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4
Findings from the Public Hearing Process

The original purpose of the public hearing process associated with the present study was twofold:

  1. to determine what the experimental conditions were for the veterans involved in the testing programs; and

  2. to identify the constellation of diseases from which the veterans were suffering.

In terms of testing conditions, it was not clear at the beginning of the study whether the committee would be able to obtain authoritative documentation regarding the experimental protocols employed in the World War II (WWII) testing programs. The committee felt that estimates of conditions, such as vapor concentrations in the chambers, would be helpful in relating the information from the scientific literature to the possible exposure levels experienced by the veterans. The committee therefore sought descriptions of the veterans' symptoms in the period shortly following their exposure, the duration of the gas chamber tests, and the number of times they were in the gas chamber, for the purpose of estimating the possible exposure. Fortunately, as detailed in Chapter 3, the committee was able to obtain numerous official reports concerning the tests and, as the study progressed, knowledge of many of the experimental protocols grew.

The second purpose of identifying the diseases took on a special importance as it became obvious that there were great gaps in the scientific and medical literature. Particularly regarding the long-term health consequences of exposure to mustard agents and Lewisite, it seemed as if the gaps outnumbered the answers. As a result, the set of



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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite 4 Findings from the Public Hearing Process The original purpose of the public hearing process associated with the present study was twofold: to determine what the experimental conditions were for the veterans involved in the testing programs; and to identify the constellation of diseases from which the veterans were suffering. In terms of testing conditions, it was not clear at the beginning of the study whether the committee would be able to obtain authoritative documentation regarding the experimental protocols employed in the World War II (WWII) testing programs. The committee felt that estimates of conditions, such as vapor concentrations in the chambers, would be helpful in relating the information from the scientific literature to the possible exposure levels experienced by the veterans. The committee therefore sought descriptions of the veterans' symptoms in the period shortly following their exposure, the duration of the gas chamber tests, and the number of times they were in the gas chamber, for the purpose of estimating the possible exposure. Fortunately, as detailed in Chapter 3, the committee was able to obtain numerous official reports concerning the tests and, as the study progressed, knowledge of many of the experimental protocols grew. The second purpose of identifying the diseases took on a special importance as it became obvious that there were great gaps in the scientific and medical literature. Particularly regarding the long-term health consequences of exposure to mustard agents and Lewisite, it seemed as if the gaps outnumbered the answers. As a result, the set of

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite health problems reported to the committee by the veterans became extremely valuable in highlighting those gaps that were important to consider. Input to the public hearing process was solicited in a number of ways, beginning in late January 1992. The Disabled American Veterans (DAV) and the American Legion generously provided space for hearing announcements in their respective official publications (see Appendix G). The committee was also provided with a list of affected veterans who had contacted the offices of U.S. Congressman Porter Goss (Florida), and letters of invitation were sent to each person on that list. At the committee's request, the Department of Veterans Affairs (VA) also sent hearing announcements to each individual who had a claim pending for injuries from exposure to mustard agents or Lewisite. Finally, some input was received as a result of discussions among veterans and scattered stories in the press. In order to allow the greatest flexibility, veterans who were unable to come to the public hearing were offered two alternative methods of giving statements: oral statements taken by the study staff over the telephone, and written statements in letter form. Each letter received from a veteran was acknowledged with a letter from the study director. In some cases, additional information was needed and requested, such as current health problems or more detail regarding the veteran's exposure. There were a number of cases in which the study staff imparted useful information to the veterans, both over the telephone and in letters. For example, of all the testing program locations, only the Naval Research Laboratory (NRL) had maintained records of individuals who had been human subjects during WWII. In a number of cases, the study staff was able to inform veterans about how to obtain their records from the NRL.1 In other cases, the study staff informed veterans about how  to arrange for a local DAV representative to assist them  in gathering information and filing claims with the VA. Prior to the hearing, summaries of each telephone call and copies of each letter received were sent to the committee members. Twenty veterans appeared in person to present statements at the hearing, held in Washington, D.C., on April 15, 1992 (Appendix G). Each veteran had five minutes to make his presentation, and ample time for committee questions was allowed. In addition, speakers were also given the 1   These NRL records included copies of actual data sheets for the experiment in which the individual was involved. Data sheets contained information about the gas concentration, the number of trials, any blood counts and temperature measurements, as well as the location and severity of erythema for each person. In some cases, such records provided the only documentation that an individual had been in the tests.

