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Authors: Dan Fagin

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Outsiders

In 1854, when John Snow decided to investigate the cause of the cholera epidemic in the Soho section of London, he walked ten blocks from his office on Sackville Street to the heart of the outbreak zone and started knocking on doors. Within four days, he had pinpointed a likely cause and launched modern epidemiology. Jerry Fagliano could only dream of having that much freedom of action. He was the nominal chief investigator of a study that in reality had many masters: the state health department, the federal Agency for Toxic Substances and Disease Registry, and two review panels of outside scientists. Most especially, Fagliano had to be responsive to Linda Gillick’s advisory committee. His bosses in the health department were intent on avoiding any more bad headlines from Toms River because, for most of 1997, Governor Christie Whitman was enmeshed in a hard-fought reelection battle. She won in November by just twenty-five thousand votes, 1 percent of all votes cast.

By the time all those groups had signed off on the study protocol, it was January of 1998, twelve months after Fagliano had received his initial approval. By then, the case-control investigation had expanded far beyond his original vision of a Woburn-style study focused on the possible links between the Parkway well water and local cases of
childhood leukemia and brain cancer. Everyone seemed to have an idea of what else should be covered, and few of those ideas were turned down (the state did draw the line at including adult cancers, as some town residents had requested). Now that the Toms River cluster had the full attention of the media and state politicians, money was no impediment. More than $2 million in federal, state, and county funds had already been spent, most of it on the emergency testing Governor Whitman had ordered in 1996. She had asked Congress for another $5 million, a request several New Jersey congressmen formalized by introducing the “Michael Gillick Childhood Cancer Research Act.” Whitman eventually got every penny she asked for, and the state kicked in millions more—all for a town that was home to just 1 percent of New Jersey’s population. All told, the Toms River investigation, including the case-control study, would cost well over $10 million, though no one ever tried to calculate the exact amount; too many people and agencies were involved to ever get an accurate total.

The discovery of SAN trimer in the Parkway wells made Union Carbide an obvious target of any investigation, but the Ocean of Love families were adamant that they wanted Ciba—the town’s chief source of environmental anxiety for two generations—included in the study too. That was not an easy call for the state. The health department had information about local cancer cases only since 1979, and the last time Ciba’s pollution was known to have reached the public water system was during the 1960s, when dye waste tainted the riverfront Holly Street wells. Because of this disparity in timing, Fagliano knew that very few children in the planned case-control study could have been exposed to the contaminated Holly water. With only a handful of exposed cases, any finding implicating Ciba as a cause of local cancer would be statistically suspect. On the other hand, the ATSDR had already agreed to spend millions of dollars on a computer model of the town’s water system to find out which neighborhoods received polluted water from Parkway wells during the 1980s and 1990s. Extending the model back to the 1960s to look at the Holly contamination would not be much additional work. Fagliano thought it was worth trying.

He also supported studying the
other
way that many people in
Toms River had been exposed to pollution from Ciba—from the air—even though an air pollution study would entail even more guesswork than a groundwater study. In groundwater, pollutants moved very slowly, perhaps four hundred feet in a year. In the air, they traveled that far in a few seconds. The groundwater beneath Pleasant Plains was a geological archive holding the evidence of past pollution at Reich Farm, but there was no such record of the airborne emissions from Ciba’s smokestacks during the years when the factory was running at full throttle. There was, however, a way to guess at the impact of those air emissions. Researchers could consult old weather records and see which neighborhoods tended to be downwind from the factory and thus bore the brunt of its air emissions. Then they could see if there were more childhood cancer cases in those downwind areas compared to other parts of town. It was a virtually identical strategy to the drinking water part of the study, in which Fagliano and his team would look to see whether cancer rates were highest in the neighborhoods that got the most Parkway water or Holly water during the critical years when the wells were known to be tainted with chemical waste. In all, there would be three windows of exposure to study: the Parkway wells from 1982 to 1996, the Holly wells from 1962 to 1975, and Ciba air emissions from 1962 to 1996.

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
.
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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 settlement. 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.”
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BOOK: Toms River
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