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Multiple Chemical Sensitivity Policy and Resources

[US Government policy memorandum, November 2004]

[Forwarded by Dr. Larry Plumlee, M.D. to MCS community members]

Excellent Resources section at the bottom [click here]

UNITED STATES DEPARTMENT OF EDUCATION
OFFICE OF SPECIAL EDUCATION AND REHABILITATION SERVICES ADMINISTRATION
WASHINGTON, D.C. 20202

INFORMATION MEMORANDUM
RSA-IM-02-04
DATE: NOVEMBER 5, 2001

ADDRESSEES: STATE VOCATIONAL REHABILITATION AGENCIES (GENERAL)
STATE VOCATIONAL REHABILITATION AGENCIES (BLIND)
STATEWIDE INDEPENDENT LIVING COUNCILS
CENTERS FOR INDEPENDENT LIVING
CLIENT ASSISTANCE PROGRAMS
PROTECTION & ADVOCACY OF INDIVIDUAL RIGHTS PROGRAMS
REGIONAL REHABILITATION CONTINUING EDUCATION
PROGRAMS
AMERICAN INDIAN VOCATIONAL REHABILITATION PROGRAMS
RSA SENIOR MANAGEMENT TEAM

SUBJECT: Multiple Chemical Sensitivity

CONTENT: In order to help RSA grantees and other service providers better
understand and address the needs of persons with Multiple Chemical
Sensitivity (MCS), RSA is distributing the attached document developed by
the Arizona Technology Access Program, Institute for Human Development,
Northern Arizona University. This document contains information on
symptoms associated with MCS, potential causes of MCS, and suggestions on
ways to accommodate individuals with MCS. The document also contains a
listing of resources on MCS for consumers and professionals.

If you have any questions regarding this IM, please contact Dr. Thomas E.
Finch at (202) 205-8292, or via email at tom.finch@ed.gov.



Joanne Wilson
Commissioner

Attachment

cc: NATIONAL COUNCIL ON INDEPENDENT LIVING
COUNCIL OF STATE ADMINISTRATORS OF VOCATIONAL REHABILITATION
NATIONAL ASSOCATION OF PROTECTION AND ADVOCACY SYSTEMS
NATIONAL REHABILITATION FACILITIES COALITION
NATIONAL ORGANIZATION OF REHABILITATION PARTNERS
Multiple Chemical Sensitivity

Chemical-based products are all around: in the clothes we wear, in the food
we eat and in the air we breathe. It is not possible to escape exposure.
Many people have become sensitized to the chemicals around them. It is
estimated that as much as 15% of the population has become sensitized to
common household and commercial products.

For some people the sensitization is not too serious a problem. They may
have what appears to be a minor "allergy" to one or more chemicals. Other
people are much more seriously affected. Such people have a condition known
as Multiple Chemical Sensitivity or MCS.

What is Multiple Chemical Sensitivity?
MCS is a disorder triggered by exposures to chemicals in the environment.
Individuals with MCS can have symptoms from chemical exposures at
concentrations far below the levels tolerated by most people. Symptoms
typically occur in more than one area in the body, such as the nervous
system and the lungs. Exposure may be from the air, from food or water, or
through skin contact. The symptoms may come and go with exposures, though
some individuals may have delayed reactions. As MCS gets worse, reactions
become more severe and increasingly chronic, often significantly affecting
bodily functions.
In the early stages, repeated exposure to the substance or substances that
caused the initial health effects provokes a reaction. After a time, it
takes less exposure to cause symptoms. An increasing number of chemical
products may trigger a reaction, including some unrelated to the initial
exposure.
Most frequently, MCS affects an individual's overall physical and emotional
health. It typically impairs the nervous system. It may affect the
digestive and respiratory systems as well. A chemically sensitive person
may also have other pre-existing health conditions. Many affected people
experience a number of symptoms with each chemical exposure.

