Ottawa: Canadian politicians, scientists, physicians, and advocates unite in request of Minister Philpott to insist upon an ethical process
[CanLyme Note: No disease in history has ever been so massaged and manipulated behind closed doors as Lyme disease (borreliosis) Is profit the motive? Keeping people sick and on pills for every symptom seems to be the approved Canadian policy while they refuse to transparently look at better tests that are available, and they refuse to allow potentially curative treatments.]
(OTTAWA) April 11, 2017 – Lyme Disease researchers, doctors and patients are calling on
Minister of Health Jane Philpott to update the Draft Federal Framework on Lyme Disease with
the latest medical and patient best practices before it reports back to parliament.
“There was a clear sense of hope that emanated from the federally funded Lyme disease
conference held in Ottawa last May,” said Jim Wilson, President of the Canadian Lyme Disease
Foundation. “The sense was that finally the patients’ experts and the patients themselves would
be engaged in drafting the federal framework outlined in Bill 442, the Federal Framework on
Lyme Disease Act. But hope is fading. This framework is being written behind closed doors,
which is contrary to all MPs and Senators who passed this Bill into law with the understanding
that the Framework was to be consultative.”
Dr. Melanie Wills, Director of the Canadian Lyme Science Alliance (CLSA), Research Associate, University of Guelph, said: “As a researcher in the field of Lyme
disease biology, I am dismayed by the lack of scientific rigor, collaboration, and leadership
demonstrated in this document. The Framework does not provide a balanced or holistic
portrayal of the biomedical literature, nor does it capture the experiences and needs of
Canadians who are suffering from Lyme disease. The CLSA strongly advocates a thorough,
inclusive, critical, and transparent evaluation of all available meritorious scientific evidence, as
well as meaningful integration of input from diverse stakeholders. We can, and must, do better.”
Dr. Liz Zubek, a family physician who specializes in the treatment of Lyme Disease, said: “This
draft Framework tells me to follow outdated guidelines that haven’t been revised in over 10
years. There has been an explosion of research in the past decade and newer guidelines exist
that include patient input. This draft Framework also suggests that, as a doctor, I should be
satisfied with our inadequate Canadian tests for now, and that maybe in the future we will find
improvements. This is, frankly, ridiculous.
“I urge the Minister of Health to reject the Draft Framework and insist on a real Canadian action
plan for Lyme disease. This needs to be created in partnership with people affected by Lyme
and those researchers and doctors who are actively attempting to treat them,” Dr. Zubek
concluded.
Rossana Magnotta, President & Founder of the G. Magnotta Foundation for Vector-Borne
Diseases, and a Director with the Canadian Lyme Disease Foundation, said: “We call on the
Minister of Health to intervene and insist on patient experts being involved in the writing of the
framework, even if that means delaying the report to parliament. This is the correct and ethical
thing to do.”
Elizabeth May, Leader of the Green Party of Canada, said: “I remain very grateful for all-party
support for my Bill C-442 in the 41st parliament. This issue remains non-partisan. I have
confidence in Dr. Jane Philpott to hear the concerns of those in the Lyme-literate medical and
patient community, and to re-write the proposed framework.”
Representatives from all parties were invited to the non-partisan media conference, and
attendees included Tracey Ramsey (NDP MP, Essex), International Trade Critic, and Kelvin
Ogilvie, Conservative Senator, Chair of the Senate Committee on Social Affairs, Science and
Technology.
For additional information or to arrange an interview, contact:
Dan Palmer
Press Secretary | Attaché de presse
dan [dot] palmer [at] greenparty [dot] ca
m: (613) 614-4916
Thank you on behalf of my poor husband who has this disease. I am truly grateful for all of you that are chasing this down. If any of them were personally bitten (the decision makers) by this bug or had family members they would have a better understanding of the devastation not only to the person but their families as well.
Please keep up the good work.
Behind closed doors drafting of this document without meaningful participation of patient-stakeholders and the physicians and other practitioners who endeavor as best they can to care for them is most unfortunate. It reflects an attempt to maintain the status quo at a time the status quo is completely unacceptable. This is ‘shoring up’ a house of cards that is collapsing.
Kenneth B. Liegner, M.D.
Pawling, New York
Glad to see the strong support by the MP’s, Doctors, Senators, and especially from Rossana Magnotta who established Canada’s first research facility for Lyme Disease. This research will hopefully lead to better testing and treatment for Canadians. The Canadian Federal Government needs to step up to the plate and listen to relevant patient experts, and skilled medical professionals, in the implementation of the Draft Federal Framework on Lyme Disease. Keeping a blind eye is a denial of a right to health care for all Canadians, especially young children that get infected. The current draft framework is out of date, and needs to change. We are running out of time, as Lyme Disease is spreading faster that ever, and our children are at risk.
I most fervently hope that Minister Philpott does not intend to support a draft Framework written by ‘experts’ who want to maintain the status quo… a lack of medical care, outdated guidelines and ineffective testing. People expect a federal Health Minister to be on the side of doctors, scientists, advocates and patients who want to use modern scientific research to combat a serious and often ignored disease. The draft Framework shows a desire on the part of a few medical professionals to continue ignoring the suffering of Lyme disease patients in order to maintain their status as experts in this field. It’s the currently and soon-to-be infected citizens who warrant protection, not the egos of those complicit in causing this medical crisis.
