| Ilena Rose 2005-07-31, 11:52 am |
| MULTIPLE CHEMICAL SENSITIVITIES UNDER SIEGE
~~~ Great find ... thanks Jan ~~~~
Thank God that sanity finally prevailed at the Quacks LOST and Dr.
Sinaiko was cleared:
EXCERPT: 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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
MULTIPLE CHEMICAL SENSITIVITIES UNDER SIEGE
http://www.getipm.com/personal_/mcs-campbell.htm
by Ann McCampbell, MD
Chair, Multiple Chemical Sensitivities Task Force of New Mexico.
Movies like Erin 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 David 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
may 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 All Rights
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