February 2009 Features
An Emerging Epidemic with No Effective Means of Treatment in Ontario
by Helke Ferrie
"The physician's challenge is the curing of disease, educating the people in the laws of health, and preventing the spread of plagues and pestilence." — Sir William Osler (1849-1919)
A profound medical mystery is unfolding in Canada: Lyme disease, an infectious disease that is especially serious in its chronic form, has become an epidemic throughout North America. And even though it is successfully treatable with antibiotics, its victims are told — often even by doctors — that Lyme doesn't exist. Since the diagnosis and treatment of infectious diseases is the very basis of modern medicine and constitutes one of the truly great achievements in medical history, and since antibiotics are among the few really useful drugs modern pharmacology has developed, Lyme disease should be anything but mysterious. In fact, though, the way Lyme is handled by medical authorities and government agencies has by now entered the domain of criminality.
Lyme disease, first identified in 1909 in Europe and re-discovered in Lyme, Connecticut in 1975, is transmitted by a tick that generally lives on deer and sometimes also on cats and dogs. The tick harbours a spirochetal bacterium that exists in some 200 variants that evolved to adapt to various environments throughout the world. Hence, it is not surprising that the international medical literature on Lyme Disease exceeds 19,000 articles. In its acute form, Lyme is relatively easily and quickly treated, but in its chronic form it is nothing less than a public health disaster — and we are right in the middle of it.
Last November, a patient group called Lyme Action Group (LAG) appeared on the scene and held a press conference in Queen's Park, sponsored by MPP Monte Kwinter. In their press release, LAG announced that "Denying Lyme is A Crime". They proved their assertion. Then they showed the internationally acclaimed documentary movie Under Our Skin at the Whole Life Expo a week later. This January, LAG formally approached the Ontario government by writing to Premier McGuinty, the Minister of Health, and the Attorney General, providing them and other MPPs with information on the facts on Lyme Disease in Ontario and Canada.
The trigger for this campaign was that the College of Physicians and Surgeons of Ontario has once again initiated a disciplinary action against Dr. Jozef Krop for (successfully) treating chronic Lyme patients. This is the same physician known throughout North America for being prosecuted by the CPSO in the 1990s for diagnosing and treating Multiple Chemical Sensitivity.
The CPSO controls the licenses of doctors in Ontario and has distinguished itself over the past decade by steadfastly maintaining a standard of medicine which the rest of the world no longer shares — specifically in the areas of environmentally-caused illness, asthma, cancer, pain management, and now once again with regard to Lyme Disease. The CPSO's interpretation of "maintaining the standards of practice" can be dangerous to patients in Ontario and often is fatal to the professional life of those doctors who practice according to the latest published medical research.
This unfolding story is so appalling that I am at a loss for words and shall let LAG speak to Vitality readers directly. Here are excerpts from the letters they wrote to the Ontario government. If you want to help Lyme patients, find out if your chronic disease is actually Lyme-related, or if medical progress is something you cherish and want to foster. I suggest you get involved.
EXCERPTS OF THE LETTERS TO PREMIER McGUINTY, THE MINISTER OF HEALTH, AND THE ATTORNEY GENERAL OF ONTARIO
"According to the international medical literature, in North America Lyme Disease is an emerging epidemic, larger than AIDS and cancer combined. Being an infectious disease, the seriousness of this situation cannot be overstated: Medical science has recognized the great variety of symptoms this infection can exhibit in its chronic state (by incapacitating the immune system) and refers to Lyme as "the Great Imitator". Up to 50% of patients with Multiple Sclerosis, and also many cases of Parkinson's, ALS, Chronic Fatigue Syndrome, Fibromyalgia, Arthritis, Alzheimer's, Crohn's and Scleroderma are now understood to stem from originally undiagnosed or untreated Lyme Disease that progressed to chronicity. Because Lyme spirochetes cross the placenta, many cases of autism have been shown to be Lyme-mediated as well."
"The tragedy — and hope — lies in the fact that Lyme disease is preventable, detectable, and successfully treatable with readily available antibiotics, even in it's chronic stage. In the USA, the Center for Disease Control red-flagged Lyme Disease in October 2008 as an "emerging epidemic"; its incidence has increased since 1992 by over 100%."
