by Dan Fagin
Hills went ahead with his investigation, producing an internal report that described what he saw inside the azo production buildings.28 Even though dye workers generally wore respirators and other protective gear during the dustiest steps of the manufacturing process (at least while Hills was watching), his tests of the cassette filters the workers wore outside their respirators revealed airborne concentrations of dye particles as high as 1.64 milligrams per square meter—a result Hills later called “quite high, for something that’s a likely carcinogen.” But he dropped plans to publish his findings in the scientific literature because without urine testing there was no way to know how much dust the workers were actually inhaling. He tried to find azo workers elsewhere to test, but Ciba-Geigy was one of the last large factories in the United States that still used ortho-tolidine and ortho-dianisidine. Without the participation of the azo dye men from Toms River, Hills could not find enough workers to test to yield credible results, especially because so many were heavy smokers and thus already had mutagenic compounds from cigarettes in their urine. Thanks to the success of Richard Doll’s huge population-based smoking studies, a factory-based study that was too small to take smoking habits into account seemed hopelessly unreliable by comparison.
Years later, Hills would look back and conclude that his abortive research effort had come too late. By the 1980s, production of ortho-tolidine and ortho-dianisidine was shifting to factories in Asia, just as benzidine had shifted overseas in the 1970s and BNA in the 1950s. Soon, Ciba-Geigy would give up on azos, too, in Toms River—and also epichlorohydrin, nitrobenzene, and all the rest. Then there would be nothing left to do but to clean up the messes, count the cases, and try to figure out who to blame.
CHAPTER TWELVE
Acceptable Risks
In early 1986, Michael Gillick, still alive and beating the odds at age seven, was undergoing experimental treatments at Memorial Sloan-Kettering Cancer Center in Manhattan, perhaps the most famous cancer hospital on the planet. Families from all over the world brought their children to its pediatric oncology ward, yet Linda Gillick seemed to meet someone from the Toms River region every time she was in the family room. During one remarkable week in 1986, she counted seven Ocean County kids on the ward, including Randy Lynnworth, whose medulloblastoma had recently returned. Now that there was so much publicity about Ciba-Geigy, including the pipeline breach, which had occurred only a few blocks from her home, Gillick began to wonder whether her son’s illness was really the result of nothing more than “bad luck or bad genes,” as someone in town had told her. She wondered whether it was, in fact, part of a larger pattern.
The experimental drug did not curb Michael Gillick’s neuroblastoma; his stay at Sloan-Kettering ended with no improvement. The Gillicks went home to their precarious life in Toms River, with one addition. Linda Gillick taped an Ocean County map to an interior door at the house. Whenever she heard of another local child with cancer—she knew of dozens already—she inserted a red pushpin at the location where the child lived. In her eyes, the pins seemed to cluster in Toms River, in an area that included her home.
Gillick mostly kept her observations to herself, but her caution hardly mattered because by the spring of 1986, Toms River was roiling. After months of public pressure, the county health department began testing backyard wells near the route of Ciba-Geigy’s leaky waste pipeline. In the Shelter Cove neighborhood, where the pipeline entered Barnegat Bay, they found eighteen wells tainted by perchloroethylene, a probable carcinogen that was a component of Ciba-Geigy’s oceangoing waste. The more likely source was a nearby dry cleaner, but the factory’s critics blamed Ciba-Geigy and noted that there had been several small pipeline leaks in addition to the large one in 1984. Frank Livelli, a canny retiree who headed the newly formed Save Our Ocean Committee and was fast becoming the company’s chief local antagonist, announced that he knew of two brain cancer cases among children in Shelter Cove. He suggested that there could be a connection between those two cases and the recent disclosure that five current or former Ciba-Geigy workers had brain cancer.1
The job of trying to answer those accusations fell to Chuck Kauffman, who was unprepared for the task. Lithe, balding, and gregarious, Kauffman was a former egg farmer who had lived in Ocean County for all but a few years of his life (he was fifty-seven in 1986) and now ran the county health department, where his title was health coordinator. He had witnessed, firsthand, the shift in local environmental attitudes. Back in the mid-1970s, there was no controversy over the feckless efforts of his department, and the state, to prevent contamination from spreading off the Reich Farm property. Similarly, no one complained in 1974 when the county abandoned a halfhearted effort to survey the residents of Pleasant Plains about their health problems. Now, a dozen years later, the situation was very different. Ciba-Geigy’s misdeeds were chronicled daily in the local papers, along with many reports of drinking water contamination and unexplained illness. Now residents had different expectations for their health department.
