MULTIPLE CHEMICAL SENSITIVITIES UNDER SIEGE - long but important

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MULTIPLE CHEMICAL SENSITIVITIES UNDER SIEGE

http://www.getipm.com/personal/mcs-campbell.htm

by Ann Mc, MD

Chair, Multiple Chemical Sensitivities Task Force of

New Mexico.

Movies like Brockovich and A Civil Action depict

the true stories of communities whose members became

ill from drinking water contaminated with industrial

waste. Their struggles clearly show how

difficult it is for people to hold corporations

responsible for the harm they have caused. Whether

individuals are injured by exposures to contaminated

air or water, silicone breast implants, cigarettes, or

other chemicals, their quest for justice is usually a

versus Goliath battle that pits average citizens

against giant corporations.

When confronted with the harm they have caused,

corporations typically blame the victims, deny the

problem, and try to avoid responsibility for the harm

caused. The corporate response to people with

multiple

chemical sensitivities (MCS) has been no different.

People with MCS are made sick from exposures to many

common products, such as pesticides, paints, solvents,

perfumes, carpets, building materials, and many

cleaning and other products. But the manufacturers of

these products would rather silence the messenger than

acknowledge the message that their products are not

safe. To that end, the chemical manufacturing industry

has launched an anti-MCS campaign designed to

create the illusion of controversy about MCS and cast

doubt on its existence. What has been said about the

tobacco industry could easily apply to the chemical

industry regarding MCS, that is, “the only diversity

of opinion comes from the authors with … industry

affiliations (1).”

It is a credit to the chemical industry’s public

relations efforts that we frequently hear that

multiple chemical sensitivities (MCS)is

“controversial” or find journalists who feel obligated

to report “both sides” of the MCS story, or attempt to

give equal weight to those who say MCS exists and

those who say it does not. But this is very

misleading, since there are not two legitimate views

of MCS. Rather, there is a serious, chronic, and

often disabling illness that is under attack by the

chemical industry.

The manufacturers of pesticides, carpets, perfumes,

and other products associated with the cause or

exacerbation of chemical sensitivities adamantly want

MCS to go away. Even though a significant and growing

portion of the population report being chemically

sensitive, chemical manufacturers appear to think that

if they can just beat on the illness long enough, it

will disappear. To that end, they have launched a

multipronged attack on MCS that consists of labeling

sufferers as “neurotic” and “lazy,” doctors who help

them as “quacks,” scientific studies which support MCS

as “flawed,” calls for more research as “unnecessary,”

laboratory tests that document physiologic damage in

people with MCS as “unreliable,” government assistance

programs helping those with MCS as “abused,” and

anyone sympathetic to people with MCS as “cruel” for

reinforcing patients’ “beliefs” that they are sick.

They also have been influential in blocking the

admission of MCS testimony in lawsuits through their

apparent influence on judges.

Like the tobacco industry, the chemical industry often

uses non-profit front groups with pleasant sounding

names, neutral-appearing third party spokespeople, and

science-for-hire studies to try to convince others of

the safety of their products. This helps promote the

appearance of scientific objectivity, hide the biased

and bottom-line driven agenda of the chemical

industry, and create the illusion of scientific

“controversy” regarding MCS. But whether anti-MCS

statements are made by doctors, researchers,

reporters, pest control operators, private

organizations, or government officials, make no

mistake about it - the anti-MCS movement is driven by

chemical manufacturers. This is the real story of

MCS.

CHEMICAL INDUSTRY

In 1990, the Chemical Manufacturers Association (now

the American Chemistry Council) vowed to work to

prevent the recognition of MCS out of concern for

potential lost profits and increased liability if MCS

were to become widely acknowledged (2). It

specifically committed to work through physicians and

medical associations to accomplish this, stating that

it was critical to keep physicians from legitimizing

MCS. Unfortunately, this plan has been relatively

successful. The industry has enlisted the aid of

vocal anti-MCS physicians who promote the myths that

people with MCS are “hypochondriacs,” “hysterical,”

“neurotic,” suffer from some other psychiatric

disorder, belong to a “cult,” or just complain too

much. Most of these physicians work for industry as

high-paid expert witnesses although their financial

ties are usually not disclosed in their journal

articles, interviews, or speaking engagements.

