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The role of patient advocates in Lyme disease policy should be limited – CanLyme does not agree
The article titled, ‘The role of patient advocates in Lyme disease policy should be limited’ seen here promotes stymieing ethical debate.
Here is my response to the article, as HealthyDebate.ca had already closed comments for debate due to some not-so-well-wishing comments (although they did re-open it for comments due to public backlash and they then posted an edited version of below where they removed my comments that may have hurt the feelings of the authors of that poor article who demeaned patients everywhere), …
“Public Health Law… therein lies the problem with this commentary.
I would like to thank these two young lawyers for revealing what is a significant problem in Canada within our health care system. The arrogance shown in this article speaks volumes.
Our Health Law Institutes have bound the hands of patients and physicians within our system for years. They are not ‘public’ health law directed, they are ‘industry’ health law driven. This is another area of public tax dollar funding via our universities that needs to be seriously re-examined by our legislators.
A good example of how health law harms individuals is the wording in provincial legislation that allows patients who cannot find expertise within their province or country to apply for out of province insurance coverage from the government to go see an expert elsewhere. The laws stipulate that the only referral the province will accept on behalf of the patient is from a Canadian ‘expert’ in the field of medicine for which the person is seeking out of province coverage. In the case of Lyme disease, the ‘experts’ that are put forward are the same group of physicians who have been standing in the way of appropriate diagnosis and treatment for decades, and hence why the patients need to leave our country in the first place. These Canadian experts will never refer a patient for out of the country coverage because they would lose control of their agenda driven policy of not allowing Lyme patients to access to appropriate clinical care, while closing the door on scientific debate. These same experts impose themselves into any appeal hearings that an individual files to argue the denial of coverage, so that the alleged experts can micromanage this denial of care.
Another example of bad health law are the various medical practitioner acts which allow the provincial College’s of Physicians and Surgeons to abuse their right to self police. We the electorate gave them that right in good faith via our democratically elected lawmakers. Almost 100% of Canadian physicians who have become publicly known to diagnose and treat Lyme disease outside of the Infectious Disease Society of America guidelines have been harassed out of practice by their respective College, or forced to stop seeing Lyme patients. Because of health law, physicians do not have the same democratic rights given to us in a fair judicial system.
This statement, “Jim Wilson, President of the Canadian Lyme Disease Foundation and a Conference co-chair, called for patients to be treated as equal partners in the development of Lyme disease policy.” is a misrepresentation of my, Jim Wilson’s, consistent position. I have always maintained that “patients, and their experts” be seen as equal partners, not patients alone and it is understood. Besides, patients are a very diverse group including lawyers, doctors, microbiologists, geneticists, plumbers, truck drivers, and hair dressers. How dare a self proclaimed group of alleged and self appointed experts be given such authority over the sick while excluding the sick and their experts.
Here is another tell-tale quote from this article, “We think, however, that the influence of patient groups on scientific policy needs to be more clearly defined and curtailed.”
Of course patients and their experts pose a threat, but only to dogmatic policy that has not faced the requirements of rigorous scientific debate. ‘Curtailing’ the input of the victims and their experts is reminiscent of many failed states who have used victims as research subjects. One only has to be reminded of the second world war. Lyme disease policy in Canada is the human Tuskagee fiasco on steroids and people are dying, losing their homes, and going bankrupt.
Debra Fraleigh pointed out very well in her commentary to the article just exactly what the United State’s Institute of Medicine policy is on patient engagement. Here is what our Canadian Institute of Health Research position is on the issue,
“Patient engagement occurs when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge (i.e., the process referred to as “knowledge translation”). It is of vital importance as “engaging patients in health care research makes [investments in] research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients’ concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results.” https://www.cihr-irsc.gc.ca/e/45851.html
The healthydebate.ca article cites the same old poorly designed research to qualify the author’s position, much of which has been drawn into question by true scientists (not policy and agenda driven) for over a decade. For lawyers to cite such material as evidence, is evidence of unqualified lawyers. Unqualified is a major component and apparent requirement of becoming involved in what they so perversely refer to as public health law. This arrogance highlights why we as taxpayers should not continue to allow our tax dollars to fund any ‘public health law institute’ when they are so clearly driven by everything other than public good. CanLyme has before been on the receiving end of our Health Law Institute’s poor understanding of the complexities of Lyme borreliosis, and their obvious disdain for patients over industry is loud and clear.