Kauffman’s department could not meet those expectations. He supervised almost two hundred employees (up from just ten in 1973, when he took the job), but most were nurses who worked with the poor or homebound. The department’s newly formed environmental section had a staff of fewer than a dozen, none of whom had any expertise in groundwater contamination. In the past, Kauffman had dealt with that deficiency by asking the chemists at Ciba-Geigy for assistance, but that was impossible now that the company was seen as a polluter instead of a protector. “There wasn’t a lot we could do or say,” he recalled years later. “We didn’t have the environmental tools and the expertise.”
Kauffman watched with dismay as more people every day became convinced that his county was a cancer hotspot and that Ciba-Geigy was the cause. He found that hard to believe—it seemed too simplistic to blame one company for cancer cases all over the county. Still, he could not shake the feeling that there did seem to be an unusually high number of local children with cancer, especially brain tumors and leukemia. He even called several hospitals to try to find out how many children from Toms River had been admitted for cancer treatment. It was a fool’s errand, he discovered, because the hospital records were inaccessible, inconsistent, or hopelessly out of date.
Things came to a head at a packed meeting of the Ocean County Board of Health. For the first time in memory, a camera crew was there—from WNET-Thirteen, the biggest public television station in the New York City market. The station was working on a documentary about Ciba-Geigy and cancer in Toms River. As the camera rolled, an obviously uncomfortable representative of the Environmental Protection Agency—her name was Maria Pavlova—tried to explain why Ciba-Geigy would not have to clean up all of the ground-water it had contaminated at the factory site and nearby neighborhoods. A partial cleanup would be “acceptable” to the EPA as long as the resulting cancer risk to the surrounding population was no greater than one additional case per million people, she said. Frank Livelli, who was in the audience, pounced. “I really think what you’re trying to do, Dr. Pavlova, is to make the unacceptable acceptable,” he interrupted. “What you’re trying to say to the people is: Don’t worry about it. There will be one case of cancer in a million, and that person who gets it is someone you don’t know. He’s not a neighbor. He doesn’t have a family. He doesn’t have friends. He’s just an isolated incident and that’s the guy that’s going to get poisoned and going to get cancer. But you don’t look around the audience and say it could happen to you or to your child.”2
Chuck Kauffman, who was also in the audience, watched the faces of others in the crowd as Livelli spoke. Young mothers, retired couples … they all lived in Ocean County, his county, and they were racked with anxiety. His own efforts to keep track of cancer and other diseases around the county were haphazard, relying entirely on his own network of friends and colleagues. But he knew of an alternative system, housed in Trenton, that seemed more reliable. It was a cancer registry, a searchable list of ev
ery case in the state. So in August of 1986, Kauffman called the state health department and requested a registry-based investigation of childhood cancer incidence in Toms River. Was there a cluster, or not? He was hoping to settle the controversy, once and for all.
Ciba-Geigy had fought hard, and spent big, for the right to keep manufacturing dyes and plastics in Toms River. By mid-1986, the company had already spent millions to comply with the terms of the tough new ocean discharge permit the state had issued the previous year. Ciba-Geigy had improved its wastewater treatment system so much that when mysid shrimp were placed in a seawater mixture that was 50 percent effluent, more than half survived—a huge improvement over the results from five years earlier, when a mixture of just 4 percent effluent had killed half the mysids.3 In fact, the company’s wastewater was now less toxic than the residential effluent the Ocean County Utilities Authority was pumping into the Atlantic through its three outfall pipes. Ciba-Geigy executives did not come right out and say it, but the message was clear: If residents were worried about the health of the ocean, and not just interested in bashing Ciba-Geigy, they should clean up their own sewage, even if they had to pay higher sewer taxes as a result.