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite opportunity to supplement their statements with written documentation. After the hearing, each veteran who spoke at the hearing received a letter of thanks from the chairman of the committee. Other veterans who participated through the mail and telephone received a memorandum from the study director informing them that the hearing had taken place and outlining the committee's next steps. The press coverage generated by the public hearing elicited additional input from veterans who were previously unaware of the hearing or the committee's activities. Statements from these veterans were accepted and incorporated into the committee's deliberations until the end of August 1992. Thus, input from veterans was accepted by the committee during approximately seven months of the study. RESULTS AND FINDINGS Types of Veteran Exposures A total of 257 individuals, including veterans and surviving spouses or relatives, reported a variety of types of exposures to the committee. Although some types of exposures were expected, other types had not been foreseen by the committee. For example, as expected, many men reported their experiences in gas chamber tests, such as those conducted at the NRL, and others reported having participated in patch tests. In addition, a number of men who had participated in field tests contacted the committee. The largest additional group of veterans consisted of those who had been trained to handle toxic gases as part of their military assignments, often as part of military units organized under the Chemical Warfare Service (CWS). As outlined in Chapter 3, such men performed many types of functions, including loading gas bombs and decontamination of test sites and equipment. The committee also heard from a very small group of veterans who had been exposed to sulfur mustard in combat. These individuals were either World War I veterans or veterans who had been injured in the Bari harbor bombing in WWII. Another large group of veterans who were exposed to the chemical warfare agents during various training exercises also contacted the committee. Experiences among this group were quite heterogeneous, ranging from drops of sulfur mustard applied to the skin to reports of use of sulfur mustard (as opposed to tear gas) in gas mask training exercises. One woman who had been an Army pilot during WWII reported having transported a variety of toxic chemicals from place to place within the United States, in addition to being exposed to Lewisite during flight training. It should be emphasized that the vast majority of veterans contacting

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite the committee served during WWII. However, a number of men had served during later time periods, including the wars in Korea and Vietnam, and had participated in sulfur mustard and Lewisite testing programs at Edgewood Arsenal in the 1950s and 1960s. In addition, some veterans had experienced exposures to multiple types of chemicals or radiation. This was especially true for former CWS personnel, who were trained with and exposed to a multitude of chemical agents, including phosgene. Finally, some of the men who had participated in the chemical warfare testing programs also participated in later atomic bomb or drug tests (see also Chapter 3 and Appendix F). Health Problems Reported The many different types of health problems reported by the veterans exposed to mustard agents and Lewisite (Appendix G) are summarized here. However, no analysis of the frequency of specific health problems was carried out, nor was any of the information reported by the veterans compared with data from unexposed populations. Such analysis was not possible due to the manner in which the information was gathered, nor was it appropriate to the task of this committee. In addition, it should be emphasized that disease and health condition categories were based on veteran self-reports and, thus, did not always fall into strict medical diagnostic categories. Nevertheless, consideration of the health problems reported did aid the committee in identifying important gaps in the knowledge base about the health effects of these warfare agents. Various types of cancer were reported by these veterans. Most frequent were skin cancers, followed by lung or laryngeal cancer, bladder cancer, and prostate cancer. Tumors or polyps, not identified as cancer, were reported most often in the skin, larynx, and intestines. Among nonmalignant diseases, by far the most frequent problems reported were pulmonary and respiratory diseases, including asthma, chronic bronchitis, emphysema, laryngitis, sinusitis, and other respiratory problems, including repeated bouts of pneumonia and chronic respiratory infections. Skin problems were also common and included scars, repeated and varied types of irritations, and chronic rashes. Among eye diseases, chronic conjunctivitis and corneal opacities were reported, as well as cataracts, glaucoma, and other problems. Cardiovascular problems ranging from heart attacks to strokes and high blood pressure were commonly reported. Gastrointestinal difficulties included difficulty swallowing, esophageal and laryngeal strictures (narrowing), chronic nausea, stomach ulcers, and Crohn's disease (chronic inflammation and scarring of the small intestine, often leading to obstruction). In addition, benign prostate disease was reported. There were reports of diabetes, allergies, liver and kidney diseases, blood and

