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NATIONAL CENTER FOR EM%rIRORMERTAL HEALTH STRATEGIES 1100 Rural Av~n~ Voorhees, New Jersey 08043 ( 609 )429-5358 STATEMENT OF THE NATIONAL CENTER FOR ENVIRONMENTAL HEALTH STRATEGIES Mary Lamielle, Director PRESENTED BY Earon S. Davis, J.D., M.P.H. SUBCOMMITTEE ON HEALTH AND THE ENVIRONMENT U.S. HOUSE 0F REPRESENTATIVES April i0, 1991 7~92~222

Mr. Chairman and distinguished members of the subcomittee. My name is Earon Davis. I am an envlronm~ntal health consultant located in Evanston, Illlnois, with training in public health and law. I am here representing Mary Lamlelle, Director of the National Center for Environmental Health Strategies (NCEHS). Mary is unable to be here today because she must restrict daily activities includlng attendance at public meetings such as this one because of severe reactions %o chemicals typically found in indoor environments. The National Center for Environmental Health Strategies provides informational, educational, research, advocacy and support services on chemical sensitivity and other environmental and public ~ealth is- sues. We encourage the development and implementation of programs, products, policies and strategies to assist chemical victims and protect public health. NCEHS tracks the latest scientific, research, legislative, regulatory, medical, legal, disability and policy issues" in this emerging public health area and chronicles these developments in its publication "The Delicate Balance." We are here today to help focus your attention on health effects caused by indoor pollution and to provide recommendations for a federal response to this national problem. The task before this committee is an urgent one. Indoor pollutants pose a significant public health hazard to all Americans. We call on you for prompt action to safe- guard the American public from indoor pollution hazards. A coherent, meaningful federal response to indoor pollution de- pends upon strong, creative legislation focused specifically on in- door air. Although it may be true that statutory authority exists to address the risks associated with indoor air problems, such an approach would yield a fragmented program which would fail to respond to the seriousness of this issue. A legislative response, an "Indoor Air Quality Act," must mandate intense efforts toward research and educational services. However, it must also incorporate health-based regulatory policies within the "1"10092-0223

U.S. Envlronmental Protection Agency and other federal agencies as appropriate. We commend EPA's Indoor Air Division for substantial progress during this past year. Projects nearing completion including two guidance manuals for public and commercial buildings; a manual for preventing indoor air problems in new home construction; and a model indoor air management plan for school districts are ali desperately needed, and we anxiously await their completion and publlcation. We hope that these documents will begin to address the complex array of indoor air problems and the health concerns of the public. We also applaud the division for funding the successful'workshop on multiple chemical sensitivity convened by the National Academy of Sciences in March 1991. Nevertheless, we need a legislative mandate to ensure that interest will not wane; that politics and economic interests will not interfere; and that funds will continue to be available for research, educational, and regulatory programs. It is equally impor- tant that the approach to indoor environments be a broad-based federal initiative, coordinated but not dominated by one agency. NCEHS testified before the Superfund, Ocean and Water Protection Subcommittee chaired by Senator Frank R. Lautenberg on May 5, 1989, on the needs of sensitive and high risk populations. Chemical sensitivity has achieved much greater visibility since that time, but very little has happened to assist those affected. At NCEHS we are aware of the increasing numbers of people who have joined the ranks of the chemical- ly sensitive. We received over five hundred ne~ contacts a month from ~£~ ~[~U~IS ~ur[ng £~{s pas£ year. We rece{ved nearly f~ve hundred letters during the wee~ following a brief appearance on the TODAY show alone. NCEHS director Mary Lamielle has personally spoken with well over a thousand people. Calls and letters from the environ- mentally disabled can be overwhelming. Despite the urgency, very little progress has been made in clean- ing up indoor spaces which are making people sick. Very little 2 TI0092-0224

progress has been made in making indoor areas safe and accessible for those disabled by chemical sensitivity. These imperatives demand that Congress take swift and decisive action in formulating a comprehensive indoor air program to protect our society and to provide a reasonable quality of life for those already damaged by indoor pollutants. In July 1987, the Board on Environmental Studies and Toxicology at the National Academy of Sciences held a workshop to examine indoor pollution and chemical sensitivity. Experts at this workshop issued a now famous, off-the-cuff estimate that "approximately 15 percent of the U.S. population have an increased allergic sensitivity to chemicals commonly found in household products, such as detergents, solvents, pesticides, metals and rubber, thus placing them at increased risk to disease." The consensus from the meeting--further research is needed to examine the extent of this public health problem and the role that indoor pollutants, particularly from consumer products, play in promot- ing chemical sensitivity. 3 years, 8 months later, the National Academy of Sciences held a second, well-attended and very successful workshop on multiple chemical sensitivity. It may take more than our wishes for this second meeting to suffer a better fate than the first. We may be lucky that it took only 3 years, 8 months to hold a second meeting given the obstacles to investigation and action on chemical sensitivity from the medical community, industry and insurance companies among others. The time frame would likely have been much longer were it not for Chemical Sensitivity: A Report to the New Jersey State Department of Health, commissioned and issued by the state health department and authored by Nicholas A. ~shford, Ph.D., J.D., Associate Professor of Technology and Policy at the Massachusetts Institute of Technology, and Claudia S. M~ller, M.D., M.S., of the University of Texas Health Science Center. The study makes two dozen recommendations for acbion to provide assistance to patient popula- tions and to increase understanding of chemical sensitivity. In addition to a lengthy list of recommendations for a registry; informa- T10092.-0225

