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Canada’s most senior Senator, Herb Sparrow, had personally observed a CPP appeal hearing of one of his MCS-afflicted constituents from Battleford, Saskatchewan. This person had become disabled from a massive exposure to pesticides. Events at that appeal convinced him that the federal pension and disability program is indeed influenced by some serious bias against people diagnosed with chemical injuries. He reported the procedural abuse he had witnessed to the Minister of Human Resources, the Hon. Jane Stewart, requesting her help which she provided with grace and speed and charm. On April 10th the Minister gathered in her office Senator Sparrow, representatives of RAINET (the advocacy organization working for this CPP applicant), and me at RAINET’s request. The files of this and several other MCS cases, similarly tainted with procedural bias, often for many years and with heart-breaking effects, were formally given to the Minister. A lively discussion about health and environment unfolded. Believing that nobody can ever have too much education, I presented the Minister with a copy of the book my publishing company had recently brought out: Dr. Jozef Krop’s Healing The Planet One Patient At A Time. To my delight she not only leafed through it with spontaneous interest and asked many pertinent questions, but began to tell us about people in her own Brantford constituency who had become ill from environmental toxins. She requested detailed reports from RAINET and from me for the senior administrative staff of her department to assist with the process of drawing up new guidelines for MCS-afflicted applicants. RAINET (Research Advocacy and Information Network) was founded by Hilary Balmer, a nurse who became disabled due to chemical injury. Her organization wants to have “chemically/environmentally induced injury and/or illness an officially recognized disability”. In partnership with workers’ advocacy groups and medical organizations, Hilary has helped many people. With the unexpected help from the Senator, Hilary’s efforts have matured into truly meaningful discussions with the federal government. In her report to the Minister, Hilary observed (supported by ample documentation) that “pervasive prejudice against persons with disabilities such as … MCS … permeates the agencies charged with the responsibility of adjudicating applications for disability benefits. The incapacitated person is perceived as merely a psychological misfit and thus undeserving of disability benefits.” The subsequent meeting with senior Human Resources administrative staff was friendly and collegial. New guidelines are being created and some messed-up cases have already been fixed. Existing legislation is excellent because it focuses on how disabled a person is, regardless of the diagnosis which may change or be difficult to make. Between 1998 and 2003 three Supreme Court and one federal appeals’ court decisions have spelled out how the government must interpret the law governing disability benefits and what characteristics a reliable expert opinion has. In 1998 the court stated that the law must be understood “in broad and generous terms so that any doubt arising from the language of such legislation ought to be resolved in favour of the claimant” (Rizzo). In 2000 it ruled that applicants must be “accommodated” according to their level of disability (Granowsky), and in 2001 clear “tests for disability” were defined (Villani) to protect the “benevolent purposes of the legislation”. In May (C.U.P.E. 2003) the Supreme Court defined experts as requiring the qualities of “neutrality, independence and proven expertise”. Nevertheless, the reality is that when a person carries an MCS diagnosis, the competing interests of insurance companies, employers, and government programs often erect seemingly insurmountable barriers for the applicant. Furthermore, not only is MCS a new disease, but it is caused by substances upon which industrialized economies depend. This situation began some 200 years ago when coal-fired industries caused asthma, allergies and cancer to appear in unprecedented numbers. Since then tens of thousands of even more toxic substances have become part of everybody’s environment - with a predictable increase in corporate and public attempts to avoid responsibility. Lawyer Matthew Wilton of Toronto has defended many doctors who diagnose environmental illness, such as the internationally renowned environmental medicine expert Dr. Jozef Krop and the asthma expert Dr. Sukhdev Kooner who works in Canada’s asthma capital, Windsor. These physicians often run into trouble with regulatory agencies and industry because they stand up for their patients against insurance companies and government agencies which deny the reality of MCS and even traditional environmentally mediated illnesses, such as mold toxicity. A large part of Matthew’s practice is devoted to clients with insurance claims. The typical case is that of a disabled person whose private insurance is running out and whose employer wants to fire him or her. Insurance companies turn to their own doctors who are trained by their organization, the Canadian Association of Independent Assessors, in the fine art of discrediting a patient’s application. A few years ago, a formal