Symptoms of MCS
asthma or other breathing problems
autoimmune disorders
behavioral problems
bloating or other intestinal problems
cardiovascular irregularities
chronic exhaustion
disorientation or becoming "lost"
dizziness
dystonia (paralysis)
ear, nose and throat problems
fatigue and depression
flu-like symptoms
food allergies and intolerances
genitourinary problems
MCS may result from a single massive exposure to one or more toxic
substance or repeated exposures to low doses. Some people become chemically
sensitive following a toxic chemical spill at work or in their community,
or after exposure to pesticides. Or, individuals may develop this condition
from spending time in a poorly ventilated building, where they breathe a
combination of chemicals. MCS may be brought on by a wide array of
chemicals found at home, at work, in hospitals, in parks, and at school.

People Diagnosed with MCS
Studies have found that many people diagnosed with MCS were:
industrial workers
teachers, students, office and health care workers in sealed buildings
chemical accident survivors
people living near toxic waste sites
people whose air or water is highly polluted
people exposed to various chemicals in consumer products, food, and
pharmaceuticals
Gulf War and Vietnam Conflict veterans

Not all people with MCS fit into these categories. For example, some have
experienced a toxic exposure from flea and roach sprays, or from foam
insulation (urea formaldehyde) in their home. Other people with MCS cannot
readily identify situations where they have been exposed to chemical products.

People with MCS may become partially or totally disabled for several years
or for life. They must make fundamental changes in lifestyle and at home.
Their marriages and other relationships may end from the stress of coping
with this disabling condition. They may drag themselves to work only to
return home sicker and more exhausted each day. They may be forced to leave
their jobs and deal with the devastating loss of income and health
insurance. Some people eventually recover, but few return to complete health.

What Can Cause MCS?
No one knows for sure what causes MCS. However, in non-industrial
workplaces, a number of common products and processes have been identified
as contributing to the onset of MCS. Some exposures that have been linked
to this condition are:
Agent Orange for Vietnam Veterans
antibiotics and other medication
carbonless paper, inks, copying machine and laser printer toner
cleaning supplies
DEET - an insect repellant which may have been a significant trigger for
Gulf War Veterans
formaldehyde in new clothes, books, and other products
gas stoves
house paints
insecticides, synergists, piperonal butoxide
new building materials and furnishings
off gassing of new carpets (styrene butadiene latex in flooring adhesives
and carpet backing)
pesticides and wood preservatives
second-hand tobacco smoke
toxic chemicals used in art, photography, printing, etc.
vehicle exhaust fumes

These substances contribute to indoor air pollution and are often
contaminants in our air and water. Many of the chemicals that trigger MCS
symptoms are known to be irritants or to be toxic to the nervous system.
One especially harmful group of chemicals, known as "volatile organics,"
readily evaporates into the air at room temperature. Even low airborne
levels of such contaminants can make ordinary people sick. The impact on
health of long-term, low level exposure to most chemicals found in consumer
products remains untested. The products and other chemicals that cause
problems varies among affected individuals.

Commonly reported triggers include:
anesthesia
artificial colors, flavors, and preservatives in foods, drinks, and drugs
detergents and other cleaners
electromagnetic fields
fluorescent lights
perfumes and fragrances
prescribed medications
smoke from tobacco products
solvents from dry cleaning, felt pens, etc.

When our bodies are assaulted with levels of toxic chemicals that cannot be
safely processed, many of us become ill. For some, the outcome could be
cancer or reproductive damage. Others may become hypersensitive or develop
other chronic disorders, while some people may not experience any
noticeable health effects. Even when high levels of exposure occur, only a
small percentage of people become chemically sensitive. The threshold of
toxic injury is not the same for everyone because the ability to detoxify
varies greatly from individual to individual.