tional programs; clinical and health care services; access to health and disability insurance and worker's compensation~ and employw~nt opportunities, it also calls for workplace accommodations~ suitable housing and half-way houses; and protective regulatory policies Includ- ing the concept of "environmentally acceptable areas" so that those who are sensitive to environmental contaminants can achieve greater participation in society. For its efforts in commissioning the Ashford and Miller study, the New Jersey Department of Health received the World Health Organiza- tion's Macedo Award in recognition of outstanding leadership in ad- dressing this publ~c health concern. The study itself has created a national momentum. In many ways it has made chemical sensitivity a more credible phenomenon. The report has influenced legal and policy decisions. One ma~or goal of the study was to mitigate the cross-fire within the medical community. However, from the responses to date, the additional credibility has also given rise to increased opposition from those who are hostile to recognition of the illness. For example, in its briefing paper on chemical sensitivity, the Chemical Manufacturer's Association has taken the position that multiple chemical sensitivity is a psychiatric problem. The CMA statement indicates that "~heprimary impact on society would be the huge cost associated with the legit- imization of environmental illness." CMA has encouraged the forma- tion of a coalition of manufacturers of pesticides, soaps and deter- gents; medical associations; insurance companies; the aerospace indus- try; automobile manufacturers; the chamber of commerce and others who have "an interest in placing environmental illness in its proper perspective." At the National Academy of Sciences workshop, March 20-21, 1991, there was a clear consensus among the nearly 50 attendees that research needs to proceed in this area. Priorities include the development of an environmental control unit and studies of the adaptation-de-adapta- tion hypothesis. The NAS workshop is a clear statement that there is no proof to substantiate claims that MCS is psychogenic. 4 7M~92~22~

We don't want to wait another 3 ~ears, 8 months to act on the recommendations of this NAS workshop. We can't afford to delay ad- dressing this pressing problem. The politics and economics are too powerful to expect substantial funding unless Congress demands it. We need that funding commitment now. Indoor air legislation must mandatea comprehensive research program to address chemical sensitivity. As part of this approach, the legislation should: Require EPA to issue a REPORT TO CONGRESS ON CHEMICAL SENSITIVITY. (Please see Attachment A for a detailed description.) Require the development of a government-wide registry of chemical sensitivity complaints. This registry will include complaints by consumers, the public, employees, and others regarding alleged chemical sensitivities and multiple chemical sensitivities. It shall be cross- referenced by type and name of product or other exposure source, zip code area, chemical and trade name of any known or suspected substances involved, and by severity of symptoms. This registry will cover pesticide prod- ucts, building materials, furnishings, consumer prod- ucts, personal care products, perfumes, combustion prod- ucts from appliances, and other sources of concern. Require an investigation of possible medical abuses of people with chemical sensitivities and multiple chemical sensitivities, either through human experimentation by p~trported "deprogrammers" or other unproven psychologi- cal or psychoanalytic theories. There have been reports of suicides among totally disabled MCS patients who have been denied even subsistence resources due to medical 5 T10092-0227

evaluators who claim that MCS does n~k exist. There is also at least one report of a death related 50 a pilot who was sen~ back ~o work in spi~e of severe chemical sensitivities ~hich had previously caused him to fall asleep while piloting his plane. ("BAD CHEMISTRY," KQED, San Francisco) Require an investigation of the role of industry, organ- ized medicine, insurance companies and government agencies in the delays in recognizing and funding research on MCS. When NCEHS testified before the Superfund, Ocean and Water Protection Subcommittee in 1989, we spoke of the tens of thousands of people who are so debilitated by chemical sensitivity disorders that they have had to make major lifestyle changes to cope with the illness. These are just the tip of the iceberg. There are hundreds of thousands, perhaps millions more--the walking wounded--people trudging along, try- ing to get by from day to day, having great difficulty at work, at home, or during other activities. Many are unaware that their chronic complaints are either caused or exacerbated by their own surroundings. From classrooms in North Dakota ~o metropolitan hospitals, from Fortune 500 companies to EPA Headquarters, and in private residences across America, people are becoming ill from the complex array of chemicals in building materials, furnishings, and consumer products. Some people with chemical sensitivity become ill from a specific contaminant in the indoor environment--from particle board, or new ~rp~ing and ~dhesiYes, or home insul~ti0n, or termite treatments. Many others have chronic exposures, a slow and subtle poisoning. Regardless of the tr~ggerlng contaminant(s), Mnown or unknown, most indoor environments are a nightmare for those who have chemical sensitivity disorders. Individuals with this illness suffer from a w~de range of mild to 6