complaint was lodged by Ontario doctors with their licensing authority, the College of Physicians and Surgeons, objecting to this obvious lack of medical ethics when a doctor actively works against a trusting patient’s interests. The College replied that this wasn’t unethical because the patient was merely referred and not actually the doctor’s own patient - a twisted logic arising from the fact that representatives of the insurance industry sit on the College’s council and sometimes are even members of the disciplinary committees prosecuting doctors who stand up to the industry. These “independent assessors” assert that MCS is just another form of panic attacks. “Experts” are produced who insist that nothing else is the matter with this person. Their “proof” is in each case boringly the same: outdated medical literature is cited, current medical research results are ignored, meaningless tests are demanded, and the physician who treated this disabled patient on a regular basis, and is thus qualified to defend her case, is dismissed as being ignorant. Often this medical garbage becomes part of applicant’s file with Canada Pension and Disability and so both the private and public insurance processes become fatally flawed. Matthew insists, however, that this systemic injustice can be overcome successfully. “Don’t ever think it’s useless to fight!” Generally, judges fully understand the difference between an “expert” from the insurance industry and the informed opinion of the regular, treating physician. “Judges understand that the GP has nothing to gain by stating the truth about a person’s disability, while the insurance doctor certainly does stand to gain by denying that disability.” As long as your own doctor stands by you, the applicable legislation, especially the Ontario Human Rights Code and current employment laws, will generally support your claim. Of course, most people in this situation are close to destitute as well as browbeaten, so Matthew often handles them on a contingency basis, an approach that is almost always successful for all concerned. What is it about MCS that brings out the best and the worst in people? Simply put, MCS challenges the way we run our world. It challenges the chemical industry the way cancer did the tobacco industry. Both brought their products to market before their safety was established and both have to face the fact that these products are not and never will be safe. In the early 1950’s allergist Dr. Theron Randolph had a patient who had severe allergic symptoms unrelated to the usual suspect triggers. Careful observation showed that her symptoms were present only when certain wind patterns brought high concentrations of petrochemical particles into the Chicago area. This was the first recorded case of environmental hypersensitivity, as Dr. Randolph called her untypical allergy. In 1965 he founded the American Academy for Environmental Medicine which, to this day, teaches doctors from all over the world how to diagnose and treat illness caused by many environmental toxins, fossil fuel products, pesticides, organic industrial solvents and carbon monoxide poisoning being chief among them. Today, the illness is called Multiple Chemical Sensitivity (MCS); it consist of a whole family of diseases of which the best-known ones are Fibromyalgia, Chronic Fatigue Syndrome, Gulf War Syndrome and Cacosmia (the MCS variant in which people lose all tolerance for scents, toxic or otherwise). The international consensus statement on MCS syndromes was published in June 1999 (Archives of Environmental Health vol. 54/3). The definition states that symptoms are reproducible with repeated exposure, that the condition can be chronic, low levels of exposure cause symptoms which improve when the offending chemical is removed, many substances can cause reactions, and many organ systems are involved in the MCS patient. The most common complaints include acute intolerance to light, noise, and chemical smells of all kinds, extreme fatigue, muscle pain, swollen joints, muscle weakness, shortness of breath evolving frequently into asthma, anemia, chronic urinary tract infections, nausea, diarrhea, migraines lasting days, tingling in hands and feet, irregular heart beat, watery and itchy eyes, generalized itching and more. Harvard University’s environmental medicine publication, Environmental Health Perspectives, published a survey in September of this year showing that about one third of MCS patients became ill from pesticides, another third from solvent exposure. Similar results were obtained in a study done by the University of Toronto and submitted to the Hon. Jane Stewart by Dr. Lynn Marshall, the director of the Environmental Health Clinic at Sunnybrook & Women’s College Hospital. Rachel Carson’s research in the 1960’s into the health effects of the pesticide DDT, a declassified biological warfare chemical from World War II, showed that small, frequent exposures to a toxic chemical can cause permanently disabling illness or cancer. This finding turned upside down the traditional notion that the amount of a poison determined how sick one became. In 1960 approximately 10 billion pounds of toxic chemicals were released into soil, air and water. Currently, about 35 billion pounds of pesticides, organic solvents and other products containing