Therefore, many people, including those in the health

care profession, are often led to believe that these

physicians’ opinions reflect an honest appraisal of

MCS rather than

the chemical industry’s agenda. At least one industry

expert witness has authored two anti-MCS position

papers for prominent medical associations. It is easy

to see why these papers are biased against MCS and how

by helping to combat MCS in the courts, these position

statements are quite lucrative for industry and expert

witnesses alike.

PHARMACEUTICAL INDUSTRY

The pharmaceutical industry is also involved in the

effort to suppress MCS. Drug companies, which usually

work with the medical profession to try to help

patients, are working to deny help for those with MCS.

This is extraordinary, but can be explained by the

fact that the pharmaceutical industry is intimately

linked to the chemical industry. That is, many

companies that make medications also manufacture

pesticides, the chemicals most implicated in causing

MCS and triggering symptoms in people who are

chemically sensitive. For example, Novartis (formerly

Ciba-Geigy and Sandoz) is a pharmaceutical company

that makes and sells the widely used herbicide

atrazine (3). This helps explain why a Ciba-Geigy

lobbyist submitted material to a New Mexico

legislative committee in 1996 opposing all legislation

related to MCS and declaring that the symptoms of

people with MCS “have no physical origins“ (4). The

legislation being proposed would have, among other

things, funded a prevalence study of MCS, an

information and assistance program and “800” telephone

number, hospital accommodation guidelines, and an

investigation of housing needs of people with MCS (5).

Novartis is also a large manufacturer of the

organophosphate insecticide diazinon (3), a neurotoxic

pesticide currently being reviewed for its safety by

the U.S. Environmental Protection Agency (6). The EPA

recently banned a related organophosphate pesticide,

chlorpyrifos (commonly sold as Dursban), from

household uses because of concern about its toxicity,

especially to children (7). The pharmaceutical company

Eli Lilly used to be a part of DowElanco (now Dow

Agroscience), the primary manufacturer of chlorpyrifos

(8). Aventis (formerly Hoeschst and Rhone-Poulenc)

manufactures the allergy medicine Allegra as well as

the carbamate-containing insecticide Sevin (active

ingredient carbaryl) (9). Monsanto, known for making

Roundup and other herbicides, is a wholly owned

subsidiary of a pharmaceutical company called

Pharmacia (10, 11). Zeneca manufactures pesticides

(12) and pharmaceuticals (AstraZeneca), including

drugs to treat breast and prostate cancer, migraine

headaches, and epilepsy (13) -- illnesses whose cause

or exacerbation have been linked to pesticide

exposures.

Pfizer and Abbott Laboratories make both

pharmaceuticals (14) and pesticides (15), while BASF

makes pharmaceutical ingredients and pesticides (16).

Even Bayer, famous for making aspirin, manufactures

the popular neurotoxic pyrethroid insecticide Tempo

(active ingredient cyfluthrin) (17). Novartis, Ciba,

Dow, Eli Lilly, BASF, Aventis, Zeneca, and Bayer are

all members of the American Chemical Council (formerly

the Chemical Manufacturers Association), as are other

pharmaceutical manufacturers, such as Dupont, Merck,

Procter & Gamble, and Roche (18).

The pharmaceutical industry has been able to spread

misinformation about MCS and limit the amount of

accurate information received by physicians and other

health care providers through its financial influence

over medical journals, conferences, and research. It

is well known that magazines containing cigarette ads

are less likely to publish anti-smoking articles.

