MEDICAL EVALUATION OF THE BILLERICA STREET RESIDENTS
Prepared by the Environmental Health Section Boston University School of Public Health
David Ozonoff, MD, MPH Clifford Mitchell, MD, SM Patricia Coogan, MPH
March 10, 1989
FOR PUBLIC RELEASE Acknowladeement We would like to extend our appreciation to the subjects of this evaluation who subjected themselves to the lengthy examinations and interviews for the sake of the study. We would also like to thank Dr. Robert Knorr, the project supervisor for the Massachusetts Department of Public Health, who was extremely helpful to us in %any ways as this complex project proceeded. support for this project was provided by the massachusetts Department of Environmental Quality Engineerinq and the Department of Public Health. However the views in the report are our own and do not necessarily represent the views of either agency.
-A PARTICIPATING PERSONNEL AND ORGANIZATIONS
John Bernardo, MD Allergy Clinic Boston City Hospital Cheryl Caswell, MS Shiela McGuire, DDS New England Research Institute, Inc.
Robert Feldman, MD Clyde Niles, MD Roberta White, PhD Department of Neurology Boston University School of Medicine John Graef, MD Lead and Toxicology Clinic Childrens Hospital Medical Center Edwin J. Mikkelsen, MD Associate Professor of Psychiatry Massachusetts Mental Health Center Harvard Medical School Patricia Coogan, MPH Clifford S. Mitchell, SM, MD* David Ozonoff, MD, MPH Environmental Health Section Boston University School of Public Health
* Department of Internal Medicine, Francis Scott Key Medical Center, Baltimore, Maryland
Joseph Stokes III, MD BU-Framingham Study Boston University School of Medicine
The clinical impressions and overall interpretations of the study are those of Drs. Ozonoff and Mitchell. We express our appreciation to all of the study participants and the collaborating specialists for their cooperation. LIST OF TABLES
Table 1 List of Residents -- Omitted Table 2 Symptom Prevalence in Billerica Street Residents Table 3 Billerica/Silresim Rate Ratios
Table 4 Frequent Symptoms and Reasons for Medical Visits in the Billerica Street Residents
Table 5 Cardiac Risk Profiles -- Comparison of Lowell and Framingham Residents Table 6 Holter Monitor Results for Adult Residents Table 7 Pulmonary System: Symptoms and Pulmonary Function Table 8 Hematologic/Immune System: Test Results Table 9 Summary of Liver Function Tests Table 10 Neurophysiologic Testing: Nerve Conduction Studies Table 11 Neurophysiologic Testing: Blink Reflex Studies EXECUTIVE SUMMARY This Report presents a detailed medical evaluation of the 25 residents of the 93 Billerica Street site in Lowell, Massachusetts. In January of 1988 these residents were moved to temporary housing to allow a complete environmental assessment of their property which had been found to be contaminated with hazardous substances. The evaluations reported here took place in the Fall of 1988. The first of the eight families occupied their new condominium homes on the contaminated site in 1979, with the other families following at various intervals. While living there they complained of a variety of health problems, especially respiratory problems and frequent infections. When the residents discovered in 1987 that the site was contaminated they requested from health authorities a more detailed evaluation of their health in relation to the contamination. In response the Massachusetts Department of Public Health moved to obtain outside contractors to perform a health status investigation. At the same time the Department of Environmental Quality Engineering began a more extensive evaluation of the site. While the environmental and health investigations were conducted independently, they can be used together to provide a better picture of the site and the health of the individuals who lived on it. 1. We asked the residents themselves about their health, the health of their children, and factors in their lives that might affect their health.
To accomplish this we administered a structured questionnaire to each adult that inquired about a variety of health related issues, including an occupational, social and residential history. Most of the questions were the same as those used in a previous study of another, nearby Lowell neighborhood allowing a comparison with a geographically similar population. In addition, clinical histories were taken during the neurological examinations and the cardiopulmonary examinations (see below). 2. We reviewed existing medical records (doctor visits and hospitalizations) for the periods when individuals lived on the site, before they lived on the site, and in some cases, after they were relocated from the site. We asked each adult to provide a list of all hospitalizations and doctor visits that they could recall. Copies of the records were then requested. At the time of this report, we had received over 70% of requested records. A certified medical records technician then abstracted the records and summarized the results. 3. We arranged for routine laboratory testing and for specialists to perform selected clinical examinations on specific organ systems. We collected blood samples which were then sent to a clinical laboratory for routine blood counts and chemistries. We also obtained thiocyanate levels, PCB levels and blood lead levels because of the presence of cyanides, PCBs and lead on the site.
In addition, a set of clinical examinations was performed by Boston-area specialists. Three organ systems were specifically studied: the neurological system, the immune system and the cardiopulmonary system. These organ systems were selected for both theoretical, and empirical reasons. The information from these three sources was then combined and looked at from two different points of view: 1. We considered the clinical history and exam results of each resident and evaluated it in relation to the possibility that any signs or symptoms were a result of exposure to contamination from the site. When such a possibility existed, we compared it to alternative explanations, for example, an occupational exposure or a pre-existing medical condition. 2. We looked at the Billerica Street residents as a group to see if they were different in some respect from what we might expect of a similar group that did not share the common experience of living on a contaminated waste site.
Finally, we took one additional step in an effort to understand the results as fully as possible. Each family underwent an extensive interview with a clinician familiar with the psychosocial dimension of toxic exposure episodes. The results of these interviews were then synthesized into an overall description of the psychosocial processes that are characteristic of such situations. This was done because it is clear that the impact of living on a contaminated property cannot properly be understood by reference only to laboratory values and clinical descriptions but must take into account the many ways that such an experience affects the life of an individual and a family.
The findings of our evaluation can be summarized as follows: (1) In symptoms reported, the residents experienced significantly more rashes or skin irritation, burning or irritation of the eyes or nose, acne, swollen glands, bowel complaints, persistent colds, frequent headaches, nervousness, irregular heartbeat and fatigue than a control population. (2) Physical exam findings included only one case of a psoriatic rash. (3) Laboratory findings included three people with mild elevations of total and indirect bilirubin and a different person with a minimally elevated GGT, one adult with a slightly elevated white blood cell count and 4% eosinophilia, and one child with an elevated white cell count and 10% eosinophilia. (4) Neurophysiologic exams revealed four people judged to have "subclinical neuropathies." Although some residents complained of "pins and needles," and had abnormal neurophysiologic exams, all of the residents had normal neurological exams. (5) A variety of minor deficits were seen on neuropsychologic testing, but in the judgment of the neuropsychologist no pattern emerged suggestive of a common toxic exposure. (6) Three individuals had abnormal cardiac rhythms. Two individuals had 24 hour Holter monitor results that showed ventricular tachycardia, a potentially serious cardiac rhythm disturbance. Two individuals also had considerable ventricular ectopy throughout the 24 hours. All three also had "subclinical neuropathies;" their durations of exposure on the site varied widely. They had no obvious risk factors for coronary artery disease. (7) One child had reactive airway disease which was new in onset while he was living at the site and has since improved. All other pulmonary function tests were normal. (8) The psychosocial evaluation of the families found, "higher levels of generalized anxiety and depression than one would expect in a population of similar background and size." These results could plausibly be looked at from two different perspectives.
(1) The Billerica Street residents present with a variety of health complaints, similar to those found at other toxic waste sites, and to a degree more than one would expect in an unexposed population. The lack of objective findings in physical and laboratory exams notwithstanding, this could be taken as evidence of an effect from living on the site. Moreover, the fact that three residents had an unusual combination of potentially serious cardiac rhythm disturbances and subtle subclinical neuropathies and that two residents had symptoms which improved after leaving the site, strengthens this impression. (2) The Billerica Street residents present with a variety of health complaints, similar to those found at other toxic waste sites, and to a degree more than one would expect in an unexposed population. However, the lack of objective findings on physical and laboratory exams suggests that most of these complaints are probably stress-related. There were clinically significant findings in some residents, but it is not known whether these findings are associated with exposures at the site.
That living on the site has seriously affected the lives and the health of the families involved is beyond doubt, as indicated in the psychosocial investigation of Dr. Edwin J. Mikkelsen, summarized in the report and contained in full in the Appendix. The only question is whether any of the complaints or the clinical findings are related to a toxic effect of one or several chemicals on the site or are related to the stress of living on the site. In the absence of additional data it is not possible to render a firm judgment about the mechanism of these health effects. In our view, the evidence on balance is sufficient but certainly not compelling to say that the non-specific pattern of symptoms seen in these residents are the direct result of exposures on the site. There are health effects of concern to the residents which could not be evaluated at this time. These include reproductive health effects and possible cancer risks. There were two miscarriages out of four pregnancies occurring while the parents lived on the site. This is too small a sample to know whether this represents an excessive rate of miscarriage. The cancer risks are best evaluated by reference to the risk assessment performed under the direction of the Department of Environmental Quality Engineering. TABLE OF CONTENTS
Section Page
INTRODUCTION 1 Overall Description of the Medical Evaluation Process 1 CONSIDERATION OF THE BILLERICA STREET RESIDENTS AS A GROUP 3 Symptom Prevalence at Billerica Street 4 Symptom Severity 5 Opinion about Air and Water Quality 6 Medical Problems Prior to Living on Billerica Street 6 Employment and Lifestyle Factors 7 Child Health 8 CONSIDERATION OF SPECIFIC ORGAN SYSTEMS 9 Nervous System 9 Cardiovascular System 10 Pulmonary System 12 Hematologic/Immunologic System 14 Gastrointestinal System 15 Reproductive System 15 Dermatologic System 16 Toxicologic Evaluations 16 PSYCHOSOCIAL EVALUATION OF THE RESIDENTS 16 CONCLUSION 17 TABLES APPENDICES 1
INTRODUCTION We present here a detailed medical evaluation of the 25 residents of the 93 Billerica Street site in Lowell, Massachusetts. In January of 1988 these residents were moved to temporary housing to allow a complete environmental assessment of their property which had been found to be contaminated with hazardous substances. The evaluations reported here took place in the Fall of 1988.
The first of the eight families occupied their new condominium homes on the contaminated site in 1979, with the other families following at various intervals. While living there they complained of a variety of health problems, especially respiratory problems and frequent infections. When the residents discovered in 1987 that the site was contaminated they requested from health authorities a more detailed evaluation of their health in relation to the contamination. In response the Massachusetts Department of Public Health moved to obtain outside contractors to perform a health status investigation. At the same time the Department of Environmental Quality Engineering began a more extensive evaluation of the site. While the environmental and health investigations were conducted independently, they can be used together to provide a better picture of the site and the health of the individuals who lived on it. Overall Description of the Medical Evaluation Process The monetary and time resources available for the medical evaluation of the Billerica Street residents, while ample, were not unlimited. In addition, in the absence of urgent indications to the contrary it was necessary that any tests be relatively non-invasive. The evaluation described in the Report was designed to accomodate these constraints and still provide the maximum information on the health of the residents in relation to the contamination.
To perform the evaluation we used three sources of information on the health of the residents:
1. We asked the residents themselves about their health, the health of their children, and factors in their lives that might affect their health. To accomplish this we administered a structured questionnaire to each adult that inquired about a variety of health related issues, including an occupational, social and residential history. Most of the questions were the same as those used in a previous study of another, nearby Lowell neighborhood (Ozonoff et al., 1987) allowing a comparison with a geographically similar population. In addition, clinical histories were taken 2
during the neurological examinations and the cardiopulmonary examinations (see below).
2. We reviewed existing medical records (doctor visits and hospitalizations) for the periods when individuals lived on the site, before they lived on the site, and in some cases, after they were relocated from the site. We asked each adult to provide a list of all hospitalizations and doctor visits that they could recall. Copies of the records were then requested. At the time of this report, we had received over 70% of requested records. A certified medical records technician then abstracted the records and summarized the results. 3. We arranged for routine laboratory testing and for specialists to perform selected clinical examinations on specific organ systems. We collected blood samples which were then sent to a clinical laboratory for routine blood counts and chemistries. We also obtained thiocyanate levels, PCB levels and blood lead levels because of the presence of cyanides, PCBs and lead on the site. In addition, a set of clinical examinations was performed by Boston-area specialists. Three organ systems were specifically studied: the neurological system, the immune system and the cardiopulmonary system. These organ systems were selected for both (a) theoretical, and (b) empirical reasons. (a) While we have some information on the effects of chemical exposures from studies of occupational settings, case reports of accidental poisonings and suicide attempts, and animal and in vitro experiments, the exposures in the community context are usually considerably lower than in these reference studies. We therefore felt that the most plausible effects were those for which the initial stimuli would be biologically amplified. For example, carcinogens can exert their effect at levels that are dramatically lower than most other toxic effects because the initial, minute damage to the heriditary material of a single cell is biologically reproduced by the body's normal process of cellular division, resulting in a large mass of damaged (tumor) cells after many years. Unfortunately, at the moment there is no method to detect such minute early damage and this study does not attempt to do so. On the other hand, there are other "biological amplifiers" that can turn very small stimuli into much larger immediate effects. Both the nervous system and the immune system routinely act in this way and they were selected for special 3
scrutiny by this study. In addition, the cardiopulmonary system may be affected by both the immune and nervous systems and was included partially for this reason.
(b) The reason for selecting the three organ systems was more than heuristic, however. Prior work with chemical contamination episodes in the community setting suggested that all three systems might be sensitive indicators of chemical exposure (cf., for example, Byers et al, 1988; Feldman et al., 1988). Moreover residents complained about symptoms referable to these systems and this required that they be looked at in more detail.
The information from these three sources was then combined and looked at from two different points of view:
1. We considered the clinical history and exam results of each resident and evaluated it in relation to the possibility that any signs or symptoms were a result of exposure to contamination from the site. When such a possibility existed, we compared it to alternative explanations, for example, an occupational exposure or a pre-existing medical condition. 2. We looked at the Billerica Street residents as a group to see if they were different in some respect from what we might expect of a similar group that did not share the common experience of living on a contaminated waste site. Finally, we took one additional step in an effort to understand the results as fully as possible. Each family underwent an extensive interview with a clinician familiar with the psychosocial dimension of toxic exposure episodes. The results of these interviews were then synthesized into an overall description of the psychosocial processes that are characteristic of such situations. This was done because it is clear that the impact of living on a contaminated property cannot properly be understood by reference only to laboratory values and clinical descriptions but must take into account the many ways that such an experience affects the life of an individual and a family. CONSIDERATION OF THE BILLERICA STREET RESIDENTS AS A GROUP The residents were each looked at individually and judgments made concerning each person. In this report we only consider the residents as a group. In some instances pertinent personal information has been omitted from this report to prevent the identification of individuals. We first compare symptom prevalence among the Billerica Street residents with a geographically nearby group. This is followed by a more detailed consideration of the pattern of symptoms, which, for convenience and clarity, is organized by target organ system. 4
Symptom Prevalence at Billerica Street The Billerica Street residents responded to a structured questionnaire similar or identical to one used previously in a symptom prevalence survey of a nearby neighborhood in Lowell, the so-called Silresim site (Ozonoff, et al., 1987). This survey compared the responses of 1000 residents in a neighborhood exposed to airborne chemicals from an improperly managed hazardous waste facility to an unexposed but similar group of Lowell residents close by. We have used the results of that survey to compare the responses of the Billerica Street residents to both the exposed Silresim group and the unexposed controls from the Silresim study. The Billerica Street residents were asked to report symptoms which had occurred within the previous six months. These symptoms were described as "common problems which affect us from time to time in our daily lives". We compare symptom prevalence among the Billerica Steet subjects with the control group from the Silresim study in Table 2. This Table shows the responses by the Billerica Street study subjects ("Study"), the Silresim target group ("Target"), and the Silresim control group ("Control") to questions about overall health and about health problems experienced in the six months prior to the interview. Although assessment of overall health and comparative health is very similar for the three groups, more of the Billerica Street residents suffer from a wider variety of complaints than do the two groups from the Silresim study. Of the 21 symptoms listed in Table 2, 13 of them were reported by a higher percentage of Billerica Street residents than in either of the Silresim groups. We compare the symptom prevalence in the Billerica Street subjects to the Silresim target and control groups in Table 3. g The rate ratio is the percentage of the study subjects with a given symptom divided by the percentage of the control or target group with that symptom. A rate ratio of two, for example, means the study group is two times more likely to have reported a symptom than the comparison group. Eight symptoms were more likely to occur in the study subjects than in either Silresim group at a statistically significant level (Mantel-Haenszel chi-square): bowel complaints, rash or skin irritation, swollen glands, burning or irritation in the eyes or nose, nervousness, acne, persistent colds, and persistent headaches. One result of the Silresim study was that a higher prevalence of bowel complaints, persistent colds, and burning 5 eyes or nose was associated with being exposed to a hazardous waste site. We see these same symptoms reported in the Billerica Street residents at an even higher prevalence than in the Silresim target group. Two other symptoms - irregular heartbeat and unusual fatigue - were reported to a significantly higher extent in the study subjects than the Silresim controls, but not the targets. (In the Silresim study, these two symptoms were also more prevalent in the target than the control group).
Therefore, in the Billerica Street residents, we see a number of self-reported symptoms occurring about two to three times more often than in an unexposed comparison group (Silresim controls). Five of these are symptoms which have previously been associated with exposure to a hazardous waste site in the Silresim study. We can also compare these results with a similar health survey done near the Stringfellow waste site in California. Subjects were asked about reported diseases and a list of symptoms experienced in the past 6 months, similar to the symptoms asked of the Billerica Street and Silresim subjects. Symptoms and dieases reported by the exposed group in the Stringfellow study are reminiscent of the symptoms reported by the Massachusetts studies. Those symptoms (reported by group exposed to the Stringfellow site) with an odds ratio greater than 1.5 included frequent diarrhea and skin rash; those with an odds ratio greater than one included chronic eye irritations, daily cough, and tiring easily (Baker et al., 1988). Symptom Severity The subjects were asked how often their symptoms occurred, and whether they sought medical care to give some index of the severity of their symptoms. Table 4 shows those symptoms which occurred to people at least 5 times in the past six months, and/or for which they sought medical care. Rash and skin irritation stands out as having afflicted six people 5 or more times in 6 months, and four people were concerned enough to see a doctor for it. Irritation or burning of the eyes or nose also sent four people to the doctor. The residents were asked to report symptoms they suffered in the previous six months and whether they saw a doctor or other health care provider for these symptoms. Medical records were also obtained and abstracted by a certified medical records technician. The comparisons of these sources of information are given in Table 4.
In interpreting this table several things must be kept in mind. There are many reasons why a health complaint might not appear in the medical record. "Verification" of a complaint by 6
this means depends not only on whether the patient had the symptom in question but also depends on the patient's care-seeking behavior in general and with respect to particular symptoms. Care-seeking behavior is influenced by many factors such as the type of health insurance, time available, child care arrangements to allow a doctor visit, the patient's perception of what is "appropriate" for a doctor visit, among other things. Moreover, many things reported in an office or clinic visit probably never find their way into the record or appear only in a modified or interpreted form. Thus a report of swollen glands might appear in the record as a sore throat or an upper respiratory infection. Also, longstanding problems may not be repeated in the medical record although they continued to bother the patient in the previous six months. It should also be noted that complaints made to doctors are still "self-reports." For many symptoms of clinical importance such as headache or nausea there is no "objective" measure. Thus the medical record may reflect perceived severity or significance as much as anything and should not be taken as a guarantor one way or the other of the reality of the complaint. Opinion about Air and Water quality All of the adults in the study group believed that the air or water or both on Billerica Street smelled or tasted bad. Fourteen people had at some time noticed an unusual smell or taste in their water. No one, however, believes that the water has ever made them ill. The Billerica Street site is supplied with water from the city supply, and therefore the water should not be affected by contaminants on the site. Four adults drank only bottled water while living on Billerica Street, and 14 drank a combination of tap and bottled water. Fifteen of the adults have noticed an unusual or unpleasant odor in the air, and most (11) say they noticed it often. Many described it as a gas smell; it was also described as having a musty or hydrogen sulfide-like smell. Only one person described the air as eye-burning, even though nine people reported symptoms of eye irritation in the past 6 months. Most (9) people said the smell was "somewhat" strong; four said it was "very" strong. Ten people belive the air has made them feel ill at some time.
Medical Problems Prior to Living on Billerica Street If a person had a condition before they moved to Billerica Street, one could assume that condition was not caused by exposure to the contaminants at the site, although 7 they might exacerbate a pre-existing condition. To acsertain what illnesses had occurred to the subjects prior to their living on Billerica Street, all available medical records for the study subjects were reviewed. Records were obtained for all but four subjects. By comparing available medical records with subject responses to the questionnaire, we found that: 1. Three subjects who reported wheezing and shortness of breath have a history of allergies which predate their residence on Billerica Street. One of these people reported that although she had asthma all her life, it was never as severe as it was when she lived on Billerica Street. 2. Two subjects who reported bowel complaints and/or nausea had seen a doctor about this kind of complaint prior to their residence on Billerica Street. One subject who reported nausea in the past six months was 2 months pregnant at the time of the interview. 3. One subject who reported frequent headaches had seen a doctor for this same complaint before moving to Billerica Street. 4. One subject who reported rashes had previously been treated for a rash. Three of these symptoms for which subjects had seen a doctor prior to their exposure to the Billerica Street site (persistent headaches, rash, and bowel complaints) were symptoms that had a significantly higher prevalence in the study subjects than the Silresim targets or controls. We analyzed these symptoms again, after subtracting the subjects who had reported symptoms prior to exposure. Results are shown in Table 5. In this analysis, prevalence of headaches in the study subjects remained significantly higher than in the Silresim controls, but just missed significance with the target group. Rash remained significantly elevated above both Silresim groups. After subtracting the study subjects whose medical records indicated a visit or visits to the doctor due to bowel complaints, this symptom was not significantly higher than the Silresim target group, and was almost significantly higher than the control group.
