[Congressional Record Volume 144, Number 141 (Friday, October 9, 1998)]
[Extensions of Remarks]
[Pages E1992-E1994]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
MULTIPLE CHEMICAL SENSITIVITY
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HON. BERNARD SANDERS
of vermont
in the house of representatives
Thursday, October 8, 1998
Mr. SANDERS. Mr. Speaker, I rise today to discuss the issue of
Multiple Chemical Sensitivity as it relates to both our civilian
population and our Gulf war veterans.
Multiple Chemical Sensitivity or MCS is a chronic condition marked by
heightened sensitivity to multiple different chemicals and other
irritants at or below previously tolerated levels of exposure.
Sensitivity to odors is often accompanied by food and drug intolerance,
sensitivity to sunlight and other sensory abnormalities, such as
hypersensitivity to touch,
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heat and-or cold, and loud noises. MCS is often accompanied by impaired
balance, memory and concentration.
As a member of the Human Resources Subcommittee, which has oversight
jurisdiction for the Veterans' Affairs, I have been involved in the
issue of Gulf war illness and Multiple Chemical Sensitivity. I have
been concerned for many years about the role that chemicals may be
playing on human health, not only in Gulf war veterans and their
families, but in civilian society as well. I have talked to many people
who are suffering symptoms not dissimilar from the symptoms that our
Persian Gulf veterans are experiencing because of chemicals in their
homes or workplaces.
As has been well-documented, the military theater in the Persian Gulf
was a chemical cesspool. Our troops were exposed to chemical warfare
agents, leaded petroleum, widespread use of pesticides, depleted
uranium and burning oil wells. In addition, they were given a myriad of
pharmaceuticals as vaccines. Further, and perhaps most importantly, as
a result of a waiver from the FDA, hundreds of thousands of troops were
given pyridostigmine bromide. Pyridostigmine bromide, which was being
used as an anti-nerve agent, had never been used in this capacity
before. In the midst of all this, our troops were living in a hot,
unpleasant climate and were under very great stress.
The Department of Defense and the Department of Veterans Affairs have
downplayed the presence of Multiple Chemical Sensitivity in Gulf war
veterans. In the very beginning, the Defense Department and Veterans'
Affairs actually denied that there was any problem whatsoever with our
veterans' health. Then, after finally acknowledging that there was a
problem, they concluded that the problem was in the heads of our
soldiers--of psychological origin. The DOD and the VA responded very
poorly to our veterans' concerns. Tragically, our veterans were
discounted. They were called malingerers.
Ever so slowly, the truth about chemical exposure in the Persian Gulf
has begun to surface. On July 24, 1997, the Defense Department and the
Central Intelligence Agency gave us their best estimate--that as many
as 98,910 American troops could have been exposed to chemical warfare
agents due to destruction of ``the Pit'' in Khamisiyah, an Iraqi
munitions facility.
Not waiting for the DOD and VA, many other Federal, State, and local
government agencies have recognized the existence of Multiple Chemical
Sensitivity. I want to submit for the Record the latest ``Recognition
of Multiple Chemical Sensitivity'' newsletter which lists the U.S.
Federal, State, and local government authorities, U.S. Federal and
State courts, U.S. workers' compensation boards, and independent
organizations that have adopted policies, made statements, and-or
published documents recognizing Multiple Chemical Sensitivity
disorders.
