Parliament – Bill C-442 transcript and patient concerns over term “Best Practices”

March 4th, 2014,

On March 3rd, 2014 in Canada’s House of Commons, Elizabeth May brought her private member’s Bill C-442, the National Lyme Disease Strategy Act, to the floor for second reading.  It has support across all parties. 

The one point that CanLyme has received many emails and phone calls about in the past 24 hours was the indicated desire to change the term ‘standard of care’ to ‘best practices’.  Victims of Lyme Disease over the past decades fear this term ‘best practices’ the most.  

Chronic disabilty and death are not the ‘aches and pains of daily living’ as stated in the current ‘best practice’ guidelines. Lyme Disease cannot be defined by the poor test (now acknowledged as a very poor test) as the ‘best practice’ guidelines have defined it.  An infection from Borrelia and other co-infections that come from the same tick must define the illness in that Lyme Disease has been shown to be caused by many strains of Borrelia that we may be exposed to, and frequently, other confounding pathogens.  Each strain of Borrelia does not cause the same symptoms as shown in research, yet the current ‘best practice’ guidelines reflect only one, non-wild, laboratory strain and the symptoms it may cause.

The victims of this disease (and victims of ‘best practices’) attempted to have their voice heard during the past 25 years but were shut out of the process.  As a result ‘best practices’ continued to cause death and disability Canada-wide. Those ‘best practices’ guidelines were dogmatic and ill conceived, yet were imposed upon the Canadian public without regard for the wide international debate in medical science circles questioning the quality of the science used to to impose a lifetime of disability and financial collapse on the many thousands of victims.  ‘Best practices’ have left a trail of devastation in spite of the arguments from the patients and their experts over the past 25 years, arguments which have now been shown to have been correct.

Whatever term is used, the victims and their experts must be brought into the process as equal partners to write these ‘best practice’ guidelines, otherwise this was all for not.  There is an intentional movement within the medical leadership of Canada to prune research to select only that which fits their dogma. This is clearly evident in the many Freedom of Information searches done in various provinces across Canada. 

The lowly public do not have a chance up against the powerful medical lobby across Canada and only our politicians, who watch their once healthy constituents fall to ‘best practices’, can change the system to the benefit of all.

Another 25 years of imposed ‘best practices’ without equal patient input will bring the medical system to it’s knees in terms of health care dollars required to administer the rapidly increasing chronically ill population.  Employers with large contingents of outdoor workers are already being affected and this will only increase significantly unless the system includes the watchful eye of the victims and equal input from their experts.

The time is now for our elected representatives to ensure the public is protected from poorly contrived ‘best practices’.  It is common sense that simply having a specific degree in medicine, or microbiology does not give one licence to exclude the very educated voice of the victims and their experts. Will we truly see common sense brought into the medical bureaucracy, who to date have been allowed to do whatever they want with our lives and to hell with anything we say (because they can), and will our elected officials protect us and insist on an equal partnership?

Read transcript

 

7 Comments

  • glen says:

    The time is now for our elected representatives to ensure the public is protected from poorly contrived ‘best practices’. It is common sense that simply having a specific degree in medicine, or microbiology does not give one licence to exclude the very educated voice of the victims and their experts. Will we truly see common sense brought into the medical bureaucracy, who to date have been allowed to do whatever they want with our lives, or will our elected officials protect us and insist on an equal partnership?

  • Leona O'Neill says:

    Best practices have been employed in the past and thus inaccurate diagnoses have been given to those with Lyme disease. It is time for the provision of correct detection and appropriate treatment for Lyme.
    Specific protocol needs to be established with strategies that ensure the identification of all pathogens in the blood as the current blood test in Canada is limited in its reliability.

  • Paul Haefling says:

    Bill C442 has given Canada’s victims of Lyme disease new hope that Canadians may soon see advances made and needed progress occurring in such areas as research and in diagnostic and treatment approaches for tackling this debilitating disease. Unfortunately, the Commons members who have spoken on the Bill to date do not yet seem to recognize that there is a crying out need for consultation and opportunities for individual patients afflicted with Lyme disease and their support and advocacy groups to be heard and to become participants and contributors to the introduction of measures that may ensue from the passage of BillC442 and implementation of its terms.

    Unfortunately, the use of the phrase “best practices” in the members’ discussions on the Bill to date leaves a chill for those living with Lyme disease because that set of words has all too often in the past been used to defend and support inadequate scientific information and policy statements and approaches.Many of those Lyme disease victims would ask for other and better words to recognize and include the widest possible range of choices and methodologies for addressing Lyme disease

    The history of Lyme disease awareness and policy-making in Canada has so far excluded those voices, Yet, many Canadian victims of Lyme disease and their supporting organizations have already gained significant ” Lyme literacy” from participating in Lyme disease research and public awareness programs over many years.