"Because Lyme Disease is one of the most serious infectious diseases, it is a ticking time-bomb for the medical blood and organ donor supply . . . Many countries, including the USA, require donor screening for Lyme Disease. Yet, Canadian Blood Services has no policy in this regard."
". . . the tests covered by OHIP yield more than 60% false negatives in all tested acute cases; these misdiagnosed patients then become chronic cases — for which the available tests are 90% false negative . . . those tests which are proven internationally to be reliable are not available and can only be obtained, at the patient's expense, from laboratories in the USA and Europe. Astonishingly, doctors in Ontario cannot order those confirmatory tests, even though they are required by the standards of all infectious disease experts ... Anonymous lab technicians are practising medicine without a license by making decisions, without access to the patient's history or physical examination record, on whether or not a confirmatory test should be done. These technicians are not legally accountable. Doctors in Ontario are prevented from treating acute and chronic Lyme Disease in accordance with international scientific standards; they are, in fact, unable to perform their legally and professionally mandated tasks; most are not even aware of this unacceptable situation due to a lack of government policy."
"... the Canadian Medical Association informed its membership more than eight years ago that Lyme Disease is endemic in Canada (see CMAJ May 30, 2000) ... Ontario doctors cannot apply internationally known protocols for the treatment of Chronic Lyme Disease, because the existing OHIP-mediated policy prevents it; this policy is condoned by the CPSO, which has no up-to-date direction from the Ministry of Health to provide to its members."
"... this profoundly disturbing situation involves an important legal action that will very soon affect Ontario and Canada in general. Historically, the International Lyme and Associated Diseases Society (ILADS), with the Chronic Lyme Disease Research Centre at Columbia University and research centers in Europe, provided the bulk of the existing and ongoing research into the successful diagnostic and treatment protocols verified thousands of times in patients. However, the members of the guidelines committee of the Infectious Disease Society of America (IDSA) insisted that Lyme Disease should only be treated with antibiotics in its early, acute phase and only for six weeks (regardless of patient history and the available scientific literature to the contrary); they opined that the observed chronic manifestations are due to a hypothetical, and as yet unproven, 'post-Lyme inflammatory response'. This resulted in an antitrust action initiated by the Attorney General of Connecticut who found the IDSA guidelines lacking in published empirical support, flawed, corrupted and biased by conflicts of interest, and he set aside these guidelines in May of 2008. The new, court-ordered, and independently produced, guidelines will appear in 2009 and be communicated through the medical journals to doctors everywhere. Thus, appropriate government policy has become imperative."
"Considerable case law and legal decisions exist in Canada, which since the early 1990s, have already established that no preference may be given to just one point of view in medical practice. Yet, instead of doctors and patients being protected and supported accordingly, Ontario doctors, if they are informed about Lyme Disease at all, generally only are familiar with those now defunct IDSA guidelines and are expected to abide by them, being OHIP mediated and CPSO condoned."
"Throughout the 1990s, a similar tragedy unfolded with regard to Multiple Chemical Sensitivity (MCS), also called Environmental Illness (EI). In 1999, ironically, the internationally recognized clinical criteria for MCS were published simultaneously in leading medical journals on June 19, the very same day on which one of Canada's leading MCS — treating physicians (with excellent, documented patient outcome) was found guilty by the CPSO of diagnosing and treating MCS, and even though the international criteria were known for the past four years, he was accordingly reprimanded in 2003. The CPSO had chosen not to accept the international research. Now this case has become one of the tragic absurdities of medical history, especially because in 2007 the Human Rights Commission of Canada affirmed the right of Canadians to treatment for MCS, and as Quebec and Ontario passed laws against cosmetic pesticide use — a major cause of MCS.
In December 2008, Germany affirmed MCS as an official diagnosis and incorporated it into their medical, liability, and labour legislation. And yet, 10 years after the clinical criteria were defined by Johns Hopkins Medical School and internationally published, to this day the CPSO website carries the text of that 2003 reprimand: "While he may hold strong beliefs in the appropriateness of his diagnostic methods (on MCS), his diagnostic conclusions, and his methods of treatment, he must make it clear to his patients that they are simply that — beliefs. He must be candid in stating that they are unsupported by scientifically-acceptable evidence."