Similarly, because medical journals rely on

pharmaceutical advertisements for funding, they are

not likely to publish positive MCS articles. In fact,

researchers supportive of MCS have long complained

that it is very difficult to get their studies

published in the medical literature. Pharmaceutical

companies ay also influence medical organizations such

as the American Medical Association, whose funding

relies in large part on the sales of drug

advertisements in its journals (19), and the American

Academy of Family Physicians, whose major donors are

drug companies (20).

Corporate financing of medical conferences has also

been shown to bias the information presented (21).

Since continuing medical education is becoming

increasingly reliant on corporate sponsorship,

industry influence over physician education is a

growing concern in the medical community (22). Other

ways the pharmaceutical industry can influence

physicians are also of concern. In a 2000 Journal of

the American Medical Association article (23), the

author states that “physicians have regular contact

with the pharmaceutical industry and its sales

representatives, who spend a large sum of money each

year promoting to them by way of gifts, free meals,

travel subsidies, sponsored teachings, and symposia“

(p. 373). The study concludes that “the present

extent of physician-industry interactions appears to

affect prescribing and professional behavior and

should be further addressed … “ (p. 373). This is

especially true regarding the effect that the

pharmaceutical and chemical industries have had on

physicians’ professional behavior in response to MCS.

Because they do not receive appropriate and accurate

information on MCS during their training or from

medical journals and continuing education courses,

physicians have been largely unprepared to deal with

chemically sensitive patients. As a result, their

responses to MCS patients have tended to range from

dismissive to blatantly hostile.

One example of the pharmaceutical industry’s direct

attempt to present anti-MCS information at a medical

conference was at the 1990 meeting of the American

College of Allergy and Immunology. Sandoz (now

Novartis) was scheduled to sponsor a one day workshop

that characterized people with MCS as mentally ill

(24). This company was a large manufacturer of

pesticides and pharmaceuticals (25), including

anti-psychotic, anti-depressant, and sedative

medications (14). Therefore, Sandoz stood to benefit

both from pesticides being exonerated as the cause of

MCS and from people with MCS being treated with

psychiatric drugs. As it turned out, people with MCS

outraged by the workshop risked their health to

protest the event and were able to shut it down (26).

The pharmaceutical industry also influences research

on MCS. First and foremost, it is not pursuing

research on MCS (other than to perhaps fund a few

studies to try to discount it), despite being a major

source of funding for medical research to help those

with other diseases. Secondly, as was evident when the

Ciba-Geigy lobbyist opposing funding for MCS research

in New Mexico, the industry is not only refraining

from doing research on MCS itself but is attempting to

block research by others as well.

A recent editorial in the New England Journal of

Medicine outlined a myriad of ways that financial ties

with the pharmaceutical industry may influence

physicians (27). “The ties between clinical

researchers and industry include not only grant

support, but also a host of other financial

arrangements. Researchers serve as consultants to

companies whose products they are studying, join

advisory boards and speakers’ bureaus, enter into

patent and royalty arrangements, agree to be the

listed authors of articles ghost written by interested

companies, promote drugs and devices at

company-sponsored symposiums, and allow themselves to

be plied with expensive gifts and trips to luxurious

settings” (p. 1516). In fact, some industries,

including the tobacco industry, have paid authors up

to $10,000 to publish letters in high-profile

scientific journals (28, 29). The author of another

New England Journal of Medicine article wrote, “The

practice of buying editorials reflects the growing

influence of the pharmaceutical industry on medical

care” (30). Since these conflicts of interest are

increasingly encroaching on the medical profession in

general, it is highly likely that some of them apply

to physicians opposed to MCS as well.