Employment and Lifestyle Factors The adults do not appear to have been unduly exposed to hazardous materials in the workplace. No one ever was exposed on the job to pesticides, asbestos, beryllium, or other metals. Six reported having at some time been exposed to 8 smoke and fumes on the job; three were exposed to irritants to the eye or nose; 4 to solvents or degreasers; 4 to lead; and 3 to silica or crushed rock. Most of these exposures were described as occuring "rarely." Six had at some time had a job involving welding or soldering. Most of the people who were exposed to any of these materials, worked with or around them for a very short time - two months or less. For those who work with flux or solder, it is on a very small scale, usually in computer repair. The most notable workplace exposures are: one subject who worked at a plastics company twenty years ago was exposed to lead, toluene, metals, and other hazardous materials; one subject who has worked around carbon disulfide, heat, and fibers since 1978; and one subject who is exposed to lead solder, 1,1,1-trichloroethane and other materials at work. Any potential relevence of these exposures to the health assessments are discussed in the appropriate sections of the report. Study subjects were queried as to their smoking and drinking habits, as these behaviors have important consequences for health. The study subjects are most moderate in their drinking habits as reported in the questionnaire. Five subjects do not drink at all, and the rest are moderate drinkers (consumption ranging from a drink per day to a drink per month). Five of the 18 adults smoke from three quarters of a pack to a pack of cigarettes per day. We compared the 5 smokers in the group with the 11 nonsmokers, to see if any symptoms were clustering in the smokers. There was no differences between the smokers and nonsmokers, that is, all symptoms occurred with equal frequency in both groups. Child Health
Seven children are included in the study group, ranging in age from 2 to 11 years. Four of these children (aged 2,3,4, and 7) had lived their whole lives on Billerica Street. The eleven year old had lived there for eight years; the other two children for approximately 2 years. Three of the children have been diagnosed with asthma; asthma is severe enough in one child to restrict his activities. All three children were diagnosed in 1987, when they were living on the site. one child had bronchitis three or more times in a single year (his first year of life), when he lived on the site. One child was reported to have had more than two earaches in the prior two months. Two children have also suffered recurring ear infections during years when they lived on the site. Five of the seven children were reported to have had frequent colds in the past year. Four children were diagnosed as having skin problems (rash or eczema) while living on the site. No child has missed school due to illness more often 9 than their parents consider normal; no child's activities are limited due to illness except for the child with asthma.
CONSIDERATION OF SPECIFIC ORGAN SYSTEMS Nervous System Neurological evaluation of the adults was performed by the Department of Neurology at the Boston University School of Medicine. The protocol to assess possible neurotoxic effects of industrial chemical in the Billerica Street residents was identical to that used in the evaluation of eight families from Woburn, Massachusetts, who had chronic exposure to industrial chemicals through their drinking water. The protocol included a clinical neurological exam, nerve conduction studies, and extensive neuropsychological testing. The results presented here are based on the neurological, neurophysiological, and neuropsychological testing of the eighteen adults. The neurological testing of the children was performed separately at Children's Hospital. The only clinically significant findings in the neurologic exams of any of the residents (either adults or children) were three cases of fine motor intention tremor, clustered in a single family. This was judged to be a familial tremor, not associated with the site. Four residents were judged to have "subclinical neuropathy" by the neurologist, on the basis of abnormal neurophysiologic testing. The four residents had exposures of various periods at the site. Interestingly, three of the four were also found to have abnormal Holter monitor results in their cardiac evaluations (see below).
The neurophysiological test results of the Lowell residents were compared to a control group of normal individuals used by the neurophysiology laboratory that performed the tests. Independent t-tests comparing the two groups showed no indication that the Lowell residents, on average, performed more poorly than the controls. Multiple regressions, controlling for age and sex, and assigning an exposure value of 0 to the controls, confirmed this result. Several individuals had some abnormality noted on neuropsychological testing. These included some attention deficits, some cognitive impairments, and some memory deficits. In addition, depression was noted in several of the subjects. While recognizing that there are no standard reference groups against which these people can be easily compared, the neuropsychologist (who has considerable experience with similar testing in other toxin-exposed populations) felt that there was no pattern of deficits that 10
suggested a toxic exposure of the sort that she has seen before, usually with organic solvents in drinking water or heavy metals.
Cardiovascular System The residents' cardiovascular health was evaluated by the Framingham Heart Study. Histories, physical exams, electrocardiography, laboratory studies, and 24 hour Holter monitors were included in the analysis. Some comparisons were made with an age- and sex-matched segment of the Framingham population. Six patients complained of possible cardiovascular symptoms: three had palpitations, one had chest pain, and two had chest pains and palpitations. Two of these individuals had had recent medical workups for possible cardiac disease; one had a normal EKG and an upper GI series (for possible non- cardiac sources of chest pain), while the other was admitted to the hospital where a myocardial infarction was ruled out, after which he had a negative near-maximal exercise treadmill test. None of the residents had any documented pre-existing cardiac disease, although the resident who was admitted to the hospital did have a considerable number of ventricular extra- beats with exertion during his stress test. All of the residents had normal physical exams (there were no murmurs or other abnormalities noted). In addition, they all had normal electrocardiograms. Their cholesterol risk profiles are shown in Table 6. There were no significant differences between the Lowell and Framingham residents in any cardiac risk factors. This means that their risk of coronary artery disease is no different. Table 7 summarizes the 24 hour Holter monitor results for the adult residents. Three residents had significantly abnormal Holter monitor results. All of the underlying rhythms were sinus or occasional sinus arrhythmias. One resident had 142 VPB's/hr. over the 24 hour period, with frequent quadrigeminy and a 7-beat run of ventricular tachycardia. He has no previous history of heart disease, and has no risk factors except a possible family history (mother died of heart attack, age unknown). His total cholesterol is 178 mg/dl and HDL-cholesterol is 44 mg/dl. He has never smoked, he does not drink an undue amount of caffeine, and is normotensive. The second resident had no symptom complaints in by questionnaire and had a 4-beat run of ventricular tachycardia, with an average of 0.27 VPB's/hr. This resident is a smoker. He takes no medicines at all, and his laboratories were normal except for a minimally elevated iron, total and indirect 11 bilirubin, and thiocyanate level (most likely related to cigarette smoking). The third individual had an average of 178 VPB's/hr., including two paired VPB's. The resident complained of light- headedness, chest discomfort and palpitations by symptom questionnaire, and has recently been evaluated for chest pain. This revealed a normal EKG and upper GI X-ray to evaluate possible non-cardiac sources of chest pain. Past medical history and laboratory studies do not suggest any ready explanations for this amount of ventricular ectopy. Total cholesterol is 209 mg/dl, her HDL is 50 mg/dl. These are not abnormal values. The resident is overweight.
None of these individuals has an obvious pre-existing heart condition or other explanation for the abnormalities noted. A review of the literature allows some perspective on how unusual these findings might be. Newcombe et al. examined the 24-hour Holter monitors of 34 normal adults to evaluate the effects of caffeine on arrhythmias ("all had normal exercise tolerance, physical and echocardiographic examinations, and normal ECG's"), average age 31 years old (range 21-49 years). The Newcombe study subjects had a mean of 0.42 VPB's/hr without caffeine and 0.63 VPB's/hr after caffeine. The study also found that of the 34 subjects, 2 had significantly increased rates of VPB's (7 VPB's/hr and 5.9 VPB's/hr without caffeine, 12.1 and 7.3 VPB's/hr after caffeine) compared to the others; when these two individuals are excluded, the mean rate of VPB's/hr fell to 0.04 with or without caffeine. In the Billerica Street residents, if the two individuals with a high rate of ventricular ectopy are excluded, the mean is 0.30 VPB's/hr. One subject in the Newcombe study had a ventricular couplet (without caffeine); there was no ventricular tachycardia in any of the test subjects.
Similar findings were reported in a study of 101 subjects free of heart disease and a study of patients with panic disorders who had Holter monitors. In normal patients and patients and patients with panic disorders, ventricular tachycardia was not observed in any individuals, and although couplets were observed in two of the patients with panic attacks, they did not occur during actual attacks.
There is no obvious explanation for the arrhythmias observed in the Billerica Street residents. None had a history of heart disease or overwhelming risk factors for heart disease. Two have potential occupational exposures that could affect their hearts, but the connections are tenuous. Of the studies done on the residents, these are the most serious abnormal results. 12
Pulmonary System
The residents complained frequently of respiratory problems. Among the adults, three noted shortness of breath and "wheezing or throat tightness," two noted shortness of breath and cough, two noted just wheezing or throat tightness, and two noted just a cough. All told, 9/18 residents had some respiratory symptoms. Of the children, 3/7 had some respiratory symptoms according to Children's Hospital (4/7 had some respiratory history or symptoms according to the questionnaires).
Several of the residents had histories of asthma or other respiratory conditions prior to moving to the site. Of the nine adults with complaints, three had prior histories of bronchitis or asthma. One, who complained of an occasional persistent cough, had a remote history of hay fever 25 years ago. Another resident, who also noted an occasional persistent cough, has been told that she has bronchitis although there are no medical records available. She is still smoking, with an 8.25 pack-year smoking history, but has no occupational exposures. A third resident, who noted frequent wheezing and shortness of breath, has no known history of pulmonary problems, and aside from brief exposure to soldering 15 years ago, no known occupational exposures. She has a very modest smoking history, and quit smoking 1 year ago. A resident who noted some shortness of breath and occasional persistent cough has no history of pulmonary problems and no occupational exposures. She has an 11 pack year smoking history and still smokes. Another resident noted frequent wheezing and shortness of breath, has no known history of pulmonary disease, no occupational exposures aside from rare exposures to solvents in the past, and quit smoking 15 years ago. A resident who noted frequent shortness of breath and an occasional persistent cough, has no known pulmonary history, has never smoked, and was occasionally exposed to toluene and methylene chloride at a factory 20-25 years ago. It is possible that some of his symptoms are cardiac. Yet another resident noted wheezing sometimes and frequent shortness of breath. She has a history (by self- report) of "asthma" (from allergies) for which she took medication up until 1980. She has a modest smoking history and quit a year ago; she has no known occupational exposures. Another of the residents noted frequent wheezing; she has a known history of asthma and uses an inhaler regularly. She has no known occupational exposures and does not smoke. Finally, one of the residents complained of one or two episodes of wheezing or throat tightness. He has no history of pulmonary disease. He is occupationally exposed to numerous organic and inorganic irritants and dusts. He quit smoking many years ago. 13
Of the four children, one developed new onset asthma two years prior to moving to the site but required more treatments (not documented) while living at the site; he has improved since being relocated but still requires intermittent medication. A second (8 years old) has lived at the site for many years and was recently evaluated for possible exercise- induced asthma (12/87). He had a negative methacholine challenge test, suggesting some other etiology might be responsible for his activity-related shortness of breath. The third is a child who has lived on the site all his life and was seen in 1985 for "congestion... with a choking cough" that lasted 3 days, and was diagnosed as "asthma versus bronchiolitis." There were no confirmatory diagnostic tests; the child was treated with bronchodilators and improved, but has subsequently not required bronchodilators. The last is a pre-school child who had a two-day episode of wheezing in 4/87. The medical evaluation at the time suggested a diagnosis of asthma, based on wheezing and a strong family history of asthma. There were no lab tests. The child was treated with bronchodilators with improvement, and the symptoms did not recur. All of the adults but one were evaluated for current pulmonary impairment by physical exam and pulmonary function tests (PFT's). One resident was unable to complete her PFT's because of paroxysmal cough. The results are shown in Table 8, along with a summary of the patient symptoms and their smoking histories. All the completed tests were normal. The one resident who did not have PFT's was one of the asthmatics; fortuitously she had had them in the hospital on 6/8/87, at which time she had an FEV1 of 2.81 (90% predicted) and FVC of 3.99 (101% predicted). She had a modest response of 11% to bronchodilators, suggesting that her asthma is mild. Only two of the four children with respiratory complaints had PFT's (the others were too young); these were also unremarkable, according to the pediatrician. The PFT's for one of the two were consistent with reactive airway disease, with which he had been previously diagnosed. The pediatrician left open the possibility that this could be a reaction to exposures at the site.
Of the nine adults with respiratory complaints, three give histories that could plausibly explain their complaints. Two others have histories that might have contributed to their symptoms. The remaining four residents have symptoms that are not explained by their histories.
Pulmonary function tests, while sensitive indicators of some kinds of pulmonary disease, are only one such measure. One of the defining features of some airway diseases such as asthma is their reversibility. It is possible that the residents happened to have normal PFT's on the days they were tested only because they were asymptomatic on those days. If 14
so, repeat PFT's when they are symptomatic will show the differences.
Hematologic/Immunologic System The status of the residents' hematologic and immune systems was assessed by questions about frequency of infections, past medical history of any hematologic or immunologic abnormalities, and laboratory examinations. Table 9 is a summary of these results. One resident complained of easy bruising or bleeding, five complained of swollen glands, five complained of persistent colds. As noted in the section on symptom prevalence, the residents complained of these symptoms significantly more than both the Silresim target group and the control group. Objective measures of these systems are more difficult. A crude measure of hematologic status is the blood count, and any abnormalities in the absolute numbers or relative frequencies of the various white cell populations. As Table 9 shows, in the adults there was one resident with an elevated total WBC count; interestingly, this individual also had a relatively high eosinophil count, suggesting the possibility that her elevated white count is due to an allergic reaction to drugs or exogenous allergens. Because she has arthritis, probably from an underlying autoimmune disorder, it is difficult to interpret these results. Another way of inquiring into the status of the immune system is the quantification of IgG; it is a measure of whether the body is producing normal amounts of antibodies, although it does not indicate whether the antibodies are functional; Table 9 shows that all the residents were within the normal range for IgG. Skin testing with common allergens was performed as one measure of the integrity of their cell-mediated immunity systems. All residents reacted appropriately to antigen challenge. The children had a number of quantitative tests of different blood components done, including blood counts, immunoglobulin fractions, and skin tests. All of these tests were within normal limits except for one child who had an elevated WBC count of 15,400 with 10% eosinophils. The significance of this elevation is unknown, and it is being repeated. 15
Gastrointestinal System Billerica Street residents noted a high number of "bowel complaints," compared with the Silresim residents and with a control population. Nine of the adult residents (50.0%) complained of bowel complaints, compared with 27.4% of the Silresim residents and only 20.6% of the control population. A few residents had pre-existing medical problems that might have predisposed them to GI problems. One individual who noted diarrhea and constipation had a probable history of spastic colitis. A second rsident had a self-reported history of "excess stomach acid," although no medical records were ' available. Similarly, a resident with infrequent diarrhea and constipation had seen a physician for stress-related gastritis prior to living on the site. Of the remaining five residents, nothing in their histories was helpful in understanding their gastointestinal problems. Of the children, one had diarrhea that was thought possibly related to parasites, for which she was being evaluated. No other abnormalities were noted among the children. The residents' physical exams were normal. The blood chemistries that indicate the status of liver and gall bladder function include bilirubin, LDH, Alkaline Phosphatase, AST, ALT, GGT, total protein and albumin. As shown in Table 10 three people had mild elevations in their total and indirect bilirubin. None of these individuals had any findings on physical exam, and none had the other abnormal laboratory findings one would expect to see with toxin-induced liver damage, such as elevated GGT, ALT, or AST. None was on any medication that might elevate bilirubin, and none showed any laboratory signs of hemolysis. Further, there was no consistent pattern of occupational exposures (for example, to organic solvents) that might account for such an elevation. One individual had been exposed to organic solvents in the past; one drinks alcohol (although with alcoholic hepatitis one would expect an elevation in other liver enzymes as well); one has never had drugs or alcohol but may have minute exposures to methylene chloride, but since he has a low carboxyhemoglobin he does not currently show signs of a significant chronic exposure. There were no abnormalities noted in the enzymes of the children. Reproductive System Ten of the 18 adults in the group are women. Three of six married women of childbearing age reported difficulty conceiving as a problem while living on the Billerica Street site. None of the three has had a medical evaluation of their infertility. 16
Of the four pregnancies which occurred while the women lived on Billerica Street, two resulted in miscarriage and two were normal births. Two women were pregnant at the time of this study; one is due at the time that this report is delivered. Dermatologic System
Eight residents (44%) complained of either "rash or skin irritation" and six (33.3%) were bothered by acne. One physical exam noted a psoriatic rash.
Toxicologic Evaluations All of the adult patients (except one resident who refused) had blood lead levels, free erythrocyte protoporphyrin (FEP, another indicator of lead intoxication), blood PCB levels, and thiocyanate levels. Each of the residents had a PCB level of <5 ppb; the national average PCB level is 5-7 ppb, indicating no undue absorption of PCB's by any of the residents. The mean lead levels and FEP levels were 5.6 ug/dl and 17.0 ug/dl, respectively. No one had an elevation in lead or FEP levels; these levels are well within the expected values for non-exposed individuals. One individual had a blood lead of 16 ug/dl; this person has an extensive smoking history. The thiocyanate levels for all residents were within normal limits; the highest, 2.1, was as expected, in a smoker.
All of the children had blood cyanide levels and urine screens for mercury, arsenic, and lead as part of their evaluations. They also had long bone X-rays to look for sings of lead toxicity. All of these tests were within normal limits.
PSYCHOSOCIAL EVALUATION OF THE RESIDENTS A detailed psychosocial evaluation was performed by Dr. Edwin Mikkelsen after extensive interviews with each family in their homes in the Summer of 1988. His complete report is included as an appendix. These are the salient features of his findings: Individuals involved in toxic waste episodes have much in common with communities that suffer natural disasters such as floods or earthquakes. In both cases lives are severely disrupted and there is a sense of "intrinsic damage" that is similar to that which can take place in a natural disaster. Despite these similarities, there are important differences. Natural disasters occur suddenly and are over quickly; toxic disasters arrive insidiously and may last many years or decades. The psychological suffering that this may engender is frequently unrecognized and the resulting lack of acknowledgment and validation by others leads to 17 a sense of abandonment. Moreover the fear of an unknown health effect leads to a continuing sense of threat that can in turn lead to chronic anxiety and depression. Finally, the fact that toxic disasters result from human activity rather than "Acts of God" often engenders feelings of distrust and anger towards authorities and those perceived as being responsible. The fact that episodes such as this are stressful is self- evident. The consequences of this stress may not be so straight- forward. Mikkelsen notes that residents "repeatedly confronted with such terms as 'possible carcinogen' and 'suspected mutagen'... become preoccupied with health concerns." Unexplained illness may dominate their experience. It has been observed in other episodes that the discovery of contamination causes people to begin to speak with each other and compare their symptoms. The may lead them to view their problems as coming from a common source, and to reinterpret past health problems. A natural concern with future health coupled with an understanding that effects of toxic chemicals are often much delayed means that even after having been removed from the source of contamination, the fear of future illness persists. In this context, it is interesting that Dr. Mikkelsen found that the relocation of the residents did not provide the sense of relief and resolution that might have been expected. The relocation itself was found to be very stressful for the residents and they felt stigmatized and regarded as outsiders in their new locations. CONCLUSION
Interpreting this voluminous mass of data represents a formidable challenge, given the state of the art in evaluating the health status of people exposed to chemical hazards. The findings of our evaluation can be summarized as follows: (1) In symptoms reported, the residents experienced significantly more rashes or skin irritation, burning or irritation of the eyes or nose, acne, swollen glands, bowel complaints, persistent colds, frequent headaches, nervousness, irregular heartbeat and fatigue than a control population. (2) Physical exam findings included only one case of a psoriatic rash. (3) Laboratory findings included three people with mild elevations of total and indirect bilirubin and a different person with a minimally elevated GGT, one adult with a slightly elevated white blood cell count and 4% eosinophilia, and one child with an elevated white cell count and 10% eosinophilia. (4) Neurophysiologic exams revealed four people judged to have "subclinical neuropathies." Although some residents complained of "pins and needles," and had abnormal neurophysiologic exams, all of the residents had normal neurological exams. (5) A variety of minor deficits were seen on neuropsychologic testing, but in the judgment of the neuropsychologist no pattern emerged suggestive of a common toxic exposure. (6) Three individuals had abnormal cardiac rhytms. Two of these had 24 hour Holter monitor results 18 that showed ventricular tachycardia, a potentially serious cardiac rhythm disturbance. Two individuals also had considerable ventricular ectopy throughout the 24 hours. All three also had "subclinical neuropathies;" their durations of exposure on the site varied widely. They had no obvious risk factors for coronary artery disease. (7) One child had reactive airway disease which was new in onset while he was living at the site and has since improved. All other pulmonary function tests were normal. (8) The psychosocial evaluation of the families found, "higher levels of generalized anxiety and depression than one would expect in a population of similar background and size."
These results could plausibly be looked at from two different perspectives. (1) The Billerica Street residents present with a variety of health complaints, similar to those found at other toxic waste sites, and to a degree more than one would expect in an unexposed population. The lack of objective findings in physical and laboratory exams notwithstanding, this could be taken as evidence of an effect from living on the site. Moreover, the fact that three residents had an unusual combination of potentially serious cardiac rhythm disturbances and subtle subclinical neuropathies and that two residents had symptoms which improved after leaving the site, strengthens this impression. (2) The Billerica Street residents present with a variety of health complaints, similar to those found at other toxic waste sites, and to a degree more than one would expect in an unexposed population. However, the lack of objective findings on physical and laboratory exams suggests that most of these complaints are probably stress-related. There were clinically significant findings in some residents, but it is not known whether these findings are associated with exposures at the site.
