DRAGONFLY KINGDOM NTERNATIONAL SERVICE AGENCY

[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

______

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,

[[Page E1993]]

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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