Treatments
MCS can be difficult for physicians to define and diagnose. Physicians
should take a complete patient history, which includes environmental and
occupational exposures, carefully test for familial or exposure-related
tendencies like porphyria, use brain and brain function scans, and act as
diligent detectives in diagnosing this condition. After the onset of MCS, a
person's health generally continues to deteriorate. It may only begin to
improve once the chemical sensitivity condition is uncovered. While a
number of treatments may help improve the health of some patients, there is
currently no "cure." In almost all cases, avoidance of exposures must be
practiced to alleviate symptoms. No single test for MCS currently exists.

Avoiding the exposures that may trigger reactions is essential, and may
permit dramatic improvement. Yet the large number of new and untested
synthetic chemicals we encounter in our daily lives makes this extremely
difficult.

Individuals affected by MCS have created "sanctuaries" relatively free from
chemical emissions and electromagnetic fields in their homes. Because of
the serious impact of even an accidental unavoidable exposure, people often
spend as much time at home as possible and often cannot participate fully
in society. As a result, they may experience intense isolation, loss of
self-esteem, and depression from not being able to have an active work,
family, or social life. Supportive professional and peer counseling can
help if available.

MCS and the Medical Community
Many conventional allergists and other physicians claim that there is not
yet sufficient evidence that MCS "exists". Research regarding the
mechanisms that cause MCS has been inadequate, and unfortunately is often
financed by the industries, which benefit from chemical proliferation.
Generally, medical doctors have not been trained to understand or seriously
investigate conditions such as MCS. In fact, the vast majority of
physicians receive very little training (four hours or less) in
occupational and environmental medicine or in toxicology and nutrition.

Therefore, many affected individuals have to consult with a large number of
specialists. People with MCS are sometimes misdiagnosed with serious
degenerative diseases. Often, baffled doctors tell patients that their
illness is psychosomatic...in their head. And many whose health is impaired
by MCS have never heard of the condition. The lack of support from
physicians, and the stress caused by having no explanation for symptoms,
may contribute to a high level of anxiety and distress for people with MCS.

Conventional medicine offers very few medical treatments for MCS besides
avoiding offending products. Unfortunately, medications and other
conventional medical treatments offer little or no relief, and may even
prompt new sets of symptoms. Treatment with anti-depressants may mask the
underlying condition and can also cause other serious health problems.

Physicians who clearly recognize MCS include some occupational and
environmental health specialists. A wide range of new or "alternative"
treatments have been utilized by people with MCS with varying success. Some
of these treatments are experimental and may include a combination of:
nutritional programs, immunotherapy vaccines, food-allergy testing,
detoxification regimens through exercise and saunas, chelation for heavy
metals, and other healing treatments. Diagnosis may involve laboratory
tests for chemical contaminants, such as total body burden of pesticides,
or for porphyria, respiratory and brain function.

Unfortunately, these treatments and diagnostic workups are not often
reimbursed by insurance plans. Few practitioners or medical insurance
programs for people who are indigent support these alternative, yet
sometimes productive approaches. Some disabled workers have won
reimbursement for such care through Workers Compensation claims.

MCS Is Now Recognized as a Disability
Both the US Department of Housing and Urban Development (HUD) and the
Social Security Administration (SSA) have recognized MCS as a disabling
condition. People with MCS have won several Workers Compensation cases. A
recent human rights lawsuit in Pennsylvania established the right of an
affected person to safe living space in subsidized housing. Both the
Maryland State Legislature and New Jersey State Department of Health have
commissioned studies of MCS. The NJ study provides an excellent overview of
medical and legal issues related to MCS.

Just as physical barriers prevent wheelchair access, chemical use can
prevent entry and use of public facilities to those with MCS. The Americans
with Disabilities Act (ADA) protects people with disabilities from many
types of discrimination, requiring reasonable accommodation for people with
disabilities. Reasonable accommodations can enable people with MCS to enjoy
access to work, public facilities and other settings. Whether an individual
developed MCS at work or was already sensitized prior to employment, the
right to a safe workplace must be established.