    We must urge our Parliamentarians to ensure that the individuals and organization just referenced will be specifically recognized through clear and precise wording within the terms of this Bill, and that the present-day victims of Lyme disease should be represented and invited to be at the table, along with any medical or policy “experts,” for any and all discussions about moving forward in Canada’s response to Lyme disease and, most especially, in defining objectives and measures and the development of strategic objectives and programs that can address neglected areas of need in this new and welcome approach to Lyme disease that BillC442 seems to envision and aims to bring forward.

  • Paul Haefling says:

    “Let’s go, Canada”!

  • Tim Snyder says:

    I clicked on the “Read Transcript” button above and read the bill as presented by Ms. May as well as many of the comments made by other MPs at the end of her reading. It seems to me from reading these comments, especially those of Gerald Keddy (presumably on behalf of the ruling Conservative party), that by the time there are enough amendments tacked on that this could end up being little more than a geographical tracking and information dissemination effort. Mr. Keddy speaks too much of respecting jurisdictional boundaries and medical expertise. That’s what has steered this ship on the rocks to begin with and I’ve seen nothing from the medical establishment in this country indicating any intention to change course. And of course there was no mention of chronic lyme and what to do with us. I love Ms. May (God bless her) and I hope that this bill retains enough teeth to be significant in the fight against lyme disease, but I see no hope here for those of us that are chronic. Our fight must continue beyond this. Unless some form of legal recourse can be found to force the medical establishment to at least acknowledge the existence of our condition then nothing will change because no one is willing to voluntarily admit they are wrong. Just my thoughts on what I see here.

  • Jane says:

    What the Best Practice Definition Means to Me:

    (1) Being tested positive multiple times on IgG which is defined as either having chronic Lyme or past Lyme, which enables government to then pass the decision to generally uninformed specialists to determine through NON-SCIENTIFIC means, whether or not a patient has chronic or past Lyme; therefore assigning a death sentence to the individual involved which is likely to be highly inaccurate.

    (2) Creating practices that will threaten the profession of doctors who follow their Hippocratic oath, which in many instances contravenes often impractical rules for the diagnosis and treatment of Lyme Disease.

    I don’t want best practices put into place. I would just as soon have SECOND BEST. That is:

    (1) the right to ensure that specialists are taught that patients who can’t recall being bitten by a tick doesn’t mean they haven’t been;

    (2) the right to ensure that specialists are taught that many Lyme patients, (especially those used to multiple large bites who may have developed some resistance to bites) may not display or recall a target-like rash;

    (3) the right to ensure that specialists are taught that just because a patient can’t recall a rash, it doesn’t mean he or she has NEVER been bitten by a tick;

    (4) the right to ensure that when specialists receive multiple POSITIVE IgG tests for a patient on both types of Lyme tests, (Elisa and Western blot) and there is question about whether or not a patient has advanced Lyme or past, there will be 100% assurance that specialists are extremely informed of all known signs of Lyme before assigning a life or death sentence to Lyme victims based on NON-SCIENTIFIC means;

    (5) the right for patients to defend and challenge medical beliefs with regard to being positive for Lyme in front of highly experienced Lyme panel chosen not just by government or insurance companies but also by Lyme patients themselves, when specialists are unaware of most of the serious conditions related to Lyme that the patient may have;

    (6) the right for patients to correct serious errors in medical files that would lead to denial of Lyme and thereby also denial of treatment and/or likely also life;

    (7) the right to ensure that physicians do not leave an ÜNSURE diagnosis in patient files ensuring the case can go nowhere.

    (8) the right to be referred to another Lyme specialist of the patient’s choice within his or her province or state, when there is strong disagreement between the patient and the first specialist as to whether Lyme is past or severe and current;

    (6) the right for patients to be given at the very least, anti-biotics during the times when their conditions cause severe inflammation for more than a week, when their cases are too far advanced to qualify for more expensive treatment that may or may not be successful and/or harmful;

    (7) the right to allow patients to be tested for the most deadly Lyme coinfections (particulary those which involve damaged P53 genes which may prevent cancer shrinkage if they have received positive IgG results and display more than three symptoms of these diseases; and

    (8) the right to be assured that all provinces and/or states be equipped to properly conduct the above tests, or otherwise be referred for testing in the more capable facility elsewhere at roughly the same patient cost.

    Is it not possible to switch from the best practice rules to second best if it means saving patient lives?

  • Jane says:

    Corrections:
    (4) … “all known signs of Lyme before” should read “all known signs of Lyme SYMPTOMS before.”
    (8) … “provinces or states be equipped” should read “provinces or states ARE equipped.”