Recognition of Multiple Chemical Sensitivity
Multiple Chemical Sensitivity or MCS is a chronic condition
marked by heightened sensitivity to multiple different
chemicals and other irritants at or below previously
tolerated levels of exposure. Sensitivity to odors is often
accompanied by food and drug intolerances, photosensitivity
to sunlight and other sensory abnormalities, such as
hypersensitivity to touch, heat and/or cold, and loud noises
and impaired balance, memory and concentration. MCS is more
common in women and can start at any age, but usually begins
in one's 20's to 40's. Onset may be sudden (from a brief
high-level toxic exposures) or gradual (from chronic low-
level exposures), as in ``sick buildings.'' The syndrome is
defined by multiple symptoms occuring in multiple organ
systems (most commonly the neurological, gastrointestinal,
respiratory, and musculoskeletal) in response to multiple
different exposures. Symptoms may include chronic fatigue,
aching joints and muscles, irritable bowel, difficulty
sleeping and concentrating, memory loss, migraines, and
irritated eyes, nose, ears, throat and/or skin. Symptoms
usually begin after a chronic or acute exposure to one or
more toxic chemical(s), after when they ``spread'' to other
exposures involving unrelated chemicals and other irritants
from a great variety of sources (air pollutants, food
additives, fuels, building materials, scented products,
etc.). Consistent with basic principles of toxicology, MCS
usually can be improved, although not completely cured,
through the reduction and environmental control of such
exposures. Many different terms have been proposed in medical
literature since 1869 to describe MCS syndrome and possibly
related disorders whose symptoms also wax and wane in
response to chemical exposures.
Alternate Names Proposed for MCS
Acquired Intolerance to Solvents, Allergic Toxemia,
Cerebral Allergy, Chemical Hypersensitivity Syndrome,
Chemical-Induced Immune Dysfunction, Ecological Illness,
Environmental Illness or ``EI,'' Environmental Irritant
Syndrome, Environmentally Induced Illness, Environmental
Hypersensitivity Disorder, Idiopathic Environmental
Intolerances or ``IEI,'' Immune System Dysregulation,
Multiple Chemical Hypersensitivity Syndrome, Multiple
Chemical Reactivity, Total Allergy Syndrome, Toxic Carpet
Syndrome, Toxin Induced Loss of Tolerance of ``TILT,'' Toxic
Response Syndrome, 20th Century Disease.
Disorders Associated With Single or Multi-Organ Chemical Sensitivity
Akureyri Disease (coded as EN), Asthma, Cacosmia, Chronic
Fatigue Syndrome, Disorders of Porphyrin Metabolism, [Benign
Myalgic] Encephalomyelitis, Epidemic Neuromyastenia (EN),
Fibromyalgia Syndrome, Gulf War Syndrome, Icelandic Disease
(coded as EN), Mastocytosis, Migraine, Neurasthenia, Royal
Free [Hospital] Disease, Sick Building Syndrome, Silicone
Adjutant Disease, Systemic Lupus Erythematosus, Toxic
Encephalopathy.
Listed alphabetically below are the U.S. Federal, State,
and local government authorities, U.S. Federal and State
courts, U.S. workers' compensation boards, and independent
organizations that have adopted policies, made statement,
and/or published documents recognizing MCS disorders under
one name or another as a ligitimate medical condition and/or
disability. An introductory section summarizes recognition or
MCS in peer-reviewed medical literature, and the last section
lists upcoming MCS conferences as well as past conferences
sponsored by Federal Government agencies.
The exact meaning of ``recognition'' varies with the
context as each listing makes clear. Recognition by a court
of law, for example, usually refers to a verdict or appeal in
favor of an MCS plaintiff, while recognition by government
agencies varies tremendously--from acknowledgement of the
condition in publications and policies to research funding
and legal protection of disability rights.
Recognition of MCS by 25 Federal Authorities
U.S. Agency for Toxic Substances & Disease Registry in a
unanimously adopted recommendation of the ATSDR's Board of
Scientific Counselors, which calls on the ATSDR to ``take a
leadership role in the investigation of MCS'' [1992, 24
pages, R-1]. To coordinate interagency research into MCS,
the ATSDR co-chairs the Federal Work Group on Chemical
Sensitivity, which it convened for the first time in 1994
(see below). The ATSDR has helped organize and pay for
three national medical conferences on MCS: sponsored by
the National Academy of Sciences in 1991, the Association
of Occupational and Environmental Clinics in 1991, and the
ATSDR in 1994. The combined proceedings of these three
conferences are reprinted in Multiple Chemical
Sensitivity, A Scientific Overview, ed. Frank Mitchell,
Princeton NJ: Princeton Scientific Publishing, 1995 (609-
683-4750 to order). ATSDR also contributed funding to a
study conducted by the California Department of Health
Services to develop a protocol for detecting MCS outbreaks
in toxic-exposed communities via questionnaires and
diagnostic tests (see entry below on California Department
of Health Services). Officially, however, ATSDR has not
``established a formal position regarding this syndrome''
[1995, 1 page, R-2].
