MULTIPLE CHEMICAL SENSITIVITY: Government and Medical Science Finally Recognize

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MULTIPLE CHEMICAL SENSITIVITY:

Government and Medical Science Finally Recognize Crippling Effects of MCS

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Vitality Magazine

October 3, 2003

BY HELKE FERRIE

 

It is said that when you come to the end of your rope, tie a knot and hang

on. For those whose lives have been devastated by Multiple Chemical

Sensitivity (MCS) and who have been hanging on to that knot for quite some time

now,

this determination is finally paying off. It appears that with regard to MCS,

Canada is beginning to live up to its reputation of striving for a just

society. I am reporting on developments that I have been part of since April.

 

In Spring of 2002 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 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.

 

On April 10 the Minister hosted a meeting in her office with Senator

Sparrow, representatives of the Research Advocacy and Information Network

(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 ensued. Believing that nobody can ever have too much education, I

presented the Minister with a copy of the book my publishing company had

recently

released: Dr. Jozef Krop*s Healing The Planet One Patient At A Time. She not

only leafed through it with 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 was founded by Hilary Balmer, a nurse who became disabled due to

chemical injury. Her organization wants to identify

**chemically/environmentally

induced injury and/or illness as an officially recognized disability**. In

partnership with workers' advocacy groups and medical organizations, Balmer has

helped many people. With the unexpected help from the Senator, Balmer*s

efforts have matured into truly meaningful discussion with the federal

government. In her report to the Minister, Balmer 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

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 resolved. Existing legislation is excellent because it

focuses on how disabled a person is, regardless of the diagnosis that can

change or be difficult to make. Between 1998 and 2003 three Supreme Court

decisions and one federal appeals court 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

having

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 denying the reality of

MCS and even traditional environmentally mediated illnesses, such as mold

toxicity.

 

A large part of Wilton'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. Insurance doctors routinely assert that MCS is just another

form of panic attacks. **Experts** are produced who insist that nothing at all

is the matter with this person. The **proof** is in each case 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 an

applicant's file with Canada Pension and Disability and so both the private and

public insurance processes become fatally flawed.

 

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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

- RAINET P.O. Box 943, Uxbridge, ON, L9P 1N3, tel. 905-852-2676

- Matthew Wilton Law Office, specializes in disability issues; 127 John

Street, Toronto, M5V 2E2, tel. 416-860-9889

- Environmental Hypersensitivity Association of Ontario, Box 1250, Station

K, Toronto, M4P 3E4

- Environmental Health Clinic, Women's College Hospital, 76 Grenville

Street, Toronto, M5S 1B2

- Ontario Medical Association's Section on Complementary Medicine, call

613-432-3240

- _http://www.mcsrr.org_ (http://www.mcsrr.org) is the most comprehensive

and helpful web site with information on everything you want to know about MCS

Alternative Medicine Guide, Chronic Fatigue, Fibromyalgia & Environmental

Illness, Future Medicine Publications, 1998

- P.R. Gibson, Multiple Chemical Sensitivity: A Survival Guide, New

Harbinger, 2000

- K. Glenn, I'm Sorry But Your Perfume Makes Me Sick: And So Does Almost

Everything Else That Smells, Bluebird Books, 1997

- T. Kerns, Environmentally Induced Illness: Ethics, Risk Assessment and

Human Rights, McFarland, 2001

- J. Krop, MD, Healing The Planet One Patient at A Time: A Primer in

Environmental Medicine, Kos Publishing, 2002 (call 519-927-1049 to order)

- L. Lawson, Staying Well In A Toxic World, Lynnword Press, 1993 T.G.

Randolph MD, An Alternative Approach to Allergies, rev. ed. Harper Collins,

1990

- Dr. Sherry Rogers, Detox or Die, Sandkey Co., 2002

 

For a copy of Helke Ferrie's report on MCS to the Government of Canada's

Minister of Human Resources send $ 20.00 to 1997 Beechgrove Rd., Alton, ON, L)N

1A0 to cover copying and postage.

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