That living on the site has seriously affected the lives and the health of the families involved is beyond doubt (see Appendix 1). The only question is whether any of the complaints or the clinical findings are related to a toxic effect of one or several chemicals on the site or are related to the stress of living on the site.
Little is known about the non-carcinogenic effects of PAHs and complex cyanides found on the site. Eye irritation after exposure to suspended dusts, and headaches, dizziness and stomach upsets after exposure to volatiles from coal-gas sites have been reported, but the specific chemicals have not been identified (cf. GRI, 1988). While the residents have reported odors from the site, little work has been done on the physiologic effects of odors so it is not possible to say from this fact alone that the effects are the result of a pharmacologic action or are mediated by psychological and cultural factors (cf., e.g., Deane, 1986). Alarie and Luo (1986) have remarked on the reflex reactions that result from stimulation of trigeminal nerve endings in the nasal 19 mucosa and upper respiratory tract that are part and parcel of odor effects. According to Alarie, more organ systems are affected by trigeminal stimulation than by any other peripheral nervous receptors. As noted in the introduction, the kinds of biological amplification produced by the nervous system in response to very small stimuli such as odorants is a plausible explanation for how responses might be produced at levels much below those usually associated with toxic effects. The new-onset reactive airway symptoms seen in some of the residents would also fall into this category. The rather general constellation of symptoms reported by these residents and others around waste sites may be a typical non- specific response to noxious stimuli.
The coincidence of findings of subclinical neuropathy and abnormal Holter results is a more provocative finding. These tests were done because a similar result was found in Woburn residents exposed to TCE in their drinking water (Byers, et al., 1988). The relationship between this finding and exposures on the site remain to be clarified. In the absence of additional data it is not possible to render a firm judgment about the mechanism of these health effects. In our view, the evidence on balance is sufficient but certainly not compelling to say that the non-specific pattern of symptoms seen in these residents are the direct result of exposures on the site. There are health effects of concern to the residents which could not be evaluated at this time. These include reproductive health effects and possible cancer risks. There were two miscarriages out of four pregnancies occurring while the parents lived on the site. This is too small a sample to know whether this represents an excessive rate of miscarriage. The cancer risks are best evaluated by reference to the risk assessment performed under the direction of the Department of Environmental Quality Engineering. References Alarie Y and Lur JE. Sensory Irritation by Airborne Chemicals: A Basis to Establish Acceptable Levels of Exposure. Chapter 6 in Toxicology of the Nasal Passages, ed. by CS Barrow, McGraw Hill, NY 1986 Baker D, Greenland S, Mendlein J, Harmon P. A Health Study of Two comminities near the Stringfellow Waste Disposal Site. Arch Env Health 43:325, 1988
Byers VS, Levin AS, Ozonoff DM, Baldwin RW. Association between Clinical Symptoms and Lymphocyte Abnormalities in a Population with Chronic Domestic Exposure to domestic Water Supply and a High Incidence of Leukaemia. Cancer Imm Immunother 27:77-81, 1988
Deane M. Odor Pollution in Eurkea, California. Chapter 11, in Environmental Epidemiology, edited by JR Goldsmith, CRC Press, Boca Rotan 1986
Feldman RG, Chlirico-Post J, Proctor S. Blink Reflex Latency after Exposure to Trichloroethylene in Well Water. Arch Env Health 43:143--148, 1988
GRI (Gas Research Institute). Management of Manufactured Gas Plant Sites, Volume III: Risk Assessment. Chicago, May 1988
Kostis MD, McCrone K, Moreyra AE, Gotzoyannis S, Aglitz NM, Matarajan N, Kuo PT. Premature Ventricular Complexes in the Absence of Identifiable Heart Disease. Circulation 63:1351- 1356, 1981
Newcombe PF, Renton KW, Rautaharju PM, Spencer CA, Mantague TJ. High Dose Caffeine and Cardiac Rate in Normal Subjects. Chest 94:90-94, 1988
Ozonoff DM, Colten ME, Cupples A, et al. Health Problems Reported by the REsidents of a Hazardous Waste Facility. Am J Ind Med 11:581-597, 1987 Shear MK, Kligfield P, Harxhfield G, Devereaux RB et al. Cardiac Rate and Rhythm in Panic Patients. Am J Psychiatry 144:633-637, 1987 TABLE 2: SYMPTOM PREVALENCE IN BILLERICA STREET SUBJECTS
STUDY TARGET CONTROL (n=18) (n=1049) (n=948) Assessment of Overall Health Excellent 16.7 (3) 21.4 21.9 Very good or good 72.2(13) 51.8 52.5 Fair 11.1 (2) 21.3 21.1 Poor 0 5.2 4.5 Comparative Health Better 22.2 ( 4) 23.6 24.2 Same 61.1(1 1) 65.6 68.2 Worse 16.7 ( 3) 10.9 9.6 Problems Experienced over the Past Six Months Wheezing/tightness in throat 27.8 5) 27.4 20.6 Chest pain 16.7 3) 19.4 17.6 Bowel Complaints 50.0 9) 29.5 23.0 Shortness of breath 27.8 5) 24.5 21.5 Rash or skin irritation 44.4 8) 15.6 13.2 Sore throat 55.6( 0) NA NA Swollen glands 27.8 5) 10.2 10.3 Nausea or vomiting 27.8 5) 17.8 15.4 Blackouts 0 2.5 2.3 Pins and needles/numbness in fingers or toes 22.2 (4) 23.6 20.9 Irritation/burning in eyes or nose 50.0 (9) 24.0 21.3 Cough lasting 2 weeks or more 22.2 (4) 25.6 18.8 Irregular heartbeat 27.8 (5) 14.9 11.4 Loss 10 lbs. 0 7.0 7.0 Always feeling tired 55.6(10) 37.9 32.7 Nervousness 61.6(11) 30.5 33.7 Acne 33.3 (6) 11.0 9.9 Unusual color in urine 0 5.9 5.3 Easy bruising/bleeding 5.6 (1) 10.9 8.7 Persistent colds 27.8 (5) 11.8 7.6 Headaches 27.8 (5) 11.3 9.5 TABLE 3: BILLERICA/SILRESIM RATE RATIOS Silresim Target Group Silresim Control Group SYMPTOM RATE RATIO p-value RATE RATIO p-value Wheeze 1.01 0.484 1.35 0.227 Chest pain 0.86 0.387 0.95 0.458 **Bowel complaints 1.69 0.029 2.17 0.004 Short breath 1.13 0.374 1.29 0.262 **Rash/skin irritation 2.85 0.0005 3.35 0.00007 **Swollen glands 2.73 0.008 2.70 0.009 I Nausea 1.56 0.138 1.81 0.076 Blackcuts 0.00 0.254 0.00 0.262 Pins/needles 0.94 0.448 1.06 0.445 *=Burning eyes/nose 2.08 0.005 2.35 0.002 Cough 0.87 0.374 1.18 0.356 *Irreg heartbeat 1.87 0.065 2.44 0.016 Loss 10 lbs 0.00 0.125 0.00 0.125 I *Always tired 1.47 0.063 1.70 0.021 **Nervous 2.02 0.003 1.83 0.007 **Acne 3.03 0.002 3.36 0.001 Unusual color 0.00 0.146 0.00 0.161 Bruise/bleed 0.51 0.236 0.64 0.321 **Persistent colds 2.36 0.02 3.66 0.001 - **Persistent headaches 2.46 0.015 2.93 0.005 +Significance at .05 level, chi square test **Prevalence among study subjects significantly greater than among control or target groups *Prevalence among study subjects significantly greater than among control group TABLE 4: REPORTED SYMPTOMS AND DR. VISITS COMPARED WITH SYMPTOM VERIFICATION ON THE MEDICAL RECORD
SYMPTOM FREQUENCY OF OCCURENCE TOTAL SAW A SYMPTOM 1-2X 3-4X 5+ DR. VERIFIEC
Wheezing/throat tightness 1 1 3 5 Chest pain 2 1 3 Diarrhea 5 1 2 8 Constipation 2 3 - 5 Shortness of breath 4 5 Rash/skin irritation 2 6 8 Sore throat 6 4 - 10 Swollen glands 4 1 5 Nausea 1 2 2 5 Pins and needles 2 2 4
*SYMPTOM TOTAL REPORTING SAW A SYMPTCM SYMPTOM DR. VERIFIED Irritation/burning in eyes or nose 9 4 Cough, 2+ weeks 4 Irregular heartbeat 5 Always tired 10 Unusual bleeding 1 Headaches 5 Nervousness 11 Acne 6 Persistent colds 5 *Frequency of occurrence not asked for these symptoms TABLE 5: ADJUSTED BILLERICA/SILRESIM RATE RATIOS Comparison between Study Subjects and: Silresim Target Silresim Control Symptom Rate Ratio p-value Rate ratio p-value Headaches 2 .074 2.4 .036 Rash 2.4 .004 3 .001 Bowel Problems 1.3 .193 1.7 .057 TABLE 6: CARDIAC RISK PROFILES - COMPARISON OF LOWELL AND FRAMINGHAM SUBJECTS
Means Lowell Framingham p-value*
Total Chol. 186 188 0.39 HOL 48 44 0.05 LDL 116 118 0.41 Trig. 109 112 0.62 Weight 162 163 0.92 BP-Sys. 113 117 0.62 BP-Dias. 74 73 0.69 Co 9 10 0.8
*these are paired t-tests for 18 age- and sex-matched Framingham controls. TABLE 7: HOLTER MONITOR RESULTS FOR ADULT RESIDENTS
ID VPBs/hr 0001 0.21 0002 0.8 0005 0 0006 0007 0.05 0008 177.73 0009 0 0012 0.46 0013 0.86 0014 0 0015 141.61 0016 1.03 0017 0.27 0018 0 0019 0.47 0020 0.22 0023 0.04 0024 0.08 Average 19.04941 St. Dev. 51.72064 u'ooooooo000o0oooooooo 0C I 0 0 ,-< OOO00OOOOO 00 0 000'R -4 D NN------8 o0Qoo- o a i ooowwwjacJ1 -Ndf Ni0CJN- I -v
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cJ1 MN- "4 - -
w 'WSW -4 11. Were you or your partner using any form of birth control when you became pregnant the first time?
1. NO 2. YES 9 ii.t I , 9. D2K "t What type of birth control were you or your partner using at the time? (CIRCLE ALL THAT APPLY)
01. BIRTH CONTROL PILLS
02. IUD
03. DIAPHRAGM
04. SPERMICIDAL JELLY
05. SPERMICIDAL FOAM
06. CONDOMS
07. CERVICAL CAP
08. CERVICAL SPONGE
09. DOUCHING AS A FORM OF BIRTH CONTROL
10. NATURAL FAMILY PLANNING (BASAL TEMPERATURE AND/O R CERVICAL MUCUS .TEST) T 11. RmTHM
12. TUBAL LIGATION
13. VASECTOMY
14. OTHER (SPECIFY): ______
38 J. MENSTRUAL HISTORY
I'd now like to get some information on your menstrual history.
1. Have you had a period in the past 12 months?
1. NO 2. YES 9D 4/ 9. DK 1.1 About how long ago was your last period?
01. HAVING IT NOW ,>-* SKIP TO 02.<1 MONTH AGO OR SLIGHTLY LONGER THAN 30 DAYS Q #3 BUT STILL REGULARLY MENSTRUATING.
03.>; i. 3 MONTHS AGO
04.>3; S 6 MONTHS AGO
05.>6; < 9 MONTHS AGO
06.:9; S 12 MONTHS AGO
I,
.2. Have your periods stopped temporarily or permanently now?
1. NO 2. YES 4 21 2. DK 2.1. What caused your periods to ,stop?
01. PREGNANCY/LACTATION -> SKIP TO QUESTION #2.3
02. SURGERY (REMOVAL OF UTERUS AND/OR OVARIES)
03. NATURAL (NON-SURGICAL) MENOPAUSE
04. RADIATION OR CHEMOTHERAPY
05. OTHER CAUSE (SPECIFY):
99. DK
2.2 How old were you when you had your last period? w YEARS
39 2.3 Have you experienced or are you experiencing menopause or the change of life?
1. NO 2. YES
9. DK 2.3.1 In what ar did it start? NI 19 3. Have you ever had any of the following operations or procedures? [READ a-h] DK/ I NOT SURE (a) Removal of uterus ...... 1 2 9
(b) Removal of left ovary only...... 1 2 9
(c) Removal of right ovary only...... 1 2 9
(d) Removal of both ovaries... 1 2 9
(e) Tubal ligation (having your tubes tied)...... 2 9 (f) Breast surgery for cysts or benign tumors...... 2. 2 9
(g) Breast surgery for cancer.. 1 2 9
(h).I Any other pelvic surgery... 2. 2 9*
(IF YES, SPECIFY REASON: - ISk.-2-
40 /YnA-srT Co 7)L- e C._OItcbev3 -s 2r ryaoZ1)
CHILD INTERVIEW LOWELL HEALTH STUDY
A. INTRODUCTION
I'd like to complete this information for each of your children one by one, starting with ( 1. How old is (&=E)? ED YEARS
2. RECORD SEX OF (SIM)
1. MALE 2. FEMALE
B. MEDICAL HISTORYI
1. Has this child ever been diagnosed as having epilepsy?
1. NO 2. YES
9. DK 1.1 In what year did this first start? 'I 19 2. Has this child ever been diagnosed as having asthma?
1. NO 2. YES 1. 9. DK 1.1 In what year did this first start? 'I 19
I. 3. Has this child ever had bronchitis three or more times within a single year?
1. NO 2. YES
9. DK 3 In what year(s) did this first happen?
[RECORD ALL YEARS)
19
3.L 19LI
3. 1'9 L
IV 4. Has a teacher or doctor, or another health professional ever told you that your child has a learning disability, hyperactivity, mental retardation, hearing loss, or that your child was not developing properly?
1. NO 2. YES
9. DK [RECORD FOR EACH PROBLEM SEPARATELY]
4.la What problems were you told that your child had?
4.2a In what year did this happen?
19
[ASK: Any other problems?]
2 4.lb What problems were you told that your child had?
4.2b In what year did this happen? I 19 5. Children often get earaches. Has your child had more than two earaches in the past two months?
1. NO 2. YES
9. DK
6. Children also tend to get sore throats. Has you child had more than two sore throats in the past two months?
1. NO 2. YES
9. DK
7. Has your child had frequent colds in the past year?
1. NO 2. YES
9. DK 7.1 About how many has your child had? I WENTER NUMBER
3 8. Has this child ever been diagnosed by a doctor or another health professional as having bone problems, blood problems, lung problems, skin disease, glandular problems or something else which is not one of the common childhood illnesses?
1. NO 2. YES
9. DK [RECORD FOR EACH DIAGNOSIS SEPARATELY]
8.la What was your child diagnosed as having?
8.2a In what year did this happen?
19
{ASK: Any others?]
8.lb What was your child diagnosed as having?
8.2b In what year'did this happen? 19
(ASK: Any others?]
8.1c What was your child diagnosed as having?
8.2c In what year did this happen?
19
[ASK: Any others?]
4 8.1d What was your child diagnosed as having?
8.2d In what year did this happen?
19
[ASK: Any others?]
ft 0a.)-Ce)
INTERVIEWER CHECK:
IS THIS CHILD AGED FIVE OR YOUNGER?
1. NO 2. YES
SKIP TO CONTINUE WITH QUESTION #9 QUESTION #10
9. Does your child regularly attend nursery school, day care, play group, or some kind of child care with two or more other children who don't live with you, either in your home or away from your home?
1. NO 2. YES
9. DK
SKIP TO QUESTION #12
5 10. Is your child able to go to school regularly?
1. NO 2. YES
9. DK I1 SKIP TO QUESTION #11 10.1 Why is your child unable to go to school regularly?
11. Most children get sick and miss some school each year because of illness. Has your child missed school because of illness more often than you consider to be average this past year?
1. NO 2. YES
9. DK 11. 1 About how many days of school has your child missed because of illness since September? [BEST ESTIMATE] w DAYS 1t which limits the 12. Does your child have a health problem or a physical condition amount or type of physical activity he/she can do?
1. NO 2. YES
9. DK 12.1 What health condition limits his/her activity?
9 N?
INTERVIEWER NOTE: THANK RESPONDENT AND END INTERVIEW. CONTINUE WITH THE NEXT CHILD IN THE HOUSEHOLD UNTIL AN INTERVIEW HAS BEEN TAKEN FOR EACH CHILD.
6 PSYCHOLOGICAL STATUS OF THE LOWELL, MASSACHUSETTS, BILLERICA STREET RESIDENTS
Prepared by:
Edwin J. Mikkelsen, M.D. Associate.professor of Psychiatry Harvard Medical School Director, Division of Child Psychiatry Massachusetts Mental Health Center 74 Fenwood Road Boston, Massachusetts 02115
January 25, 1989 TABLE OF CONTENTS
Page Introduction and Methodology ...... 1 Toxic Exposure as Disaster ...... 3 The Evolution of Toxic Disasters .. .. 7
Toxic Disasters Create Psychological Str ess 12 Toxic Contamination is Stigmatizing 19 Toxic Disaster Disrupts Its Victims' Fundamental View of the World: No Safe Place ...... * ... 21 Concern for Health and Reassessment of Old Health Problems ...... * ... 28
Distrust of Authority and Loss of Trust * . . . 35 Anxiety and Depression ...... 48 Relocation ...... 59 Bibliography ...... 62 IFOR WOMEN ONLY
H. REPRODUCTIVE HISTORY
Now we need to ask questions concerning any pregnancies and contraceptive use.
1. Have you ever taken any form of birth control pills?
1. NO 2. YES
9. DK 1.1 As best as you can remember, I'd like to know all of the specific years or time periods when you used birth control pills, and the brand you used. 4 2,- DATES BAND NAME
a. 19 to
b. 19 to
c. 19 W tE I d. 19 to . 19 to
PROBES: How old were you when you began taking birth control pills?
Did you take any others?
30 2. Have you ever used an IUD?
1. NO 2. YES
9. DK 2.1 As best as you can remember, I'd like to know all of the specific years or time periods when you used an IUD and the brand you used.
DATES BRAND NAME a. 19 to
b. 19 to
c. 19 to
d. 19 to
6. 19 to-
fROBES: How old were you when you first began using an IUD?
Did you use any others?
3. Have you ever tried to conceive a child for a period of 12 months or more and been unable to get pregnant?
1. NO 2. YES
9. DK SKIP TO Q * 4.1
31 4. Have you ever been in a relationship where you were having intercourse regularly (on a .weekly basis) without using birth control for a period of 12 consecutive months or more without conceiving?
1. NO 2. YES
9. DK 4.1 How old were you when this first happened?
4o d YEARS 4.2 How long did this first episode continue for?
ED MONTHS OR ED YEARS
4.3 Were you or your partner ever treated by a health professional for this?
1. NO 2. YES 14.a As best' as you can remember, I'd like to'know what types of treatments were prescribed for you and/or for your
4.3b What was the outcome of the treatments?
I
SKIP TO QUESTION #5
4.4 Did you or your partner ever discuss this with a health professional or have any testing to determine why you did not conceive?
1. NO 2. YES
4.4a What types of tests did you and your partner have?
I 32 5. Have you ever become pregnanc?
1. NO 2. YES
9. DK 5.1 Are you currently pregnant?
1. NO 2. YES
SKIP TO 9. DK 5.1 a What month of the pregnancy are you in? MENSTRUAL HISTORY PACE 39 4, MONTH WEEKS
5.2 Altogether, how many times (including this pregnancy) have you ever been pregnant?
TIMES
INTELVIEWEP NOTE:
IF CURRENTLY PREGNANT EL THE FIRST TIME, SKIP TO MENSTRUAL HISTORY SECTION.
GO TO PREGNANCY HISTORY AND RECORD PREGNANCIES UNTIL YOU REACH THE ENTERED ABOVE
33 ,.)a ir IW? JC/?r / f Q &-E99roUC,91A,- eegii y
I. PREGNANCY HISTORY
I'd now like to ask you a series of questions about your pregnancy.
1. In what year did you become pregnant for the first time? 19 YEAR 99 DK
2. How long did the pregnancy last? W yEEKS 99 DK
3. What was the outcome of this pregnancy?
1. MISCARRIAGE (SPONTANEOUS ABORTION)- > SKIP TO QUESTION *9
2. ELECTIVE ABORTION GO TO NEXT PREGNANCY 3. ECTOPIC PREGNANCY
4. STILL BIRTH - SKIP TO QUESTION #4.2
5. LIVE BIRTH
INTERVIEWER NOTE: FOR MULTIPLE BIRTHS (TWINS, TRIPLETS, ETC.) RECORD FOR EACH CHILD.
4. Is this child still alive?
1. NO 2. YES 9D 9. 12K SKIP TO QUESTION #5
4.1 I need to ask you just a few more questions about the child. First of all what was the cause of death of your child?
4.2 When did the child die? I need the month and year.
19W 9999 DK
MONTH YEAR
34 4.3 died.I also need to know the city or town and state where the child
CITY >TOWN STATE
(IF THE DEATH DID NOT OCCUR IN UNITED STATES, ASK:]
4.4 I need to know the city or town and country where the child died.
CITY / TOWN . COUNTRY
5. Is/was this child male or female?
1. MALE 2. FEMALE 3. DK
6. How much did the child weigh at birth?
9999 DK
POUNDS OUNCES
35 7. Did this child have any birth defects or abnormalities when s/he was born?