With the help of newly hired image consultants, Ciba-Geigy by 1986 was getting smarter about influencing public opinion. At the beginning of June, as local environmentalists prepared to hold another “Save Our Ocean Day” rally on the Lavallette boardwalk, Ciba-Geigy plant manager Victor Baker sent a “Dear Neighbor” letter to thirty-eight thousand Toms River homes touting the mysid shrimp results.4 The company even sent canvassers into the nearby Oak Ridge and Pine Lake Park developments—east and north of the factory—to try to rebuild trust with the neighbors.
Larger forces were conspiring against Ciba-Geigy, however. The price competition from Asian factories was brutal and unrelenting, and the wage differential was vast. On June 2, 1986, the same day many town residents got Victor Baker’s letter in their mailboxes, the company made an announcement that was, if not a complete surprise, nonetheless staggering: Ciba-Geigy was ending almost all chemical manufacturing in Toms River. After thirty-four years in which it had produced about three billion pounds of dyes and plastics—along with perhaps forty billon gallons of wastewater and two hundred thousand drums of toxic waste—the company was pulling out. Production of resins and other plastics was moving south to Ciba-Geigy’s huge pesticide plant in Alabama, where wages were much lower and there was far less environmental oversight. Manufacture of dye ingredients was shifting to Louisiana and to Asia, where wages and oversight were lower still. Only a small dye finishing operation and the research labs would stay in Toms River. Fewer than three hundred jobs would be left after the three-year transition period, down from the peak of more than thirteen hundred in 1968. Victor Baker and the other executives did not publicly blame their critics for the downsizing, but in private they said that the hostile environment in town was a factor.5
The workers were shocked and angry. No one really believed that chemical manufacturing had a long-term future in New Jersey—many large plants in the state had already closed—but Ciba-Geigy’s employees did not expect that the end would come so soon, and so abruptly, in Toms River. The union was not ready to give up completely on Ciba-Geigy, however, because Ciba-Geigy was not giving up completely on Toms River. As soon it was done shedding all those jobs, the company hoped to start adding them again—at a new pharmaceutical plant on the factory property. Compared to dyes, drug manufacturing was relatively clean and highly automated and thus less vulnerable to changing environmental standards and competition from cheaper labor elsewhere. Only eighty people would work there, but there might be many more jobs later.
The would-be renaissance came with a catch, however: Ciba-Geigy would build the pharmaceutical plant only if it could continue to use the ocean pipeline—a condition the company’s opponents vowed they would never accept. The pharmaceutical plant would produce far less wastewater than the dye and plastics operations—about one and a half million gallons per day, down from five million gallons—but the company’s critics thought that even one gallon would be too many. Ciba-Geigy’s ocean discharge permit expired in 1990, and the environmentalists resolved to prevent its renewal under any circumstances. “We had accomplished a lot already, and we just told ourselves that whatever it took, we were going to shut down that pipe,” remembered Nancy Menke Scott, a cofounder of Save Our Ocean. The company and its union, meanwhile, were just as resolved to the contrary. Ciba-Geigy had already shown that it was willing to spend millions to preserve its investment in Toms River, and its workers were ready to supply the muscle to go along with the millions.
The stage was set for a final struggle over the fate of Ciba-Geigy in Toms River. Resolving it would take three more years, during which time the local newspapers would be filled with several hundred anxiety-inducing stories about cancer and pollution. After being ignored for so long, both had become inescapable in Toms River.