ENVIRONMENTAL SENSITIVITIES RESEARCH INSTITUTE

Several nonprofit organizations and trade associations

sponsored by the chemical industry are particularly

active in opposing MCS. For example, lobbyists for

RISE (Responsible Industry for a Sound Environment), a

pesticide trade association, and the Cosmetic,

Toiletry, and Fragrance Association testify against

MCS each year in the New Mexico legislature. The

Chemical Specialties Manufacturing Association, which

represents companies who manufacture and distribute

home, lawn and garden pesticides, antimicrobial and

disinfectant products, automotive specialty products,

waxes, floor finish products, and many types of

cleaners and detergents, has also submitted anti-MCS

comments to the NM legislature (31). And individuals

from a lesser-known organization calling itself the

Advancement of Sound Science Coalition published an

opinion-editorial in two New Mexico newspapers several

years ago that was critical of the positive steps

being taken by the New Mexico legislature on MCS (32,

33).

The leading opponent of MCS, however, is

unquestionably the Environmental Sensitivities

Research Institute (ESRI). This corporate-financed

nonprofit organization was founded in 1995

specifically to combat MCS. According to MCS Referral

and Resources, ESRI was founded to “serve the needs of

industries affected by MCS litigation” (34). But

since ESRI tends to be secretive about its membership,

board members, and activities, it is hard to know

exactly who is involved with ESRI and what the

organization does. However, it is known that ESRI is

primarily supported by its member companies and

trade associations, who pay $5000 or $10,000 a year in

annual dues (35, 36). It is also known that the past

board of directors have included representatives or

employees of DowElanco, Monsanto, Procter and Gamble,

RISE, the Cosmetic, Toiletry and Fragrance

Association,

and other chemical companies and trade associations

(36).

Although ESRI has in the past claimed to be a

scientific and educational organization dedicated to

the open exchange of scientific information (37), this

is belied by its decidedly anti-MCS views. ESRI’s bias

against MCS is evident in its fact sheet that claims

that MCS is a “phenomenon” that “defies classification

as a disease” (38). It appears that this

organization’s main work consists of disseminating

anti-MCS literature, holding anti-MCS conferences,

intervening in legal and government affairs, and

otherwise trying to impede progress on MCS. And

despite its name as a research institute, ESRI has

only recently begun to award small MCS research

grants. It will be a great surprise, however, if the

majority of these studies do not support a

psychological basis for MCS.

Besides lacking objectivity, some of ESRI’s activities

demonstrate questionable ethics. For example, ESRI

published an “advertorial,” advertisements made to

look like legitimate news stories, in newspapers

around the country that stated that MCS “exists only

because a patient believes it does and because a

doctor validates that belief.” Then, according to

Albert Donnay of MCS Referral in Resources, ESRI

anonymously tried to get the American Academy of

Family Physicians Foundation (AAFPF) to endorse its

anti-MCS brochure (36). Fortunately, the AAFPF

withdrew its support for the brochure when ESRI would

not put its name on it.

One of the more flagrant misrepresentations in the

brochure (39) was the answer “No” to the question, “Is

MCS listed as a disability under the Americans with

Disabilities Act?” One might consider this an

honest mistake if it were not for the fact that an

article published at almost the same time by ESRI’s

then executive director clearly demonstrated he knew

better. In the article, he states that “although

not categorically noted to be a disability in the body

of the law, the ADA [Americans with Disabilities Act]

does allow for the consideration of MCS as a

disability on a case-by-case analysis that is applied

to all other physical and mental impairments” (40).

And he also writes that “in 1991, the Department of

Housing and Urban Development stated that people

suffering from MCS can seek protection under federal

housing discrimination laws.” It appears that ESRI was

attempting to mislead physicians and the public into

believing that MCS is not a covered disability, while

its executive director was warning an

industry-oriented audience that MCS was a covered

disability and

offering suggestions for how to defend themselves

against a claim.

New Mexico has had direct experience with ESRI

representatives and tactics. In 1996, ESRI mailed

anti-MCS literature to a state disability agency that

was developing a report to the legislature on MCS.

Among other things, this material included advice on

how to avoid accommodating chemically sensitive

employees (41). Then, ESRI staff visited New Mexico

in person. The ESRI manager attended a Town Hall

Meeting on MCS at which she offered to help the state

epidemiologists develop a prevalence study protocol.

