have a copy?

  • Deborah Hart says:

    It seems that until those responsible for the fraudulent science published thru the USA CDC – which Canada follows – are charged & the truth is allowed to surface, this kind of BS will more than likely continue in it’s distracting nature for as long as the government & BigPhatPharma keep hugging each other. Research & awareness are a waste of time right now until the dirty back door politics are acknowledged & fraudsters are made accountable. For the science charge sheets see : http://www.ohioactionlyme.org

  • Gail Cleverley says:

    Talk to the people. I was misdiagnosed at the CDC in Vancouver in 2000 and again at the CDC in Kamloops in 2010. Only after a broadcast on CBC regarding Lyme Disease and a follow-up call with Dr. Ernie Murakami, did I learn that I had been misdiagnosed and that I had acute, persisting, active Lyme Disease with co-infections. Then, tremendous anxiety for myself as a very sick person began trying to get treatment. This disease sidelined me in every possible way from the age of 45 and I am now approaching my 62nd. birthday. On medical leave from my High School Teaching position from 1999 to 2011 with a diagnosis of a Chronic Fatigue Syndrome from the CDC. I had Lyme Disease!! Even the CDC couldn’t correctly diagnose Lyme Disease, never mind my GP. Had it not been for the CBC broadcast and my follow-up call with Dr. Murakami, I would not know to this day that I indeed have Lyme Disease.
    Talk to the people, hear their stories…..let’s hear some ownership and validation.
    To this day, I do not know what to tell someone who thinks they may have Lyme Disease in Canada. Where can they go to feel confident about their diagnoses AND how would they get adequate treatment??? If the CDC misdiagnosed me twice, we have a serious problem in this country!!
    Talk to the people…hear their stories. This is a very serious situation.

  • Shari Millard says:

    If they don’t hear us it means we’re not talking loud enough. Maybe they count on the fact that our physical, mental and emotional tanks permanently hover near empty. Birds of a feather need to flock together and sing louder.

  • Twyla Weimer says:

    Well, the forms do leave room for me to let the government know that I am not counted in their nunbers of Canadian s sick with Lyme, that medical doctors have not helped me, but naturopathic doctors have, that the information they have posted on their websites is only for the very early stages of Lyme Disease, and that I have many more illnesses than just Lyme Disease, I have now three tick borne infections – all very serious conditions on their own.

    I was also able to follow-up with a detailed email on my medical experiences and where I have found relevant information on my condition.

    I would say that is a lot of useful information for the government to know and encourage everyone sick with Lyme or know people sick with Lyme, and their caregivers to fill out the consultation. It is not a survey at all by the way, but a public consultation and should be looked at as such.

  • Twyla Weimer says:

    Oh.. yes. I was also in my email able to suggest infection testing and tick testing changes. So I guess all of that is something and not nothing.

  • Canlyme says:

    Can you imagine the dollar value of the information gleaned from this “survey” that went into this compared to what could have been achieved through collaboration? You should not have had to follow up with an email in response to the survey to get good information to government. The survey missed the golden opportunity of acquiring that information in it’s design. This is not a public consultation as it is directed one-way. It is a survey, nothing less. The well informed public had no input as to what questions needed to be asked to acquire usable results.