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite lymphatic diseases, and disturbances in immune function. There were also frequent reports of arthritis and bone disease, headaches, and muscle spasms. Finally, a few reported hair and tooth loss. Quite frequent were reports of neurological disease and psychological difficulties. Neurological problems included multiple sclerosis and amyotrophic lateral sclerosis (degenerative diseases of the central nervous system), abnormal sensory disturbances, Alzheimer's disease, paralysis and weakness, and chronic pain, among others. Among those reporting psychological difficulties, some had been diagnosed with post-traumatic stress disorder, others experienced chronic depression or anxiety, and still others described themselves as being very nervous or tense. It should be noted that psychological problems and any sexual problems, such as those resulting from genital scars left by gas burns to the scrotum and penis, were often extremely difficult for the men to discuss, especially on the telephone or in person, and may well have been underreported. Personal Aspects of Veteran Reports Beyond the facts of their exposure and subsequent health problems, there were certain aspects of the veterans' experiences that are compelling and drew the attention of the committee. For example, men who participated in the chamber tests commonly reported that they had originally volunteered to ''test summer clothing" in exchange for extra leave time before being sent overseas. It was not until they arrived at the test location that they were told about the gas chamber tests and, even then, many were not told to what agent they would be exposed. Those who became sick during the "man-break" tests reported being threatened with court martial if they did not continue the test and reenter the gas chambers. Some even reported that they saw other subjects collapse in the chamber and that they never saw these men again after they were removed from the chamber. In all such cases, the men reported that they had assumed the person had died. Other men recalled that the chamber door could not be opened from the inside and that this frightened them by making them feel trapped. In the majority of statements, experiences were related in such precise detail that a supportable conclusion could be drawn that many of these men experienced intense fear about what was happening to them during the tests. All the men in the chamber tests vividly recalled being told that they would be sent to prison if they ever revealed their participation in these tests. Some were even shown pictures of Fort Leavenworth to reinforce the threat of prosecution. They further reported that this possibility prevented them from telling their wives, parents, family doctors, or anyone else about what had happened to

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite them. Some of the men told the committee that they had been asked directly by physicians if they had been exposed to sulfur mustard; these men typically denied any exposure in such circumstances. Finally, in a few cases, wives reported that their husbands revealed their participation in these tests only on their deathbeds. Most of the men involved in field tests had experiences similar to those in the chamber tests regarding the instructions about secrecy. However, except for individuals who were injured or witnessed a severe injury or death of a comrade, this group did not uniformly report the level of intense fear during the tests as that reported by the chamber test group. Most often the men involved in field tests were drawn from CWS units, such as the 94th and 95th Medical Gas Treatment Battalions, some of whom participated in field tests in Florida. Such subjects often had additional training in toxic gases in advance of their participation in tests, and this training may have better prepared them for the experience. Veterans whose exposures occurred during their training or work as part of the CWS also reported varied levels of fear. Again, the most intense feelings of fear were reported by those who had been involved in some kind of accident, such as one veteran who described being severely injured by an explosion of mustard gas shells during a drill that resulted in the deaths of two other soldiers. Two important additional factors were reported by those who routinely worked with chemical warfare agents. One common factor was that many of the men were very young (often as young as 17 years of age), had little formal education, and were afraid of the chemicals. The second common factor was that protective measures, including impregnated clothing and even gas masks on occasion, were not always used or available. The least amount of fear was reported by veterans who participated in patch tests, a few of whom said that they only remembered the incident because of the faint scars on their arms. Some of these veterans reported no health problems that they attributed to their exposure to the agents. The final but significant personal difficulty reported, especially by those who participated in chamber tests, was how frustrating it had been to be ill and not be able to file a disability claim, often because there was no proof or record of the tests and no one knew or believed that they had happened. Even among those working in CWS units, there was great variability in the handling of cases after separation from the military. For example, some men were discharged with full disability due to sulfur mustard or other chemical injuries, while others with similar health problems were not. Some also reported that their military records did not include certain assignments and time periods; others

