Sunday, February 18, 2007

MCS, Ad Nauseum

I have previously posted about Multiple Chemical Sensitivity (MCS) and my struggles with its implications for my daily life. Luckily, as our symptoms worsen, Mary and I are both seeing an MD in our area whose practice specializes in the treatment of MCS, even as the American Medical Association still refuses to recognize MCS as a true physical illness. MCS America, an advocacy organization, has petitioned the AMA, CDC, WHO, and other powerful bodies to finally recognize MCS as a physical illness, opening doors for research dollars, insurance reimbursement for treatment, and all of the benefits the sufferers of a certified illness receive. I am joining that political battle, and attach here a letter which I have drafted to the AMA which will also be cc'd to the WHO, CDC, and National Institute of Environmental Health Sciences (NIEHS). If anyone reading this post is moved to draft a letter or make a call themselves, I also attach names and addresses of key figurres and organzations below.

Thanks for taking some time to learn about this issue close to my heart (and health).


Dr. William G. Plested, III, MD, President
Board of Trustees
American Medical Association
515 N. State Street
Chicago, IL 60610


Dear Dr. Plested,

I am writing in regards to the petition which you have received from MCS America vis-à-vis the recognition of Multiple Chemical Sensitivity (MCS) as a physical condition.


As a registered nurse living with Multiple Chemical Senstivity, I am aware that the American Medical Association has yet to accept MCS as a viable physical diagnosis on the grounds that there is no known etiology and a paucity of replicable research. We are aware that Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, and Autism are all accepted diagnoses also lacking in known etiology, yet the Americans who suffer from these conditions benefit from research funding and reimbursible care under insurance coverage due to their official status as diseases. Thousands of individuals suffer from life-challenging symptoms due to exposure to various environmental chemicals and toxins, yet these individuals’ conditions are relegated to “psychogenic” second-class citizenship, thus deprived of care for their symptoms under most insurance coverage.


You may be aware that 32 states have now recognized Multiple Chemical Sensitivity/Toxic Injury Awareness Month by state proclamation, and ICD-10 codes have now been developed vis-à-vis symptoms related to toxin exposure and its symptomatology. While the Americans with Disabilities Act does allow for reasonable accomodations for individuals with MCS in the workplace, Medicare and Medicaid will not reimburse for any treatments prescribed for diagnostic tests or symptom control, leaving thousands of Americans paying out of pocket for medical expenses related to MCS. Accepted only as a psychogenic disease, there has still been no empiric study which documents the effectiveness of psychotherapy for remission of MCS-related symptoms, although individuals with MCS do find counseling helpful in terms of the resultant social isolation and loss of productivity which results from the often debilitating symptoms.



New diseases are frequently discovered, classified, and subsequently codified so that the medical, insurance and research communities can then study, treat, and determine the cause of the newly identified disorder. In the late 20th century, both Fibromyalgia and Chronic Fatigue Syndrome were looked upon as psychogenic disorders with no apparent cause. Now, through recognition and acceptance, fully reimbursable medical treatments are available, and research has continued in order to discover the etiology of these evasive conditions which affect thousands, if not millions, of Americans. Autism, for which no known etiology has been found to date, also receives millions of dollars of research funding each year in order to advance the understanding of a disease with wide distribution among the country’s population. And I am sure that I need not remind you that addiction and obesity are also now accepted as diseases rather than personal failings, acceptance of which has also exponentially increased availability of research funds and medical treatment reimbursable by insurance.


The fragrance and chemical industry is one of the most unregulated industries in our country today. Trade secrets are jealously guarded, and American children and adults are unknowingly exposed on a daily basis to countless chemicals with known neurological effects. It is no wonder that thousands of Americans have developed sensitivities and reactive symptoms to many of these compounds which permeate our air, water, household products, and food chain.


Please examine this issue closely, and you will see that there is no reason why Multiple Chemical Sensitivity should not be recognized as a viable physical/medical diagnosis. I implore you to support the many Americans lacking healthcare coverage for such debilitating symptoms, and recognize MCS for what it is: a chronic, often debilitating disease of unknown etiology deserving of empirical research, diagnostic testing, and compassionate treatment and symptom management from the medical and insurance communities.


Thank you for your time and consideration.


_______________________________________________________________



For those of you moved to take action:

Sample Script:

"Hi, my name is __________________and I'm calling in regards to the petition you recently received from MCS America. I wanted to voice my support for MCS recognition as a physical condition and ask what your plans are to accommodated this request."


Contact Information:


Dr. William G. Plested, III, MD, President

Board of Trustees
American Medical Association

515 N. State Street
Chicago, IL 60610
312-464-5000

800-621-8335


Dr. Julie Louise Gerberding, M.D., M.P.H., Director

Centers for Disease Control and Prevention

1600 Clifton Road

Atlanta, GA 30333

1-404-639-7000

1-800-311-3435

http://www.cdc.gov/netinfo.htm


Donald E. Shriber, JD, MPH, Director, CDC Washington

CDC Washington

200 Independence Avenue, SW, Room 746G

Washington, DC 20201

Phone: 202-690-8598
Fax: 202-690-7519


David A. Schwartz, M.D., Director

National Institute of Environmental Health Sciences

P.O. Box 12233, Research Triangle Park

NC 27709-2233
Phone: 1-919-541-3201
FAX: 1-919-541-2260

webcenter@niehs.nih.gov


Dr. Margaret Chan, Director-General

WHO Liaison Office in Washington

1889 F Street, N.W., Room 369
Washington, D.C. 20006
United States of America
Telephone: 1-202-974-3299
Facsimile: 1-202-974-3789

World Headquarters Office
Avenue Appia 20
1211 Geneva 27
Switzerland
Telephone: (+ 41 22) 791 21 11
Facsimile (fax): (+ 41 22) 791 3111

info@who.int


Daniel Epstein (Washington D.C., USA)
WHO Regional Office for the Americas
1-202-974-3459
epsteind@paho.org


Thank You!

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