1. NO 2. YES
9. DK 7.1 Please describe the birth defect or abnormality. (Any others?)
7.2 Could I please have the name, address, city, scate and zip code of the physician who diagnosed your child's abnormality or handicap, and the hospital at which the diagnosis was made?
NAME OF DOCTOR
ADDRESS
CITY STATE ZIP
NAME OF HOSPITAL
ADDRESS
CITY STATE ZIP NI 8. Was this a forceps delivery?
1. NO 2. YES 9. DK
36 9. Did you smoke at all during this pregnancy?
1. NO 2. YES
9. DK 9.1 How many cigarettes per day on the average did you smoke during this pregnancy? WE CIGAETIES PEL DAY 99 DK 9.2 How long did youoke during your pregnancy?
days , we mo1%
OR OR f
10. Did you drink alcoholic beverages at all during this pregnancy?
1. NO 2. YES DK J, 9. DEC 10.1 About how often did you drink alcoholic beverages on the average during this pregnancy?
1. Lass than once a month
2. Less than once.a week 3. 1 or 2 days a week
4. 3 or 4 days a week 5. 5 or more days a week 9. DK
37 2. Have you ever had a job which exposed you to any of the following? [READ a-j]
2.1 (FOR EACH YES, ASK: Over the entire time you were exposed, would you say you were exposed to this rarely, sometimes, or often?
2. 2.1 NO YES DK RARELY SOMETIMES OFTEN
a. Smoke, fumes, or vapors...... 1 2 9 1 2 i 3 b. Pesticides or herbicides...... 1 2 9 1 2 3
c. Irritants to your eyes or nose...... 1 2 9 1 2 3 d. Asbestos...... 1 2 9 1 2 3 e. Beryllium...... 1 2 9 1 2 3 f. Radiation...... 1 2 9 1 2 3 g. Sandblasting, silica, rock crushing, drilling or tale.... 1 2 9 1 2 3 h. Solvents or degreasers such as Pere or Trichlor...... 1 2 9 1 2 3 i. Lead...... 1 2 9 1 2 3 j. Other metals such as mercury, cadmium, or arsenic...... 1 2 9 1 2 3
3. Have you ever had a job which included doing welding or soldering?
1. NO 2. YES
9. DK
4. Have you ever had a job where your used vibratory equipment such a jackhammer?
1. NO 2. YES
9. DK
11 D. LIFESTYLE SECTION
This next section asks several questions about lifestyle habits.
I. LIFESTYLE:ALCOHOL
1. On the average, do you drink alcoholic beverages:
ff 1. Daily;
SKITO 2. At least once a week;
3. At least once a month;
4. Less than once a month; or
5. Not at all 9. DK
1.1 Have you ever drunk any alcoholic beverages?
1. NO 2. YES
SKIP TO SECTION II PAGE 16
2. Thinking back over the past month'(the past thirty days), on how many days did you have any beer, wine or liquor? DAYS
12 3. How often do you usually drink beer?
0. Never 1. Less than once a month, 4, 9. DK 2. Less than once a week, 3. 1 or 2 days a week,
4. 3 or 4 days a week, or SKIP TO QUESTION #4 5. 5 or more days a week.
3.1 Thinking of all the times you have had ha recently, when you drink agg. how many do you usually drink each time?
BEERS
3.2 When you drink bar, what is the most you drink? BEERS
3.3 About ha often do you drink this much his?
1. Less than once a month,
2. Less than once a week,
3. 1 or 2 days a week,
4. 3 or 4 days a week, or
5. 5 or more days a week.
13 4. How often do you usually drink wine, or a punch containing wine?
0. Never 1. Lass than once a month, '41 9. DK 2. Less than once a week,
3. 1 or 2 days a week,
4. 3 or 4 days a week, or SKIP TO QUESTION *5 5. 5 or more days a week.
4.1 Thinking of all the times you have had rint recently, when you drink yinl, how many glasses do vou usually drink each time?
GLASSES
4.2 When you drink xjgj, what is the most You drin?
GLASSES
4.3 About how often do you drink this much ulna?
1. Less than once a month,
2. Less than once a week,
3. 1 or 2 days a week,
4. 3 or 4 days a week, or
5. 5 or more days a week.
14 5. How often do you usually have drinks containing liquor (such as martinis, manhactans, highballs, or straight drinks)?
0. Never 1. Less than once a month,
9. DK 2. Lass than once a week,
3. 1 or 2 days a week,
4. 3 or 4 days a week, or SKIP TO QUESTION *6 5. 5 or more days a week.
5.1 Thinking of all the times you have had liuer recently, when you have drinks containing liguor, how much do you usually drink? DRINKS
5.2 When you have drinks containing liquor, what is the most vou drink?
DRINKS
5.3 About how often do you drink this much liauor?
1. Less than once a month,
2. Less than once a week,
3. 1 or 2 days a week,
4. 3 or 4 days a week,
5. 5 or more days a week.
6. Has there targ been a time in your life when you felt you had a drinking problem?
1. NO 2. YES
9. DK
15 II. LIFESTYLE: TOBACCO AND OTHER
1. Do you:
A. smoke cigarettes? 1. NO 2. YES 9-. DK
B. smoke cigarillos? 1. NO 2. YES 9. DK
C. smoke a pipe, cigars, or 1. NO 2. YES 9. DK chew tobacco?
IF NO TO ALL IF YES TO ONLY IF YES TO MORE THAN OF A THRU C ONE OF A THRU C ONE OF A THRU C
1.1 Which do you do most often? (CIRCLE ONE]
1. Smoke cigarettes?
2. Smoke cigarillos?
3. Smoke a pipe?
4. Smoke cigars, or
5. Chew tobacco?
(REFER TO MOST FREQUENT ABOVE)
1.2 During most of the time since you started, ven you smoke/chew , about how many do you smoke/chev in a day (cigarettes. pipefuls, plugs)?
UNITS 999 DK
1.3 How old were you when you first smoked/cheved?
99 DK
1.4 Have you tried to quit in the past 12 months?
1. NO 2. YES 9. DK
SKIP TO QUESTION *3
16 I 2. Have you ever smoked cigarettes, cigarillos, a pipe, cigars, or chewed I tobacco? 1. NO 2. YES I 9. DK 2.1 Which did you do most often? [CIRCLE ONE]
1. Smoke cigarettes, I SKIP TO SECTION E 2. Smoke cigarellos, PAGE 18 .3 3. Smoke a pipe, 4. Smoke cigars, or .3 5. Chew tobacco? I [REFER TO HOST FREQUElT ABOVE] 2.2 During most of the time when you smoked/chewed about how many did you smoke/chew in a day? (cigarettes, 41 pipefuls, plugs)? UNITS I 2.3 In what year did you first smoke/chew? '1 19 99 DK I 2.4 How old were you when you stopped smoki.ngcheing tobacco? YEARS OLD 99 DK 4,'
3. Over your entire lifetime, for how long have you smsked/chewed altogether? .5 (BEST ESTIMATE] I WE CW MONTHS R YEARS 999 DK .3 I (I
I 17 I 4~ (CO~ E. RESIDENTIAL HISTORY I I PC 1. Next, we're interested in all the places you have sa lived, from the time you ci were born until now. a. Let's begin with the year of your birth. In what year were you born? I 19
.3 b. What was your street address, the city or town, and the state (country) where you lived? I c. In what year did you move from there? I (REPEAT UNTIL YOU REACH PRESENT ADDRESS] a/c b 41 BIRTH/MOVE YEAR STREET ADDRESS, CITY/TOWN, STATE
I 19 I I 19 0~ 19
0' I 19
4' I 19 43
I is I STREET ADDRESS, CITY/TOWN, STATE SIRTH/MOVE YEAR
19W --
19W -
19W -
19 --
19
19
19
19
19
19 -
19 STREET ADDRESS, CITY/TOWN, STATE BIRTH/MOVE YEAR
19W
-I 19W
19
19
19 -
19
19
19
19
19
20 STREET ADDRESS, CITY/TOWN, STATE BIRTh/MOVE YEAR
19W -
19
19W ---
19 -
19 -
19
19
19
19 -
19 -
21 SF.OPINION - INDIVIDUAL j
These next questions are about the air and water in the Billerica Street neighborhood.
1. We would like to know about the drinking water. Did you ever notice an unusual taste or small in your water (there)?
1. NO 2. YES
9. DK
2. Did you ever feel ill or have a health problem that you believe was caused by the drinking water (there)?
1. NO 2. YES
9. DK
3. What about the air (there) - did it ever have an unusual or unpleasant odor?
1. NO 2. YES 4. 9. DK 3.1 Could you please describe it? -3.1 (&) I9c, DeScneh.&-,
3.2 Did this happen often, occasionally, or only once or twice? 1. OFTEN
2. OCCASIONALLY
3. ONCE O TWICE
22 3.3 Was the odor very strong, somewhat strong, or not very strong?
1. VERY STRONG
2. SOMEWHAT STRONG
3. NOT VERY STRONG
3.4 Were there particular weather conditions under which you noticed this odor more often?
1. NO 2. YES
9. DK 3.4.1 What were they?
I c-I Conc~tk#:A,
4. Did you ever feel ill or have a health problem that you believe was caused by the air?
1. NO 2. YES
9. DK
23 G.HOUSEHOLD INFORMATION
II.FOR THOSE NOT CURRENTLY LIVING ON BILLERICA STREET.
1. When you lived on Billerica Street, did you live in a single family house, a two or three family home, an apartment or flat, or something else?
1. SINGLE FAMILY HOUSE
2. TWO OR THREE FAMILY HOME
3. APARTMENT/FLAT
4. SOMETHING ELSE (SPECIFY):
2. When you lived on Billerica Street, did you drink only tafLfwa, only water you buy or brint home in bottles, or both tan water and other water?
1. ONLY TAP WATER 2. ONLY OTHER WATER YOU BOUGHT OR BROUGHT HOME IN BOTTLES.
3. BOTH TAP WATER AND OTHER WATER.
2.1 Why did you not just drink tap water?
2.~~ 0-4~
S"2A LAo
27 3. During the time you lived on Billerica Street up to the present, have you had any dogs?
1. NO 2. YES 9. DK 31 3.1 Have you had any dogs die during that time?
1. NO 2. YES
9. DK 3.la How many? w DOGS 3.lb Did your dog(s) die of an illness, other than old age or an accident?
1. NO 2. YES (RECORD FOR EACH-UP TO 3 MOST RECENT) 9.
FOR WOMEN, SKIP TO SECTION H, 3.1.c.1 What kind of an illness was PAGE 30. IA it? M, THANK R AND END INTERVIEW
3.1.d.1 In what year did that occur? w YEAR 3.1.c.2 What kind of an illness was it?
3.1.d.2 In what year did that occur? w YEAR
28 3.1.c.3 Wat'kind of an illness was it?
3.1.d.3 In what year did that occur?
WE YEAR
FOR WOMEN, SKIP TO SECTION H, PAGE 30. M ME, THANK R AND END INTERVIEW
29 NEW ENGLAND RESEARCH INSTITUTE, INC.
November 16, 1988
Dr. David Ozonoff Boston University School of Public Health 82 East Concord Boston, MA 02118 Dear Dr. Ozonoff: The medical examinations for the Lowell Project have been completed. Enclosed please find all of the signed consent forms and skin test results. All forms except for the medical record request and Framingham Heart Study consent forms are the oriainal conies. The forms are grouped according to resident. Other originals enclosed are the following: * the findings and report from the State Laboratories; * the final report from Dr. Bernardo; and * a list of priority pollutants supplied by DEQE. Please feel free to call me at 923-7747 if you have any questions. Sincerely,
Cheryl Caswell Project Director
9 Can Slet utuown. Masadwes 02172 1617) 923-7747 8 () T () \N U \ [ \ E R , [ T M E D 1 C \, L C E N F E R
. L I L L , 11 1 , , F I L 1 1 - - I .. L .-I
Environmental Boston University Health Section David M. O:onotf. N 0. N H Talbot 3C Chief School of 80 Fast Concord Street John D. Croopman, PhD, Boston, Massachustts Deputy Chief Public Health 02118-2394 in the School of Medicine 617 638-4620
August, 1988
Dear Medical Records Personnel,
Enclosed please find an authorization form for the release
of all medical information on
Please mail the information to:
Dr. David Ozonoff Attn: Dr. Sheila McGuire New England Research Institute 9 Galen Street Watertown, MA 02172
Please ca-ll my assistant Dr. Sheila McGuire at 923-7747 if you
have any questions.
Thank you in advance for your cooperation in this matter.
Sincerely,
David Ozonoff, M.D. LOWELL HEALTH STUDY
A. GENERAL HEALTH SECTION
First, I have some general health questions to ask you.
1. Would you say your health in general is:
1. Excellent 2. Very good 3. Good 4. Fair, or 5. Poor 9. DK
2. Compared with other people your own age and sex, would you say your health is:
1. Better than most,
2. About the same, or
3. Worse than most
4. DK
3. During the past two weeks have you seen or talked to a health professional concerning a problem with your physical or mental health?
1. NO 2. YES
9. DK
4. In the past 2 weeks, have you had any illness, accident or injury which has restricted your usual activities?
1. NO 2. YES
9. DK 4.1 How many days altogether were your usual activities restricted by illness, accident or injury in the past 2 weeks?
DAYS 4.2 What was the reason (or reasons) for this limitation?
(C aoo13 1 5. I will read you a list of common problems which affect us from time to :ime in our daily lives. Thinking back over the past six months, have you been bothered by any of the following?
FOR EACH YES, ASK:
5.1 Did you have this symptom once or twice, three or four times, or five or more times?
5.2 Did you see a doctor or another health care provider about the problem?
5. 5.1 5.2 ONCE/ THREE/ 2K ICE Mlf E9 MJ a. Wheezing or tightness in your throat......
b. Chest pain......
c. Diarrhea ......
d. Constipation ......
e. Shortness-of breath...
f. Rash or other skin irritation...... 1 g. Sore throat...... I
h. Swollen glands...... 1
i. Nausea or vomiting.... 1
j. Loss of consciousness or blackouts...... 1 2 9 2 3 1 2 9
k. 'Pins and needles, or numbness in your fingers or toes...... 1 2 9 2 3 1 2 9 I IF YES TO ANY. ASK: I Why do you think you've had these problems lately? U 5.3 c4-ic GA-N LeaA, Ccnrelntrd LXzr7 A _/nr->7Y
Ui) LOS-l 'I C39 3h 9cc- I, U 2 I 6. Have you had any of these other symptoms in the cast six months? [READ a - j
FOR EACH YES, ASK:
6.1 Did you see a doctor or another health care provider about the problem?
6. 6.1 SAW DR.
a. Irritation or burning in your eyes or nose...... 1 2 9 1 2 9 b. A cough lasting two weeks or more... 1 2 9 1 2 9 c. Irregular heartbeat or a thumping- pounding sensation in your chest not due to exercise...... 1 2 9 1 2 9 d. A weight loss of at least 10 pounds...... 1 2 9 1 2 9 e. Always feeling tired or fatigued.... 1 2 9 1 2 9 f. Nervousness...... 1 2 9 1 2 9 g. Acne...... 1 2 9 1 2 9 h. Unusual color in your urine...... 1 2 9 1 2 9 i. Extremely easy bruising...... 1 2 9 1 2 9
J. Unusual bleeding...... 1 2 9 1 2 9
7. In the past six months, have you seen a doctor or another health professional because of persistant colds?
1. NO 2. YES
9. DK
7.1. In the past six months have you considered seeing a doctor or another health professional because of persistent colds?
1. NO 2. YES
9. DK
3 8. In the past six months, have you seen a doctor or another health professional because of headaches?
1. NO 2. YES
9. DK SKIP TO Q#9 Il 8.1 In the past six months have you considered seeing a doctor or another health professional because of headaches?
1. NO 2. YES
9. DK
9. In the east six months, have you had a health symptom or problem that I haven't mentioned that made you see or consider seeing a doctor or other health professional?
1. NO 2. YES (RECORD FOR EACH SYMPTON OR PROBLE)
9. DK 9.La What was the symptom or problem?
9.2a Did you have this symptom:
1. Once or twice,
2. Three or four times, or
3. Five or more times?
9.3& Did you see a doctor or another health professional because of this symptom or problem?
1. NO 2. YES 9. DK
[ASK: Any others?]
4 9.lb What was the symptom or problem?
9.2b Did you have this symptom:
1. Once or twice,
2. Three or four times, or
3. Five or more times?
9.3b Did you see a doctor or another health professional because of this symptom or problem?
1. N0 2. YES 9. DK
{ASK: Any others?]
9.lc What was the symptom or problem?
9.2c Did you have this symptom:
1. Once or twice,
2. Three or four times, or
3. Five or more times?
9.3c Did you see a doctor or another health professional because of this symptom or problem?
1. NO 2. YES 9. DK
[ASK: Any others?]
5 9.1d What was the symptom or problem?
9.2d Did you have this symptom:
1. Once or twice,
2. Three or four times, or
3. Five or more times?
9.3d Did you see a doctor or another health professional because of this symptom or problem?
1. NO 2. YES 9. DK
10. In the past six months, have you seen a doctor or other health professional for medical care or advice of any kind (other than what we've already discussed)?
1. NO 2. YES
9. DK 10.1 What was the reason you went for the most recent time?
10.2 Anything else?
1 .(-) . LZ
V
6 11. In the past six months, have you been hospitalized for at least one overnigh: for any reason?
1. NO 2. YES
9. DK 11.1 How many different times were you hospitalized? w TIMES [RECORD FOR EACH HOSPITALIZATION]
11.2a What were you hospitalized for the first time?
11.2b What were you hospitalized for the second time?
11.2c What were you hospitalized for the third time?
11.2d What were you hospitalized for the fourth time?
11.2a What were you hospitalized for the fifth time?
11.2f What were you hospitalized for the sixth time?
I,
7 12. Next, I need to know about any pills or medicines you are currently taking which are prescribed by your doctor. Let's go through this list I have one-by-one.
IF YES TO ANY, LIST MEDICATION PRESCRIPTION DRUGS NAME FROM LABEL IN THE SPACES /2, 24-- PROVIDED. RELATE TO CONDITIONS RELATED IF POSSIBLE 2- a- - CONDITION MEDICATION DOSAGE IF KNOWN
a. Are you now taking any medication, pills, or other medicines to thin your blood (anticoagulants)?
b. Any androgens, estrogen, or bromocriptine?
c. Anything for your heart or heart beat including pills or paste patches?
d. Anything for ulcers like Tagamet?
e. Any medications for cholesterol or fats in your blood?
f. Blood pressure pills?
g. Thyroid pills?
h. Insulin or pills for sugar in your blood?
i. Medications for a nervous condition such as tranquilizers, sedatives, sleeping pills, or antidepression medication?
j. Are there any other prescribed up97% ;L UPr7 1). medications you are now taking that I haven't asked you about? 7s4f i5 t_"/cnse5
Now I'll cover over-the-counter, PRSECRIPTTON DRUCS non-prescription medicines that you are currently taking: RELATED CONDITION MEDICATION DOSAGE IF KNOWN
k. Are you taking any over-the-counter U st10 X medications for pain? ga senusf%
1. Anything for problems sleeping? m. Anything for problems with your bowels? n. Any other non-prescription medicines?
8 [3. MEDICAL HISTORY
These next questions ask about health problems you may have .=sa had in your life.
1. Has a doctor or other health care professional ever told you that you have: (READ a-1]
NO YES DK
a. Anemia...... 1 2 9
b. Other blood problems (SPECIFY]: ...... 1 2 9
c. Kidney problems...... 1 2 9
d. Lung or respiratory problems...... 1 2 9
e. Neurologic or nervous system problems.. 1 2 9
f. Skin disease or skin allergies...... 1 2 9
g. Diabetes or high blood sugar...... 1 2 9 h. High cholesterol...... 1 2 9
i. Hypertension or high blood pressure.... 1 2 9 j. Liver problems such as cirrhosis, hepatitis, or jaundice...... 1 2 9 k. Stomach problems or digestive disease.. 1 2 9
1. Heart trouble, such as a heart attack, angina, irregular heart beat or something else [SPECIFY]: ...... 2 9
2. Has a doctor or other health professional ever told you that you had cancer?
1. NO 2. YES
9. DK 2.1 What kind of cancer?
2.2 In what year were you told that?
19
9 C. EMDLYMENT HISTORY
We'd now like some information on your employment status.
1. Are you currently working at a job for pay. going to school, or doing something else?
1. SOMETHING ELSE 2. GOING TO SCHOOL 3. WORKING AT A JOB FOR PAY
1.1 What are you doing?
01. RETIRED 02. LAID OFF I, 03. LOOKING FOR WORK SKIP TO QUESTION #2 04. KEEPING HOUSE
05. MEDICAL LEAVE
06. DISABLED
07. VOLUNTEER WORK
08. OTHER (SPECIFY]:
4 IF RESPONDENT IS ON A MEDICAL LEAVE, ASK:
1.2 Why are you on a medical leave?
1.3 When did you first go on medical leave? (-' A-lo1$ 2 I A1)
10 NEW ENGLAND RESEARCH INSTITUTE, INC.
CONSENT FORM I have been asked by a field technician from the New England Research Institute to participate in a health interview. I understand that I will be asked to answer health questions to assist in evaluating the medical background of the residents of 91-97 Billerica Street, Lowell, Massachusetts. I have agreed to answer questions about my health status and health related behaviors. I understand that I am free to refuse to answer any question, and that I may stop participating in the study at any point. All medical information and other personal data obtained in this interview shall be kept confidential in accordance with the laws and regulations of the Commonwealth of Massachusetts relating to confidentiality and privacy. However, it is possible that this material may subsequently be subpoenaed in any legal action and that the interviewer may also be subpoenaed, accordingly strict confidentiality cannot be ensured. In the event this material is subpoenaed, I will be notified in sufficient time to seek to have the subpoenae quashed. All of my questions about the health interview have been explained to my full satisfaction. If I have any questions regarding this study or my participation in it either now or at any time in the future, I am free to contact the Project Director, Ms. Cheryl Caswell at (617) 923-7747.
