by Dan Fagin
The next step was to select the participating children. According to the state cancer registry, twenty-two Toms River children had been diagnosed with leukemia and eighteen with brain or other central nervous system cancers during the study years. Each of those forty cases would be matched with four “control” children from Toms River who had never had cancer but otherwise mirrored their designated “case” child in age and gender. Fagliano and his colleagues would use the water-distribution and wind-direction computer models to see if case children were more likely to have lived in highly polluted neighborhoods during the critical years, compared to the matched cancer-free children. Finally, working from a detailed script, researchers would conduct long interviews with all two hundred participating families to see whether other factors such as nutrition, smoking, and occupation were influencing the results.
It was an ambitious plan, but Linda Gillick and her committee were still not satisfied. Some Ocean of Love parents lived in other parts of town where waste chemicals had leaked into groundwater, including near the now-closed town landfill and Ciba’s old leaky pipeline to the ocean. Others were worried about radiation from the Oyster Creek nuclear plant, ten miles south of town. There was no direct evidence that children had been significantly exposed to carcinogens from those sites, but the state agreed to investigate them all—again, by looking to see if cancer rates were higher in neighborhoods with the highest exposures. There was almost no chance that there would be enough exposed cases to generate statistically meaningful results for any of these micro-studies, but Fagliano made no apologies for including them. “The mandate was to leave no stone unturned in terms of potential past exposures,” he recalled. The state even hired researchers to analyze dust in local homes, to see if its chemical composition was unusual. (Learning that it was not cost several hundred thousand dollars.)
Even after all of those extras were added to the study, some parents still felt left out because their children were victims of other types of cancer, not leukemia and nervous system tumors. Other aggrieved families argued that the study should include children who were born in Toms River but moved away before they were diagnosed. To satisfy them, the state agreed to conduct a second case-control study. This one would have the same aim but would rely only on home addresses listed on birth certificates, not interviews. With forty-eight cases and 480 controls, the birth record study would be more than twice the size of the interview study but would be easier to conduct because there would be no questionnaire and no need to secure permission from each family.
The state’s politically driven, the-more-the-merrier attitude about expanding the studies pleased the Ocean of Love parents, but it carried scientific risks. Fagliano’s planned investigation had grown from testing a single hypothesis—that children exposed to tainted Parkway water had a higher risk of leukemia and brain cancer—to testing more than a dozen hypotheses in two studies. Each addition increased the chance that an association uncovered by the studies might be due to luck instead of a real environmental risk. The typical, if somewhat arbitrary, definition of a statistically significant result was one that had no greater chance than one in twenty of being a random fluke (thus the 95 percent confidence interval). But if researchers looked for many associations between pollution and cancer, the likelihood of at least one “false positive” would grow—in the same way that a dice player would be much more likely to roll snake eyes if he played twelve games of craps instead of just one. “If you search hard enough in the data and analyze it enough ways, you can always find something,” said Dan Wartenberg, an epidemiologist at Rutgers University and an outside adviser to the Toms River study. “If you just keep adding hypotheses and doing more analyses, then you have to wonder about any associations you see.”
State health officials felt that they had no choice but to run that risk. If they left out of the study anything that the families were worried about, they would be criticized and the study results would be second-guessed. “We didn’t want to have a situation where we didn’t analyze something and show some results,” Fagliano explained, “because then people would say, ‘What about this? Why didn’t you look at that?’ We felt we had to be exhaustive.”
Jerry Fagliano and his colleagues were going to look at everything, and in March of 1998 they were finally ready to begin.
Time passed achingly slowly in Toms River now that scientists and lawyers were dictating the pace. In a legal sense, the clock stopped completely. The new phase began on December 12, 1997, when the families’ lawyers—Jan Schlichtmann, Mark Cuker, and Esther Berezofsky—appeared at a press conference near the old courthouse in Toms River. Mayor George Wittmann Jr. didn’t exactly roll out the welcome mat. “I’m disappointed that the town is going to receive additional negative publicity, when we’ve worked so hard to create a more positive image,” he told the Asbury Park Press.1 The arrival of a celebrity lawyer like Schlichtmann was sure to bring more unwanted attention to Toms River, further fraying the ties between the families and the rest of the town.
But the lawyers and their clients were careful not to play into the money-soaked narrative of shark attorneys and passive victims. They had not come to file a lawsuit, Schlichtmann declared. Instead, they hoped to “open up lines of communication” with Union Carbide, Ciba, and United Water, the companies their clients suspected had harmed their children. “We want to work together as partners to find out what happened here,” Schlichtmann said. A lawsuit, he added, would be a last resort. “It’s foolish, absolutely foolish, for anyone to choose that road, when we have another alternative,” he declared.