"Given that in Ontario physicians treating Lyme Disease are now also intimidated, and some are under threat of disciplinary investigation for merely recognizing the existence of chronic Lyme Disease, does this mean that patients suffering from new diseases, or old ones not seen for a long time, are expected to put their symptoms on hold and ignore international research until the CPSO provides official approval? MPP Monte Kwinter once observed at a University of Toronto medical conference that, as far 'as the CPSO is concerned, if it ain't invented in Ontario it ain't invented.' "
"The CPSO is on record in the 2001 Glasnost Report for having taken the same approach to the new and emerging treatment protocols for chronic pain, asthma, and allergy — and now also to chronic Lyme Disease. We feel this is so because no safeguards exist in the RHPA that require regulatory bodies to move with the times and to make positive patient outcome central to the law. The Glasnost Report . . . focused on the lack of checks and balances in the Section 75 provisions of the RHPA which (permits) ... astonishing disregard for patient's right to treatment choice and (ignores) the physician's right to explore all available medical literature for treatment options. This is true once again for chronic Lyme Disease patients — and the doctors able and willing to treat them."
THE CHALLENGE AHEAD
Invariably Lyme patients and doctors will ask, "How is this possible?" Some years ago, exasperated by the problems then facing environmental illness patients, I asked the same question of criminal lawyer Michael Code, then of Sack Goldblatt Mitchell and now a professor at Osgoode Hall. His reply was: "It is not necessary to understand the motive for a crime. It is only necessary to prove that it is a crime."
To stop this crime it is necessary to be correctly informed. The sources given below provide the best available information. Once you are informed, join the efforts of LAG and CanLyme by writing to your MPP and demanding action. Canada cannot afford another blood scandal or another SARS crisis. In Ontario, patients and doctors alike cannot be expected to endure the policies of antiquated regulatory agencies that ultimately ruin human lives.
Also, Ontario's Regulated Health Professions Act must become patient-centered and research-user-friendly for doctors and reflect what Health Minister Caplan was reported to have said in the Toronto Star last November: "I want to support a health-care system that allows people to . . . try new things. Innovation should be the hallmark."
LAG summarized the Lyme Disease crisis best when they wrote in their January 14 letter to the Attorney General: "This untenable situation ensures that the lowest common denominator of medical knowledge will continue to maintain a correspondingly low standard of innovation, and Chronic Lyme Disease patients will have to continue seeking help abroad. We feel, this is an intolerable situation for patients and for society."
- The Canadian Medical Association Journal (CMAJ) is one of the few international medical journals available for free online. See especially the May 30, 2000, issue for a comprehensive Lyme Disease research article and editorial.
- Health Canada's website under "It's Your Health — Lyme Disease"
- Brody, Howard. Hooked — Ethics, the Medical Profession and the Pharmaceutical Industry, Rowman & Littlefield, 2007 (NOTE: the Attorney General of Connecticut appointed the author, a professor of medical ethics, to chair the independent team which will provide the new guidelines for the treatment of Lyme Disease later this year.)
- Ferrie, Helke. Chronic Lyme Disease in Canada — The Persecution of Doctors able to Treat it and the Denial of Treatment Choice to Patients, Kos April 2009
- Weintraub, Pamela. Cure Unknown — Inside the Lyme Epidemic, St. Martin's Press, 2008
- For information on the CPSO, google the Toronto Star series "Medical Secrets" and download the Glasnost Report from www. kospublishing.com submitted to the Ontario government by doctors' and patient's groups in 2001; my articles on the CPSO are available there too.
- For the May 1, 2008, press release by the Attorney General of Connecticut go to www.ct.gov/AG/ cwp
- LAG (Lyme Action Group, Ontario) LymeActionGroup@gmail.com and lymeactiongroup.blogspot.com
- CanLyme (the national Canadian Lyme patients organization; President Jim Wilson)
- ILADS (International Lyme and Associated Diseases Society) for access to worldwide research, the current 16th edition of verified treatment protocols, and the statements by various Canadian MPs and Ministers of Health
- The text of the "National Lyme Disease Meeting March 8-9, 2006", published January 22, 2008, is available through the website of the Public Health Agency of Canada
- For the documentary "Under Our Skin" go to www.underourskin.com
Dr. Schaller neither opposes nor supports this material.
If "medical and political officials" in the Great North want to bother someone, continue bothering experienced tick-borne infection experts.