llfe-threatening symptoms from everyday chemical exposures. Pesticides, particle board, plastics, adhesives, carpeting, dry cleaning chemicals, paint, varnish, ~tergents, cleaning products, moth balls, room deodorize~ _/hobacco s~, fragrances and fragranced products are some of the m~~items which can cause debilitating reac- tions. Symptoms from chemical sensitivity disorders include multiple complaints such as fatigue, confusion, memory loss, headache, migraine, seizures, and other neurological difficulties; respiratory involvement with bronchitis, asthma, and difficulty breathing; muscle and joint pain and weakness; gastrointestinal problems such as food intolerances, nausea, and indigestion; hives, rashes, eczema and flushing; and cardiovascular complaints such as vasculitis, hyper- tension, and irregular or rapid pulse. Many individuals have allergic rhinitis, sinusitis, dizziness, vertigo and visual disturbances. The current levels of pollutants in typical indoor environments explain in part the difficulty that those with chemical sensitivity disorders have in accessing public buildings and the difficulty many have in coping with contaminants in their own home. Many chemical victims must use activated charcoal filters or masks, respirators, or oxygen to minimize exposure to indoor contaminants. Indoor pollutants have produced a population of ENVIRONMENTAL REFUGEES--people forced to live nomadic lifestyles, a few in special- ly built trailers or homes, but most in stripped down mobile homes, or in old cars, or vans, or tents or sheds--isolated from interaction with society and unable to earn a living or obtain many of the basic necessities of life. However, the majority of people with chemical sensitivity struggle to survive within society, living lives of INTERNAL EXILE, living life UNDER HOUSE ARREST. They don't want to be isolated from society, they just want to be healthy. They struggle against great odds to llve a "normal" lifestyle. They struggle to stay employed-- 7 TI0092-0229

frequently an impossibility; to find suitable housing and furnish- ings; to discover acceptable consumer products; to keep families together and to maintain friendships; to participate in the community. These are usually difficult, frequently impossible. They live in a . society incompatible with their basic needs and rights. Those sensi- tive to chemical and environmental pollutants are an ever-growing population--they may be your neighbors, your friends, perhaps yourself. Avoidance of indoor pollutants is critical for the chemically sensitive. Continued exposure for those who are now only mildly sensitive may contribute to greater and greater levels of disability. Chemical sensitivity may be a preventable disability. Reduction of indoor contaminants through the use of less toxic products; integrated pest management; bans on smoking and on the use of deodorizers and fragranced products; increased ventilation and similar policies will make public places accessible for the sensitive and more healthful for everyone. Americans have a right to healthful indoor air. Yet, they find themselves innocent victims of the proliferation of toxic, pollution- emitting consumer products and inadequate building design and manage- ment. Information for consumers is inadequate; government regulations are generally absent or not enforced; and the scientific component is in its infancy. The public is starved for information and guidance on indoor air ~ssues. The calls and letters we receive at NCEHS reflect the over- whelming concerns of the public--concerns over mercury in paint; "safe" c~rpe~ng~ pesticide exposures; and on and on. People want desperately to keep their family out of harm's way, but they have limited access to information they can trust to help them evaluate the risks involved. And, the message may be very contradictory. Tobacco smoke is a major indoor pollutant, perhaps the major indoor pollutant given its TIOOS2-0230

known health effects. Yet, the government has failed to ban smoking in publlc places. Similarly, She National Academy of Sciences Indl- cated in 1981 that "fewer than 20% but perhaps more than 10% of the general population may be susceptible to formaldehyde and may react acutely at any concentration." (NAS, Indoor Pollutants) Yet, formal- dehyde is a ubiquitous pollutant which is regulated only at levels established by HUD for plywood and by OSHA for the industrial work- place. These levels are sufficient to adversely effect large segments of society. Formaldehyde is a polar chemical. Scientists have developed special testing methods to detect and measure its presence. For thousands of other polar chemicals, however, e.g. alcohols, aldehydes, terpenes and esters, neither industry nor government has the technol- ogy to measure or confirm their presence. Even industry can't tell us with absolute certainty the name and concentration of all chemicals in new carpeting or a fragrance. Thus, under the current EPA focus on total volatile organic compounds (total VOCs) for product label- ing, we may be providing consumers information which may lack mean- ing or be misleading. A new carpet with lower total VOCs may actu- ally emit one or more highly toxic pollutants which would not be shown in such a labeling system. We therefore recommend that indoor air legislation mandate fund- ing of a major research initiative on the part of EPA's Research and Development group to develop the technology to measure polar chemicals. This effort should be conducted in conjunction with an ultimate goal of a national and meaningful product labeling system. Fund a major research initiative to establish a method for detecting, testing, and quantifying the presence of polar chemical substances. TI0092-0231