As for the families, they were not going to just watch and wait while their attorneys tried to settle the case. With the lawyers’ help, they had formed a new organization called Toxic Environment Affects Children’s Health. The mission of TEACH, Schlichtmann explained, would be to educate the community about environmental hazards, especially the two Superfund sites, and to lobby for stricter cleanups. It was an advocacy group whose membership consisted solely of the families who were part of the potential legal case. Schlichtmann loved the idea—and not only because he had thought of it. Whether or not TEACH turned out to be an active group (it was, at times), it brought the families closer to each other and to their lawyers, creating a sense of shared mission and mutual support. It also showed the town that the families wanted to work for the betterment of all Toms River, not just for themselves. And perhaps most importantly, it signaled Union Carbide, Ciba, and United Water that the families were determined to stick together and pursue the case. “It sent a message: We’re united and we’re serious,” remembered Bruce Anderson, who became the most active member of TEACH. Anderson designed T-shirts for the group depicting a bald-headed child clutching an intravenous stand. He even created a website, www.trteach.org, which he updated diligently with news and information about Toms River’s pollution problems.
Schlichtmann’s stay-out-of-court strategy could succeed only if the companies believed that the families were willing to sue if they had to, but the clock was running out on that threat. Under New Jersey law, a plaintiff in a personal-injury case has just two years to file a lawsuit after discovering the alleged cause of the injury. There was an exception for children. For them, the two-year clock did not begin running until they turned eighteen. But some of Schlichtmann’s clients were already over twenty (to be included in the case, they merely had to be underage when diagnosed), so the question of exactly when the two-year clock started ticking was a crucial one and not at all easy to answer. A judge could conceivably decide that it was as early as September of 1995, when Linda Gillick first saw a copy of Michael Berry’s cancer incidence study. So for the plaintiffs, the most conservative strategy would be to sue as quickly as possible.
A rush to the courthouse, however, was the opposite of what Schlichtmann wanted. His vision called for a period of fact-finding research, followed by expert presentations and discussions among all the lawyers, with the goal of reaching a settleme
nt. It would work only if there was an atmosphere of mutual respect, but building trust among adversaries could take a very long time. Schlichtmann had told the families that there could be a resolution in just eighteen months, but no one believed it. Realistically, the only way his alternative process could possibly succeed would be for the lawyers to negotiate an agreement to “toll,” or temporarily halt, the two-year clock on the statute of limitations. If the companies were willing to sign onto a tolling agreement, there was a chance that Schlichtmann’s out-of-court strategy might work. If they were not, the case would almost certainly turn into Woburn II, with years of motions, trials, and appeals and millions of dollars in expenses, all for a highly uncertain outcome.
The issue came to a fast boil at an all-day meeting in Princeton on January 15, 1998. Present were more than a dozen mutually suspicious lawyers. Later, many of them would spend so much time together that they would learn the landscapes of each other’s lives: the weddings, the illnesses, and the funerals. For now, though, they were strangers playing hardball, and they did not like each other very much. The most aggressive was Robert Butler, Union Carbide’s chief litigation counsel, who “basically said our clients were a bunch of greedy opportunists looking to profit from the misfortunes of their own children,” remembered Esther Berezofsky. “He was fairly sneering at the notion that our clients had anything close to a legitimate claim. For me, it was hard not to get up and tell them where they could take their condescending arrogance.”2
Schlichtmann’s beautiful dream of a new kind of lawyering was turning ugly fast. The more toxic the atmosphere in the conference room became, the more frantically he spoke about the need for both sides to avoid another Woburn. The chief outside lawyer for Union Carbide, William Warren, had read A Civil Action and was surprised at what he was hearing from Schlichtmann. “I think that at the beginning everyone was appropriately skeptical,” said Warren, who headed the environmental practice group at one of Philadelphia’s largest law firms, Drinker Biddle. Butler, his colleague, was less shocked because he had read the more recent news stories about Schlichtmann’s self-exile to Hawaii and fervent conversion to conciliation. That did not make it any easier to negotiate a tolling agreement, however.
“It was a very, very tense meeting, it almost broke up at several points,” remembered Mark Cuker. The defense lawyers “were basically saying, ‘We know you can’t litigate this case because you don’t have your proofs, so why should we give you more time?’ ” In the end, though, the companies decided that the possibility of avoiding an expensive, uncertain, and highly publicized lawsuit was worth the risk of giving their adversaries an extra eighteen months. The two sides agreed on the tolling agreement, and the statute of limitations clock stopped ticking on January 31, 1998. Schlichtmann’s unorthodox ideas about how to pursue the case had passed their first test; as a result, there was at least a slight chance it might eventually be resolved without a lawsuit.
Now the work of the case began. Schlichtmann started hiring scientists. In Woburn, he had spent well over a million dollars on experts. In Toms River, there was no need for such extravagance; public agencies were already doing most of the needed scientific work. Still, the lawyers could not afford to wait for the case-control study results. The companies had agreed to a pause of just eighteen months, and no one knew how long Fagliano’s team would take to finish the study. Instead, the families’ lawyers would need to conduct a parallel investigation, a shadow version of what the government was already doing. Schlichtmann turned to Woburn veterans for assistance. Needing an epidemiologist, he hired Richard Clapp of Boston University, who had worked on the Woburn case and had served as a consultant to Gillick’s advisory committee.3 For water modeling, Schlichtmann signed up Peter Murphy, whose intricate reconstruction of the pipe system in Woburn had been so crucial. He also hired the aptly named John Snow Institute in Boston to survey the families about their health, habits, and medical history.