We are long-term friends with a family where not only is the mother affected by Lyme but also their only child. A former nurse, she has been unable to work for over two decades and her son was unable to finish high school until his mid twenties. We’ve witnessed our friend struggle with severe depression, loss of a career and income, increased isolation and fear and worry for her son’s future as he attempts to cope with his setbacks and lost opportunities. This family and every family affected by Lyme deserves the best, up to date treatments available through a medical framework that is flexible, open and transparent in its review process. Listen to those patients and those who treat them to obtain real live data to better inform current and future treatment protocols for Lyme. Lyme disease is spreading so the Canadian health system has to do everything possible to get ahead of the curve to give hope to those who are currently suffering, like our dear friends, but also to those who will contract this disease in the future.
Lyme disease with its life-altering/life-threatening consequences belongs in the same health threat category as AIDS, Zika and Ebola but health agencies around the globe are blindly following what has been deceptively established here in the United States.
We are dealing with an antibiotic resistant/tolerant superbug as identified in the blood of Lyme patient Viki Logan whose blood was culture positive for Borrelia at the Centers for Disease Control in 1991 despite prior treatment with intravenous antibiotics.
Vicki Logan’s CDC Fort Collins Positive CSF Culture Report:
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/19604951
Seven page autopsy results of Lyme patient Vicki Logan:
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/19628804
We are experiencing a runaway plague with unacceptable testing, inadequate treatment, lack of medical training with absolutely no disease control and we are three decades into this travesty. The attention over this timeframe should have been focused on finding new antimicrobials for a disease capable of ruining lives. Instead, the focus has been to discredit the sick and disabled and those who are trying to help these patients while purposely eliminating these individuals from roundtable discussions on how to address this 21st Century plague.
Post treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure. Those who are responsible for this crime against humanity have colluded to deny Lyme as a life-altering/life-threatening infection.
Carl Tuttle
Hudson, NH
We agree with you 100%! It is so true. There are many of us like that out there
I have tested Elisa positive western block negative my gp has referred me to lilad trained GP stating that despite all of my symptoms for the past 30 yrs I have been falsely influenced by the internet and it is unlikely that Lyme disease is the cause of the long list of maladies that I am suffering with….i have been on immuno suppressants the past 15 years and continue to spiral down with unexplained symptoms…unable to work can barely walk am so despondent….am treated like I am neurotic..
Can’t afford to get testing in the US.. .suffer with soaking night sweats and night mares…wish I could find a country to seek asylum In…which would help Diagnose and treat this monster…with gp doubting my sanity …long waiting lists while my paperwork is being triaged…have you ever heard of anything more ridiculous as training paperwork? Give me a brake?! Really? If they waited this long with my body in triaged dr. Jacobson I would have blead to death..this is truly nuts…why can I not get help seriously???
My wife Cortnie has has misdiagnoses for nearly Eight Years, with a Late-stage Lyme Disease diagnosis her Neurological issues continue to worsen, and will never recover with treatment. The neurologist in an arrogant tone said there was nothing wrong, and albeit arrogance it is uneducated Doctors following old school thought printed from old texts; now there is better options in Arizona, and Specialists won’t recommend anyone from British Columbia, so where is the patient left?
My wife Cortnie has done testing through our LifeLabs Clinic in the Victoria Medical Building here in Prince George BC. However, she had to procure the kit from IGeneX Inc. 795 San Antonio Road Palo Alto CA 94303
T: (800) 832 -3200 . A referring Doctor is established, and the results must be interpreted by a specialist, that Lyme Disease specialist was in Toronto Ontario, so the next course was to find a Lyme Disease specialist in our general vicinity; with all likelihood having to go to Arizona for proper treatment at Envita.
Hi there. When you see that Elisa and western blot have about 50% false negatives you have to wonder why are they still relying on them. I a very fortunate. my DR know about the reliability of the tests and is willing to work with me without a positive result but based on exposure and symptoms
Why are all the victims of Lyme Disease not considering suing the Canadian Government for violating their human rights. The violations in these cases are very clear , Canadians are lead to believe our health care system is working for us. This is a falsehood. Canadians are entitled to proper and effective testing for all illnesses and proper and effective treatment for these illnesses.
Patients with Lyme Disease are being ignored , made to feel their condition is all in their head, and refused treatment, because after all Lyme disease is not in Alberta ,or Anywhere The Powers that Be- Designate It- Not To Be.
In truth Lyme Disease is all across Canada and the United States in frightening numbers and on the rise, yet our government chooses to ignore the valid research now being presented to them, this disease is on its way to becoming an epidemic. Canadian patients should not have to go to the United States or any other country to be diagnosed and treated for Lyme Disease , at their own expense.
I myself intend to sue the Government of Canada over this issue, for any and all expenses I incur trying to get the medical help I need. The Government of Canada is violating my human rights, and every other Canadian’s human rights. They should be held accountable for all Canadian citizens expenses incurred by not having proper Tests and Heath Care Services to deal with their health issues here in our own country. In my opinion this is a much more valid case for Violation of Human Rights , than that of a terrorist who just was awarded Ten Million plus for said violations of his rights?
And lets not forget our wonderful former Prime Minister , who sued his country for what?? Shame on our government for validating and cow towing to these atrocious people . Yet stand by and ignore the needs , and requirements for proper diagnosis and treatment of Lyme disease to the detriment of every Canadian citizen fighting this disease now . People can contact me on facebook, I would like to hear the thoughts of others struggling through this disease. WHAT DO YOU THINK YOUR NEXT STEP SHOULD BE ?