Shortly thereafter, however, she reportedly told

another member of the prevalence study working group

that MCS can’t be studied because it doesn’t exist.

This circular reasoning, that you can’t prove MCS

exists without more study and you can’t study it

because it doesn’t exist, is commonly used by industry

lobbyists. A corollary to this is the lobbying

strategy of calling for more research on MCS while

attempting to block it at the same time.

ESRI’s then executive director also visited Santa Fe

in 1996. Among other things, he went to a Medicaid

Advisory Committee meeting and urged that Medicaid

benefits be denied for the diagnosis and treatment of

chemical sensitivities, spoke against MCS at a

continuing medical education (CME) conference for

physicians where he failed to disclose his industry

affiliations as required by CME guidelines, and

berated the staff at an independent living center for

providing a support group for people with MCS.

Another ESRI project involved paying a medical journal

to publish the proceedings of an anti-MCS conference

in its supplement (42). This conference was

organized, in part, by a consulting firm that was

owned by ESRI’s then executive director and supplied

expert witnesses to testify against MCS. Later these

papers were cited as references to support anti-MCS

statements in material ESRI gave to the Ciba-Geigy

lobbyist, which she submitted to the legislature. In

keeping with its attempts to keep a low profile,

however, ESRI did not put its name on the documents

that were submitted.

A ROSE BY ANY OTHER NAME

Even though MCS has gone by that name for over a

decade, industry associates would have you believe

that it goes by a myriad of other names, so many that

it must not be describing anything legitimate. In

fact, if an article starts out with a long list of

possible names for MCS, you can be almost positive it

is going to be critical of MCS. Referring to MCS as a

“phenomenon” rather than an illness and using the term

“multiple chemical sensitivity syndrome” also tend to

be code for “it doesn’t really exist” or if it does,

“it’s all in people’s heads.” Articles using these

names are usually accompanied by other

myths and put-downs, such as MCS has no definition, no

objective findings, and no known prevalence, and is

“only symptom-based,” a “belief system,” or

“chemophobia.” People with MCS are also frequently

dismissed as having an “unexplained illness,” as if

they, rather than their physicians, were to blame for

not adequately “explaining” it.

Since 1996, however, the chemical industry has taken a

bold new approach to the name for MCS. It has made a

concerted effort to rename MCS “idiopathic

environmental intolerances (IEI).” It is quite clear

that its motivation is to get the word “chemical” out

of the name. This would be analogous to the tobacco

industry trying to change the name of “smokers cough”

to “idiopathic respiratory paroxysms.” Anything to

try to distance the disease from its products.

But despite frequent claims to the contrary by its

users, the term IEI has not replaced the name for MCS.

Its use, however, has slowly increased over the years

in anti-MCS journal articles, industry

propaganda, and medical association position papers.

Fortunately, the use of the term IEI is like a tracer

dye that immediately alerts the reader, patient, or

constituent that the person or organization using the

term is biased against MCS. The most frequent users

of the name IEI are doctors who work for industry as

expert witnesses or allegedly “independent” medical

examiners, industry-sponsored organizations, and

allergy or occupational medicine organizations that

have long been critical of environmental doctors who

treat people with MCS. While there may be some

individuals who innocently use the term IEI, the

overwhelming majority who use it appear to be

connected to industry in some way.

One of the more outrageous claims that the chemical

industry and its associates make is that the World

Health Organization (WHO) supports the name change

from MCS to IEI. The WHO was one of the sponsors of

an International Programme on Chemical Safety (IPSC)

workshop on MCS held in Germany in February 1996.

This workshop was dominated by industry-associated

participants and had no representatives from

environmental, labor, or consumer groups. Instead,

the

non-governmental participants were individuals

employed by BASF, Bayer, Monsanto, and Coca Cola (43).

It was at this meeting that the decision was made to

try to change the name of MCS to IEI.