heavy metals are released annually. Most have never been tested for their health effects. However, as more and more people are affected, scientific investigation has increased rapidly: in the 1950’s the world medical literature had 5 articles on the subject; in 1997 only 120 research studies existed; today more than 10,000 are listed. In 2001 the Ottawa based Environmental Illness Society of Canada commissioned the first socio-economic study of MCS. This showed that about 4 million Canadians are chemically sensitive, about 500,000 severely so, some 5,000 are relatively disabled as a result, and roughly 50 to 60 people are forced to seek assistance, such as federal pension benefits. Among the most severe cases about 60% attempt suicide. This illness costs $ 10 billion in lost productivity, about $ 1 billion in lost taxes and another $ 1 billion in avoidable health costs. The subject of medical research worldwide, MCS now has many clearly defined biomarkers and sophisticated as well as very simple and inexpensive tests are available to establish a clear diagnosis for each of the different MCS syndromes. In 2000 the Canadian government published a report urging reform of the pesticide legislation (which was been done), and recommending that MCS be officially recognized and its treatment covered by Medicare (not yet done). But now that the Canadian Medical Association Journal published a whole series of research papers (April through June 2002) on the health effects of the environment and the Ontario College of Family Physicians is hosting its first conference on the subject this October, maybe MCS will become fully recognized at last. The Ontario Human Rights Commission already instructed the Ministry of Health on April 9th, that people sensitive to pesticides must be protected from any spraying for west Nile virus. While justice for the severely disabled MCS patient is now within their reach and the recognition of this condition fully recognized by medical science, the battle is not over. Consider the fact that the same month when the international consensus on MCS was published (June 1999) the College of Physicians and Surgeons of Ontario found environmental medicine expert Dr. Jozef Krop “guilty” of diagnosing MCS and reprimanded him for it in September of this year - when simultaneously the federal government began to remove the systemic bias against MCS disability pension applicants. So who else is still opposing the fact of MCS? One powerful group is the Environmental Sensitivities Research Institute established in 1995; it accepts only corporate members (I tried to join and was refused!) and its board of directors consists of the major pesticide producers of North America such as DowElanco, Monsanto, Proctor & Gamble, and the Cosmetics, Toiletry and Fragrance Association. The chairman is the CEO of the pesticide industry association called RISE. Indeed, the chemical industry’s worries about its future are justified and encouraging. However, we may take comfort in the fact that humanity has been through such ethical crises before and society always emerged much improved by the experience. The last and most brutal example being the end of slavery which was an equally unavoidable economic earthquake for society. Facing the truth of MCS has started the process making the world cleaner and healthier, and it is nice to have one’s government lend a hand. Sources and Resources: American Academy of Environmental Medicine, tel 316-684-5500 helps you find a doctor trained to diagnose MCS in Canada Abstract: Pages 1 through 4 deal with the context out of which this effort evolved and present the author’s background and involvement with MCS. Pages 4 through 12 provide a history of MCS and its salient characteristics as presented in the mainstream medical literature. Pages 12 through 16 describe the recognition of MCS nationally and internationally. Pages 16 through 19 deal with those aspects of MCS which have to do with the denial of its existence due to inappropriate bias and how such bias may adversely influence the legitimate processing of applications. Pages 19 through 24 present the most recent research in MCS up to publications from September 2003 and discuss how these findings might be important to the guidelines the Department may wish to develop when dealing with applications that involve an MCS diagnosis. Pages 25 through 27 give suggestions to the Department for such guideline development from the perspective of the author; the resources suggested as ideal for consultation purposes are doctors (and patient support and advocacy groups) with specialized training in the diagnosis and treatment of MCS. The appendix consist of items of research, information on current diagnostic protocols and therapies, and resource material which may prove helpful to the department. The author is a medical science writer and publisher and the views presented here, and the selection of information provided, are based on the perspective of a journalist working to obtain as comprehensive an overview of MCS as possible. The information comes from the most prestigious research institutions in North America. The report is extensively footnoted with sources from the medical literature for verification purposes. October 2003 |
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