Chuck Kauffman’s request for a study of childhood cancer incidence in Toms River ended up on the desk of Michael Berry, who was new to the state health department and excited about his work. That would change later. For now, though, he was fired up. He was supposed to spend 80 percent of his time working on air pollution issues, with the rest of his time occupied by his other assigned task: responding to calls about possible cancer clusters around the state.
After Kauffman’s call in August of 1986, Berry checked the department’s records and saw that his colleagues had logged three other calls since 1982 regarding childhood cancer in Toms River. One was from a neuro-oncologist in New York who had treated several local children. Yet none of the calls had led anywhere; there had not been any investigation—not even a cursory one—of childhood cancer in Toms River. In fact, the health department had investigated very few residential clusters anywhere in New Jersey, in part because the state cancer registry was still relatively new and did not yet have much data. While tips about possible occupational clusters were taken seriously—there was a major ongoing investigation of a cluster of the rare lung cancer mesothelioma at an asbestos factory, for example—calls alleging neighborhood hotspots often were not.
There were good reasons for the disparity. Ever since Paracelsus, sharp-eyed scientists had identified suspected cancer-causing agents by looking for aggregations of disease in groups of highly exposed workers such as chimney sweeps and cobalt miners. In an occupational setting, it was easier to find workers who were exposed to very high levels of a few specific chemicals over many years. With an employer’s cooperation, an investigator could visit a factory to collect environmental samples and interview workers and consult a centralized repository of health and employment records to confirm diagnoses and estimate how long workers had been exposed to specific chemicals. Wilhelm Hueper, among others, had proved the worthiness of that approach.
All of those tasks were immensely more complex in a residential study. Medical records were spread out over dozens or even hundreds of physicians’ offices and hospitals, each with its own method of classifying illnesses. There was no way to track who had moved into or out of the area, or when. Measuring a neighborhood’s current exposure to pollution was extremely difficult, and an investigator could only guess at past exposures. In a factory, a researcher could consult old records showing which chemicals were used in which years. But there were no such records for past chemical exposures in neighborhoods.
The upshot was that it was nearly impossible to get clear answers about the causes of residential cancer clusters. If the history of occupational cancer epidemiology was like a good detective story, with plot twists, multiple suspects, and—in some cases, at least—a satisfying conclusion in which the miscreants got their comeuppance, residential cluster investigations were closer to existentialist drama. Important, provocative questions were asked; nothing was ever resolved.
Most of the cluster calls that came in to Michael Berry’s office were about neighborhoods, not workplace
s. Since 1980, the state health department had something more to offer those callers than just a calm voice on the other end of the line. That was the year the New Jersey State Cancer Registry came on line. The concept was a simple one: The registry was designed to be the central clearinghouse of information about the approximately thirty-two thousand (at the time) cases of cancer diagnosed yearly in New Jersey.6 That confidential data included the home address, age, and occupation of each afflicted person as well as the type and stage of cancer and the type of treatment. The health department could analyze it to answer all sorts of questions, including whether some parts of the state were getting substandard medical care. The registry’s primary purpose, however, was to identify clusters and provide “more complete and more precise statistical data … necessary to determine the correlations between cancer incidence and possible environmental factors,” in the words of the 1977 legislation that established the registry.7 In other words, it was designed to answer the very questions that were being asked in Toms River during the summer of 1986.
Cancer registries were an old idea, though not a very effective one. In England, the Factory Act of 1895 required employers to report all cancers in workers who handled coal tar products, including dyes. Compliance by factory owners was poor, but the idea proved popular—a natural extension of the infectious disease registries that had started centuries earlier as an early warning system for plagues. In theory, a cancer registry could serve the same function as an observant physician like Percivall Pott or Walther Hesse, but on a larger scale. Instead of being limited to Pott’s patients or Hesse’s miners, a population-based registry could search for patterns in much larger groups—all the dye workers in England, for instance, or every resident of Connecticut, which in 1935 became the first American state to have a cancer registry. By 1986, 181 city, state, or national cancer registries were operating in sixty countries.8
