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Submission to the Parliamentary Standing Committee on Health (2005)
The Public Service Integrity Officer, Dr. Ed Keyserlingk, says public servants are afraid to speak out about abuse. Certainly several are remaining silent about this unethical and damaging eclipse, quoting retribution as their reason.
Dr. Keyserlingk wrote to the former Deputy Minister of Health, Ian Green, about sensitivities a year ago. He wrote on his mandate concerning "actions that may endanger the Health of Canadians."
Values and Ethics advisors in the Public Service Human Resources Management Agency suggested that I take concerns about deceit by their employees to the Canadian Human Rights Commission. I met with the head of Alternative Dispute Resolutions at the CHRC, and prepared The Banality of a Cover-up to brief him, I have no complaint in progress. The actions of public servants are not my responsibility.
I make no claim against anyone for myself, but will provide documentation to others who are being, as a former Deputy Attorney General puts it, "caused preventable harm."
Officials are not setting out to hurt people. That is not their goal or purpose. However, they are causing unnecessary harm, some of them knowingly. Most errant public servants are merely repeating things they've been told, perhaps irresponsibly, even unethically. Most don't understand the consequences of their misconceptions. Others know, or ought to know, that the department's current position is untenable in several respects, and damaging. Some officials have misled MP's and the public.
Health Canada was once working to protect people in high risk groups from being caused serious preventable harm in government facilities and in the health care system. The department was encouraging protections based on the legal obligations implicit in a long history of citizen and clinical experience, medical literature and publicly-insured clinical methods.
Now, public officials eclipse the obligation to protect persons with sensitivities, especially undiagnosed sensitivities, behind controversy about how to define other, supposedly new, environmental health problems. Officials pretend they do not have legally-obliging information on which they once were acting. Officials tell third parties that this information does not exist, when it has been known to medicine since there has been medicine.
People who were to be protected by measures Health Canada was encouraging prior to 1993 are being caused serious preventable harm instead. A former Deputy Attorney General of Canada wrote that protections, once implemented, have been forgotten, and that the obligation to protect is being obscured behind a legitimate but separate debate.
As Health Canada has known since the 1980's, persons with sensitivities, especially undiagnosed sensitivities, will continue to be hurt and killed in health care settings as long as legally obligating information is eclipsed behind controversy about supposedly new environmental health problems.
Advocacy Gateway for Environmental Sensitivities (AGES)
Sensitivities have been around for a long time. Reptiles have them, as do fish and mammals.
In his essay, On Airs, Waters and Places, Hippocrates described the diagnostic approach he learned from women in the countryside in Greece, one covered by public health insurance in Canada and used by most physicians who assess patients for sensitivities. It is the comprehensive environmental history and patient interview. Hippocrates wrote in about 400 BC. In 900 AD, in Baghdad, Abu Bakr Mohammad Ibn Zakariya al-Razi set out his advice to a patient with sensitivities in his book "The Sense of Smelling."
There was significant U.S. investment in protecting patients from the effects of physical sensitivities and toxins on mental illness from the dawn of that country's history and during the American Revolution and Civil War, thanks to physicians in Philadelphia--Benjamin Rush, a signor of the Declaration of Independence and the "Father of American Psychiatry," and later Dr. Thomas Story Kirkbride, chairman of the organization that became the American Psychiatric Association. Three dozen states built mental hospitals with stringent ventilation requirements specified by physicians.
A 1985 Ontario Ministry of Health report by then Judge George Thomson and three teaching hospital physicians identified a long-existing, already publicly-insured method of diagnosing sensitivities, including the patient history. The "Report of the Ad Hoc Advisory Committee on Environmental Hypersensitivity Disorders" (note plural) pointed out that patients were being caused preventable harm by a polarized debate based on "clearly untenable" premises, a debate "fueled by media reports that highlight extreme positions."
Dr. John Davies, Health and Welfare's chronic disease epidemiologist, knew that in addition to new problems developing from pesticides and food additives there is long-existing information about sensitivities described in centuries of literature. For instance, a 1980 University of Ottawa Psychiatric Journal article lists dozens of references back to 1700. A 244 page bibliography in "Healthy Environments for Canadians", published by Health and Welfare in 1987, lists references back to 1908. The cover of a 1991 publication of Health and Welfare's publication, "Issues," quoted writer Marcel Proust complaining about his severe sensitivity to perfume.
The US National Academy of Science has estimated the prevalence at 15 percent. Other estimates range from 3-30 percent, depending on severity, frequency and duration of consequent illness or disability, and as high as 60% if including people who experience only infrequent disability.