Besides getting the word “chemical” out of the name,

the workshop participants chose to add the term

“idiopathic,” apparently because they thought it meant

the illness was “all in someone’s head” rather than of

unknown etiology (cause) (44). But lots of “real”

illnesses are considered idiopathic, such as

idiopathic epilepsy (i.e., epilepsy not resulting from

trauma, surgery, infection, or other obvious cause).

Still, implying that MCS has no known cause helps the

industry. They do not want to be held responsible for

their products causing MCS, or for that matter,

triggering symptoms in people sensitized to them.

It’s hard to understand, however, how IEI is much of

an improvement over MCS, since the term MCS does not

address the cause of the illness either. It is just a

good description of the condition, that sufferers are

sensitive to multiple chemicals, which is not that

different from having multiple “environmental

intolerances.”

In any case, the WHO issued a statement to the

workshop participants after the meeting to try to put

a stop to claims that WHO supported the name change

from MCS to IEI. It stated that “A workshop report to

WHO, with conclusions and recommendations, presents

the opinions of the invited experts and does not

necessarily represent the decision or the stated

policy of WHO.” It goes on to say that “with respect

to ‘MCS,’ WHO has neither adopted nor endorsed a

policy or scientific opinion” (45). Despite this

explicit disclaimer, claims that the World Health

Organization supports IEI continue to be made by MCS

opponents.

MCS IN COURT

Perhaps the area where the chemical industry is most

aggressively fighting MCS is in the courts. This is

not surprising considering the fact that ESRI was

founded to assist industries involved in MCS

litigation. MCS cases commonly involve workers

compensation, social security, toxic tort, disability

or health insurance, and disability accommodations.

MCS can also arise in divorce proceedings, child

custody battles, and landlord-tenant and other

disputes. In lawsuits where chemical manufacturers

are directly involved, for example, when they are

being sued for harm caused by their products, it is

clear that attacks on the plaintiff’s credibility and

medical condition, including MCS, come from the

manufacturers. It is often unrecognized, however, how

much the chemical industry is also involved in

suppressing MCS in other lawsuits, through filing of

briefs, supplying “expert” witnesses, and distributing

anti-MCS literature to attorneys and witnesses.

The chemical industry also seems to have been

influential in convincing many judges that MCS

testimony should not be allowed in court. They argue

that MCS does not satisfy the Daubert criteria for the

admission of scientific testimony established by the

U.S. Supreme Court in 1993. This ruling eliminated

the requirement that expert testimony be “generally

accepted” in the scientific community to be admissible

and replaced it with the requirement that the

reasoning or methodology underlying any proposed

testimony merely be scientifically reliable and

relevant (46). Thus, the intent of the ruling was to

allow testimony on emergent theories of disease even

if they had not yet been generally accepted by the

medical community. But in the case of MCS, this has

backfired. The Daubert ruling, which was intended to

make it easier to admit scientific testimony in court,

has increasingly been used to block testimony on MCS.

Some judges have ruled that MCS does not satisfy the

Daubert criteria, despite the fact that it clearly

satisfies at least three of the four factors specified

in the Daubert ruling to assess proposed testimony.

The Daubert ruling states that the following

considerations will bear on admissibility of expert

testimony: 1) whether the theory or technique in

question can be (and has been) tested, 2) whether it

has been subjected to peer review and publication, 3)

whether the reasoning or methodology has a known or

potential error rate, and 4) whether it has widespread

acceptance within a relevant scientific community

(46). According to these criteria, testimony on MCS

should be admitted because, it “can” and “has” been

tested (47), has been subjected to extensive peer

review and publication (48), and is widely accepted in

the environmental medicine community. The factor

regarding potential error rates is largely irrelevant

because MCS is a clinical diagnosis that does not rely

on tests.