U.S. Army, Medical Evaluation Board on US Army Form 3947
(from the U.S. Army Surgeon General), Army Medical Evaluation
Board certified a diagnosis of ``Multiple Chemical
Sensitivities Syndrome'' for a Persian Gulf veteran on 14
April 1993 [1 page, R-3]. MCS is defined on this form as
``manifested by headache, shortness of breath, congestion,
rhinorrhea, transient rash, and incoordination associated
with exposure to a variety of chemicals.'' The Board's report
further recognizes that this patient's particular MCS
condition began approximately in April 1991 (while the
patient was serving in the Gulf and entitled to base pay),
that the condition did not exist prior to service, and that
it has been permanently aggravated by service. At least five
other active duty Persian Gulf veterans have been diagnosed
by the Army with MCS, as reported by the Persian Gulf
Veterans coordinating Board in ``Summary of the Issues
Impacting Upon the Health of Persian Gulf Veterans,'' [3
March 1994, 4 page excerpt, R-4]. The Army Medical Department
also has requested funding for a research facility to study
MCS (reported in an Army information paper on ``Post Persian
Gulf War Health Issues,'' 16 November 1993).
U.S. Congress in a VA/HUD Appropriations Bill for FY1993
signed by President Bush in 1992 appropriating ``$250,000
from Superfund funds for chemical sensitivity workshops.''
These funds were used by the U.S. Agency for Toxic Substances
and Disease Registry (see above) to co-sponsor scientific
meetings on MCS with various other organizations [1992, 3
page excerpt, R-5] and support an MCS study (see California
State Department of Health Services below). For FY 1998,
Vermont Congressman Bernard Sanders proposed and Congress
appropriated $800,000 to start a new 5-year civilian agency
research program into MCS among Gulf War veterans. Congress
also requested that the administration report back by January
1998 on how it planned to spend the funds (text of
appropriations is quoted in report; see below: U.S.
Department of Health Services, Agency for Health Care Policy
and Research).
U.S. Consumer Product Safety Commission, U.S. Environmental
Protection Agency, American Lung Association, and American
Medical Association (jointly) in a jointly published booklet
entitled Indoor Air Pollution
[[Page E1994]]
An Introduction for Health Professional [US GPO 1994-523-217/
81322] under the heading ``What is `multiple chemical
sensitivity' or `total allergy'?, these organizations state
that ``The current consensus is that in cases of claimed or
suspected MCS, complaints should not be dismissed as
psychogenic, and a thorough workup is essential.'' The
booklet is prefaced by the claim that ``Information provided
in this booklet is based upon current scientific and
technical understanding of the issues presented . . .``
[1994, 3 page excerpt, R-6]
U.S. Department of Agriculture, Forest Service in its Final
Environmental Impact Statement on ``Gypsy Moth Management
in the United States: a cooperative approach'', people
with MCS are mentioned as a ``potential high risk group''
who should be given advance notification of insecticide
treatment projects via ``organizations, groups and
agencies that consist of or work with people who are
chemically sensitive or immunocompromised.'' MCS also is
discussed in an appendix on Human Health Risk Assessment
(Appendix F, Volume III of V) under both ``Harzard
Identification'' and ``Groups at Special Risk'' [1995, 11
page excerpt and 1 page cover letter from John Hazel, the
USDA's EIS Team Leader, to Dr. Grace Ziem of MCS Referral
& Resources, R-130].
U.S. Department of Education in the enforcement by its
Office of Civil Rights of Section 504 of the Rehabilitation
Act of 1973 which requires accommodation of persons with
``MCS Syndrome'' via modification of their educational
environment, as evidenced by several ``agency letters of
finding'' (including San Diego (Calif) Unified School
District, 1 National Disability Law Reporter, para. 61, p.
