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Statement before the
National Environmental Justice
Advisory Council  

Arlington, Virginia, December 11, 2000Ý

Good Evening Ladies and Gentlemen:

Thank you for the opportunity to speak with you this evening.

My name is Mary Lamielle. I am the executive director of the National Center for Environmental Health Strategies, Inc., a nonprofit, education and advocacy organization fostering the development of creative solutions to environmental health problems with a focus on chemical sensitivities and environmental disabilities.Ý

For fifteen years we've worked to keep healthy people healthy and to help those sick, injured or disabled by environmental exposures achieve a reasonable quality of life. We represent these individuals and advocate for their needs to those in government, in the medical, research and scientific communities; in the disability arena; and in hometowns across the country.

My comments will:

• provide a brief description of the dire public health crisis faced by those sick from chemical exposures, and point out the disproportionate number of people of color, the poor, and tribes subjected to significant levels of environmental pollutants that may cause multiple chemical sensitivities (MCS) and trigger debilitating symptoms on a daily basis;

   

• commend the NEJAC for its initiative in presenting the MCS resolution to EPA. This resolution is generally consistent with our agenda and goals. I should add, however, that we do not support the Draft Interagency report and continue to recommend its withdrawal as we have done for over two years.

  We challenge EPA's unnecessary rejection of the entire resolution based on the dated, erroneous, information in the Draft Interagency Report on MCS. EPA relied on a document that sustains an anti-MCS agenda and further stigmatizes those disabled by this disorder. EPA chose to punt, again.

   

• recommend that the NEJAC sponsor an educational forum on MCS for the FACA and other agency personnel as feasible. We also recommend that a representative from the MCS community be nominated to serve on the NEJAC. A list of additional recommendations for NEJAC action and support appear later in this paper.

   

Several years ago I was invited to assist a nurse who ran a support group for children and young adults with asthma in Camden, New Jersey. I was told that the children's reactions included a wide range of neurological and respiratory symptoms, not solely a traditional asthmatic response. These reactions were being triggered by many exposures including formaldehyde in their desks, gas stoves, kerosene heaters, cleaning products, and pesticides.

Camden is an impoverished city across the Delaware River from Philadelphia. The entire area is variously engulfed in fumes from refineries, chemical companies, an odorous sewage treatment plant, and a trash to steam plant, as well as auto and diesel exhaust. Whether it's Camden or Newark in the "chemical state" of New Jersey, or superfund sites in Louisiana, farm workers in California, or Native American tribes in the southwest, as a population the poor, people of color, tribes, and women in general, are more likely to live in contaminated communities without the power to seek a remedy or the financial resources to get out.

A series of government and university-based studies have surveyed populations for frequency of chemical sensitivities and multiple chemical sensitivities, the more severe and disabling form of this condition. Random population-based studies done by the California Department of Health found that 16% of the population were unusually sensitive to chemicals while 4-6.3% suffered from MCS or were diagnosed with MCS or Environmental Illness, EI. Studies of Rural North Carolinians by Dr. William Meggs revealed similar percentages. The North Carolina study also found that the percentage of women to men with chemical sensitivities was 38.8% women to 23.5% men. Native Americans in New Mexico reported a 27% likelihood of chemical sensitivities.

NEJAC members are aware that MCS is recognized by a number of federal agencies including the Social Security Administration in its Program Operations Manual, February 1998; by a policy adopted by the Department of Housing and Urban Development in 1991 and a Legal Memorandum issued by the agency in April 1992; and in the Americans with Disabilities Act (ADA) with coverage under the Department of Justice. While the Equal Employment Opportunity Commission has not litigated Ýan MCS case, there are nearly one hundred settlements, a number of which include monetary awards.

Furthermore, the U.S. Architectural and Transportation Barriers Compliance Board adopted a fragrance free policy for board meetings and meeting spaces in July 2000. The Access Board has also committed one-quarter of its budget for 2001 toward research on Indoor Air Quality and chemical sensitivity/access issues. The agency intends to do some of its work modeled on EPA's Indoor Air strategic plan. The agency also intends to hire an environmental engineer the following year to enhance its work on environmental access issues.

EPA's Office of Pesticide Programs has also been involved with MCS issues. I served on an EPA Lawn Care Pesticides Advisory Committee in 1992 and currently serve on an Inerts Disclosure Stakeholder Workgroup. These activities as well as others in the pesticide area reflect some Ýeffort to include sensitive populations in this dynamic.

Recommendations for NEJAC Action or Support:

• Establish a disease registry for MCS.Ý

  NOTE: In 1991 NCEHS secured the first directed Congressional funds for research on MCS. The recommendation for research was to establish an MCS registry and to work toward development and funding for an environmental medical unit (EMU), a hospital- based research tool used to answer the hypothesis: "Are people sick from low level chemical exposures?"

  ATSDR, the recipient of the directed funds, convened an expert panel in April 1993 to define a research direction. While an EMU was the primary research recommendation, funds were not available.Ý

  At the same meeting, I recommended that an interagency work group, including disability agencies and any other agency with activity or experience with MCS, be convened to review the current status of MCS among federal agencies. The resulting Draft Interagency Report published five years later, plus two more years, 1998-2000, for the review of public comments, is remarkable for its failure to resemble the 1993 recommendation.

   

• Support efforts to make MCS a reportable condition.

   

• Study the incidence and prevalence of MCS in minority and low-income populations.

   

• Examine the possible study of MCS in the context of the human genome, toxicology research designed to identify new and unknown toxicants by comparing the genetic footprints left by toxicants.

   

The QEESI, Quick Environmental Exposure Sensitivity Inventory, developed by Dr. Claudia Miller, University of Texas Health Science Center, Department of Family Practice, San Antonio, Texas. Dr. Miller is currently on sabbatical at the National Institute of Environmental Health Sciences, Research Triangle Park, North Carolina.

Include one or more questions in the National Health Interview Survey, National Center for Health Statistics, Division of Health Interview Statistics, Hyattsville, Maryland.

Include one or more questions in the National Behavioral Risk Factor Surveillance Survey, Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia.

Examine MCS in the context of ATSDR's evaluation and clean up of Superfund Sites and in the context of registries of hazardous chemicals identified at superfund sites.

Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention, Atlanta, Georgia.

Examine MCS in the context of NIEHS studies of chemical mixtures.

Additional Recommendations for Action or Support:

• Educate government agencies and the public.Ý

  [I've given dozens of presentations for federal agencies or at meetings sponsored by these agencies including HUD, the Department of Justice, Department of Agriculture, the U.S. Architectural and Transportation Barriers Compliance Board, the President's Committee on Employment of People with Disabilities, the EEOC, and many others. More needs to be done.]

   

• Support research opportunities, but keep in mind that peer review panels have been a roadblock to new issues and new investigations.

  [A recently approved NIEHS grant sponsors a conference at the EOSHI, Robert Wood Johnson Medical School in New Jersey which includes experts on behavioral response and somatization and is in part funded by industry including Exxon-Mobil.]

   

• Support housing accommodations for those with MCS, and the construction of least toxic, Section 811, segregated housing for those with MCS in minority and low- income communities as well as in the general population. This housing allows those sick from chemical exposures to live separate from others who might engage in behaviors and practices such as smoking or pesticide use that are not tolerated by sensitive populations.

   

Mary Lamielle, Executive Director
National Center for Environmental Health Strategies, Inc.
1100 Rural Avenue
Voorhees, New Jersey 08043
(856) 429-5358
marylamielle@ncehs.org

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