Draft of report to parliament regarding Bill 442 now online and open to public input.
February 7th, 2017
As per the requirements of Bill 442, An Act respecting a Federal Framework on Lyme Disease Health Canada held a conference on Lyme disease in May of 2016. It was a well balanced conference that revealed significant divergent opinions among experts on the most important issues to the affected Canadian… diagnosis and treatment.
Without engaging the stakeholders for input, the Public Health Agency of Canada has written a draft version of the report that is to be presented by the Minister of Health to parliament by May 15th of this year. Rather than follow the good faith intent of the legislation that would have seen good robust discussion on the wording of the report, the federal bureaucrats fell back into their closed door non-transparent in-house mode of operation.
The report in no way meets the mandate of the legislation. Â It ignored everything that was presented by experts and patients at the legislated May 2016 conference. It is NOT a framework and there is nothing to build upon. Â It has to be set aside and rewritten with the patients and their experts.
Now, they are asking for your input by sending an email to their email address no later than March 8th, 2017Â …Lyme [dot] Framework [dot] Consultation_Consultation [dot] Cadre [dot] Lyme [at] phac-aspc [dot] gc [dot] ca“>Lyme [dot] Framework [dot] Consultation_Consultation [dot] Cadre [dot] Lyme [at] phac-aspc [dot] gc [dot] ca
They had 9 months to draft this poor document and expect Canadians to draft a well founded response within 30 days. This is a tactic they use regularly to control messaging.
Patients were not heard … for example watch this clip of Sarah Cormode’s testimony at the conference, she was one of 100 patients who told their story.
We recommend CanLyme be cc’d on any communication you send them in order to assure what input was actually provided by you does not end up being open to their “interpretation” of what your input actually was. If afterwards we ask for more details of actual input they will hide behind privacy rules just as they did with the terribly designed online survey they ran in June of 2015, again with no consultation with stakeholders in the design and data gathering methodology.
Please read the wording of the framework carefully, specifically Sec 3.
” … for the purpose of developing a comprehensive federal framework that includes
(a) the establishment of a national medical surveillance program to use data collected by the Agency to properly track incidence rates and the associated economic costs of Lyme disease;
(b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada; and
(c) the creation and distribution of standardized educational materials related to Lyme disease, for use by any public health care provider within Canada, designed to increase national awareness about the disease and enhance its prevention, identification, treatment and management. ”
The draft report that PHAC has written HAS MET NONE OF THE REQUIREMENTS LAID OUT IN SEC. 3 and it certainly was not consultative. .
SIGN THIS PETITIONÂ AND HAVE YOUR FAMILY AND FRIENDS SIGN AS WELL.
What email address would you like us to use when we “cc” Canlyme?
The framework does not mention coinfections of Lyme, which play a huge part in education, diagnosis and treatment. The framework does not mention the possibility of the transmission of Lyme by any other vector (mosquitos, spiders, fleas, etc), nor by blood transfusion, mother to child in-utero, or sexual transmission. Although the framework includes information based on clinical diagnosis, myself and many people who I have connected with personally, who are affected by Lyme, have been dismissed by the health care system because we have no positive blood tests from Canada. We have also struggled to receive medical support for obvious ongoing health concerns, due to the lack of understanding in why Lyme can be a chronic life-long disease. Many of us spend thousands of dollars out of pocket for complimentary and alternative practices, (which are not taken into account on the costs associated with Lyme disease) because we have been unable to receive adequate support from the health care system. The framework does not appear to use the most updated information available for Lyme. The emphasis on “evidence based practice” may be lengthening the process of updated information and education, since evidence, reliable diagnostic testing, and successful cures for Lyme disease may not be present in Canada, nor the United States.
This framework requires more input from the people who have been personally affected by Lyme, for some of them may ultimately have more education on the disease than the health care system, as their lives have been impacted on all levels, and many have put all their efforts into understanding this condition, in order to stay alive. It could also benefit from the input of other private health practitioners, who practice outside the health care system, and help many Lyme patients who have not found help from the medical community.
This framework appears to present Lyme disease as simple and well understood, when in reality, it may be a most complex epidemic affecting far more people than are aware.
After reading the draft, I see regurgitated IDSA Guidelines and Suppressing the people. (3)B- Surveillance, testing, treatment and Management is the same as was. You are correct about section 3 in its entirety.
