MEETING COMMUNITY NEEDS: LESSONS LEARNED FROM HEALTH STUDIES CONDUCTED IN WOBURN, MA By Gretchen P. Latowsky Woburn, Massachusetts is located 13 miles northwest of Boston at the junction of Interstates 93 and 95. It is a suburban community with a middle to lower-middle class population of 35,000. Because the Aberjona River flows through the community, providing an abundance of water, it has had an industrial history that flourished during the Industrial Revolution, again during the years following World War II, and continues into the present. In 1979 Woburn came to national attention when two municipal drinking water wells, Wells G & H, were closed due to volatile organic chemical contamination, the Industriplex hazardous waste site was identified by the EPA as one of the largest hazardous waste sites in the country, and residents of Woburn identified a cluster of childhood leukemia cases that the Centers for Disease Control later deemed the "most persistent cluster of childhood leukemia in the United States." Between the years 1966 and 1986 there were 28 cases of childhood leukemia identified in Woburn. Sixteen children died. In addition, studies have identified elevated rates of kidney cancer, heart, immune, and nervous system disorders, birth defects, and male breast cancer. Woburn has been the subject of three books, the most recent, A Civil Actionby Jonathan Harr is being made into a major motion picture by Robert Redford and Disney Studios. It has been the subject of a PBS Nova program, a 60 Minutes report, and countless newspaper and magazine articles. 1979 was the pivotal year for residents of Woburn who formally organized efforts to bring their concern about hazardous waste and public health problems in the community to the attention of local, state, and federal government agencies. Prior to 1979, citizen efforts in Woburn were sporadic but persistent. Beginning in 1965, when drinking water Wells G & H began pumping water for municipal consumption, residents complained about the quality of their drinking water. It smelled bad, it tasted bad, and it looked bad. They took their complaints to Woburn city officials and to the Massachusetts Department of Public Health, yet Wells G & H continued to operate until they were permanently closed in 1979. Later studies would confirm that Wells G & H were contaminated within a few months of going on line. In the early 1970s, when the Woburn Mall and Industriplex industrial park were under construction, residents warned city officials about the presence of hazardous waste in the area. The industriplex site contained an arsenic pit, chromium lagoons, 200 acres of soil contaminated with heavy metals, 44 acres of buried animal hides, and groundwater contaminated with benzine, toluene, and dissolved arsenic and chromium. Wells G & H and the Industriplex site were listed as National Priority List sites after Superfund was passed in 1982. And, the Massachusetts Department of Environmental Protection has listed more than 60 smaller hazardous waste sites in the community. Through informal meetings around kitchen tables, and networking at the grocery store and on the sidelines at school sporting events, residents began to compile information about improper hazardous waste disposal, chemical barrel cleaning operations, and buried drums in the woods along the banks of the Aberjona River. Consequently, it came as no surprise when Wells G & H were closed, construction at the Industriplex site was stopped, and the cluster of childhood leukemia was formally recognized by the Massachusetts Department of Public Health (DPH) and the U.S. Centers for Disease Control (CDC). What was the public's response? They were concerned and angry, they wanted answers, and they wanted something done to clean up problems in their community. Through the years there have been numerous, it seems like countless, health studies conducted in Woburn. There have been two ATSDR Health Assessments for the Industriplex and Wells G & H sites. There have been numerous risk assessments for air, water, and soil in connection with plans to remediate hazardous waste sites. Harvard School of Public Health conducted a study in conjunction with the citizens organization For A Cleaner Environment (FACE). And there have been a number of health studies conducted by DPH and CDC. Of the studies conducted in Woburn, the most valuable lessons can be gained from studies conducted by DPH and CDC and the Harvard School of Public Health. Analysis of the process used to develop these studies provide a basis for citizens, researchers, and government agencies to improve the quality of community health studies, to become more responsive to issues of greatest concern in a community, and to develop meaningful dialogue between interested parties. HEALTH STUDIES 1. Cancer Incidence and Environmental Hazards 1969-1978 January, 1981 - Conducted by the Massachusetts Department of Public Health with assistance from the U.S. Centers For Disease Control Results of the study Cancer Incidence and Environmental Hazards 1969-1978 were presented by the Massachusetts Department of Public Health and the U.S. Centers for Disease Control at a public meeting held at Woburn City Hall in the winter of 1981. The meeting room was packed with people anxious to hear results of the study they had been waiting for since 1979. Residents were convinced their suspicions that the cluster of childhood leukemia cases would be confirmed to be related to exposure to contaminated water