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"This report doesn't reflect your 'concern'."

Dec. 15, 1998

Ms. Alice Knox
ATSDR Information Center
1600 Clifton Road,
Mail Stop E57
Atlanta, GA 30333

Re: A Report on Multiple Chemical Sensitivity (MCS) Predecisional Draft August 24, 1998

Dear Ms. Knox and Associates of the Interagency Workgroup:

Thank you for the copy of the Predecisional Draft - Multiple Chemical Sensitivity (MCS) Report that you worked on since 1995. I would have appreciated more time to get the word out about its very existence, as well as had the time to adequately respond myself. However, Dec. 15th is upon us, and as I've yet to learn of an extension, following is my attempt to comply with -- for me -- a very unrealistic due date.

Since 1943 -- age 5 -- I have lived with "chemical-induced asthma," due to a chemical pall that settled over south St. Louis, Missouri. I was adversely affected from time to time by chemicals throughout my life in St. Louis, but I quickly learned coping skills that carried me well through life. It wasn't until rather recently that the medical industry diagnosed that life-long illness. I have been blessed with a high pain threshold, but also with an innate sense of knowing my body, which led me to have all three of our children by natural childbirth, and nurse them. Additionally, I have limited my intake of antibiotics, shots, Novocain, artificial hormones and such. I feel this helped keep my intake of drugs and unnecessary chemicals to a minimum, and perhaps explains why I manage as well as I do today.

I have had MCS since April 1991. I know MCS. I protect myself with a respirator and prescribed oxygen as needed. The respirator helps me avoid prolonged chemical exposures and the oxygen helps me recover from that first "hit." (I can see tobacco smoke and therefore avoid it -- I cannot see fragrance and pesticide chemicals to know to avoid them!) Also, I learned very early on not to add drugs to my already chemically- taxed body -- prescribed asthma inhalers took some nasty tolls upon my health. I have come to rely on alternative therapies: Chiropractic and Acupuncture. I feel I am remarkably healthy, as long as I'm not breathing in toxins. Of course, in this world of tens of thousands of pesticides and fragrance chemicals, that becomes next to impossible, hence I always have my respirator and oxygen tank with me.

In your Foreword, you've written that the Interagency Workgroup was formed, "[i]n 1995, because of concern for the health and well-being of persons with symptoms of MCS, and because MCS presents challenging policy issues . . ." This report doesn't reflect your "concern."

Instead, the report seems to lend support to the chemical industry and the mainstream medical industry. We do not need more studies. That will be another 50 years in the making. Time is of the essence. Also, this report does little or nothing to help develop policies that will lead to government agencies assuming the responsibilities they've been charged with to protect public health. As it now stands, for example, the Environmental Protection Agency (EPA) deals with indoor air pollution issues. The Food and Drug Administration (FDA) is supposed to have control over the cosmetic industry, but it, by its own admission, does not. Neither agency has guiding policies to control the output of the chemical industry, let alone have the time and wherewithal to do all the necessary testing of the products. And the way the chemical industry turns out its products, the poor staff of the government agencies cannot possibly adequately test them before they are released. The mission to protect the health of the public cannot possibly be met.

The fragrance industry is protected by trade secret laws, so we cannot learn what combinations of petrochemicals they use -- sometimes in the hundreds -- to make their synthetic fragrances and flavors. The pesticide industry does not have to reveal the "inert" ingredients. People react adversely to "inert" ingredients -- which can be carcinogenic! -- and yet are not informed about those chemicals. We need truth in labeling. The public's right-to-know must be respected, honored and protected.

To improve indoor air pollution, we need guidelines to develop fragrance-free work and public places; we need to implement policies for the reduction of pesticides in the workplace and other public places; we must establish scheduling policies so that work that will necessarily result in major outgassing -- such as roofing sealant being applied -- is to be done outside core working hours.

From what I've been able to ascertain, there is little in this report to help turn the tide away from a burgeoning public health crisis (and in this, I am including cancers, increased asthma and asthma deaths, Alzheimer's, Parkinson's, etc.). There have been more than enough years of study. We need action. Had the chemical industry "observed stringent quality assurance of all tests" -- now that's a laugh . . . had they even been required to test! -- as is proposed for "MCS-related clinical research," I'd venture to say, I would not now be living with MCS!

For those of us having to live -- and work -- with MCS, this report, as it now reads, is useless. We cannot use it as an educational tool to help staff of government agencies, schools, health care facilities, workplaces, banks, courts . . . understand why we need accommodation. We certainly cannot use it to educate our formerly favorite restaurants and theaters. Nor can we have our families, friends, co-workers, neighbors learn about MCS and how to accommodate -- or better yet, avoid getting it.

The people we must deal with would be far more willing to accommodate, if they weren't misled to believe that those of us living with MCS are psychosomatic, indolent, malingering, somatizing, chronic complainers. As it is, you've just given them license to continue business as usual. You have tried to stultify us.

I recommend you go back to the drawing boards, incorporate the works of all of the MCS experts you failed to involve, as well as all the governing agencies that deal with MCS and should have been part of this Workgroup in the first place. To move this document forward as is, may well lead to a burgeoning healthcare and well-being problem -- not only for the United States, but worldwide.

Contact people such as Cindy Duehring, Cynthia Wilson, and Julius and Rosalind Anderson of Anderson Laboratories -- all of whom have already been suggested. I further suggest that you identify the work or words of people such as doctors Ronald Gotts and Abba Terr as those of people reflecting the chemical and/or insurance industry bias. It is unfair to print a report -- ostensibly written out of "concern for the health and well-being of persons with symptoms of MCS" -- and not identify all the key players and their nuances.