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite had complete military records and numerous citations for their work with chemical agents. TREATMENT OF HUMAN SUBJECTS In the course of this study, the committee examined many government documents and technical summaries of experiments with mustard agents and Lewisite that involved the use of human subjects. Although information regarding the treatment of human subjects was scarce, it was possible to piece together a general picture. Certain aspects of these reports were striking and, coupled with very precise and matching statements of many veterans, were impossible for the committee to ignore. A brief description of these aspects is included here to corroborate the statements of the veterans. It is also presented to make manifest all of the information and challenges that faced this committee and to offer additional background for some of the directions taken by the committee during the study. Detailed descriptions, or copies of official instructions, of how human subjects were recruited are lacking, but are outlined in Cochrane's (1946) historical description of the research done under the CWS (declassified in 1991) and other papers. One report, "Chamber Tests with Human Subjects," includes a short section that describes the treatment of subjects in the initial chamber tests at the NRL (Taylor et al., 1943; see also Appendix D). This section details how the men were induced to participate by offers of extra leave and a "change of scenery." It further states that the men should not be told too much in the beginning, but that after a few times in the chamber they can be told "almost anything without affecting their morale.'' In contrast, Cochrane states that tests at Camp Sibert in Alabama had to be halted due to a lack of willing subjects. The official explanation was that the commanding officers actively discouraged men from becoming subjects, because they did not want to have to replace them. Cochrane, who was present at Camp Sibert and notes in the text that men were sometimes burned more than necessary, writes that the "apathy may have been due to the look of the scars on the men returned to the training companies after the tests." The NRL report provides additional evidence for severe injuries during the testing programs: in praising the morale of the subjects, it describes how men sent to the hospital and incapacitated for a month were "not upset and even volunteered for further trials" (Taylor et al., 1943; see also Appendix D). However, morale may not have been uniformly high at NRL, because the same report also gives instructions for dealing with uncooperative individuals. Such subjects were to be given "a short, explanatory talk and, if necessary, a slight verbal 'dressing down."' Finally, although no man

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite was to be sent into the chamber without the Medical Officer's approval, "malingerers and psychoneurotics" were handled by "minimizing their symptoms and sending them into the chamber." In a section on physical examination and requirements, warnings are given against mistaking certain physical ailments caused by "physical unfitness" for gas manifestations. The ailments listed are conjunctivitis, laryngitis, nausea, and shock, all of which were well-known symptoms of mustard agent or Lewisite poisoning. However, no instructions for distinguishing these symptoms as real gas manifestations are given in this summary report, or anywhere else the committee could find. Evidence that such distinctions were possibly made inappropriately was provided by an individual veteran's NRL record sent to the committee. This record shows a notation of mild laryngitis after the third time in the chamber; no such notation was recorded prior to the first chamber trial. Yet, the person was sent back into the chamber two more times and the final record notes "severe laryngitis." As noted in Chapters 3 and 7, occurrence of this symptom would have been a clear indication of cumulative inhalation exposure beyond 100 Ct. Physical examinations, according to the NRL summary, included a complete blood count, urinalysis, and body temperature. Blood counts were to be redone after a cumulative Ct of 4,800. Yet cursory examination of the very few individual records submitted to the committee indicates that blood counts may not have been repeated in all such cases. This short summary is not exhaustive of all the information available, nor does it cover field tests and other procedures. It is an attempt to portray the atmosphere in which the experiments were done and to describe the attitudes brought to these experiments by the military research establishment. Some would argue that this description has no place in a report of a committee charged to survey scientific literature. Further, it was a war, a worldwide emergency that understandably required certain goals to take precedence over others, possibly to the detriment of sound medical research practices concerning individual well-being. In fact, the authors of the NRL summary state their belief that the men coming through their program benefited from  their experience and were better prepared than most to confront the realities of gas warfare. It may also be fair to argue that no formalized set of rules, carrying the weight of law, existed in 1942 to govern the treatment of human subjects. However, a Department of the Army Inspector General's report in 1975 documented how these patterns of neglect of human subjects, established during WWII, continued through the 1950s and 1960s, well beyond the immediacy of wartime concerns (Taylor and Johnson, 1975; see also Chapter 3 and Appendix F). These patterns even