Injured workers who need Workers Compensation or Social Security Disability
benefits should find a physician who can diagnose MCS and who will support
legitimate claims. Establishing clear documentation is critical in awarding
such a claim, as well as for gaining reasonable accommodation at work or
for rental housing. If your employer is discriminating, do the following:
get your condition diagnosed
if you work in a unionized workplace, consult with your union about
filing a grievance or taking legal action
seek legal counsel
join a support group

For further assistance, contact a worker health resource group or support
group in your area, as well as other organizations listed at the end of
this fact sheet. These cases can be difficult and take a long time, but can
be resolved.

Similarly, if you have been injured on the job, find an attorney
experienced with chemical exposure cases in the Workers Compensation system
or personal injury claims. You will not need to pay your attorney up front.
Your attorney receives a percentage from the settlement if you win. It
typically costs you nothing if your case is unsuccessful. To find an
attorney, consult your union or one of the organizations listed below to
obtain referrals. Select your attorney carefully. Remember, you should
trust and feel comfortable with him or her.

Accommodating Individuals with MCS in the Workplace
These are some suggested ways to accommodate individuals with MCS at work.
While not adequate in all cases, these measures will help prevent other
workers from becoming similarly disabled, and contribute to the creation of
a healthier work environment.
windows that open to permit fresh air to circulate
well ventilated space free of pollutants such as tobacco smoke,
pesticides, toxic and fragrance-laden cleaning products, deodorizers
selection of least toxic/allergenic building furnishings, flooring and
supplies
"least toxic" integrated pest management (IPM) using no sprayed or
volatile pesticides in or around buildings
pre-notification prior to painting, pesticide applications, and
renovations, with provisions for alternative work arrangements
education of co-workers, management, and other employers to avert stigma
and harassment
scheduling which permits people with MCS to work when fewer co-workers
are present, whenventilation is at its peak, or where the work environment
is least problematic
allowing the option of working at home or off site
minimizing exposure to electromagnetic fields from computers, fluorescent
light ballasts, andother equipment


MCS Is Preventable
People with MCS are a driving force for improved indoor air quality and for
the adoption of less toxic housekeeping and building maintenance practices.
Good indoor air quality and substitution of less toxic materials boost
morale and productivity. A healthy workplace lowers absenteeism and
injuries. Complaints about indoor air problems must be taken seriously by
employers, labor unions, regulatory agencies, and health care and social
service providers.


For Help and Information

National Center for Environmental Health Strategies (NCEHS)
(609) 429-5358
Mary Lamielle, Director
1100 Rural Avenue
Voorhees, NJ 08043
Provides information, referral, and advocacy. Tracks scientific,
legislative, legal, medical, and policy issues. Twice yearly newsletter,
"The Delicate Balance." Information packets.

NY Coalition for Alternative Pesticides (NYCAP)
(518) 426-8246
P.O. Box 6005
Albany, NY 12206-0005
Focuses on pesticide hazards and safer alternatives. Provides information,
referral, workshops, and advocacy "NYCAP News" is its 40 page quarterly
newsletter. Incident reporting project.

MCS Referral and Resources, Inc.
Albert Donnay
508 Westgate Rd., Baltimore, MD 21229-2343
(410) 362-6400 Voice (410) 362-6401 Fax
Initiated by Grace Ziem, MD, DPH, to assist people with MCS, physicians,
attorneys, and other professionals. Distributes articles and resources on
prevention, diagnosis, accommodation. Contact Albert Donnay online at:
donnaya@r.tk.net or visit their homepage at www.mcsrr.org.

The Environmental Health Network
(415) 541-5075
P.O. Box 1155
Larkspur, CA 94977
Newsletter, "The New Reactor", MCS advocacy and survival primer, "The Good
Old New Reactor," by Susan Molloy, is available for $8.95 plus s/h.

Chemical Injury Information Network
(406) 457-2255
Cynthia Wilson, Director
P.O. Box 301
White Sulphur Springs, MT 59645
"Our Toxic Times: monthly newsletter

Center for Safety in the Arts
(212) 227-6220
5 Beekman Street, Suite 820
New York, NY 10038
Provides information, referral, workshops, and fact sheets on art hazards,
safer substitutes and practices.