Respondent signature Date
Field Technician signature Date
ICaien tree: Vatero'nwr IEaue:2 n[4- NEw ENGLAND RESEARCH INSTITUTE, INC.
LOWELL PROJECT:WRITTEN RELEASE
AUTHORIZATION FOR DISCLOSURE OF MEDICAL INFORMATION
Name: Hospital Number:
Address: Date of Birth:
I hereby authorize the Hospital/Clinic to release information from my medical records to:
New England Research Institute, Inc. 9 Galen Street Watertown, MA 02172
This authorization covers all medical and/or psychiatric treatment, history of illness or related information, including any treatment for alcohol and/or drug abuse. This authorization shall remain in effect as long as necessary (up to one year) to respond to the attached request. I also understand that I may revoke this authorization at any time.
This authorization expires one year from date signed.
Signature of Patient Date
Authorization received by Office
9 Caien kreet Wacertown. MIassachusets 2172 [01 ',131-7747 Neurologic Testing Fact Sheet The purpose of this study is to evaluate the neurological health effects that might have resulted from exposure to chemicals found to be in your residential environment. We are asking you to participate in some medical tests which will involve approximately 7.5 hours of your time and will be scheduled over two days. The testing will be performed at University Hospital of Boston University Medical Center. The testing will involve: 1. A medical neurological examination. This will be performed by a neurologist and will take approximately 20 minutes. This exam is a routine clinical exam to test your reflexes, touch sensation and muscle function. If necessary, the neurologist or a trained environmental neurology specialist may want to ask you to clarify some of the information given on your questionnaire. 2. Comprehensive testing to assess memory, perception, mood states and manual dexterity. This will be performed by a neuropsychologist and a trained testing technician and will take approximately 5 6 hours over one day. 3. Nerve conduction and special reflex studies. The test will be performed by a trained physician and the series of different tests will take approximately 1 hour. These are standard clinical tests. The tests of nerve conduction measure the speed with which an impulse travels along a nerve. The tests of the reflex latencies measure the time it takes an impulse to travel from a nerve at the skin surf ace to the central nervous system and back again through a circuit type pathway to cause a muscle response. The test may cause a brief twinge of sensation similar to a pinch or mild electrical shock, but it does not last. There is no risk of damage to the nerve. You are free to discontinue participation in this study at anytime. All medical information and other personal data obtained in this evaluation shall be kept confidential in accordance with the laws and regulations of the Commonwealth of Massachusetts relating to confidentiality and privacy. However, it is possible that this material may subsequently be subpoenaed in any legal action and that the examiners may also be subpoenaed, accordingly strict confidentiality cannot be ensured. In the event this material is subpoenaed, you will be notified in sufficient time to seek to have the subpoena quashed. If you have any questions regarding this study or your participation in it either now or at any time in the future, please feel free to contact the Study Coordinator, Ms. Susan P. Proctor, M.S. at (617) 638 5350. If any problems arise as a result of your participation in this study, including study related injuries, please call the principal investigator, Robert G. Feldman, M.D. at 638 5350.
I have read the above description and fully understand the description of all the procedures and their benefits and risks. All my questions have been answered to my satisfaction. Furthermore, I have been assured that any future questions I may have will also be answered by a member of the study team. I understand that I will receive a copy of this form. I understand that in the event any injury occurs resulting from the medical procedures, medical treatment will be available at University Hospital. However, no special arrangements will be made for compensation or for payment for treatment solely because of my participation in this study. I understand that this paragraph is a statement of University Hospital's policy and does not waive any of my legal rights. I understand that I am free to withdraw my consent and discontinue participation at any time without prejudice. I voluntarily consent to be a study subject in this study.
DATE SIGNATURE PATIENT INFORMATION\CONSENT FORM DELAYED HYPERSENSITIVITY SKIN TESTS
You will be undergoing skin tests to help evaluate your immune system. Skin testing is done by injecting a small volume (0.1cc, or 1/50 of a teaspoon) of a sterile extract of a known substance into the skin (usually on the forearms) and examining the infection site for a measurable response 48 to 72 hours later. A repeat set of skin tests may be needed. You will be tested with several agents to which your immune system may have been exposed at some time in the past. These will include non- infectious extracts of several fungi (molds), mumps, tuberculosis, and appropriately, you will experience a local reaction at the skin test site that can be measured. Most normal individuals will respond to at least one of these agents. This testing is done in a standardized fashion, using standard agents, and is not investigational. The risks from skin testing are few, and include the possibility of slight discomfort and bruising at the site of the injections, as well as discomfort from a reaction site should the reaction be positive. The latter consists of swelling, redness, pain, and possibly fever or, rarely, a later infection of the reaction site by bacteria. Bacterial infection may require antibiotic therapy. In addition, the site of a positive reaction may leave you with a small scar.
I have been fully informed of the procedures described above with their possible risks and, with a full understanding of what is involved, I hereby agree to undergo the skin tests to help evaluate my immune system. I do so voluntarily, with knowledge that I have been free to refuse to participate and that I may withdraw consent and discontinue participation at any time. All medical information and other personal data obtained in this evaluation shall be kept confidential in accordance with the laws and regulations of the Commonwealth of Massachusetts relating to confidentiality and privacy. However, I also understand it is possible that this material may subsequently be subpoenaed in any legal action and that the examiner may also be subpoenaed, accordingly strict confidentiality cannot be ensured. In the event this material is subpoenaed, I will be notified in sufficient time to seek to have the subpoenae quashed.
Date Participant
Date Legal Guardian (if under 16) LOWELL PROJECT \ FRAMINGHAM HEART STUDY CONSENT FORM Permission for Interview, Examination, Tests, and Record Review
I understand that the purpose of this study is to collect information to aid in the understanding of several major diseases, especially heart and vascular diseases. I, hereby, authorize the Framingham Heart Study to 1) interview me with respect to my past and present medical history, the medial history of my family, and other information such as occupation, education, diet history, home address, and place of birth, 2) perform procedures such as might be done in my physician's office (examples: weight, blood pressure, respiratory) , 3) obtain samples of blood and urine, 4) review past and future hospital, tumor registry, and physicians' medical records. In addition, I authorize a complete cardiological examination such as a) resting electrocardiogram b) electrocardiographic monitoring and c) standard pulmonary function testing. I also understand that I will be asked to complete some additional questionnaires regarding my food habits and return them to the Framingham Heart Study. In addition, I may be telephoned later to obtain additional information regarding my nutritional habits. I know that blood will be drawn from my arm and that there may be some temporary discomfort as the needle is inserted. I have been told that the risks associated with the blood drawing procedures include a small chance of bruising and an even smaller chance of infection. All medical information and other personal data obtained in this evaluation shall be kept confidential in accordance with the laws and regulations of the Commonwealth of Massachusetts relating to confidentiality and privacy. However, it is possible that this material may subsequently be subpoenaed in any legal action and that the interviewer may also be subpoenaed, accordingly confidentiality cannot be ensured. In the event this material is subpoenaed, I will be notified in sufficient time to seek to have the subpoenae quashed. All of my inquiries concerning these procedures have been answered. I know that I am free to withdraw my consent at any time and to discontinue participation for any or all of the procedures in the project or activity at any time. I also understand that no charge is to be made for any part of the examination. I also understand that I will be asked to give my social security number for the purpose of locating me in future years, and that this disclosure of the social security number is voluntary.
I understand that in the event that physical injury occurs as a result of any of the procedures, prompt medical treatment will be provided according to usual and customary standards of medical practice. However, no special arrangements will be made for compensation or for payment of treatment solely because of my participation in this study. I understand that this paragraph does not waive any of my legal rights.
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....-r--- ..... - .~~~ ~ ~- 'CA'C . APPENDIX B TO: BLOOD LAB PERSONNEL FROM: DR. SHEILA MCGUIRE 731-6705 LOWELL PROJECT COORDINATOR RE: LAB PROCEDURES Six vials of blood will come wrapped in a blue Bioran lab request form. Here is the protocol to handle these six vials:
The two 10 ml red-top vaccutainers 1. Centrifuge the vials for 10 minutes at 2400 RPM.
2. Draw off serum from the two vials with the specially rinsed pipets into the specially rinsed 30 ml Wheaton vials. (Do not allow contact between serum and pipet bulb) 3. Secure Wheaton vials with Teflon-lined caps and label with "PCB analysis", patient ID number, and date. 0 4. Refrigerate samples upright (4 C). 5. Dr. McGuire will pick-up and deliver all samples to State Lab for analysis September 6th. The two 13 ml lavender-ton vaccutainers
1. Do not spin, label with patient ID number and date. 2. Refrigerate one of the vials with the two Wheaton vials. The State Lab will analyze this vial for lead. Dr. McGuire will pick-up and deliver this vial to the State Lab for analysis September 6th.
3. The other vial will be sent to Bioran for CBC with differential analysis. The two 16 ml red-too vaccutainers 1. Spin for 15 minutes, label with patient ID number and date. 2. Rewrap the two vials with one of the 13ml lavender-top vaccutainers in the blue Bioran lab request form and refrigerate. 3. Bioran will analyze for Thiocyanate, IGg, and SMAC. Three 10 ml lavender vaccutainers have been drawn for the FHS to analyze cholesterol and triglycerides. Freeze the aliquot. One 10 ml red-top vaccutainer has also been drawn for the FHS. Freeze the aliquot. APPENDIX C NEW ENGLAND RESEARCH INSTITUTE. INC.
November 2, 1988 Dear Dr.
One of your patients, , has been a participant in a health assessment project conducted by the Massachusetts Department of Public Health. Your patient was examined by several physicians and health professionals. has requested that all raw data be sent to you. At a later date she will arrange for an appointment with you to discuss the information. New England Research Institute has been coordinating this project for the State Department of Public Health. We are providing you with the information on the results of the lead and PCB testing of the blood done by the Massachusetts State Laboratory, the bloodwork done by Bioran Laboratories, and the outcome of the skin tests performed by Dr. John Bernardo from the Allergy Clinic at Boston University. If you have any questions call me at (617)-923-7747. Sincerely,
Dr. Sheila McGuire Project Coordinator
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BILLERICA STREET MEDICAL SURVEILLANCE PROJECT FINAL METHODOLOGICAL REPORT December 20, 1988 SUBMITTED TO Dr. David Ozonoff School of Public Health Boston University Boston, Massachusetts 9 Calen Srreet 'VatennW. r 'tassachuset t022 THE BILLERICA STREET MEDICAL SURVEILLANCE PROJECT FINAL METHODOLOGICAL REPORT I. INTRODUCTION The coordination of all data collection, medical records abstraction, and conducting of the baseline in-person interview for the Billerica Street Medical Surveillance Project was directed by the New England Research Institute, Inc. The medical examinations and interviews of the 18 adults and seven children were completed by the six medical and research centers as of October 12, 1988. II. METHODOLOGY A. Overvie The coordination of the study began in May, 1988 with the drafting of consent forms and questionnaires. Medical examinations commenced June 25. In general, the residents were seen by the medical and research centers in the following order: 1. Dr. Edward Mikkelsen, Associate Professor of Psychiatry, Harvard School of Medicine. 2. New England Research Institute (NERI). 3. Department of Neurology, Boston University School of Medicine. 4. Dr. John Bernardo, Allergy Clinic Director, Boston City Hospital. 5. Framingham Heart Study. 6. Dr. John Graef, Lead and Toxicology Clinic Director, Children's Hospital. B. Appointment Schedule In-home Stress Tests Dr. Edwin Mikkelsen, Director of the Division of Child Psychiatry at the Harvard School of Medicine, began his exams Saturday June 25. (See Appendix A for consent form.) The three hour interview was conducted in each resident's home with all household members present. Dr. Mikkelsen completed the interviews of all nine households by Thursday July 21. One of the nine households decided to drop out of the study shortly after this interview took place. Therefore, this was the only test completed on this household. NERI Interview Field Technicians from NERI interviewed the residents regarding their health status and health related behaviors. (See Appendix A for consent form.) The in-home interviews were conducted between July 6 and 25. In addition, the residents gave NERI written permission to obtain all medical record information from the physicians and clinics where they had received any past medical care. (See Appendix A for this consent form.) NERI personnel proceeded to obtain copies of medical records. An accredited record technician reviewed and condensed the findings. This was completed for the eight households on December 19, 1988. All results were forwarded to Dr. Ozonoff by NERI. Neurolocic Examinations Dr. Robert Feldman, Chief of Neurology at the Boston University Hospital, and his staff began their exams Tuesday, July 19. (See Appendix A for consent form.) The testing involved 7.5 hours of the resident's time over the course of two days. The two pregnant residents were advised not to participate in the testing of nerve conduction. Residents number 016 and 018 refused to participate in the testing of nerve conduction. All other neurologic testing was completed by Wednesday, August 3. Immunological Testing Dr. John Bernardo, Director of the Allergy Clinic at Boston City Hospital, also began the immunological testing (a.k.a skin testing) on Tuesday, July 19. (See Appendix A for consent form.) The injection of the sterile extracts and subsequent readings of the injection site were coordinated with the neurologic exams. The two pregnant women chose not to participate. All other skin testing was completed by Wednesday, August 3. Cardiovascular Testing Dr. Joseph Stokes, Director of the Department of Preventive Medicine at the Boston University Medical School, and his staff at the Framingham Heart Study began their exams Tuesday, August 16. (See Appendix A for consent form.) The three hour examinations were conducted at the Framingham Heart Study Clinic. Five residents were examined on days that both echocardiogram technicians were absent from work. Dr. Stokes felt the residents' request that the testing be done in Lowell was not appropriate to the goals of the study. It was explained to the residents that an echocardiogram reveals the size and configuration of the heart. A compromise was reached where the residents agreed to come back if any cardiovascular abnormalities were found. No reappointments were necessary, however. All other cardiovascular examinations were completed by Wednesday, September 28. Laboratory Testing of Blood The blood was drawn from the adult residents by the Framingham examining physicians. (See Appendix B for procedures used.) Bioran Laboratories gave the most competitive bid for the following tests; CBC, SMA, Thiocyanate, and IgG. As part of the Framingham examination, cholesterol and lipid levels were determined by their laboratories. Ralph Timperi, Director of the Massachusetts State Laboratory Institute, agreed to test for PCB and lead levels at no cost. Resident number 018 refused to have any blood drawn. Three residents had an additional vial drawn at a Bioran lab in North Billerica as the original vial had spoiled due to a Bioran error. The blood and serum needed for the PCB and lead testing was transported by Sheila McGuire of NERI to the State Laboratory on September 6 and 28. Children's Examinations The seven residents under the age of seventeen were examined by Dr. John Graef and his staff at the Lead and Toxicology Clinic at Children's Hospital. The first child was seen Monday, September 26. (See Appendix A for consent form.) The six hour examination included a physical, pulmonary function, EKG, skin testing, blood and urine sampling. The last children were seen Wednesday, October 12. III. Dissemination of Information A. Community Meetings The Massachusetts Department of Environmental Quality Engineering sponsored monthly community meetings regarding the Billerica Street, Lowell disposal sites. An official from the Department of Public Health was on hand to report on the monthly progress of the Billerica Street Medical Surveillance Project (a.k.a. the Health Assessment Study). NERI personnel attended the following meetings: March 28; April 11; May 9; June 13; July 11; August 8; September 13; and October 17. B. Release of Uninterpreted Findings Several residents requested that the raw data from each examination and/or test be sent to their personal physician for inclusion in their medical records. A few residents did not have a personal physician, therefore they requested that this information be forwarded directly to their home. NERI disseminated the results of the lead and PCB testing of the blood, the bloodwork completed by Bioran, and the outcome of the skin tests performed by the Allergy Clinic. (See Appendix C for cover letter.) C. Location of the Original Copies of Various Forms NERI sent original copies of all the signed consent forms (except Framingham Heart Study), skin test results, the final report from Dr. John Bernardo, the findings from Bioran, and the findings and final report from the State Laboratory to Dr. David Ozonoff on November 16, 1988. (See Appendix C for cover letter.) The original copies of the medical record release forms were sent to the physician or clinic from which we were requesting the information. (See Appendix C for cover letter accompanying the medical release record release form.) The Framingham Heart Study retained their original consent form. APPENDIX A Fact Sheet-Psychiatric Interview The purpose of the interview is to assess the impact of the toxic contamination and its discovery on the lives of those individuals who live in the immediate area of the incident. In order to do this it is necessary to review the course of each individual's life with respect to their psychological development. Initially interviews will be carried out in the setting of the family. The interviews will be conducted in your homes and will be of a few hours duration. Efforts will also be made to conduct individual interviews. This process is usually somewhat emotionally painful as it may call for the recollection and discussion of past losses, injuries, and events that one would prefer to forget. The interviews should not be seen as therapeutic in and of themselves. All medical information and other personal data obtained in this interview shall be kept confidential in accordance with the laws and regulations of the Commonwealth of Massachusetts relating to confidentiality and privacy. However, it is possible that this material may subsequently be subpoenaed in any legal action and that the interviewer may also be subpoenaed, accordingly strict confidentiality cannot be ensured. In the event this material is subpoenaed, you will be notified in sufficient time to seek to have the subpoenae quashed. I have been fully informed of the procedures described above with their possible risks and benefits and, with a full understanding of what is involved, I hereby agree to participate in the psychiatric interview. I do so voluntarily, with the knowledge that I have been free to refuse to participate and that I may withdraw consent and discontinue participation at any time. I am to receive a signed copy of this Consent Form. Date Participant Date Legal Guardian (if under 16) I have fully explained the purpose and nature of the procedures described above and any risks and benefits which may be involved. I have asked if any questions have arisen and have answered to the best of my ability. Date Investigator Edwin J. Mikkelson, M.D., Director of Child Psychiatry, Massachusetts Mental Health Center, 74 Fenwood Road, Boston 02115 Introduction and Methodology The purpose of this report is to review my findings of the nine families who were found to be living on or near a presumed toxic waste site in Lowell, Massachusetts. [There was one grouping of unrelated individuals.] My interviews were done. in conjunction with a larger study commissioned by the Department of Public Health to investigate the status of their overall health. I accomplished my assessment by interviewing the families in their homes during the summer of 1988. The interviews were semistructured in that I provided an overall framework for the interviews but did not ask a defined set of questions each time. My general intent was to obtain an overview of their psychological status prior to the discovery of the contamination, their emotional response to the discovery and subsequent relocation and their current status post relocation. Working within this general format I posed general questions that would lend themselves to open-ended responses rather than a simple yes or no. I have found this method of asking open-ended questions in the context of a semi-structured interview to be the most effective in obtaining an acurate assessment of the individuals' psychological response while simultaneously obtaining a coherent view of the flow of events as perceived by the individuals which then provides the context 2. for viewing the psychological responses. It was agreed upon at the outset of this project that the findings would be presented in aggregate form to insure confidentiality. I explained this to the individuals at the beginning of each interview when I obtained their written permission to proceed with the interviews. I also explained to them at that time that the interviews were not designed to be therapeutic and should not be presumed to have a therapeutic effect. I further explained that the interviews were not meant to be stressful but that the recollection of unpleasant or traumatic events could be stressful and that I would stop or terminate the interviews without question at any point they requested. Upon completion of the interviews I also made it known to them that if they did subsequently find themselves to be distressed by the interviews that they could call me. I did not receive any such calls and I subsequently heard from Dr. Sheila McQuire of the New England Research Institute, Inc., who had arranged the interview schedule for me, that the general response to the interviews had been positive. In addition to the presentation of my assessment in aggregate form I was requested to prepare a literature review that was relevant to this situation. After careful consideration I have decided to interweave the presentation of my findings with the literature review, as this provides a more integrated and less disjointed document. It also permits the 3. development of themes in a cohesive manner and allows for more immediate comparison of the Lowell residents to individuals who have sustained psychological trauma of a similar nature. Toxic Exposure As Disaster Lazarus and Cohen (1977) grouped environmental stressors with cataclysmic phenomena, events that are "sudden, unique and powerful single life-events requiring major adaptive responses from the population groups sharing the experience." Cat 91] Environmental stressors thus share a foundation with other cataclysmic events such as kidnapping, imprisonment, war, and torture that involve painful and/or harmful situations from which escape is difficult or impossible. My review of the literature suggests that until the late 1970's and early 1980's there is little reported research and clinical observation on the emotional condition of victims of environmental contamination. There is, however, a much richer literature on the psychological effects of natural and some man-made disasters antedating those years. Like the victims of such natural disasters as floods and earthquakes, the victims of man-made disasters experience stress derived from the creation of hardship and disruption of their lives and grief over losses which cannot be restored. 