Environmental hypersensitivity was on the World Health Organization's list of 10,000 disabling diseases used during the United Nations Decade of the Disabled. Health Canada picked up on the responsibility to protect persons with sensitivities in the mid-1980's. increasingly once Max Yalden wrote to then Health Minister Jake Epp.
Liberal David Kilgour was aware of ongoing preventable harm since 1987. In 1988, consumers presented to the Parliamentary Standing Committee on Health. Opposition Liberal Health Critic Sheila Copps called for consciousness-raising. Alan Redway, Charles Caccia and Margaret Mitchell spoke out in the House of Commons. Later, Copps warned of potential abuses resulting from misdiagnoses due to attitudes, as did other Liberals.
Health Canada and Cabinet have long known that preventable harm is being caused.
Nicholas Ashford (MIT) and Claudia Miller (UofTexas) warned that harm can be caused if patients with ambiguous symptoms are subjected to inappropriate measures before being checked for sensitivity. They won a Macedo Award from the American Association for World Health for their 1989 report to the New Jersey State Department of Health. It mentions sources since 1880.
A 1990 Health and Welfare workshop acknowledged the "compendium of disorders" that cause sensitivities and addressed attitudes, recommending that people diagnosed "should not be dismissed as neurotic, but receive respect and support." Materials were sent to thousands of Canadian physicians, to related provincial ministries and to Canadians subscribing to Health Canada's "Issues" to tell them that harm may be caused to undiagnosed patients, especially to persons in high risk groups approximated by considering the symptoms of people diagnosed so far.
Human Rights Commissioner Max Yalden testified at the Parliamentary Standing Committee on Human Rights. A former Ontario Chief Coroner wrote three provincial deputy ministers about a suicide that resulted, in part, from frustrations caused by attitudes towards persons with sensitivities.
Liberal Human Rights Critic David Walker asked Health and Welfare, "What measures will be taken to ensure that the medical community will attempt to identify the psychiatric patients whose cases remain undiagnosed and who may have environmental sensitivities?"
Former Health Minister Perrin Beatty supported protections in September and December 1990. The subsequent health minister, Benoit Bouchard, also worked towards the protection of psychiatric patients whose problems are caused or exacerbated by sensitivities. Then opposition MP John Manley was in good company when Manley supported such protections in 1991.
A 1992 Health Canada workshop was to kick off the rescue of people in just one high risk group--people whose central nervous system problems are caused or exacerbated by sensitivities. Other risk groups for sensitivities include pregnant women and babies, children with learning and behavioral disabilities, women in eating disorder clinics, people who work in office buildings and people with other intermittent systemic complaints similar to those of people already diagnosed.
Knowledge swept under the carpet
After the 1993 election, it was as if none of this had happened. Knowledge of both the means and the need for protections was forgotten by the department, at first by bureaucratic bungling. But after mandated authorities reminded the department of previous and existing knowledge, departmental officials chose or were instructed to cover-up rather than correct their mistakes.
Instead of recovering the fumbled protections, officials at all levels chose to pretend they had never been acting on them, never known they had to or how. They tried to cement this perception by making false claims to the effect that they were not (therefore had not been) in possession of the legally implicating and mandating knowledge that had previously motivated Liberals and others to call for action on legally required concerns, and which had resulted in the department itself embarking on a program encouraging protections. Deceit about this knowledge may be criminal.
Stopping oneself from knowingly causing preventable harm is not a matter of discretionary policy. Causing harm by making deceitful comments to the effect that the knowledge of how not to do so is not in your possession, or in the possession of persons you manage, influence and regulate, when it is, may constitute criminal endangerment.
By 1995, HPB's Dr. Joe Losos was back to the department's position in 1986, before all the work had been done, telling the Parliamentary Standing Committee on Health that what they were now calling "Multiple Chemical Sensitivities" (caps theirs) were new to the department, to a skeptical medical community, and that prevalence was not known to be significant! We had to ask mainstream medical organizations to again validate the concern, to counter Health Canada's repeated assertions of medical skepticism. The department continued to knowingly eclipse long-existing knowledge behind controversy about supposedly new and "emerging" problems, even though the supposedly new had "emerged" as mostly not being new ten years previously!
The people who were to have been protected by measures Health Canada encouraged prior to 1993 have not been protected.
Once elected to government, Liberals who had been supportive while in opposition disappeared behind the curtain of cabinet solidarity. As Warren Allmand and John Nunziata were exiled for antagonism with the PMO, Copps, Caccia, even Ontario Liberal MP Elinor Caplan, turned their backs. Caplan had been briefed before she was an MP, when she chaired the Ontario Standing Committee on Social Development, but still did not respond.
Liberal cabinet minister John Manley, who had supported protections, was now much less responsive. (Video available on request.)