But whether an illness or theory satisfies the Daubert

criteria is obviously in the eye of the beholder. A

judge in New Mexico, for example, ruled there was not

enough published literature on MCS to fulfill the

Daubert criteria (49). Yet there are over 600

articles on MCS and related conditions in the

published literature, the majority of which support a

physiological rather than psychological basis for MCS

in a ratio of two to one (48). The judge rejected

testimony on MCS even though he thought there would be

enough literature in 5 to 10 years for it to satisfy

the Daubert requirements. But if a judge is convinced

MCS will be well established in the future, then

testimony on MCS is credible and ought to be admitted

now. After all, the intent of the Daubert rule is to

admit testimony on just such valid emerging theories

of disease as this one. In addition, it is unclear

how much this judge was swayed by the anti-MCS

opinions of the defendant’s expert witness, who

admitted she relied on material sent by ESRI for her

testimony and did not know who funded the organization

(50). It is, indeed, unfortunate that the subjective

nature of the Daubert criteria has allowed judges to

misinterpret them in favor of the chemical industry.

This has resulted in many people with MCS being denied

disability benefits, compensation for toxic injuries,

and reasonable accommodations under the ADA, among

other things.

A case in point is a recent ruling by the

Massachusetts Supreme Court that rejected MCS

testimony in a work-related injury case because the

physician’s testimony was not based on “reliable

methodology, that is, because he did not use a test to

diagnose MCS (51). This conclusion was reached even

after stating that “a new theory or process might be

so ‘logically reliable’ that it should be admissible,

even though its novelty prevents it from having

attained general acceptance in the relevant scientific

community” and that “in many cases personal

observation will be a reliable methodology to justify

an expert’s conclusion.” This is another example of a

biased interpretation of the law against MCS. And

again we find the chemical industry involved. Though

not a defendant in the case, the American Chemical

Council (formerly the Chemical Manufacturers

Association) filed a “friend of the court” brief and

expressed delight with the court’s anti-MCS decision

(52).

Finally, there are growing attempts to get medical

licensing boards to revoke the licenses of physicians

who diagnose and treat chemically sensitive patients.

One physician is in a legal battle with the California

Medical Board to keep his license, in part, for this

reason (53). In an anti-MCS booklet, an author who is

known as an industry sympathist, has called for state

licensing boards to “scrutinize” the activities of

doctors who treat MCS patients. He also stated that

he thought “most of them should be delicensed” (54).

Trying to put physicians who treat MCS out of practice

or harassing them until they quit on their own is an

extremely insidious way of trying to get rid of MCS.

It is also a threat to the independent practice of

medicine by everyone.

IMPACTS OF MCS

The impact of MCS on individuals and society is huge,

both in terms of its potential severity and the number

of people affected. Many people with MCS have lost

everything - including their health, homes, careers,

savings, and families. They are chronically ill and

struggle to obtain the basic necessities of life, such

as food, water, clothing, housing, and automobiles,

that they can tolerate. Finding housing that does not

make them sicker, that is, housing that is not

contaminated with pesticides, perfume, cleaning

products, cigarette smoke residues, new carpets or

paint, and formaldehyde-containing building products,

is especially difficult. Many people with MCS live in

cars, tents, and porches at some time during the

course of their illness. In addition, people with MCS

usually have financial difficulties. One of the most

unjust aspects of the anti-MCS movement is that many

expert witnesses are paid $500 per hour to testify

against people disabled with MCS who are seeking that

much money to live on per month.

The impact on society is no less severe. An

increasing number of physicians, lawyers, teachers,

computer consultants, nurses and other skilled workers

who were once productive members of society can no

longer support themselves or contribute their skills

to society. Their loss of earning power also

translates into less money spent in the marketplace

and less tax revenues. Deputy state epidemiologist

Ron Voorhees of New Mexico estimated in a letter to

the governor that the state may be losing 15 million

dollars a year in tax revenues due to the decreased

earning capacity of those with MCS (55).