from Wells G & H. Their network had already identified multiple sources for contamination of the wells, and their experience with Wells G & H water confirmed, in their minds, that the water had been contaminated for many years, probably as long as the wells were in use. However, the DPH study fell far short of expectations. The study looked at incidence of childhood leukemia, renal cancer, and liver cancer using interviews of cases, or their families, identified through death certificates, self reporting, and hospital records. Leukemia cases were matched with two age and sex-matched controls. Expected number of cases were calculated using age and sex-specific incidence data from the Third National Cancer Survey. The study confirmed that "there was a significantly elevated incidence of childhood leukemia in Woburn for the period 1969-1979. Twelve cases were observed whereas 5.3 cases were expected." It also stated that the incidence was at least seven times greater than expected in the eastern part of Woburn (where the leukemia cluster and Wells G & H were located), while incidence for the rest of Woburn was not significantly elevated. The study further concluded that "The incidence of renal cancer in Woburn was significantly elevated for the period 1969-1978. Thirty cases were observed whereas 19.4 were expected." However, "The incidence of liver and bladder cancer was not significantly elevated." While the study confirmed that Wells G & H were in use during the "presumed critical exposure period of the childhood leukemia cases and that they primarily served the eastern part of Woburn." It went on to state that "No information is available indicating what, if any, contaminants existed prior to May, 1979." when the wells were closed. And finally concluded, "The information gathered thus far fails to provide evidence establishing an association between environmental hazards and the increased incidence of childhood leukemia and renal cancer in Woburn." The residents were shocked and outraged! Not only had DPH and CDC failed to demonstrate a connection between Wells G & H water and the incidence of childhood leukemia, but their presentation and report was filled with caveats demonstrating that they had ignored public reports about the extent of contamination in Woburn and the quality of drinking water through the years. Furthermore, the Department had made no attempt to explore the possible association between environmental contamination and the incidence of disease. In their zeal to produce a credible scientific study they had failed to educate the public about the limitations of the study design and they had failed to work with the public to design a study that would answer questions about exposure to contamination in Woburn that could explain the high incidence of childhood leukemia. 2. An Analysis of Contaminated Well Water and Health Effects in Woburn, MA 1985 - Conducted by Harvard University School of Public Health in conjunction with For A Cleaner Environment (FACE) Disappointed with the study by DPH, residents presented their concerns at a forum held by Harvard School of Public Health. They attracted the interest of Dr. Marvin Zelen and Dr. Stephen Lagakos who designed a study comparing the incidence of birth defects and childhood leukemia with exposure to water from Wells G & H. They used a newly completed study by the Massachusetts Department of Environmental Protection that divided the town into five zones of graduated exposure to reflect, on a month by month basis, access to Wells G & H water. Information about birth defects and childhood leukemia was obtained using a survey instrument administered by trained volunteers from the community. The study was released, again to an overflow crowd, in a Woburn church that became the temporary office for the study. The Harvard researchers concluded that there was a "positive statistical association" between exposure to Wells G & H water and the incidence of childhood leukemia, birth defects, and childhood disorders. The primary difference between the Harvard and DPH studies had to do with the fact that the DPH study simply confirmed elevated rates of childhood leukemia in the community, something that the public already knew, while the Harvard study attempted to link the cases of leukemia to known exposure to chemical contamination in the drinking water supply. The additional difference between the studies was that a high level of trust developed between residents and researchers because Harvard involved the public is all aspects of their study, from design and implementation, to analysis of results. Through their work with the Harvard study, residents of Woburn felt their "knowledge" about the relationship between contaminated drinking water and the incidence of leukemia and birth defects had been validated. 