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite continued after the formal set of rules, the Nuremberg Code of 1947, was developed and adopted (see Appendix F). The committee believes that the individual investigators involved in the WWII testing programs were convinced of the likelihood of great numbers of gas casualties and that they believed their work to be necessary to save lives. Yet, exposure level and injury are key questions in the determination of risk for the affected individuals, and these questions cannot be separated from the consideration of scientific data gleaned from other studies, especially those done with animals. The reliability of the military's official human exposure data is another key question, and these data are undermined by the demonstrated patterns of inconsistency in the reporting of injuries to the subjects, their severity, and their cause. CONCLUSIONS AND ACTIONS TAKEN There is no doubt that some veterans who were involved in the chemical warfare testing programs and other circumstances of exposure to mustard agents and Lewisite have been dealing with serious and debilitating diseases for decades. This burden has been further compounded by the secrecy oath taken by the veterans and faithfully kept for nearly 50 years, only to experience the denials of government agencies and their representatives that such tests and activities ever occurred. The committee understands the anger of veterans who believe they have been victims of injustice and neglect. In addition, the committee is greatly impressed by the level of patriotism exhibited by these individuals; almost to a man, they obeyed their orders. Finally, the committee is indebted to the veterans for helping to identify key gaps in the scientific and medical literature. Special attention was given after the public hearing to reviewing again those areas of the literature that were especially lacking in substantive information yet represented the only work relating to certain diseases reported by the veterans. Another action taken in partial response to the findings of the public hearing process was the addition of a clinical psychologist to the committee. This added expertise facilitated the review of information available regarding the psychological effects of chemical and biological warfare environments and environmental toxins. Thus, the possible psychological health effects of exposure to mustard agents and Lewisite, and of the circumstances of exposure, were treated by the committee with care and importance equal to that of the physiological health effects. Recognizing the difficulties the veterans had experienced in communicating with various agencies over the years, the committee also requested input from an expert in risk communication. The resulting presentation by Professor Peter Sandman of Rutgers University offered

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Veterans at Risk: The Health Effects of Mustard Gas and Lewisite the committee a strong base of understanding regarding risk perception and how such perceptions can be lessened or made worse (Appendix A). Of special value was a better understanding of how the study of risk communication could aid the committee in framing conclusions about exposure and disease in ways, and in language, that would be least likely to increase the perception of risk already felt by the veterans. Finally, the committee sought input from a bioethicist regarding the conduct of the WWII experiments. The primary motivation for this request was the committee's wish to inform itself about the ethical and legal issues of informed consent and to explore what its responsibilities may be from a bioethical viewpoint, as physicians and scientists confronted with unanticipated and disturbing information about these testing programs. Professor Jay Katz from Yale University met with the committee in June 1992 to outline the history and development of the Nuremberg Code of 1947 and its ethical and legal ramifications, especially as they might apply to the issues in the present study (Appendix A; see also Appendix F). In addition, Dr. Katz commented about the way the experiments were conducted, the secrecy of the experiments, and the lack of medical follow-up of the human subjects, and urged the committee to take a strong stand on these issues. His presentation was followed by a letter further explicating his view that the committee would miss an important and needed opportunity if it simply completed an isolated survey of the scientific and medical literature, without comment on the experiments themselves. This letter is included in Appendix H. The committee has drawn valuable information and guidance from the presentations described above. This report, its contents and its recommendations, reflects long and careful consideration of all the issues and suggestions, much discussion, and a final consensus. The inclusion of information about how the experiments were conducted and the medical treatment afforded to the human subjects is based on what the committee believes to be justified scientific, as well as humanitarian and ethical grounds. REFERENCES Cochrane RC. 1946. Medical research in chemical warfare. Available through the U.S. Army Chemical Defense Research, Development and Engineering Center, Aberdeen Proving Ground, MD. Taylor JR, Johnson WN. 1975. Research Report Concerning the Use of Volunteers in Chemical Agent Research. DAIG-IN 21-75. Washington, DC : Department of the Army, Office of the Inspector General and Auditor General. Taylor WH, Carhart HW, Daily LE. 1943. Chamber Tests with Human Subjects. I. Design and Operation of Chamber. II. Initial Tests of Navy Issue Protective Clothing Against H Vapor. NRL 2208. Washington, DC: Naval Research Laboratory.