311, 24 May 1990; Montville (Conn.) Board of Education, 1
National Disability Law Reporter, para. 123, p. 515, 6 July
1990; and four letters (along with an individualized
environment management program) in the case of the Arminger
children of Baltimore County, MD [in 1991, 1992, 1993 and
1994; 20 pages total, R-7]. These accommodations also are
required under the terms of Public Law 94-142, now known as
the Individuals with Disabilities Education Act (CFR34 Part
300). The Department of Education as a whole, however, has no
formal policy or position statement on the accommodation of
students with MCS.
U.S. Department of Energy, Oak Ridge National Laboratory in
being the lead sponsor of the 11th Annual Life Sciences
Symposium on ``Indoor Air and Human Health Revisited.'' This
1994 conference was co-sponsored by the US Environmental
Protection Agency and Martin Marietta Energy Systems'
Hazardous Waste Remedial Action Program. The proceedings are
published in Indoor Air and Human Health (Gammage RB and
Berven BA, editors, Boca Raton FL: CRC Lewis Publishers,
1996) and contain several peer-reviewed papers of critical
relevance to MCS by DoE, EPA and other federally funded
researchers. (4 page excerpt with table of contents, R-175)
U.S. Department of Health and Human Services (HHS), Agency
for Health Care Policy and Research in a ``Report to Congress
on Research on Multiple Chemical Exposures and Veterans with
Gulf War Illnesses'' by agency administrator Dr. John
Eisenberg (who is also the acting Assistant Secretary for
Health). Dr. Eisenberg proposes spending $300,000 in 1998 for
a ``consensus building'' and research planning conference,
$400,000 for research into the health effects of chemical
mixtures, and $100,000 for an Interagency Coordinator in the
Office of Public Health and Science [January 1998, 7 pages
including MCS R&R press release, R-168]. Congress requested
the report in 1998, as part of an $800,000 appropriation for
a new civilian research into MCS (see U.S. Congress, above).
U.S. Dept. of HHS, National Institute on Deafness and Other
Communication Disorders in the funding of MCS-related
olfactory research by its Chemical Senses Branch since
NIDCD's creation in 1988; including $29,583,000 in fiscal
year 1998. The Chemical Senses Branch supports both basic and
applied research, with most of its funds going to just five
``chemosensory research centers'': the Connecticut
Chemosensory Clinical Research Center (860-679-2459), Monell
Chemical Senses Center (215-898-6666), Rocky Mountain Taste
and Smell Center (303-315-5650), State University of New York
Clinical Olfactory Research Center (315-464-5588), and
University of Pennsylvania Smell and Taste Center (215-662-
6580). Free information is available from NIDCD Information
Clearinghouse, 800-241-1044.
U.S. Dept. of HHS, National Institute of Environmental
Health Sciences in ``Issues and Challenges in Environmental
Health,'' a publication about the work of NIEHS, research
priorities are proposed for ``hypersensitivity diseases
resulting from allergic reactions to environmental
substances'' [NIH 87-861, 1987, 45 pages, R--8]. It is not
clear from the context if this statement was meant to include
or exclude MCS, since the condition was still thought by some
at the time to be an allergic-type reaction. In 1992, the
director Dr. Bernadine Healy responded in detail to an
inquiry from Congressman Pete Stark about the scope of NIEHS
research into MCS: ``It is hoped that research conducted at
NIEHS will lead to methods to identify individuals who may be
predisposed to chemical hypersensitivities. . . . NIH
research is directed toward the understanding of the effect
of chemical sensitivities on multiple parts of the body,
including the immune system.'' [1992, 3 pages, R-9]. In 1996,
director Dr. Kenneth Olden wrote US Senator Bob Graham that
``NIEHS has provided research support to study MCS. . . .
NIEHS has also supported a number of workshops and meetings
on the subject.'' [15 April 1996, 2 pages, R-101]. Dr. Olden
also states that ``Pesticides and solvents are the two major
classes of chemicals most frequently reported by patients
reporting low level sensitivities as having initiated their
problems.''
U.S. Department of Health and Human Services, National
Library of Medicine . . . in the 1995 Medical Subject
Headings (MESH) codes used to catalog all medical references,
which started using Multiple Chemical Sensitivity (and its
variations) as a subject heading for all publications indexed
after October 1994 [3 pages excerpt, R-10].