In 1995, the President of the largest self-help group told Health Minister Diane Marleau that more research is not needed before people with sensitivities can be protected. George Thomson, then Deputy Attorney General, approached Marleau's Deputy Minister of Health during this period, but the government's own lawyer's warnings about our responsibility to protect went unheeded.
More recently, former Deputy Attorney General Thomson has written that protections were once implemented then forgotten, that people are being caused preventable harm because protection issues are being obscured behind a "legitimate but separate debate." Liberal Mac Harb wrote to Health Minister Anne Mclellan, concerned about ongoing preventable harm. Mclellan ignored the responsibility to protect and she ignored concerns about departmental management hiding their knowledge of how to do so, pretending there had never been a ball to fumble.
Suicides of persons whose central nervous system is affected by undiagnosed sensitivities occur somewhere between once every ten days and twice a day, somewhere between one and twenty percent of Canada's 4,000 suicides per year. Persons with central nervous system reactions constitute just one of several groups at risk of being ploughed under by misconceptions Health Canada was once addressing. Based on prevalence, there may be several preventable deaths per day in Canadian medical settings that involve patients with undiagnosed sensitivities.
While some media reports suggest that only the recently (1989) organized doctors of environmental medicine support the concern, the American Academy of Pediatrics has long and often called for better protection for sensitive babies and children. Their PEDIATRICS journal recently pointed out, again, that babies are being caused permanent disability and killed because we are not as careful as we easily could be in approaching them to administer medication. An adverse reaction registry is useful but to reduce preventable harm to babies we need to adopt protocols assessing for sensitivity before full doses are administered.
When it became obvious, by 1995, that Health Canada was not dealing with protection issues in a forthright manner, Senator Sharon Carstairs and all of cabinet, including Finance Minister Paul Martin, were approached. Liberals Mauril Belanger and Leonard Kuchar, Chief of Staff to the Leader of the Government in the Senate, helped arrange a meeting with Allan Rock's office. When the cover-up continued, we met with Herb Gray's assistant in the Deputy Prime Minister's Office, and with Ian Green's assistant on health policy, when Green was with the Privy Council Office.
Still, in 1999, Health Canada's "file manager" on sensitivities, Dr, Bernard Choi, was eclipsing protection responsibilities, on which the department had already acted, behind false controversies. In a letter, Dr. Choi framed the issues in a way that violates the truth and sabotages the protection of a child in the process. In a phone call (audio available on request.) Dr. Choi totally eclipses Health and Welfare's previous work, making flatly incorrect statements based on untenable paradigms Health and Welfare had previously decided were contributing to preventable harm. Compare Dr. Choi's letter and comments with the written statements of Doug Geekie (1986) and Dr. Carole Guzman (1996), of the Canadian Medical Association, or Dr. David Hawkins, of the Association of Canadian Medical Colleges, or with Health Canada's previous statements.
Ian Green's boss, Mel Cappe, became Clerk of the Privy Council after commanding the HRDC boondoggle. Cappe is now Canadian High Commissioner to the United Kingdom, which is not far from Denmark. While Clerk of the Privy Council Office, Cappe sustained cabinet's cover-up of the long-known means and responsibility to protect children and others with sensitivities from preventable harm caused by acts of commission by persons for whom he was responsible.
Still, the Liberals maintain their cover-up, eclipsing a long history and long-known clinical methods of dealing with environmental sensitivities, hiding their legal responsibility to protect children and others from preventable harm behind controversy about supposedly new health problems.
Issues related to public accountability and the safety of people with environmental sensitivities need to be faced. Consider the observation of scientist Michel Joffres, PhD, M.D., of Dalhousie University, on the reason for acknowledging what has happened:
"An important point is the fear of liability (at the legal and moral level) which perpetrates attitudes and actions. The protective psychological mechanism that comes into action when one knows deeply other people have been harmed, because of their negligence, or because they have been hiding behind the presumed lack of science, because they have minimized, belittled the issues, this mechanism which hides behind denial, camouflage, or aggression needs to be uncovered. Consequences need to be brought to the conscious level, for healing to take place, and prevention to take its role. Now people at governmental, industrial and academic level hide behind the oppressive properties of fear, fear of acknowledging what has happened."
Children and members of other vulnerable groups, undiagnosed people in high-risk groups known by considering the symptoms of people already diagnosed, are paying the price of protecting the reputations of the officials who continue this cover-up. They are paying a steep price to protect adults who are pretending they are not aware of a responsibility the department once was acting on.
I serve to gain nothing from any of this, except a clear conscience and an end to a horror. If others do not want to act, people with undiagnosed sensitivities will continue to be hurt and killed unnecessarily. If I have made a mistake, it was to feel responsible.
Ottawa - 31 January 2005