Mark Cuker, meanwhile, immersed himself in the scientific intricacies of the Toms River case. He even purchased a stupefying textbook called Principles of Polymerization (it weighed three pounds and was 832 pages long) and taught himself the basics of industrial chemistry, especially plastics. He also spent long days in the main branch of the Ocean County Library in downtown Toms River, the official repository of all of the documents associated with the state and federal investigations of Reich Farm and Ciba stretching back to the early 1960s. There were about three hundred thousand pages of documents, filling 168 feet of shelf space. The “wall of shame” is what the librarians called it—and still do.
The first interviews for the state’s case-control study began in the spring of 1998, just as a period of relative calm in Toms River was coming to a fractious end. In mid-May, at a meeting of her advisory committee, Linda Gillick announced that five new cases of childhood cancer had recently been reported to Ocean of Love by hospital social workers—the first new cases in sixteen months. Gillick left no doubt that she believed local pollution was to blame. “We can’t jump to any conclusions, but common sense would say, what do they all have in common?” she told reporters. Later, she was more specific, saying she suspected that the cases were somehow linked to United Water’s decision, during the previous summer, to use water from the two tainted Parkway wells for several weekends at the height of the town’s water shortage.4 She was almost certainly wrong about that because, by mid-1997, water from those wells was being run through carbon filters as well as the air stripper. After filtration and stripping, it contained less than one part per billion of trichloroethylene or SAN trimer and posed no known health threat.
Gillick’s announcement provoked a new round of stories identifying Toms River as a cancer town, just as the summer tourism season was about to begin. This time, business leaders did not hide their anger. “A lot of people were very annoyed, as I was, that we were getting beat up nationwide,” remembered developer Gary Lotano, who was an officer in the Toms River–Ocean County Chamber of Commerce. “People were saying we were Love Canal all over again. I thought it was an injustice.” Soon after Gillick’s declaration, Lotano vented to the Asbury Park Press, saying it was “irresponsible” for Gillick to “create hysteria” without waiting for the state to confirm the new cases.5
Real estate agents were complaining too: The market was slow, and they blamed the publicity. “There were a lot of people who really wanted this whole thing to go away,” remembered Robert Gialanella, who served on Gillick’s committee. Several of his physician colleagues warned him not to get too involved with Ocean of Love; he lost several patients because of it. Later, when Gialanella tried to sell his house and move to Florida, his first buyer walked away after signing a contract. “We got a call from the realtor who said the buyer was backing out because of all the chemicals in the water in Toms River,” he recalled. Lots of people in town had similar stories; emotions were raw.
The strain was also showing within state government. Elin Gursky, Health Commissioner Fishman’s top deputy, had been working intensively on the investigation for more than two years. After a disastrous beginning in which she had infuriated the families by saying that a full-blown study of the cluster would be a waste, Gursky had worked hard to gain their trust. She drove across the state to attend the monthly meetings of Gillick’s advisory committee and was careful never to repeat her early mistake of sounding insensitive. So when a reporter asked her about Gillick’s announcement of the five additional cases, Gursky said she was “very, very concerned.”6 That was the wrong answer, as far as Fishman was concerned. He did not want his staff stirring up any more anxiety and anger in Toms River until the department had officially confirmed the cases. Within days, Gursky had resigned under pressure and left the state.
Linda Gillick had the last word, as usual, because the health department soon confirmed that there were indeed five new cases. No one who knew Gillick was surprised; she was a meticulous record-keeper of childhood cancer cases, and her sources at
area hospitals were impeccable. Still, Gillick was wounded by the public criticism. She would remember the incident as the emotional low point of her many years of community activism. From then on, though she remained as blunt-spoken as ever, she would go out of her way to tell visiting reporters that Toms River was a “beautiful town” with “beautiful people”—but also a community with a cancer problem.
That was not a message many people in town were willing to accept. “I think the general attitude was a little worse than just skepticism about the cluster. It was closer to hostility,” remembered parent Kim Pascarella. “The main part of the community treated anyone from our group like we were nuts. They thought we were alarmists, and some people thought we were doing it for the money.” What sociologists call the “outsider versus insider dichotomy” had taken hold.7 The town had split into two cultures, one much larger than the other, each with its own language and way of thinking. Across a chasm of mistrust and misunderstanding, the two sides regarded each other warily.
What most people in Toms River craved—what they had always craved—was to be perceived as normal. They were trying to get on with their lives. But life could never be completely normal for the Ocean of Love families. For them, moving on was not an option. That was especially true now that the case-control study was under way. They welcomed the investigation because, above all else, they wanted to know why their kids had been stricken, when so many others had not. For almost everyone else in town, though, the study was an unhappy reminder that their town had been branded.