4. [Baum (1983); Barton (1969).] Trauma associated with both natural disasters and human-made disasters affects not only the individuals, but their families and communities as well. [Erickson (1976); Janis (1971).] In natural disasters one of the very significant factors contributing negatively to the emotional condition of the victims is the extent to which they witnessed mutilation of bodies caused by the disaster. [Raphael (1986).] While not outwardly visible, injury by contamination leaves the individual with a sense of intrinsic damage that is psychologically similar to actual disfigurement. Man-made toxic disasters, however, present differences from natural disasters that are salient in shaping the psychological response of the victims: a. Natural disasters usually strike swiftly and sometimes last only minutes (or at least usually for short time periods) after which the worst is usually over. Despite the hardship and necessity for rebuilding, the focus of the disaster is passed. (Baum (1983),] In contrast, most toxic disasters are insidious in nature. The insidious nature of such catastrophes interferes with recognition of the disaster and definition of the full extent of the disaster by the victims and the community at large. This lack of recognition of the disaster significantly contributes to the persistent and pervasive psychological trauma. In her extensive review of the disaster literature, When Disaster Strikes, Beverly has pointed 5. out how psychologically important it is to have an immediate caregiving response on the part of both the immediate community and the larger community. She describes this recognition of suffering as crucial and stresses the importance of its occurring early in the evolution of the disaster or soon after a disaster of rapid onset. Such recognition represents a symbolic empathic message to the victims that their suffering is acknowledged and validated. Whereas public relief agencies in most developed countries are quick to mobilize in response to disaster, in the case of toxic contamination if often takes years before state, county, and responsible environmental agencies even begin to acknowledge that there was in fact a toxic problem at a given location. As Andrew Baum, who has studied the psycholgical impact of the Three Mile Island (TMI) nuclear power plant accident on nearby residents has pointed out, technological accidents involving radiation or toxic substances pose continuing threats. [Baum (1983).] He has noted that victims "fear that their children will be sterile or will develope leukemia, while others fear health effects on themselves. For many, the 'worst',of the accident has been the uncertainty about what may yet happen." As Baum correctly points out, "Technological disasters are not necessarily over quickly, and the point of worst impact may not pass with the event. Perceived threat may continue "indefinitely." Thus, in natural disasters the victims and survivors are known to all within a short period of time, whereas in toxic disasters the true roster of the dead and afflicted may not be known for 6. decades. The knowledge of this fact carries with it its own morbidity. This ongoing fear and dread of the development of future disease is a significant contributor to the ongoing stress that can in turn produce a depressive reaction. b. Toxic disasters are aptly classified as "technological disasters." [Baum (1983).] They involve matters over which people believed they had control. "Power plants are not supposed to crash, and toxic waste facilities are not supposed to leak." [Id.] As Baum accurately states it: "Victimization by technological mishap involves a perceived loss of control over something that once was perceived as controllable, while victimization by natural disaster highlights a perceived lack of control over something that either never was perceived as very controllable or for which controllability was not particularly salient. Loss of confidence in future ability to control technology may result from this and contribute to uncertainty following the disaster. Technological mishaps may therefore generate greater post-accident uncertainty than do natural ones." [Id..] Since many of the health effects of a toxic disaster can take years or generations to appear, such disasters may pose long-term threats to victims' sense of control. Research in which a group of TMI area residents were compared to a control population living near an undamaged nuclear power plant showed that TMI area residents reported greater feelings of helplessness and less perceived control over their environment than did study subjects in the control group. (Davidson, et al., (1982).] 7. a. Man-made disasters differ significantly from natural disasters in that the latter are perceived as "acts of God." whereas the former are seen as the result of intentional, negligent, or even corrupt acts of humans. As man-made, toxic disasters invite attributions of blame. The victims of toxic disasters are likely to develop feelings of distrust and anger toward those responsible for the contamination. [Lifton (1984) (TMI); Levine (1982) (Love Canal); Edelstein (1988) (Legler; Walkill, N.Y.); Reich (1983) (Michigan, consumption of contaminated cattle.)] The anger and bitterness of disaster victims evolves into "a sense of being overwhelmed by the negative and destructive aspects of all human beings" and contributes to the victims' despair. [Lifton (1976).] ...... The Evolution of Toxic Disasters Michael Edelstein has recently published a book, Contaminated Communities, the Social and Psychological Impacts of Residential Toxic Exposure, [hereafter cited as "Edelstein"] drawing upon his extensive experience with victims of toxic disasters in Jackson Township's Legler section, at Love Canal, and at other toxic waste sites in the eastern United States. His book also reviews the research of others on victims of toxic disasters at those sites and at others across the country. Edelstein notes that toxic exposures can definitely 8. be viewed as disasters, and states, "To a much greater extent than with most natural disasters, the facts of toxic disasters are often unclear, making their [residents'] perception of the disaster central to its subsequent effects." He further notes, "Various studies have suggested that human-caused disasters result in greater, longer-lasting and different kinds of stresses than those associated with natural disaster." The stages of toxic disaster set forth by Edelstein, are as follows: Toxic disaster occurs in stages that roughly correspond to those commonly used to describe natural disaster... Pre-Disaster Stages: Origin and Incubation. The originating circumstances for a case of toxic exposure may vary, but there is usually an "incubation" stage, when the community is unaware that the disaster is developing. Therefore, there are no preparations or premonitions (see Baum, et al., 1983). There ar a number of reasons for the failure to predict and recognize an incubating toxic disaster. For the eventual victims, the disaster is likely to be a novel experience, rather than a recurrent one; the unfamiliar circumstances do not trigger suspicion. And because such disasters are not supposed to happen, it is assumed that they won't. Furthermore, pollution is frequently barely detectable, not only in occurrence but also in consequence. The threat may be invisible, and any resulting damage may be hard to relate to the pollution (Miller, 1984; Baum, et al., 1983). The sublety of the clues makes them easy to discount. Finally, it is generally assumed that government is watching out for us. Yet agencies we look to for protection are often not vigilant in monitoring environmental hazards or do not share information. Together, these factors reflect the complexity of ecological and 9. technological problems and the uncertainties involved in toxic disasters that make the risks hard to define (de Boer, 1986; Miller, 1984). Disaster Stages: Discovery, Acceptance, Community Action. Because a toxic disaster strikes gradually and incrementally without people's knowledge, detection of the problem, warning of potential victims, and their perception of threat may occur long after the disaster has struck. Accordingly, much of the initial psychosocial impact is due to the announcement of the disaster and the sharing of information about it. Beliefs formed at this point may persist even in the face of new evidence at a later time. Experts specially trained to measure and detect toxic substances are usually involved in the process of discovery and announcement (Miller, 1984). Victims become dependent upon others to help them understand the situation and to help create solutions. However, because the effects of human-caused disaster may not be readily visible, not only is the occurrence subject to differing interpretations, but key decisions (e.g., regarding testing, protective measures, and remediation) may be based on these interpretations (Miller, 1984; Couch and Kroll-Smith, 1985). Therefore, cohsensus about the cause, course, and possible outcomes of the crisis is less likely than with natural disaster. Furthermore, because there may be no visible damage (Baum, et al., 1983; Couch and Kroll-Smith, 1985), each family is forced to make its own determination of the significance of contamination (Fowlkes and Miller, 1982). The lack of shared beliefs about what has happened opens the way for conflict within the community and between the community and potential helpers (Levine, 1982; and Couch and Kroll-Smith, 1985). Ironically, because they are not anticipated, human-caused disasters are routinely experienced as sudden even when they actually develop gradually (Baum et al., 1983). Barton (1969) notes that while a gradually occurring disaster allows the existing social system to make adjustments, the sudden-onset disaster requires a new process for reducing chaos. Despite the difficulty of accurately identifying the affected area given the pervasiveness of pollution (Miller, 1984), at the 10. earliest opportunity government officials commonly draw boundaries around the area they believe to be affected. Therefore, the boundaries of the disaster are socially clear, even if the criteria for drawing them are scientifically fuzzy. The community defined by the pollution boundaries becomes isolated from its surroundings, not by destruction, but by stigma... Post Disaster Stages: Mitigation and Lasting Impacts. While natural disaster is often of brief duration (Barton, 1969), human-caused disasters such as toxic exposure may be chronic and indefinite (Baum, et al, 1983; Edelstein, 1982). A site may be contaminated so that it will remain unsafe for generations due to the persistence of the toxic hazard; individual effects may also cross generations (Hohenemser et al., 1983). A sense of finality is elusive for the toxi victim (Edelstein, 1982), in part because toxic disasters lack a "low point" from which things would be expected to improve (Baum et al., 1983). Because it is not clear what damage has occured to property or finances, or what long-term health effects may develop, it is difficult to inventory losses. Basic needs such as water may be allocated on an emergency or even permanent basis, but rarely is rescue quickly forthcoming. Helping professionals may not define the events as a disaster to which they must respond. Bureaucrats may have vested interests in not helping in a definitive way. Friends and relatives may not know how to help. As a reult, the affected community is left in a vacuum to fend for itself. Remedy may involve mere mitigation, such as the provision of a new water source or a law suit that produces some form of compensation. But toxic disaster is hard to completely remedy because its impacts are impossible to measure. Much as with the prediction of contamination moving underground, it is difficult to gauge what the genetic implications of toxic exposure will be -- neither of these outcomes can be seen, and the effects may not surface for quite some time. As a result, recovery to a "post-disaster equilibrium" is difficult if not impossible. [Edelstein at 7-9] 11. One could also discern a staged process to the recognition of the problem at Billerica Street. There was a period of growing recognition which was primarily precipitated by a builder's request to construct more units on the land behind the Billerica Street buildings and in front of the river. Some of the Billerica Street residents appeared at the hearings and testified that the land under question was frequently inundated by flooding from the river. Eventually this process led to a closer scrutiny of the land and the realization that there was contamination that might well include the site underlying the Billerica Street units. Many of the residents retrospectively described what they believed to be denial on their part of the mounting evidence that there was significant contamination of the land underlying and immediately surrounding their homes. One individual described their horror when they finally did "wake up to the fact that your home is built on a cesspool of chemicals." Other individuals noted how "At first we didn't want to believe it -- didn't want to have to deal with it." In general, the sentiment expressed by many of the residents was , that it is very hard to admit that you are "living on top of a toxic waste dump." Eventually this sense of denial could not withstand the revelation of facts that indicated that there was significant contamination at the Billerica Street site. This realization 12. led to a sense of "fear and anxiety" that subsequently coalesced into the anger that mobilized the residents into seeking help from individuals who were knowledgeable about these situations and then using the knowledge gained through these contacts to mount a postcard campaign that ultimately resulted in their relocation. Other aspects of this process will be discussed in the section of this report which deals with distrust of authority. The post relocation phase will be discussed in a separate section of its own. Toxic Disasters Create Psychological Stress Edelstein's recent work sets forth a thoughtful analysis concluding that toxic exposure is inherently stressful: For the individual, the physiological, psychological, and social costs exacted by everyday life are commonly referred to as stress. Toxic exposure may cause new strains in victims' lives, intensify existing strains, or give new meaning to old problems (see Pearlin et al., 1981). It may be blamed for such major life crises as the death of a loved one, marital discord, ill health of family members, and financial difficulties. None of the key spheres of life activity -- home, work, friendships -- is free from disruption due to exposure. ' a # Stress begins with a threatening occurrence that disrupts the balance or steady state achieved by the system (Lumsden, 1975). Stress-inducing threat can take three forms -- noxious physical stressors, the realization that some event either may cause disruption or has already caused some harm or loss, and challenges, 13. varying from simple problems to complex dilemmas (see Baum et al., 1981; Lazarus, 1966). Toxic exposure often involves all three types of threat simultaneously. Noxious physical conditions and fears over future consquences disrupt victims who are already overloaded with novel, complex, and ambiguous information they need to understand and use in making decisions. [Edelstein at 12.2 Once a threat is recognized, it must be appraised to ascertain the potential implications of the threat and possible measures that can overcome effects so that a determination can be made as to whether the threat can be discounted and ignored or whether further attention is demanded. [Id.] Dohrenwend, et al., in their paper, "Stress In the Community: A Report to the President's Commission on the Accident at Three Mile Island," report that "[djemoralization is a common distress response when people find themselves in a serious predicament and can see no way out." Lois Gibbs, who was the community's leader during the Love Canal crisis, in "Community Response to an Emergency Situation: Psychological Destruction and the Love Canal," a 'paper presented at the American Psychological Association, August 24, 1982, describes the anxiety, disillusionment and general sense of psychiatric malaise of the individuals whb lived in this "environment full of stress." Because of the ongoing nature of the Love Canal crisis, many individuals were simply not able to handle the "continual stress," which led to threats of suicide, 14. and in some instances, completed suicides. She also noted that it was not uncommon to "watch my neighbors who before Love Canal were calm, easy-going people, throw books at officials, use profanity in public, or threaten officials with physical harm at heated public meetings." A study by Fleming and Baum (1984) compared 54 residents in the immediate vicinity of a dangerous eastern hazardous waste site with residents from two similar neighborhoods in Delaware. Higher stress levels were found among the exposed group than among the controls, leading the authors to conclude that "residents exposed to toxic stressors ...such as a hazardous waste site may be at an increased risk for stress-related outcomes." Margaret Gibbs, who carried out a study of the Legler residents in Jackson Township, New Jersey, using quantitative clinical measures, found high scores on indicators of health concern, an above-normal amount of hostility toward authority, and clinical levels of depression [M. Gibbs, 1982]. Discussing the secondary effects of stress disclosed by the Gibbs study, Edelstein reports that 96% of respondents in the Legler study reported emotional reactions due to the contamination: Beyond health worries, they reported (in declining order of mention) feelings of disturbance, anger, depression, family quarrels, mistrust of others, financial worries, feelings of being trapped or helpless, divorce or separation due to the crisis, nervous breakdown, 15. and interpersonal aggression. [Edelstein at 84.) Roughly parallel findings are reported for Love Canal [Stone and Levine, 1985]. Children are also effected by stress, in part derived from the stress on the family itself. [See Bromet, et al, "Mental Health of Children Near the Three Mile Island Nuclear Reactor," (mental health of children of residents affected by instability in the home as a result of family stress from the accident); Edelstein (1988) [at 98]. (It is clear that children are stressed by the experience and that stress comes from two sources: 1) parental worry passed along to them, as are the tensions due to parental stress; and 2) children's own experiences involving direct impacts from the waste site, peer pressures, and the consquences of being taught to fear).] Coping responses to the stress experienced by victims of toxic disaster have been discussed in the literature. Baum, et al., in their paper, "Coping with Victimization by Technological Disaster" confirm that problem-focused coping is not very successful in toxic disaster settings. They further found that among the strategies available in emotion-focused coping responses, denial is not very effective. Similarly, Collins, et al., (1983) investigated the effect of coping style on psychological response to the chronic stress posed by the Three Mile Island disaster. They too found that in general, denial mechanisms were less effective in reducing stress than 16. reappraisal-based emotional management, in which the individual reinterprets and "accomodates" to the stress by adjusting behavior or beliefs. Moreover, as Edelstein (at 13) notes, "[Wlhile they assist in coping with stress, accomodations do not necessarily reduce the perceived severity of environmental problems (Preston, et al., 1983; Wohlwill, 1966.)" There are powerful reasons that would propel victims of toxic disaster toward denial. Edelstein (at 11-12) offers an explanatory framework: Beyond our routine activities, toxic exposure may disrupt the lifescape, a term that refers to our fundamental understandings about what to expect from the world around us. The lifescape reflects not only our own unique interpretive framework, but also the shared social and personal paradigms used for understanding the world. We are rarely aware of our lifescape until something disrupts our lifestyle or in some other way disconfirms our operating assumptions. The crisis resulting from this disconfirmation is often resolved through denial; we do not easily abandon an existing explanatory framework. But if a new explanation is identified that better accounts for the anomalous situation, we may change our core understandings. Beyond disrupting personal paradigms, disconfirmation of the lifescape may challenge core assumptions of the overall society. For example, toxic exposure directly assails several fundamental social beliefs; that humans have dominion over nature; that personal control over one's destiny is possible; that technology nd science are forces of progress only; that risks necessary for the good life are acceptable; that people get what they deserve; that experts know best; that the marketplace is self-regulating; that one's home is one's castle; that people have the right to do what they wish on their own property; and that government exists to help. It 17. is not easy to discard such beliefs, at least unless one has previously come to doubt the dominant paradigm. Some people who suffer toxic exposure and who have a strong belier in the social paradigm may even deny, rationalize, or minimize their exposure. [Footnote omitted; emphasis added.] It is my opinion that the tenacity with which people cling to their basic assumptions about life leads them to reject anomalies that undermine the assumptions and to fail to appreciate what in retrospect appear as early signposts of toxic contamination. [See Edelstein at 28.] Denial can be encouraged by governmental officials and other authority figures, by reassuring residents that the contamination that contamination does not affect them. As more information about the contamination becomes available, as residents reassess their own health problems and become aware of similar unexplained health problems in the community, denial becomes more difficult to maintain. The psychological stress experienced by the Billerica Street residents was of different types and took different forms as the facts of the contamination became known. Specific stressors such as their concern for health, weakened trust in authority, and the development of anxiety and depression will be discussed in subsequent sections which deal with those specific concerns. In this section I will discuss the more general stressful factors as they evolved over time. 18. I have already discussed the tendency of the Lowell Residents to deny the emerging evidence that there was a significant problem with contamination at their homesite. As the governmental agencies became involved they began to experience psychological stress in part due to the conflicting messages that they were receiving. As the information began to come in one family realized that there were "all manner of things there" -- "so suddenly mixed with anger was fear -- we had no idea what we were living on top of." Before the relocation was agreed upon there was a period when others were being kept away from the area but the residents were still told they were in no danger. This prompted the following type of reaction: "How can you fence around our units to keep others out and keep us in? "Couldn't believe we could be kept in while others were being fenced out." The period of extreme tension preceding the actual relocation was described as an "absolutely terrible time" that was "intense to the point of being unbearable." The psychological stress was intensified by the occurrence of this phase around the Christmas holidays. As one individual put it, it was like "Christmas was sort of going on around us." Another individual described this phase as "hellish." He was particularly upset that "they refused us information," noting a difference between "what they tell us and what they believe." 19. Further contributing to the general stress was the prolonged period of disruption in the individuals' daily lives. Once the group coalesced into action there were countless meetings which disrupted family life and strained the relationships between family members. In most cases one member of the family took the responsibility of being the family's representative to the group. This meant that their duties at home had to be picked up by others, often with mixed feelings of guilt and resentment. As one man stated, "For about a year we had no set plan of home life." Toxic Contamination is Stigmatizing At Love Canal, Fowlkes and Miller (1982) found stigma directed at those who believed there was contamination by those who did not.' Edelstein reports extensively on stigma and the associated phenomenon of "blaming the victim" at Legler. Legler residents too reported that.friends and family whom they had entertained for years now refused to visit. Family members who did visit, as one resident put it, would bring water instead of the cake they used to bring. Edelstein states that "Enleighbors of landfills at several sites reported that others identified their homes with proximity to the landfill." [Edelstein at 114]. In my opinion, Edelstein is correct in his observations that "the essence of stigma is fear." that "Co~nce 20. contaminated, exposure victims view themselves differently, in part because of dreaded health impacts" and that "others see the disaster victim differently as well." Their homes and neighborhoods are downgraded by observers who exhibit "anticipatory fears" about the place. The sense of having been stigmatized was pervasive in the Lowell residents. As one man stated, "Billerica Street in Lowell is taboo" adding that it had become a "generic name for trouble." Contributing to this sense of stigma was the feeling of having been duped, as exemplified by the comment "Guess we're the first people in the world to be right on top of a dump." At times the Billerica Street residents were subtly ridiculed by other people in the community who lived more distant from the site. One man recalled being asked at holiday parties if he wanted a "gin n' toxic." A young woman noted that whenever you gave your address in a store it would spark a conversation about the contamination. Ironically, the feeling of being stigmatized did not end when the residents were relocated to the condominium complex in Tewksbury. Virtually all of the families described to me the feeling that they were not wanted in the complex and that they were viewed as second class citizens there. One man said that they were a "scape-goat for the condo association -- if toys 21. are left out they assume they are ours." At times they have felt this has almost reached the proportions of harrassment, which seemed very unfair to them, provoking this comment from one woman, "What did we do to deserve this? Can't even live in the house we paid for, and come here to be tortured." To a certain extent, the stigmatization is continued by the current condition of the Billerica Street site. Several individuals commented on the high grass, the chained doors, and the barrier fence around the site. As one individual phrased it "Nobody cares -- with the grass growing up it looks like Sherwood Forest" and the "barbed wire fence makes it look like a prison camp." It should be kept in mind that even though the families are no longer living there these are still their only homes and they are still paying mortgages on them. Thus, although they no longer live there, this "prison camp" setting still represents home to them. Toxic Disaster Disrupts Its Victims' Fundamental View of the World: No Safe Place Robert Lifton, M.D., the chronicler of the psychological condition of survivors of the Nazi holocaust, the atomic bombing of Hiroshima, and the devastating dam break at Buffalo Creek in West Virginia prepared an extensive document about the Three Mile Island nuclear accident. In "Psychological Report 22. on the Three Mile Island Litigation," Dr. Lifton reports that an overriding fear of the populace was the fear of "invisible contamination." Dr. Lifton has noted that, like the radiation emitted at TMI, "various toxic chemicals or gasses fall into this category." Thus, as he observed, "Eharm is threatened, not by a visible or otherwise perceptible agent such as fire and water from which one can flee to safety but to something more insidious and terrifying because it cannot be detected by the human senses." Lifton found that "E1nevitably, people began to experience significant anxiety symptoms," and noted that "Evjirtually all of those interviewed experienced some of these immediate responses of surprise, extraordinary confusion, fear of individual and mass death, anxiety about leaving or staying, protecting families or children, early traumatic symptoms and pervasive fear of invisible contamination." Lifton describes a poignant example of such disruption of the fundamental faith in the environment as benign and safe. A woman in her 60's with her husband left the TMI area in their mobile home about six months after the nuclear accident and embarked on what ultimately became a 3 1/2 year period of wandering. The couple had been looking for a new place to settle, but came back to the TMI area because, they reported, they had been "unable to find a safe place for themselves or their children." [Lifton (1984).] Michael Edelstein in his study of the Legler residents 23. noted that prior to the recognition of toxic contamination, the Legler area, "Eiln nearly all cases, was seen as a generally healthy place compared with the new residents' prior homes.." [Edelstein at 20.J Edelstein also describes the contamination with DDT of the Tennessee River flowing through small communities in Northern Alabama and its impact on the largely black population in the little town of Triana where the local culture was centered economically and recreationally around the river. [Id. at 56] In his discussion of the redefinition of the environment as being a perpetual source of threat and the replacement of earlier views with an ongoing view of the environment as hazard by toxic victims everywhere, Edelstein notes that "[tjhe move to the suburbs and quasi-rural areas, undertaken by many of the toxic victims discussed in this volume, was part of an escape from the city to a rural idyll." [Edelstein at 55.] The conclusion of toxic victims, as Edelstein correctly notes, is "Enjow there is no safe place to escape. This can be seen even in the most remote and bucolic of settings." (Id.] As he observed: Thus, the environment becomes a much more significant, and ominous, component of one's world. Such requesites as air, water, and soil, normally assumed to be freely available in desired purity, are no longer trusted to be safe. Children learn to ask of hosts, "Is the water safe to drink?" I have noted the same phenomenon at every toxic site that I have visited. Some aspect of the environment, formerly benign, is now defined as a threat. 