And this medical condition is not rare. Prevalence

studies in California (56) and New Mexico (57) found

that 16% of the respondents reported being chemically

sensitive. Additionally, in New Mexico 2% of the

respondents reported having been diagnosed with MCS --

the more severe form of chemical sensitivities -- and

in California, 3.5% reported having been diagnosed

with MCS and being chemically sensitive. Although

women report being chemically sensitive twice as often

as men, which contributes to its “hysteria” label,

those reporting chemical sensitivities are otherwise

evenly distributed with respect to age, education,

income, and geographic areas. Chemical sensitivities

are also evenly reported among ethnic and racial

groups, except for Native Americans, who reported a

higher prevalence in both studies.

It should be of great concern to everyone that this

devastating and potentially preventable illness is

affecting an increasing percentage of the population

and disabling a significant portion of the work force.

It is affecting people in all walks of life

throughout the country and around the world. It is

vitally important, therefore, that MCS be squarely

addressed and not swept under the rug as the chemical

and pharmaceutical industries are trying to get the

medical profession and government to do. But ignoring

MCS is not only ill-advised, it is inhumane.

CONCLUSION

MCS is under siege by a well-funded and widespread

disinformation campaign being waged by the chemical

and pharmaceutical industries. Their goal is to create

the illusion of controversy about MCS and cast doubt

on its existence. These industries feel threatened by

this illness, but rather than heed the message that

their products may be harmful, they have chosen to go

after the messenger instead. While corporations are

only beholden to their stockholders, medicine and

government need to be responsive to the needs of their

patients and citizens. Unfortunately, industry has

convinced many in the medical and legal professions,

the government, the general public, and even loved

ones of people with MCS, that this illness doesn’t

exist or is only a psychological problem. As a

result, people whose lives have already been

devastated by the illness itself frequently are denied

appropriate health care, housing, employment

opportunities, and disability benefits. On top of

this, people with MCS often have to endure hostility

and disrespect from the very agencies, professionals,

and people who are supposed to help them.

For example, an elderly woman with MCS was forced out

of public housing and became homeless when staff

insisted on remodeling her apartment, even though she

warned them ahead of time that the new carpet and

cabinets would make her too sick to continue living

there. The physician of a woman, hospitalized because

she was having anaphylactic reactions to all foods,

tried to transfer her to the psychiatric ward for

“force feeding.” A school district fired a chemically

sensitive teacher for excessive absenteeism after it

failed to provide her with the accommodations she had

requested and needed in order to work. A former

airline attendant had to camp in the desert and a

mother and her small child had to live in their car

because they could not find housing that did not make

them severely ill. And a man disabled with MCS is

unable to obtain vocational rehabilitation services

even though he wants to work.

Countless others have failed to find tolerable

housing, including a former marathon runner who has

lived in her car for 7 years and struggles to fight

off frostbite every winter. In another case, a

chemically sensitive woman living in her trailer was

forced to leave a state park when hostile staff

insisted on spraying pesticides while she was there.

The park supervisor said that he had seen a television

show on MCS which convinced him that he did not have

to make accommodations for people claiming to have MCS

because it did not exist. The show had featured

ESRI’s then executive director and portrayed people

with MCS as freeloaders and misfits.

Despite the chemical industry’s disinformation

campaign, however, and its influence over doctors,

lawyers, judges, and government, incremental progress

is being made with respect to MCS. This is a

testament to the strength, courage, dedication, and

sheer numbers of people with MCS. In fact, there are

so many people becoming chemically sensitive that

attempts to ignore or silence them are ultimately

doomed to fail. But even though it is just a matter

of time before MCS gets the recognition it deserves,

each day it is delayed prolongs the suffering of

millions of people with MCS and puts millions more at

risk of developing it. Therefore, it is essential that

those in medicine, government, and society begin to

see past the industry disinformation campaign in order

to recognize the true nature of MCS and the urgent

need to address this growing epidemic.

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Copyright© Townsend Letter for Doctors and Patients

2000

Reprinted with Permission.

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