This Draft shows me that there is no morals or feelings of remorse by the Public Health Agencies throughout Canada.
I don’t see any effort by the PHAC in the draft.
I, with my wife and family have spent the last 3 years chasing the Canadian medical system. I have a diagnosis, no thanks to my GP, I have serelogical test results , no thanks to my GP. Now thanks to my community where I grew up I am headed to Arizona for more effective treatment. Canada has to get its act together, the level of misdiagnosis and under treatment because Health Canada is out of touch with how many Canadians this is affecting . 90% of the treatment I have received in the past three years has been paid out of my own pocket and no way of claiming the expense on my income tax.
canlymec [at] telus [dot] net
The draft federal framework on Lyme Disease is not a framework at all. It is a statement that intends to mislead parliament into believing that all is well and that AMMI doctors are the only experts able to diagnose Lyme disease. My case of Lyme disease was acquired in Germany in 2007 and the diagnosis was missed in Alberta by having an AMMI trained doctor rely on serology set for a US strain being misused for a European strain of Lyme disease. I am left to suffer the debilitating effects of misdiagnosed and under-treated Lyme disease.
I had hoped that the framework would include a balanced viewpoint and accurate representation of what actually happened at the conference. Nowhere was there a consensus that “In Canada, the Association of Medical Microbiology and Infectious Diseases Canada (AMMI Canada) has endorsed and promoted the use of the Lyme disease treatment guidelines developed by the Infectious Diseases Society of America (IDSA).” The consensus was that these guidelines are the cause of much suffering and that the AMMI has refused to consider any other guidelines that focus on the patient and the individual patient’s response to treatment. This framework continues to spread the misinformation that “bites leading to human infection are much more common during the spring and summer months”. In Alberta, where I live, there are 2 peaks in tick encounters, one in the spring and one in the autumn. In BC, where I frequently take my vacations, the peak in tick encounters is during the wet winter months. The continued insistence that infection is much more common during spring and summer months may be true for in Ontario but it certainly isn’t true for me. Was PHAC actually listening or did they write this framework sometime in the distant past and dust it off and put a new cover on the report? This has been waste of tax payers money and hundreds of hours of volunteer labour that went into planning for the conference. There was no consultation. PHAC listened but didn’t understand, they listened but did not hear. Frameworks are intended to build upon whereas this draft framework is a plaster cast used to support the AMMI/IDSA.
To say I am disappointed would be the most massive understatement ever… TRASH THE DRAFT!
Please start again and include what is going to happen, and when, based upon the short and long term goals that were discussed at the Conference in Ottawa! That would be helpful.
It seems you have lost sight of the purpose of the conference… Please watch all the CanLyme YouTube videos of the Conference to refresh your memories.
My 19 year old who is too dizzy, too sick with Lyme and co-infections to sit up will wait here…
My 17 year old who is bound to a wheelchair and has seizures everyday and cannot attend school, due to Lyme and co-infections will wait here…
My 13 year old who has tremors and “old lady knees” will wait here…
Please actually DO YOUR JOBS. Go back and review the conference videos. REMEMBER THE CONFERENCE OBJECTIVES AND THE STORIES OF ALL THE NEGLECTED PEOPLE WHO SUFFER EVERYDAY WITH LYME DISEASE.
Please… You have to help us. Or, if you can’t… Step aside and let someone else. Where is your compassion, your sense of right and wrong?
Thank you.
Beautiful speech Sarah Cormode. So proud of you.
The draft framework fails utterly in addressing the urgent needs of Lyme patients. The draft ignores so much material from the national conference that it’s as if the conference never happened. I am outraged and devastated by the appalling status quo that is being continued by the current draft framework. Scrap the draft and rewrite it! This time in true consultation with ALL stakeholders, especially Lyme patients.
So the Government is going to continue to use the guidelines created by the IDSA who were found in 2008 by the Attorney General for the State of Connecticut to have:
– The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
– Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
– The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;
– The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;
– The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
– The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
After they were busted they agreed to review the issues outlined and lo and behold they supported their prior decision.
But yet Canada will just “go along” with this. This is crazy.
I am ashamed to be a Canadian. If this is how we allow our Government treat our sick and vulnerable.
This was written by The International Lyme and Associated Diseases Society(ILADS) in 2015 to the Infectious Disease Society of America(IDSA). http://www.ilads.org/lyme/ILADSComment051915.pdf