U.S. Department of Health and Human Services, Office for
Civil Rights (OCR) . . . in the final report by the Regional
Director (of Region VI) regarding OCR's investigation of an
ADA-related discrimination complaint filed by a patient with
MCS against the University of Texas M.D. Anderson Cancer
Center for failing to accommodate her disability and thereby
forcing her to go elsewhere for surgery. Prior to completion
of the investigation and the issuance of any formal
``findings,'' the OCR accepted a proposal from the Univ. of
Texas to resolve this complaint by creating a joint
subcommittee of the cancer center's Safety and Risk
Management committees. This subcommittee's three tasks (as
approved by the OCR) are to ``identify a rapid response
mechanism which could be triggered by any patient registering
a complaint or presenting a special need which is environment
related; develop a `protocol' outlining steps to be taken to
resolve environmental complaints by patients . . . ; and
inform the medical staff through its newsletter of the
mechanism and the protocol so that they will better
understand how to address such questions or concerns.'' The
OCR has placed the M.D. Anderson Cancer Center ``in
monitoring'' pending completion and documentation of these
changes, but it may initiate further investigation if M.D.
Anderson fails to complete this process within the 13 months
allowed. [27 March 1996, 11 pages, R-99]
U.S. Department of Health and Human Services, Social
Security Administration . . . in enforcement of the Social
Security Disability Act (see Recognition of MCS by Federal
Courts, below), and in the SSA's Program Operations Manual
System (POMS), which includes a section on the ``Medical
Evaluation of Specific Issues--Environmental Illness''
stating that ``evaluation should be made on an individual
case by case basis to determine if the impairment prevents
substantial gainful activity'' [SSA publication 68-0424500,
Part 04, Chapter 245, Section 24515.065, transmittal #12,
1998, 1 page excerpt, R-11]. In 1997, the U.S. District Court
in Massachusetts required Acting SSA Commissioner John
Callahan to spell out the agency's position on MCS in a
formal memo to the court (31 October 1997, 2 pages, R-164;
see Creamer v. Callahan below, under Recognition of MCS by US
Federal Court Decisions). With this memo, SSA now officially
recognizes MCS ``as a medically determinable impairment'' on
an agency wide basis. MCS is also recognized in several
``fully favorable'' decisions of the SSA's Office of Hearing
and Appeals: in case #538-48-7517, in which the
administrative law judge, David J. Delaittre, ruled that
``the claimant has an anxiety disorder and multiple chemical
sensitivity,'' with the latter based in part on the fact that
``objective [qEEG] evidence showed abnormal brain function
when exposed to chemicals'' [1995, 7 pages, R-12]; in case
#264-65-5308, in which the administrative law judge, Martha
Lanphear, ruled that the claimant suffered severe reactive
airways disease secondary to chemical sensitivity and that
this impairment prevented her from performing more than a
limited range of light work [1996, 8 pages, R-120]; in case
#239-54-6581, in which the administrative law judge, D. Kevin
Dugan, ruled that the claimant suffered severe impairments as
a result of pesticide poisoning, including ``marked
sensitivity to airborne chemicals,'' which prevent her from
``performing any substantial gainful activity on a sustained
basis [1996, 4 pages, R-135]; in case #024-40-2499, in which
the administrative law judge, Lynette Diehl Lang, recognized
that the claimant suffered from severe MCS and could not
tolerate chemical fumes at work (as a result of overexposure
to formaldehyde in a state office building), as a result of
which he was awarded both disability benefits and
supplemental security income [1995, 8 pages, R-140]; in case
#184-34-4849, in which administrative law judge Robert Sears
ruled that the claimant suffered from ``extreme environmental
sensitivities,'' and particularly ``severe intolerance to any
amount of exposure to pulmonary irritants'' [11 June 1996, 7
pages, R-156]; and in case #256-98-4768, in which the
administrative law judge, Frank Armstrong, classified the
claimant's ``dysautonomia triggered by multiple chemical
sensitivities'' as severe and said it ``prevents the claimant
from engaging in substantial gainful activity on a sustained
basis'' [18 March 1997, 8 pages, R-157].
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