Author’s McPhail and Jacobs avoid some very obvious questions, for example, why are borrelia bacteria showing up in such huge percentages in Alzheimer’s disease and multiple sclerosis if borreliosis (Lyme disease) is such an non-issue? What is the science behind the evidence? (I am specifically not citing the references in hopes these two naive and ignorant souls will actually do some research)
Why has Canada failed to do the obvious, transparently fund human tissue study using today’s sophisticated DNA sequencing technology studying all those diseases linked to Lyme borreliosis? Why has all research funded to date by our tax dollars done nothing to address the prevalence of borrelia in the human population, and in fact much of it has been used to support dogma and downplay Lyme disease?
These two authors state with confidence that Lyme disease is a less than 1% of the population issue yet they provide no evidence to support it… although, even 1% represents at a minimum 350,000 people!!
I suggest each reader of my comments go to CanLyme.com, and using our search string feature access many of the thousands of research papers. Lyme disease is caused by a spirochaetal bacteria caused by a group of bacteria known as Borrelia. At CanLyme, type in the words multiple sclerosis (MS), Alzheimer’s Disease, etc. You will find research going back to at least 1911 in which they were well aware of spirochaetal bacteria in the cerebral spinal fluid of MS patients. You can access a 1957 Times magazine article in which the physician names the spirochaete… then, all that evidence disappeared around 1960 and MS magically became strictly an autoimmune disease for which there was no cure, only disease management by expensive drugs while not addressing the infection. Are all MS cases actually Lyme disease, not likely at all. But how many are? How many cases of dementia of all forms are related to infections like Lyme disease? Arthritis, psychiatric disorders, cardiac disorders and on and on?
Also, go to www.pubmed.com, the US government research archive and simply type in Lyme, borrelia, or borreliosis, along with search terms such as liver, kidney, heart, joint, ocular, brain, dementia, and on and on. Canada has no idea how many Canadians have died or have been disabled due to Lyme borreliosis.
These young lawyers have no place in health care until they grow up enough to examine the complexities of which they attempt to discuss. Health Law Institute’s as they currently exist should not receive any tax dollars. Public Health Law needs a complete overhaul.
This was clearly an agenda driven piece written as a poor attempt to stress the need for antibiotic stewardship.
CanLyme applauds antibiotic stewardship, but having said that, Lyme disease is a bacterial infection that like most bacterial infections, responds to antibiotics. Antibiotic stewardship is a policy, policy requires debate in any democracy, and refusing antibiotics for a bacterial infection is a policy that requires extensive evidence based debate in an open and transparent fashion. Refusing to work with patients and their experts in such a transparent fashion has nothing to do with antibiotic stewardship and everything to do with agenda driven bullying.
Long-term antibiotics have been given to hundreds of thousands of patients over the past four decades to treat Lyme disease in north eastern United States and central United States. Where is the evidence, that should be abundant, that this treatment is causing antibiotic resistance? There is none, zero.
I truly hope our lawmakers and medical professionals see this (un)healthydebate.ca article for what it is, propoganda reminiscent of the tobacco lobby.
Jim Wilson,
President,
Canadian Lyme Disease Foundation
www.canlyme.com
This is a terrific response….I only wish it could have made to to their website.
These lawyers, McPhail and Shelley, should be blacklisted from further Framework discussions as they are obviously not patients, nor do they treat Lyme, nor do they have a stake.
Attending the conference seems to be their one toehold in legitimicizing their utterly backward views. Thanks, Jim Wilson, for sticking up against such harmful grovelling as they are doing to try to accrue money and favour among the people who hold out for denying treatment.
Great article, Mr. Wilson! Thanks for having our back, and for not being afraid to use the word ‘victim’ (of medical abuse). There is obviously at lease common mechanism to many of these ‘mystery’ illnesses, and there is evidence that one of those causes is immunosupsression is key.