24. Toxic victims likewise have trusted a seemingly safe environment only to discover that it was treacherous... There is a loss of the sense of protection formerly assumed to be present in the environment (see Wolfenstein, 1957)... Victims may lose their belief in dominion over earth that characterizes the view of Western civilization. Ironically, it is this belief, false as it is, that is a key basis for the individual's sense of personal control. It is therefore not surprising that, beyond a reassessment of environment, there is also a parallel shift in the understanding of self and the future. [Id. at 56-57.J Lifton in 1976 reported on his evaluation of the survivors of the Buffalo Creek flood disaster in which an artificial dam holding back coal waste in a mountain stream gave way, unleashing a 30-foot wall of water that destroyed everything in its path. Many survivors, though they expressed a strong desire to leave, did not, according to Lifton: [M~ost are fearful about possible alternatives. As one very troubled survivor put it, "I hate to give up what I've got here without knowing that what I was getting into would be better." Or, as in the case of another, they convey partial recognition that their conflicts have been so internalized that moving cannot help: "Some people I know have left the valley, but they're not satisfied." [Lifton (1976) at 11] Michael Edelstein devotes considerable attention to the 25. impact on the sense of home experienced by victims of toxic contamination, a concept which he aptly denominates "the inversion of home." He notes that: 1) The home "permits us to separate and defend ourselves and our possessions from external threat. We further assume that the home itself will not harm us (Goffman, 1971). As a result, we feel secure." [Edelstein at 61.] 2) The "home serves as the basis for anchoring our sense of self. Houses encode a variety of messages that may be seen as refelective of the owners or occupants in various ways (Ruesch and Kees, 1956), affecting both how we are viewed by others and how we view ourselves." [Id.] 3) Cultural identity expressed by the "American dream" centers on the nuclear family and ownership of a single-family home. [Id.] 4) "[0]wnership of a house signifies a family's achievement of a desired developmental status, as well as what might be called the economic 'creditability' necessary to obtain 26. a mortgage loan." [Id.] 5) The home is an economic investment in which money and time are expended for maintenance and expansion to enhance the resale exchange value. [Id.] All of these attributes of the home were impaired by the community contamination in Legler. Home was no longer the secure place, as Legler residents found themselves effectively trapped in their homes even as they saw them as places of danger. Rather than a place to escape to, with the contamination, home had become a place that residents could not escape from. Personalization and maintenance of the home diminished as people became increasingly reluctant to invest more time and money in homes they saw as valueless: While a few home sales occurred during the incident, residents uniformly perceived a loss of property value and potential for sale. Several residents reported that they had lost opportunities to sell their homes or that real estate agents had advised them not even to try. One resident recalled, "If you tried to list, they'd laugh at you." Even as they faced difficulty selling their own homes, it became harder for Legler residents to relocate. The cost of homes elsewhere was soaring, mortgages were hard to get, and interest rates were substantially higher than those paid on the Legler property, resulting in the sense of financial entrapment felt by virtually all the residents. People had invested everything they had in their homes, but had lost'the option to capitalize on their investment. Also lost was the option to leave. (Id.] 27. The reaction of the Billerica Street residents to their homes was even more complicated than that observed at most other sites. To a certain extent this complexity was contributed to by the relocation process, which will be discussed in more detail later. In addition to finding that their homes were not the safe sanctuaries from the world that they had envisioned, they subsequently found themselves making monthly mortgage payments on homes which were virtually worthless, which they could not sell even if there were a buyer, and for which they could no longer obtain insurance; "We have no insurance coverge for houses on Billerica Street." One woman commented that this was the "first house I lived in my whole life that I owned -- next thing you know you're renting." Indeed, for most of the residents this represents their first home purchase. While content with their home on Billerica Street before the contamination virtually all of them wanted to eventually pursue the American dream of trading up to a larger home. Instead, they found themselves "trapped" with a disastrous investment which left them facing financial ruin and most probably ending their dream of owning a home of their own for the foreseeable future. These circumstances have also led to a pervasive feeling of "betrayal" as the residents thought they could trust the system not to let something like this 28. happen to them. Concern for Health and Reassessment of Old Health Problems Edelstein in his extensive work draws upon observations made at Love Canal, Legler, and other communities suffering from toxic exposure. He finds the perception of danger to the health of victims or their families to be a primary impact of toxic exposure. Repeatedly confronted with such terms as "possible carcinogen" and "suspected mutagen" which inspire a sense of dread in victims of toxic disaster, they become preoccupied with health concerns. Edelstein reports that when he interviewed a number of love Canal residents in 1979, they were so preoccupied with their health problems that despite his "repeated attempts to change the subject, the respondents persisted in describing at length not only their own maladies but those affecting their families, friends, and neighbors as' well." He observed that "[ujnexplained illness dominated their experience" and that health problems which had been the cause of worry, or financial hardship, of lost work, and of lost loved ones, became an overlay for life once the health problems were linked to the contamination. [Edelstein at 49.] Edelstein notes that in Legler, once notifications of well water contamination went out, people in the community began to communicate with each other and to compare symptoms, 29. reinforcing their view that their problems derive from a common source. This led to a reinterpretation of past health problems, particularly originally inexplicable ones. For example, the tragic loss of a Legler child to a rare form of kidney cancer prior to the discovery of contamination was explained definitively (in the view of the family and others in the community) by the later discovery of toxic chemicals in the groundwater. Other examples of the reinterpretation of health problems were suggested by [Edelsteins's] Love Canal informants. My son quit growing. He lives in the lower level of a raised ranch. [Chemicals from Love Canal seeped in through basements.] He developed ulcers; he has suger; three out of five of my kids have ulcers. And it's not because my wife is a lousy cook! My son had to come home for lunch. And I had to go pick him up and take him back because by the time he'd got to school he'd have an asthma attack. And I used to think it was pollen; he'd get it in the dead of winter! [Edelstein at 51.) In my opinion the reinterpretation of past health problems is an expectable reaction, especially in light of factors cited by Edelstein: The burden of coping with continuing illness has its own lifestyle and lifescape impacts. Illness focuses the attention of family members inward as resources (financial, emotional, and energetic) are marshalled to deal with health problems. The involved family rarely has the opportunity to question the causes of illness. Seen as a private problem, there is also little attempt to look for patterns of illness in the community. These patterns are rarely visible until contamination is identified and becomes the focus for local communication. 30. During a period of health concern, the family is dependent upon physicians reluctant to accept environmental explanations for symptoms, relying instead upon conventional explanation and treatment. After being diagnosed as "normal," the illness becomes demystified, and the victims have no reasons to search for environmental causes. Even "unconventional" diseases rarely prod physicians to look for environmental sources. I I I When doctors fail to "legitimize" toxic exposure as the cause of health problems, claims by victims may be viewed as irrational (see Fowlkes and Miller, 1982). [Edelstein at 51.) The convergent study on the Legler residents by Margaret Gibbs provided clinical evidence of these health concerns in the form of comparatively high scores on indicators of health concern, along with clinical levels of depression and other findings. [M. Gibbs 1982.) That the interpretation of each new symptom which appears is mediated by a fear of the effects of toxic chemicals is illustrated by the comments of these residents of Legler and Love Canal: [Legler resident:] It seems silly sometimes when you fear something. For example, I had a tumor in my ankle during the water situation. I thought it was cancer from drinking the chemicals. I expected to find cancer. I was really upset. Even when the doctor said it was benign, I was still worried. [Love Canal resident:] When they started 31. digging, my daughter did not have one blemish -- nothing -- on her face and she broke out in the "Hooker bumps" [referring to the chemical company which owned the Love Canal site], which several other children did in the area. [Edelstein at 53.] Edelstein reports the statements of a Legler woman as she recalled her concerns when she was anticipating the birth of her child: The doctor said that the baby would be aborted if there was a chemical problem. It was in the back of my mind until it was born that it would be deformed. It wasn't until after it was born that I could learn to cope with the water problem. [Edelstein at 53.) Among a number of other illustrations cited by Edelstein is the concern evidenced by a Legler teenager: What worries me is my genes. This stays with you. It may not show up for twenty years. It may hit the next generation. Having a deformed child can be an emotional crisis. I think of the mentally retarded class at school. I don't know how to handle this situation.. [Id.] A corollary of the concerns for future health is the sense that even if the source of the contamination is removed, the damage from past exposure can never be undone. The same concerns have been observed at other toxic sites. As one Legler resident succinctly put it, "Cancer does not show up right away." Drawing upon his experiences at both Legler and Love 32. Canal, Edelstein states: [I]f there was one projection uniting residents who planned to stay with those who wanted to leave, it was a recognition that wherever one goes, there is no escape from the worry associated with the past exposure to toxic chemicals. All share a changed lifescape regarding health. As a result, their image of the future is clouded, as bluntly indicated by one of the Love Canal informants. If you stay here, you're going to die. And then they say that they don't know what you died from. 'Cause cancer looks like cancer. If anybody's lived here eight or ten years, they will develop cancer. [Edelstein at 60.J Lifton in his report on the psychological effects of the TMI radiation contamination noted that the TMI area residents he interviewed experienced "anxiety about leaving or staying [and] protecting families or children" among other responses. Many TMI area residents were especially worried about the future health of their children and about the development of cancer. Lifton describes the residents as "not knowing what the effects of exposure might be" and as "perpetually fearful." Lifton reports an example of one man who "experienced considerable depression, along with feelings of emptiness and purposelessness and sometimes becomes tearful." This man worries about the health of his wife and children and associates these fears with his regrets or feelings of guilt at not having evacuated his family sooner. [Lifton (1984).)] 33. Edelstein, noting that "[f]or caring parents nothing is more unsettling than threats to their children's health" reports feelings of guilt and self-blame expressed by two Legler residents: We feel guilty that we just didn't leave, particulary when friends say we should have. Am I so terrible that I made my kids stay here under these circumstances? But to leave is to give up. N * # I felt guilty because I talked my husband into buying this place. We brought the kids here and poisoned them. Can you imagine how it must feel to stick your kid in poison? Incredible. What did I do to them? [Edelstein at 41, 91, 92.] The Lowell residents also voiced concern about their health. This took the form of concern over the current status of their health, as well as anxiety about long term effects that might not show up for several years. As one young woman stated, "My biggest concern -- what will effects be on health ten years from now." Another individual of similar age said "Ten years from now I could end up with leukemia." Another resident phrased the same concern as follows: "We were exposed to these things -- just don't know the long term effects -- we will have to live it out to see who got the booby prize." Other individuals were less articulate but similarly voiced 34. concerns that "We don't know what the long term effects are." And I'm "concerned about the long term effects." One individual indicated that a standard question now when they went to the emergency room or hospital was "Have you lived near a toxic waste site?" indicating that such experiences "contribute to our miserable outlook on life." Young women of child-bearing age were especially concerned about the possible effects on their reproductive system. One young woman said, "Just tell me if I'm sterile." Other women expressed the fear of increased risk of miscarriages or congenital malformations. As previously noted Edelstein has commented on the tendency of residents of toxic sites to "reassess" previous or existing health problems in light of the new findings. One individual in particular graphically described how he had finally "put two and two together" and attributed many of his families' health problems to the contamination whereas previously he had "thought it was just us." In further describing this process he said, "The unknown -- we didn't know what was happening to us and our kids mentally -- like a nightmare." We saw the end results - asthma - headaches, but didn't know what was going to happen in the future." Parents have the additional burden of worrying about the 35. possible future health effects on their children. This was expressed by statements such as: "Now worry about health effects on kids." and "Not knowing what will happen to our children in the future." The concern about the health effects on the children was also related to a certain amount of guilt. One father ' described how he "felt very guilty" because he had pushed his child into athletics because he thought he was lazy and did not realize that he was effected by the contamination. Distrust of Authority and Loss of Trust Adeline Levine, who has published extensively on the Love Canal toxic contamination, in her book entitled Love Canal: Science, Politics, and People (1982), describes comprehensively the distrust of government, of scientists, and of authorities that results from a gradual breakdown of the assumption that others, particularly those in goverment, will aid toxic victims to make their lives once again whole. The description ... )f events through which the seeds of mistrust were sewn are thematic of others reported in the literature: In the second week of May, 1978, on the day that the EPA concluded that the toxic vapors in people's basements suggested a serious health threat state officials met with Love Canal residents to ask for their cooperation in studies to assess health and environmental problems. A 36. second meeting a few days later was a fiasco. Dr. Clifford, the County Health Commissioner, said his department had failed to carry out all the directives from the State Health Department. He explained that his examination of the 99th Street School attendance records assured him there were minimal health hazards, and he said property values were the homeowners' and not the government's problem. Dr. Stephen Kim, a toxicologist from the New York State Division of Laboratories and Research, heatedly disagreed with Dr. Clifford, on the stage. As the meeting progressed, residents received little precise information, except that one family was informed it would encounter health risks if anyone stayed in the basement for more that 2.4 minutes. A few days later, a state biophysicist was quoted as saying that if he lived a Love Canal and could afford to move, he would do just that. During the spring and summer of 1978, more people became aware of the problems of Love Canal. Residents attended meetings; listened to the statements by officials, who either denied problems existed or pointed with alarm and then offered no help or advice; listened to neighbors' accounts of the meetings; and read the comments about their homes and neighborhood. They became terrified that their homes -- especially their basements, where many had innocently built bedrooms and family rooms -- were dangerous places. What frightened people even more, however, was the possibility, first, that no one in authority knew what was really wrong, and, second, that even if they did know exactly what was wrong, maybe no one would help anyway. The residents already knew that the problem was too big for individuals to solve. Since they could not sell their homes, for there were no buyers waiting to purchase them, the residents knew that, if they moved, they would still be faced with monthly mortgage payments and maintaining their homes, in addition to renting or purchasing other places to live. Their choices were to face financial ruin in an uncertain situation, or to hang on and hope either that the conditions would be completely corrected or that somehow they would be given some financial assistance by some level of government. * * 4 37. Always, woven into every contact and influencing every decision, was the question of who was going to take responsibility, who was going to pay actual dollars, and who would commit resources of personnel. This unsolved question made decisive action impossible for the first few months. In December 1977, for example, Frank Rovers, a new consultant, had been brought in to advise about covering the canal and draining excess leachates from it. He addressed a Love Canal study group whose members represented the city of Niagara Falls, the school board, the county health department, Hooker Chemical, and legal counsels for the city and for Hooker. An air of harmony reigned when Dr. Clifford began the proceedings by saying he preferred to take care of the problem by cooperative rather than coercive means. Rovers was promised $5,000 so that his firm, Conestoga-Rovers, could devise an engineering plan. Once the plan was complete, however, the study group began to fall apart. Late in June 1978, the school board announced that it had deeded the land to the city in 1960, that it was not responsible for the health hazards and property losses, and that it would be short of cash as a result of a recent court decision limiting its ability to tax over state constitutional limits. In July, the city announced its withdrawal on the advice of the city's bond counsel, who was concerned about private ownership of part of the land. The Hooker Corporation had helped finance the preliminry engineering study and had provided maps of the dump site to state officials. However, the company states that it was just acting as a "good citizen" and was not accepting any responsibility for the planned major construction project. [Levine (1982) at 21-22, 24-25 (citations omitted; emphasis added).] Levine's book also chronicles the authorities' disregard and ridicule of scientists whose studies suggested health problems, a theme that is repeated in the literature on other toxic disasters. 38. Michael Reich has published his work on the governmental response to the crisis which developed when cattle feed, contaminated with the toxic chemical PBB, entered the food chain, ultimtely affecting thousands of Michigan consumers. [Reich (1983).] His work demonstrates that government officials deal with uncertainty by clothing their decisions with an aura of seeming certainty that once having made a decision, governmental authority is likely to use a scientific rationale to legitimize it. Once locked into a position, the agency defends it stubbornly. The work of outside scientists who suggest health effects from a contamination situation is belittled and explained away. [See discussion in Reich (1983) at 308; see also, Levine (1982) at 115-170.] Thus, in the Michigan PBB case an out-of-state epidemiologist's study showing that Michigan dairy farms as a group exhibited more joint disorders, neurological symptoms, problems with liver function and immunological abnormalities than control groups of Wisconsin farmers and New York City residents was discounted in favor of a conflicting study by state and federal health officials. [Reich at 308.] An expert panel assembled by the Michigan government failed to review a study by the Food and Drug Administration involving the experimental feeding of PBB to beagle dogs that showed immunological effects. [Id.] In addition, Reich reports that the contamination was allowed to spread for more than a year when governmental officials, reluctant to act, ignored the data brought them by the single 39. farmer who with his veterinarian had first made the connection between morbidity and mortality in his cattle and contaminated feed, widely distributed to farmers throughout the state, as a "private problem" of that particular farmer rather than a public problem. Similarly, discounting human health problems and casting the problem as an agricultural one, the governmental authorities, according to Reich, were able to avoid acting on certain problems. "The definition of a problem tends to become frozen in the position of a bureaucratic agency, and thereby to resist change." [Reich at 309.J It is these kinds of actions and their institutional roots, that lead Edelstein (1988) and Levine (1982) to find that distrust of authority is a prevalent outcome in the victims of the toxic disasters they studied. Edelstein reports on his study of a toxic disaster in Walkill, N.Y., where wells in the community were contaminated with the chemical perchloroethylene (PCE). Edelstein's illustration of the local governmental response in that community not only exemplifies the. roots of distrust of authority in victims of toxic contamination, but also the interference with an early acknowledgement of the victims' suffering which Beverly Raphael reports is crucial to a more favorble mental health outcome. It was a tense public meeting. Residents from the neighborhood crowded into the fire hall to learn more about their recently discovered contamination problem. The solvent tetrachloroethylene (PCE), a suspected 40. carcinogen, had been found in wells at one end of the section. The concentration in one of the homes was among the highest ever recorded for a residential water source; a glass of tap water was said to be one-fourth PCE. Initial testing had found decreasing amounts of PCE as samples were taken at greater distances from the worst wells. In fact, other than at a cluster of some ten homes, no other wells had been found to have more than the 50-parts-per-billion (ppb) standard used by New York State to define the acceptable level of contamination; many wells showed no pollution at all. Midway through the meeting, the county health commissioner arose to address the question of whether people should drink their water. Earlier, he had been quoted to the effect that water below the 5-ppb standard was safe to drink. He now sought to distance himself from this advice, noting that the aquifer beneath the neighborhood might never again be free of PCE. Residents would have to weigh the risks of continued use of their wells. As he followed this new line of reasoning, however, the commissioner was caught in a bind. If PCE was in the aquifer, it might show up in tap water at a later point. Therefore, the water could never again be trusted and should, accordingly, not be used. If the water could not be used, then something would have to be done to assist the residents. Suddenly realizing the danger of overstressing this point, the commissioner attempted to balance his message with reassurances based upon the water standard. The message was now garbled, with residents being advised that their water was both safe and unsafe ... It was not surprising that some residents, having been told that their water supply was "safe" by government standards, subsequently returned to using their wells; the threat was over for them. Others, having heard that there was a potential ongoing threat, continued to believe that they were at risk. But their belief was supported neither by most government communications, nor by many of their neighbors. Denial of the threat was clearly an easier route than acceptance, in part because of the regulatory response. The dialectic of double binds had created a disabling situation. 