National Coalition for the Chemically Injured
(520) 536-4625
Susan Molloy, contact person in Arizona
Ste.C-501 HC-63 Box 7195
Snowflake, AZ 85937

National Office of NCCI
2400 Virginia Ave., NW
Washington, DC 10034

The Labor Institute
(212) 674-3322
853 Broadway, Room 2014
New York, NY 10012
Produced "Multiple Chemical Sensitivity: An Emerging Occupational Hazard"
(28 minute video), and "Multiple Chemical Sensitivity at Work: A Training
Workbook for Working People," (95 Pages). Order from APEX Press,
Publication Office, P.O. Box 337, Croton-on-Hudson, NY 10952. (914) 271-6500.

Human Ecology Action League (HEAL) of Southern Arizona
(520) 577-9673
6655 E. Placita Alhaja
Tucson, AZ 85715-1251

The Dispossessed Project
(520) 636-2802
Rhonda Zwillinger
P.O. Box 402
Paulden, AZ 86334-0402
Graphically depicts the plight of people injured by toxic chemical exposure
and who live with Multiple Chemical Sensitivities, through a collection of
black and white photographs and biographical anecdotes. Provides a forum
for people with MCS where they can accurately describe how they have lost
their health and dignity.

Electrical Sensitivity Network
(520) 778-4637
Lucinda Grant, Director
P.O. Box 86302
Prescott, AZ 86302
Bi-monthly "Electrical Sensitivity News".

American Academy of Environmental Medicine
(215) 862-4544
10 E. Randolph St.
New Hope, PA 18938
Professional association of environmental and occupational physicians.
Provides regional listings of member doctors.

American Indian Environmental Illness Foundation
(360) 665-3913
Terri Hansen, Director
P.O. Box 1039
Long Beach, WA 98631


Government Agencies
US Social Security Administration
Check your phone book under US Government Offices, Health and Human Services.
For general information, call 1-800-772-1213.

US Department of Housing and Urban Development (HUD)
Office of Fair Housing and Equal Opportunity
(602) 379-4461.
Request the MCS Information Packet, which includes citations and
descriptions of helpful recent legal decisions regarding safe housing.


Additional Reading

Staying Well in a Toxic World: Understanding Environmental Illness,
Multiple Chemical Sensitivities, Chemical Injuries, and Sick Building Syndrome.
By Lynn Lawson (1993)
$18.95
P.O. Box 1732
Evanston, IL 60201

Neurobiology of MCS.
An interview by Cindy Duehring with Donald Dudley, M.D., Neuroscientist and
President of the Washington Institute of Neurosciences in Gig Harbor,
Washington.
April 1996 Issue of "Our Toxic Times."
Chemical Injury Information Network
P.O. Box 301
White Sulphur Springs, MT 59645.

*** Special thanks to Susan Molloy for her assistance in the creation of
this fact sheet.
*** Portions of this fact sheet were reprinted with permission of the
Multiple Chemical Sensitivity in the Workplace Task Force, NY Coalition for
Alternatives to Pesticides, 353 Hamilton Street, Albany, NY 12210, (518)
426-8246.


For additional information on AzTAP please contact:

Arizona Technology Access Program Institute for Human Development Northern
Arizona University

FLAGSTAFF OFFICE:
Pamela Alcala, Administrative Assistant
Box 5630
Flagstaff, AZ 86011-5630

(520) 523-5879 - Voice
(520) 523-1695 - TTY
(520) 523-9127 - Fax
(800) 553-0714 - Toll Free

PHOENIX OFFICE:
Jill Oberstein, Project Director
2715 N. 3rd. Street, Suite 104
Phoenix, AZ 85004

(602) 728-9532 - Voice
(602) 728-9536 - TTY
(602) 728-9535 - Fax
(800) 477-9921 - Toll Free