I have worked the past seven and a half years with MCS -- for a government agency. The same agency for which I worked for a total of 23 years. As my condition worsened -- in large part due to their "business as usual" practices -- they worked with fervent verve to oust me. Had they tried to improve air quality for all, while accommodating my disability, they would have had to use less time and energy -- and it probably would have been more cost effective in the long run. And, I would still be gainfully employed.

Employers use air quality tests against employees who have MCS or other respiratory problems. Those useless tests -- see the EPA's report -- are just "snapshots" taken on the best of "bad air" days. I know. It happened to me. What a travesty. They took a surprise test (to me) for a couple of hours, with instruments that only measured parts per billion and they scheduled it just before their monthly pesticide applications and their oft-repeated wall painting. For all I know, they secretly asked the fragrance-wearers to go light that day, as even the normal amount of fragrances weren't hanging as heavily in the air -- I know because I did not have to wear my mask in my room despite the fact that the doors to my office were open.

I also understand what it is like to have to help a co-worker think his way through closing out his computer, so he could escape a building inundated with roofing sealant. He experienced "brain fog." He found it very disconcerting. He knew he knew the steps he had to take, he just couldn't do any of them without coaching from me. I was able to protect myself after the initial exposure because I had my respirator and my oxygen. As instructed in the use of oxygen by airliners, I first protected my health and then helped him. Because I was his supervisor, I made him leave the building with me. We were the only two who did not "tough it out." We were the only two intelligent ones, for my money. He spent the weekend ill. I went to my chiropractor and left my killer headache in his office.

And I know what it is like to be ostracized to an office far more toxic than any others -- and two floors away from my co-workers. The alternatives given me were an unventilated storage closet back on the third floor or the street. That act of ostracizing me, taught my co-workers not to breathe a word of complaint when management used high contact adhesives on a cabinet project during core work hours. Staff certainly complained to me, however.

My former management refused to move to Integrated Pest Management practices; has refused to use fragrance-free products, it has done roofing work twice in one week, gassing the building with those toxic fumes; and it paints, seemingly constantly, including using the kind with high-emitting VOCs (volatile organic compounds) with gay abandon. They would not request people attend work and meetings fragrance-free, and they refused to put up signs alerting people to odorivecting projects, such as freshly waxed floors or freshly painted bathrooms.

Among many ploys commonly used by employers, I was first stripped of supervisory capacity and then this past year, my supervisor downgraded my performance evaluation -- without a warning -- from the outstanding reviews I had received year in and year out. It was a totally bogus report, easily documented by me, so I refused to sign it.

I also know what it is like to be diagnosed with a tumor, which developed this past year. Happily, it turned out to be a common, benign type, not the ovarian mass first identified. I refused surgery as a first resort, opting for CA 125 tests and an additional sonogram before risking surgery and more chemicals. I lucked out. Ten or so of my co-workers are not so fortunate. Out of 100 employees, they mark the ones who have been treated for cancer -- including one who has died from it. Of course, the lines about life-styles and heredity are quickly bandied about. The cancers are just one aspect of ill health. There are reproductive problems, migraines, chronically sore throats, sinus problems, repeated cases of pneumonia . . . It's treated as just the cost of working. However, I think these serious cases of illness could be prevented by more responsible management practices.

It is my tumor that showed me the way to retirement -- my temperament would have had me remain in the workplace. I am fortunate as I can draw a retirement stipend, but that also makes me a lost statistic of those forced from gainful employment because of their MCS. My employer certainly tried every trick in the book to "encourage" me to leave, so despite retirement, I have as surely been forced from my workplace as have all the younger chemically injured people been forced from their workplaces. Unfortunately, they have to run the gamut of the Workers' Compensation program -- and are denied benefits because they are afflicted with MCS. Then begins their struggles in seeking funds through Social Security. Many wind up homeless. Some dead. Much too costly economically, and more importantly, terribly costly in terms of human tragedy.

This report has done nothing to alleviate the MCS situation. Our ill health is a sad commentary on the chemical industry's self-serving half-truths. We are proof positive that life with chemicals can have a decidedly adverse -- devastating and costly -- effect on human health and well-being, family structure and the economy.

It is past time for a change. I believe we should start with rewriting this Predecisional Draft.

Thank you for your time and the opportunity given me to comment.


Barbara Wilkie
(My convention is prevention)

President Clinton, president@whitehouse.gov
Vice President Gore, vice.president@whitehouse.gov
First Lady Clinton, first.lady@whitehouse.gov
Mrs. Gore, mrs.gore@whitehouse.gov
Sen. Boxer, CA, Senator@Boxer.senate.gov
Sen. Feinstein, CA, senator@feinstein.senate.gov
Governor-elect Gray Davis, CA, gdavis@gray-davis.com
Rep. Barbara Lee, Berkeley, CA Barbara.Lee@mail.house.gov
Rep. Pelosi, SF, CA, sf.nancy@mail.house.gov
U.S. Department of Health and Human Services Secretary, hhsmail@os.dhhs.gov

Back to ATSDR Letter Index

EHN's letter to ATSDR, written by President, Amy Marsh

ATSDR - MCS Report Info (http://www.ehnca.org/www/atsdr/atsdrmcs.htm)

EHN's Act Now!

EHN's MCS Report: How do I respond?

Running out of time? E-mail: Dr. Lester Smith, the Workgroup's executive secretary, at: <lxs2@cdc.gov>.

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