41. [Edelstein at 120-121.] Dohrenwend, et al., in a retrospective study of Three Mile Island area residents found that there had occurred a considerable drop in their rating of trust of public figures. The level of distrust was significantly higher than levels of distrust of government officials reported in contemporaneous national polls. Dohrenwend, et al. conclude that "[tjhe accident at Three Mile Island has had a lasting impact on the population of the area in terms of their distrust of authorities with respect to nuclear power." Dr. Lifton, in his work on TMI-area residents also found significant distrust of authority. He notes residents' "suspicion that the community was endangered by the deceptions of plant officials" and "the frequently held feeling that a dangerous technology was being permitted to control their lives." He reports that "[t]he problem is seen as a combination of technological difficulty, incompetence, and deceit." In a paper addressing the psychological impact of environmental disasters, Karl Reko reports some of his findings on the psychological impact of the dioxin contamination disaster at Times Beach. Noting the distinction between a natural disaster which is viewed as an act of God and a man-made disaster which is viewed as malevolent, he finds that 42. man-made disasters are not accepted as "it just happened because somebody, you are not sure who, made it happen or let it happen and you are not sure exactly how it happened." As he goes on to note, "That affects the distrust level." He finds in Times Beach residents, "feelings of betrayal that agencies that may have been seen as protective somehow let this happen and a great deal of suspicion that self-interest is being served by offers of aid." (Reko (1984).] Edelstein reports that "[a] loss of the naive sense of trust and goodwill accorded to others in general [and] specifically, a lost belief that government acts to protect those in danger" is one of the five changes in the fundamental view of the world ("lifescape changes") undergone by victims of toxic disasters. [Edelstein at 41.] Edelstein states that many Legler residents, "(s]tigmatized, disillusioned, and distrustful ... adopted a vigilant mode of decision making based on caution and deliberation." As one resident explained, "We do more investigation. We don't believe what we hear. When we go to buy something, we think twice." [Id. at 72.] In Legler, distrust of government was even more pronounced. Edelstein reports that "Jackson Township officials were seen as decidedly unhelpful during the Legler water crisis." It was Jackson Township that had established and operated the landfill. Thus, Edelstein notes: 43. The fact that the township was the polluter as well as the source of government assistance had political, legal, and financial ramifications. The township's resulting difficulty in accepting responsibility for the situation appears to have affected how officials responded to the Legler residents. They didn't believe that the water was polluted even when their own staff said it. They believed that the state had gone wild. They couldn't believe that they caused the pollution. [Edelstein at 75.] When the Legler residents turned to the state regulators for help, it became apparent that those agencies could not be relied upon either. As one Legler resident explained: At an early meeting we saw different agencies bickering over who was responsible. It was scary. There was rhetoric, but no action. It was frustrating. The people believed that the water was bad; they were hypochondriacs. And there was no one to ease their minds. The government was waiting for a dead body which could be proven to have been caused by the chemicals. One agency after another said we had to prove this. Tests were done, but no one ever came back to warn us about the findings. No one had a sense of responsibility. [Id. at 74.] According to Edelstein the following comment sums up the perception of government found in Legler after the contamination was announced. I've lost my belief in government. I always thought that in order to say things in public, they had to be true. Now I realize that government exists to pacify people. 44. Eld.] Edelstein found that in Legler residents' view the government complicated their attempts to cope with a disturbing situation. "As a source of information during the crisis, government officials were seen as evasive, saying only what was expedient, and distorting information that they grudgingly shared." Edelstein observes: Much as did residents of Love Canal (Levine, 1982) and Times Beach (Reko, 1984), Legler residents spoke about how astonished they were that their status as taxpayers meant so little. Many felt that the township sought to avoid the problem or even deliberately covered it up ... Legler residents voiced a virtually unanimous belief that local government cannot be trusted. Some reported that they would no longer vote. [Edelstein at 74.) Significantly, he reports that "[jimilar disillusionment and loss of trust in local government appear in virtually all the cases mentioned in this volume." [Id.] Dr. Margaret Gibbs who conducted a clinical study on Legler residents found an above-normal amount of hostility toward authority. [M. Gibbs (1982).] For the victims of toxic disaster, there is a dependency on government officials. When officials "simultaneously communicate such double messages as 'you are at risk/you are 45. safe' and 'I will help/there is nothing I can do,' victims' stress is exacerbated by these mixed messages." Edelstein concludes that "with toxic exposure, official actions particularly exacerbate the victims' distress" and that encounters with government serve as an independent source on their stress. [Edelstein at 71, 119.J The overall sequence of events at Lowell was similar to the general pattern described above. Initially, there was a tentative recognition that there was a significant problem at the Billerica Street site. Following this initial recognition the public officials attempted to reassure the residents that there was really nothing to worry about. This period was followed by what I have labelled an "ambivalent" phase during which the residents received mixed messages from the public authorities. Many of the residents recalled that at one point they were being told their was no problem while others were being warned away from the site. The final phase came when there was a general recognition by all involved that there was a significant health problem. However, even at that stage the Lowell residents felt that they still had to undertake a major political struggle to gain official recognition of their problem and relocation -- they all felt 46. that had it not been for their postcard writing campaign that they would not have been relocated. I believe that it is the initial denial, followed by the conflicting messages, and then the battle to obtain help even after there is consensus about the problem that leads to the development of distrust and cynicism. I will now list several of the quotes that came from my interviews that illustrate these points: "Actually what they were doing was dragging their feet so see what the state would do" [when talking about the Lowell City Council]. "Government authorities aren't going to do anything till you nail them to the wall -- they don't give a shit about anybody." "Whole thing is a game -- only reason we got relocated was the postcard campaign to Dukakis." "Nobody was going to help us -- it was up to us."' "D.E.Q.E. is just there to protect the industry and govenment against people who have been victimized." "D.E.Q.E. is for government and industry." "Feel like we've been had." "Feeling like paying for someone else's faults." "Deadly chemicals on the site aren't dangerous" [residents' perception of what D.E.Q.E. official was telling them]. "Wouldn't believe them if they said it was clean -- said it was clean in '79 and it wasn't." "Only way is to build a fire under them." I 47. "They don't care -- they don't live here." "We felt outraged -- we felt deceived." "Toying with our lives -- holding off on the move for political reasons so it wouldn't appear to be in response to emergency." "Makes me feel like human beings are just slobs -- effected my view of human nature -- seems dirty now -- a lot of negatives there now that weren't there before." ."If you can't fight the system -- they will do what they want to anyway." "Didn't believe anything -- so many times told us things and then said they changed their minds at the last minute." "Didn't believe people until you actually saw it in print." "Tells you a lot of things that you have to do to get something done." "Someone has to give up their whole life to get it done." "I would never look at a new home -- if you pay the right people you can get anything built." [Another individual said that before buying a house site they would research the area back in time for 100 years.] "I don't trust people as far as real estate goes because there is too much money to be made." "They didn't even do what little they were supposed to." "Amazing to see how they could allow something like that to happen." "Candidate doesn't need this." [quote attributed to a Dukakis campaign manager by a Billerica Street resident when discussing events leading up to the relocation.] "You grow up a lot -- I'm not naive anymore." "Being nice guy gets you no place." 48. "Worse thing is we're always the victim -- always getting screwed." Anxiety and Depression Bromet, et al., conducted a study of the mental health of the residents near TMI. The study design involved selection of three groups: 1) mothers of preschool children living within ten miles of the plant; 2) workers at the power plant; and 3) psychiatric patients. Corresponding groups of individuals in and around another damaged nuclear power plant in Pennsylvania were used as controls. Groups were interviewed nine months and twelve months after the accident. In summarizing their work, the authors report, "The results show that mothers had an excess risk of experiencing clinical episodes of anxiety and depression during the year after the accident." They further note, "TMI mothers also reported more symptoms of anxiety and depression at subclinical levels at both interviews compared with controls." The mothers who were the post symptomatic were those who lived within five miles of the plant, had less adequte social support or had a prior psychiatric history. [Bromet (1982).] Schaeffer, McKinnon, and Baum (1985) specifically studied the depression outcome in the aftermath of the Three Mile Island accident. They found that, "TMI residents exhibited higher levels of depression and higher levels of control loss 49. relative to nonstress comparative subjects." These researchers also indicated that "analysis performed in the present study indicate persistence of height and levels of depression were found to be associated with increases in symptom reporting." They go on to note, "Thus, it appears that the findings dealing with depression in the field setting of TMI support those found in other field and laboratory settings." Schaeffer and his colleagues conclude, "Perhaps the greatest importance of the present study is the apparent chronic nature of symptoms of depression and the association of elevated levels of depression with heightened symptom reports," and refer to another follow-up study which had shown that at a point 28 months after the accident, "Depression levels have remained as high or higher than presently reported." M. Gibbs (1982) in her clinical study of Legler residents found clinical levels of paranoia and depression. She has concluded that depression and other psychopathologies in Legler residents result from a loss of control caused by environmental stress. The majority of Legler residents in her sample scored lower on measures of control than did comparison populations. Edelstein observes that "Ev~irtually every element of the Legler situation except the grass roots response robbed residents of control. Their predicament was human-caused; others acted to disrupt their lives. It was an involuntary situation. Management of the threat was controlled by outside forces." [Edelstein at 58.] Edelstein notes that "[a] key 50. element in the loss of control was the inherent uncertainty of the situation." (Id.] Legler residents no longer felt secure. As one resident expressed it: I'm always under tension. This has disrupted my peace. I have anxiety. I worry about the future. I'm down on this piece of property. I'm at the mercy of forces over which I have no control. [Id. at 59.2 Edelstein concludes, "Exposed to unpredicted events beyond their control, Legler residents had lost their illusion of invulnerability ... Not only had they failed to protect their families before, but there was little to suggest that they could be protective in the future (Janis, 1971)." [Id.] Lopez-Ibor, et al., in an article entitled "Psychopathological Aspects of the Toxic Oil Syndrome Catastrophe," discuss the mass toxic poisoning of food that occurred in Spain in 1981. More than 20,000 people were affected with pulmonary, neuromuscular and other systemic problems and 350 individuals died. Among the afflicted toxic oil syndrome patients, more than 6000 were referred for psychiatric treatment. The study reported on a subgroup of 2,926 adult patients. The authors report their data showing that "more than two-thirds of the patients showed anguish, anxiety, sadness and depression; more than one-half showed irritability and insomnia; and 20-30 percent showed lability of 51. affect, loss of short-term memory, loss of concentration, feelings of personal inadequacy or loss of vitality." Edelstein observes that '[w]hile it is difficult to conclude that [children] are affected in the same way as adults, it is clear that they are stressed by the experience." [Edelstein at 98.2 He notes two sources of such stress: 1) parental worry that is passed along to children and family tension growing out of parental stress; and 2) children's own experiences, including the consequences of being taught to fear. [Id.] Edelstein makes the astute observation that "[flor children whose entire world revolves around home even more narrowly than it is likely to do for their parents, the psychological threat is all the more powerful." [Id. at 101.] In Legler, parents literally had to teach the children to fear tap water. "The transformation of a benign environment into a feared one represents a disconcerting constriction of freedom for a child." Edelstein reports that when the central water source was installed in Legler, some of the children had become so sensitized to the possible dangers of water that they refused to drink it or to play under the sprinkler, unable to get past the belief that to do so was dangerous. Freedman (1981) describes very young children at Love Canal who had "chronic nightmares of toxins oozing from their 52. bodies." Both Freedman and Lois Gibbs (1982) have stated that younger children at Love Canal feared premature death. Freedman reports on the suicide of a 14 year old girl, one of three child suicides that occurred at Love Canal in the summer of 1980. She had reportedly feared that she would develop cancer as had members of eight of the twelve families on her block. Bromet, et al., published their work on the effects of toxic disaster on the mental health of children in a paper entitled, "Mental Health of Children Near the Three Mile Island Reactor." They concluded that the mental health of the children can be affected by stability in the home. To the extent that there is significant stress on the family from exposure, then it would be expected that the individual distress of the children would be commensurately greater. Dr. Janet Newman published her clinical observations on children who had survived the Buffalo Creek flood disaster. She notes that "most of the 224 children who were survivor-plaintiffs of the Buffalo Creek disaster were impaired by their experiences." Major factors were the child's developmental level at the time of the flood, the child's perceptions of the reaction of his or her family, and the child's direct exposure to the disaster. She notes that "these children shared a modified sense of reality, increased vulnerability to future stresses, altered senses of the power 53. of the self, and early awareness of fragmentation and death." She further goes on to indicate, "these factors could lead to after-trauma in later life if they cannot make the necessary adaptations." Burke, et al., (1982) studied children's emotional problems following a natural disaster, a severe winter blizzard of disaster proportions. She had access to rating scales completed on the subject children six months before the blizzard as part of their participation in a Head Start program. The scores on the rating scales five months after the blizzard showed that "some problem behavior scores had increased significantly." They further found that "the sub-groups of children at higher risk were boys, whose anxiety scale scores increased, and those children accepted for Head Start only because their parents said they had special needs, whose aggressive conduct scale scores increased." The study also confirmed the authors' previous impressions that parents tend to deny their children's problems after a disaster. Beverly Raphael in a paper co-authored with Middleton (1987) reviews the findings from three major disasters in Australia: the Darwin Cyclone which occurred on Christmas of 19T4, the Granville rail disaster in 1977, and the Ash Wednesday bush fires in 1983. The authors note that individuals studying the aftermath of those disasters found high levels of psychiatric morbidity. They also quote studies by McFarlane that observed that children tended to appear relatively well after the disasters but that later "a significant number developed a substantial morbidity that continued well into the second year following the disaster." Raphael also summarizes McFarlane who noted that the children's morbidity was correlated to some degree with their parents' ongoing preocupation with their own disaster experience and post-traumatic stress disorder," and notes that "McFarlane concluded the post-traumatic reactive phenomenon were very common in the school children but were often not recognized by teachers and other adults who regularly spent time with the children." Dr. Lifton in his report on the psychological conditions of the Buffalo Creek survivors states that child psychiatrists examining children in Buffalo Creek noted that "young children are particularly susceptible to the despair and other symptom manifestations of their parents." The legacy of disaster may extend far into the future, according to Lifton: There is, in fact, mounting evidence that the effects of disaster can extend over generations, and that adverse effects can occur in children of survivors, even when the children are born some years after a particular disaster. That has been true of children of concentration camp survivors, as Rakoff and his associates (among others) have demonstrated, because "there is not only a sick member, but the family itself is a collection of severely disturbed and traumatized individuals." 55. [Lifton (1976) at 14.] Margaret Gibbs, publishing her clinical research findings on Legler residents involved in a lawsuit, stated: It seems to the author an inescapable conclusion that although many individuals in the litigation group may be well-adjusted, nevertheless the proportion of individuals with serious psychological problems, is much higher than one would expect in a comparable group which had not undergone the same stress. It is particularly impressive that these consequences remain two or three years after the period when most of the stresses occurred. The presence of serious pathology today, especially in areas other than health worry, attests to the power, pervasiveness and long-term nature of the stress experienced. [M. Gibbs (1982) at 37-39 (emphasis added).] Shaeffer, McKinnon and Baum, in their study of depression as an outcome of the TMI disaster, cite a follow-up study done by others 28 months after the TMI accident showing that depression levels remained as high or higher than the earlier study done by Shaeffer. Baum, et al., in their paper "Coping with Victimization by Technological Disaster," observe that "[technological disasters, particularly those involving radiation or toxic substances, pose a number of threats that pass quickly, but they also pose continuing threats." [Baum (1983) at 121 (emphasis in original).] Since Baum and his colleagues judge 56. that "the point of worst impact may not pass with the event" and that "(pjerceived threat may continue indefinitely," the question of prolonged effects is squarely raised. They address the question based on their review of the literature: Few studies have examined the prolonged effects of technological disasters. Those that have been done share several methodological limitations including very small samples, loose methodological foundations (e.g., case studies on a few individuals), and a short time span (e.g., 4 months to 1 1/2 years post disaster) of reported effects. Some studies have avoided these problems, including one on the effects of the Buffalo Creek Dam collapse (Gleser, Green, and Winget, 1978). The Buffalo Creek accident involved the collapse of a slag dam constructed by a mining company. The dam gave way and the resulting, violent flood devasted a long stretch of the valley below. Gleser et al. (1978) followed a group of litigants for several years following the disaster reporting evidence of long-term effects. Two years after the dam accident, survivors exhibited greater anxiety, depression, social isolation, disruption of daily activities and somatic concerns than did a group not directly affected by the flood. Other data demonstrated continuing problems for these victims up to 4 years after the initial accident. The severity of these reported symptoms was found to be comparable to the level seen in psychiatric outpatient clinics. While natural disaster may also pose some chronic problems, we feel that the combination of factors underlying technological disaster is more likely to cause long-term uncertainty and consequent psychological effects than are natural disasters. Based on this reasoning, we have been studying the situation at TMI. The negative effects of the accident and aftermath appear to be greater than would be expected from a flood, storm or other disaster. More importantly, these effects are chronic: We have found evidence of 57. continued distress two years after the accident and have found that perception of threat and uncertainty were also persistent. We have therefore been studying victimization by a powerful event that has had and continues to have consequences for many of those affected. The symptomatic expression of the psychological distress experienced by the Billerica Street residents naturally varied from individual to individual, and was effected by variables such as the individuals pre-existing coping mechanisms, the length of time they had lived on Billerica Street, the presence or absence of any overt illness which could be attributed to the contamination, the magnitude of their emotional and financial investment in the home, and their basic personality style. Obviously, these factors interact in a very individual manner producing a range of symptomatic responses. Given that this is an aggregate report it would not be appropriate to go into the specifies for each individual. Through my interviews I did find higher levels of generalized anxiety and depression than one would expect in a population of similar background and size. Perhaps the best way to convey the range and extent of this anxiety and depression is to simply list the comments and quotations of Billerica Street residents which relate to these feelings: "Longer it goes on, more disheartening." "I keep thinking about the house." "The pressure of this whole thing that has and is happening effects me very much." "I had to go [to psychiatrist]. I thought I was having a nervous breakdown." [This 58. individual had also had major problems with insomnia and had been prescribed a minor tranquilizer.] "So suddenly mixed with anger was fear -- we had no idea what we were living on top of." [Later said anger overtaken by fear. -- especially fear for the children."] "Intense to the point of being unbearable." [Psychological stress in the weeks leading up to the relocation.] -- "Absolutely terrible time." "This central contradiction was driving us nuts. -- How can you fence around our units to keep others out and keep us in?" "Felt trapped." [Woman describing how she sat down on her front steps and began crying when she realized that she would never be able to sell her house.] "I've had flashes of anger at inappropriate times." "Extremely trapped -- betrayed." "I was in a cave -- giant grasshoppers trying to get in the cave -- very frightening -- a monster-type of nightmare." [Description of a nightmare reported by a woman who had not previously been prone to nightmares -- she also had dreams that she had developed cancer.] "Felt awful -- every day come home from work -- wonder what's happening." "The not knowing was the worst for me. -- I couldn't stand the not knowing." "You just couldn't take it -- emotionally drained." "I was getting cysts and boils -- never gotten before." [This individual also described developing insomnia and stomach pains.] "Want to get homes and go on with our lives." "Even here [relocation site] still a lot of stress -- can't forget this happened." 59. Relocation As mentioned in the introduction to this report, I interviewed the Lowell residents after they had been relocated to the Tewksbury condominiums. In fact, they had been living there for approximately six months. I was surprised to learn how stressful the relocation had been for them and still was. I had naively assumed that the relocation would have resolved some of their anxieties. This was not the case. In a very real sense the relocation process and their months in Tewksbury were simply another phase of the traumatic experience. The relocation had not brought the sense of closure that I thought it might. I believe there are several reasons why the relocation has not relieved as much stress as it might have been expected to. First of all, the political struggle that they had to wage to bring attention to their situation and to obtain the relocation left them with a very cynical view of the governmental process. The relocation was not seen as a helpful gesture made out of concern for them, but rather a political act that was primarily intended to avoid any embarrassment to the state government. The timing and handling of the move also contributed to their anger. They felt that they received mixed feelings about when 60. they were going to be moved and received very short notice before the actual move itself. They also felt that the move itself was not handled well. After the move they did not feel that they were wanted by the other residents of the condominium complex. I have provided illustrative quotes of this sentiment above and will provide more below. Many of the residents used the metaphor of a refugee camp to describe their view of life in Tewksbury. Finally, there was a pervasive feeling of lack of control. They were now in a position of paying the mortgage on worthless houses that they would likely never inhabit again, could not sell, and were unable to obtain insurance for. Their rent at Tewksbury was being paid for them and thus they did not feel in control of that situation. The lack of closure to the situation further added to this feeling of loss of control over their lives and perpetuated the refugee camp atmosphere of being in limbo while the powers that be decide what to do with them. I found the comments of the residents to be quite graphic and self-explanatory on this subject as illustrated by the examples below: "We're still stuck here. Feels like we're being tortured." [This woman also described feeling like they were stuck in the middle while everyone decided things for them.] "We have no control or say over our own lives." "Great relief at the time to be relocated -- but now it is a whole different game." 61. "Just hope it would hurry up and get over with." "Biggest thing is not being able to plan or move, we're tied here for as long as it takes." "I'm paying the mortgage on my worthless home." "Really not free - still tethered to that prison cell." "Aspect of having somebody pay rent for me really bothers me." "Moved from prison to Siberia." [Further indicated that swingsets were not allowed and the restrictions were much tighter in Tewksbury."] "It's a shock to have to pick up and leave." "To move is tearing yourself apart and to have to part with your possessions." "Real strong sense of dislocation." "Are we going home to- the red house or the white house?" [Parent's description of a child's confusion.] Same child also said "Let's go home -- this isn't home." "Pretty uprooting. Being forced into it, and hastily." "Toying with our lives." "Out-of-towners." "Still trapped." "Not free to come and go." "Limits the ability to even dream about doing something." 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