3. Woburn Environment and Birth Study August, 1994 - Conducted by the Massachusetts Department of Public Health with assistance from the U.S. Centers for Disease Control The third major health study in Woburn, and by far the most expensive and comprehensive, was conducted by the Massachusetts Department of Public Health in conjunction with the U.S. Centers for Disease Control. The Woburn Environment and Birth Study (WEBS), like the Harvard study, attempted to examine the relationship between the incidence of birth defects and exposure to contaminated water from Wells G & H. However, it differed from the Harvard study in that information about the incidence of birth defects was gained, not from the families directly, but from birth and fetal death data from the Registry of Vital Statistics. Like the Harvard study, it also used a model of water distribution that determined the proportion of Wells G & H water distributed to each home in Woburn on a month by month basis during the entire time the wells were in use. In an attempt to avoid misunderstanding between the Department and the community, as happened with the 1982 study, DPH established a Citizens Advisory Council (CAC), made up of residents of Woburn and researchers from Harvard School of Public Health, Boston University School of Public Health, and MIT who had been working for many years with the citizens group FACE. The CAC met regularly for a number of years and gave input to the Department about study design and implementation. There were a number of disagreements between members of the CAC and DPH. Rather than relying on vital statistics alone, the CAC wanted the Department to review hospital records and examine, during the first year of life, babies born to Woburn parents to determine the incidence of birth defects. The CAC also wanted the Department to use experts from their circle of friends to determine methods for analysis of the data produced by the study, a clear indication of the level of trust that existed between residents of Woburn and DPH. As the years went on, (the study took eight years to complete), DPH held fewer and fewer meetings with the CAC. When all the data was gathered and analysis was about to begin, meetings of the CAC ceased. Two years later, the study was released at a hotel in Woburn with only a few residents in attendance. What did the Department find? "Overall, the WEBS results provide little support for the hypothesis that environmental contaminants in the public water supply had an adverse effect on the reproductive health of....Woburn residents." This time there was no outrage. No one in Woburn expected anything from the study, or even cared very much. It had been 15 years since Wells G & H were closed. However, the citizens group FACE criticized the study for a number of failures. First, Wells G & H were in use for 15 years, but birth defect data for only five years was analyzed, raising questions about the study's conclusions. Second, analysis of the incidence of birth defects and exposure to Wells G & H water was conducted on an "exposed" versus "not exposed" basis, rather than in relation to the proportion of Wells G & H water received during pregnancy, an analysis that may have shown an association between birth defects among babies born to mothers who were exposed to higher concentrations of contaminated water. Third, DPH did use hospital records to ascertain the incidence of birth defects in Woburn babies during the first year of life, but they conducted this most labor intensive part of the study for the years 1989-1991, ten years after the wells were closed. 4. Woburn Childhood Leukemia Follow-Up Study May, 1996 - Conducted by the Massachusetts Department of Public Health The most recent, most significant, and probably final health study to be conducted in Woburn was presented to the public last May in the Woburn High School auditorium. With carefully organized advance publicity, the Massachusetts Department of Public Health made sure that TV, radio, and print media were in attendance, along with more than a hundred residents, researchers, educators, representatives of local, state, and federal government agencies, and representatives of industries responsible for contamination at the Wells G & H and Industriplex Superfund sites. The Childhood Leukemia Follow-up Study was designed to obtain additional information about 12 childhood leukemia cases included in the 1982 DPH study, expand the study to include nine additional cases diagnosed prior to 1989, and evaluate the relationship between cases of childhood leukemia, matched control cases randomly selected from throughout Woburn, and proportional exposure to contaminated water from Wells G & H. Information was obtained from medical records of leukemia victims and personal interviews with families of both cases and controls. The study confirmed "a positive association between exposure to Wells G & H water that occurred during a woman's pregnancy" and the incidence of childhood leukemia. It went on to conclude that women who were exposed to Wells G & H water were eight times more likely to have a child diagnosed with leukemia and that women who received all their water from Wells G & H were 14 times more likely to have a child diagnosed with leukemia. Response from the community was emotional. Finally! Seventeen years after Wells G & H were closed, the parents of children diagnosed with leukemia received official confirmation from a public health agency that their children's leukemia was related to exposure to chemical contamination in their drinking water supply, an association parents knew to be true, even before Wells G & H were closed. In addition to relief that the Woburn case could now be closed, release of the study caused renewed mourning for the deaths of sixteen children who would not have lost their lives if greater care had been taken to protect their water supply. Presented by Gretchen Latowsky, 18 year activist with the Worburn citizens group For A Cleaner Environment, Inc., at the conference "Meeting Community Needs - Improving Health Research and Risk Assessment Methodologies," Clark University, Worcester, MA, September, 1996.