Linked here – “Wormser’s abstract on how it is OspA that is causing the immunosuppression in 85% of Lyme cases and is the reason this immunosuppression definition was written out of the Dearborn “case definition” and therfore IDSA “guidelines.” LYMErix was still on the market at the time. And publicly and in grant applications, Wormser still insists Lyme is only a bad knee, HLA-linked, and is per the falsified Dearborn case definition:
“The modulation of human lymphocyte proliferative responses was demonstrated with a recombinant outer surface protein A (OspA) vaccine preparation for the prevention of Borrelia burgdorferi infection. After exposure to either the unaltered vaccine preparation or OspA prepared in saline, normal lymphocyte responses to the mitogens concanavalin A, phytohemagglutinin-M or pokeweed mitogen, or the antigen BCG were consistently reduced. Whole cell extracts of B. burgdorferi also modulated immune responses but required a much greater quantity of protein than needed for the OspA preparation. The magnitude of modulation was directly dependent on the quantity of OspA. OspA interferes with the response of lymphocytes to proliferative stimuli including a blocking of cell cycle phase progression. Future studies designed to delete the particular region or component of the OspA molecule responsible for this effect may lead to improved vaccine preparations.”
https://crymedisease.wordpress.com/2016/03/20/gary-wormser-reports-global-immunosuppression-from-ospaborrelia/
Further, the ‘case definition’ of Lyme Disease that Canada’s ‘experts in the Old Guard are following is flawed (also explained in the article above. What are your thoughts?
What will it take to get over this ‘world-is-flat’ mentality? What does CanLyme need and who can help you get there?
(i.e. how can we – general population & patients – help?
Great rebuttal Mr. Wilson,
I am gobsmacked! This article outraged me ! What right do lawyers have in respect to what my doctor and I have decided is appropriate treatment for me! Lyme is a bacteria and treatment for an invading bacteria is antibiotics. One must ask what the agenda is of these young lawyers, what do they have to gain?
Terrific response. My recent experience with my sons cardiac arrest last week showed how lyme is a bad word. I mentioned that my son had some of the same symptoms his dad had. Most of the doctors were receptive but once infectious disease was called in the doctor was very negative. In most cases any information you can give them on symptoms or history is appreciated unless it’s lyme.
Thanks for posting your response Jim. I tried to submit a response to the article earlier, but the article was closed for comments before my response could be posted.
So here it is:
There is a plethora of credible evidence that long term antibiotics -of the right kind, the right amount and tailored to the right individual- can indeed give some Lyme sufferers back their lives. But those with eyes tightly shut won’t see it. My niece, a once vibrant child, contracted Lyme disease at age 4 and it affected her brain. She had dementia symptoms and a host of other specific symptoms; rashes, stomach pain, night sweats and more. Canadian doctors deemed it “Childhood Disintegrative Disorder”, an untreatable condition. So she continued to get worse. It was after diagnosis and treatment in the US that my niece improved, dramatically, with the use of long term antibiotics. The science is there, but some refuse to acknowledge it. It is unscientific to simply ignore the thousands of patients who have have overcome Lyme disease using long term antibiotics.
Dr. Sam Donta who treated over 8000 Lyme patients said this about antibiotic studies: “This study would almost be almost impossible to conduct because with the ebb and flow of the symptoms. How are you going to judge, how are you going to do a placebo group over a 6 month or 12 month period of time?” “The studies that have been done were inadequate in addressing the various antibiotic issues… particular antibiotics didn’t work so the natural question is why didn’t they work? As opposed to “no antibiotics now will work”. What kind of a response is that? That’s not an intellectual, academic response.”
He is just one of many doctors who have effectively used long term antibiotics to give patients back their lives.
Studies by microbiologist Marianne Middelveen and by Nobel Prize nominee Lida Holmes Mattman Ph.D. do suggest sexual transmission. It is a dangerous presumption to assume sexual transmission is impossible.
Development of health policy should be about treating patients, not perpetuating dogma disguised as science.
It looks like Jim’s comments were published now but if he sent the whole response above, they cut it down considerably. Good response Jim.
It’s not an easy fight, so we can expect to disagreement, but opposition without facts is ignorance that shows we need to fight on.
Actually, when they said comments were closed I emailed and complained and then I continued to edit my response our our CanLyme site. I asked them later to update it but they have not. Jim
I asked them to re-open as well and have not heard a word back. Seems they are not interested in a ‘healthy debate’.
Here is the audio of an interview that Jacob Shelley (one of the co-authors of this article) gave to the CBC. Very disappointing. His interview should have been followed by an interview of Jim Wilson!
http://www.cbc.ca/radio/the180/lyme-disease-advocates-can-t-shape-policy-private-school-tax-breaks-and-why-reporters-should-understand-guns-1.3650060/opinion-canadian-policy-on-lyme-disease-shouldn-t-be-directed-by-patients-1.3650170