by Dan Fagin
Early on Sunday morning, March 10, 1996, a senior official at the state health department awoke to a phone call from a press aide with an urgent message about a story on the front page of that morning’s Star-Ledger. “It was a horrible shock,” the official recalled. The headline of Gale Scott’s story was “Kids’ Cancer Rate Alarms County.” The article’s more than twenty-five hundred words were carefully chosen, but their overall effect was incendiary. Beginning with an anecdote about the then-anonymous oncology nurse in Philadelphia (“Cancer nurses are hard to shock.…”), the article detailed the findings of Berry’s incidence analysis and then shifted to a lengthy explanation of the soil and groundwater pollution discovered on or near the Ciba factory. There was no mention of Reich Farm and the Parkway wells, which were overlooked as usual. Steve Jones was quoted saying that the ATSDR wanted to do a health study because “there’s something going on out there.” His position was endorsed both by Linda Gillick—“finally, someone is listening,” she said—and by a researcher at the Cancer Institute of New Jersey, Michael Gallo. “There is a significant increase there, no question,” Gallo told the Star-Ledger. But there were no comments from the state health department, and Herb Roeschke, the county health official, was quoted skeptically. “Certainly we are concerned about all disease in Ocean County, but this letter is talking about three cases of children with brain cancer,” Roeschke said, apparently referring to the three cases in children under age five in the Toms River core zone. “That’s not many cases.”1
The next day the state threw more gasoline on the fire. Instead of meeting with Gillick and other concerned residents, the health department called a press conference in Trenton. Elin Gursky, who was the top physician in state government as senior assistant commissioner of health, declared that the cluster “is statistically elevated, but not to the point where we are overly concerned.”2 Gursky had known about the Toms River cases since the previous summer, when she saw Berry’s report and approved its wording. Now that the report was public knowledge, she said, the state health department would conduct another review of childhood cancer rates in Toms River but would not undertake a study of possible environmental causes. In Toms River, meanwhile, people were panicking. The Ocean County office of the American Cancer Society was flooded with calls from terrified residents, as were the radio talk shows. By Tuesday, two days after the initial Star-Ledger story, many stores in town had sold out of bottled water; replacements were unavailable because the wholesalers had sold out too. Scam artists filled the void, peddling bogus water filters door-to-door. The anxiety was feeding on itself. The more people heard about the cluster, the more upset they became.
Kim Pascarella, who had stayed active in Ocean of Love after his daughter’s death in 1990, had a very different reaction to the Star-Ledger story. Like many of the affected families, the Pascarellas had long believed that the aggregation of childhood cancer cases in Toms River was not a coincidence, though they rarely talked about it with anyone outside of the group. “When I saw that story, I thought, ‘Ah, it all kind of makes sense now. We’re not crazy after all.’ As soon as that story hit, it gave us some credibility, some validation,” he remembered. The story also represented an opportunity, he thought. Years later, with the benefit of hindsight, he would express it this way: “Without the Star-Ledger article, there would have been no uproar. Without the uproar, there would have been no government involvement. Without the government involvement, there would have been no legal case. And without the case, there would have been no truth.” No one was ready to predict any of those subsequent events on the day after the first newspaper story appeared. But Kim Pascarella, Linda Gillick, and Bob Gialanella, among others, did immediately recognize that they now had a golden opportunity to press for an investigation. They resolved to make the most of it.
The families’ cause was aided by the seeming indifference of state officials, who were digging themselves into a deeper hole by the day. In a network television interview a few days after the initial story appeared, an uncomfortable-looking Elin Gursky, who had been ordered to do the interview by State Health Commissioner Fishman, tried again to explain why the health department would not conduct an environmental study: “To go on those kinds of fishing trips is very, very costly, and would probably yield nothing.”3
Gursky and Roeschke were speaking in the language of probability: Local families almost certainly had nothing to worry about, and the payoff from an environmental study would almost certainly not be worth the expense. But Toms River had heard those kinds of arguments before. “We were ripe for this because Ocean County had been the dumping ground for a lot of environmental hazards, and we had this long history of wells that were tainted with chemicals,” said Gary Casperson, a local banker who was the chair of the county board of health and Herb Roeschke’s supervisor. Now there was evidence—official evidence, not rumor—that the children of Toms River really did face a higher risk of cancer. Even if the increased risk meant only a handful of extra cases per year, that did not matter to many residents. Like Randy Lynnworth before him, Michael Gillick was not an abstract statistic to anyone who had seen his tumor-ravaged face on television. He was a flesh-and-blood reminder of the torment of a cruel illness and the terror that anyone’s child might be next. Yet the government experts, who were supposed to be the protectors of public health, were unwilling to do anything but justify their inaction by citing probabilities. They could not even say whether there was still a problem, since the last available incidence data was an inexcusable five years old. The people of Toms River were not only terrified, they were furious.
Linda Gillick quickly provided a way for them to channel their rage. She helped to organize a March 15 protest outside Roeschke’s office at the county health department and invited the press to attend. When Casperson and Roeschke walked outside to address the crowd, they faced a row of television cameras and about a hundred angry residents. “There are many causes of cancer …,” Roeschke began, but was quickly interrupted by a woman who yelled: “Stop giving me the old story! I don’t want to hear it!” When Roeschke tried to explain that the state and county were forming a task force, a man screamed, “We’re tired of committees, you’ve done nothing!” And when Roeschke said that the residents of Toms River should feel safe because Berry’s study had found only a handful of brain cancer cases—just five in the Toms River core zone, three times more than expected but still just one case per thousand children—another woman interrupted, shouting: “I don’t feel safe at all, my kids could get cancer!” Another mother held up a photograph of her son, who had died the year before from brain cancer. “These kids don’t have time to wait. I have two other children, and I’m scared to death,” she said.4
What especially infuriated the crowd was that so much information had been kept from them. The Star-Ledger article had disclosed not only Michael Berry’s 1995 Toms River study but also the 1994 statewide study that had identified Ocean County as having the highest childhood cancer rate in New Jersey. When Roeschke said that the reports were not released because they were “just statistics” whose meaning was unclear, he was interrupted by more shouting. “That’s unacceptable!” yelled one woman. “Clear out your office!” shouted another. (It was a prescient jeer: The beleaguered Roeschke would soon resign under pressure and take a job in a different county.) Years later, a state official involved in the initial decision not to release Berry’s report explained it this way. “We had done some good science, but we didn’t know how to use it,” said the official, who insisted on anonymity. “To use the information would mean sharing it, showing it, talking about it, and fixing it if there was something to fix. We weren’t prepared to do any of that, so we just held on to the information. That was a mistake, certainly.”
Roeschke, Gursky, and other officials seemed bewildered by the rage their comments provoked, but they should not have been. Similar storylines had already played out in other communities with toxic sites, including Love Canal. Sociologis
ts studying the phenomenon came to regard fury as a predictable and even rational response to a uniquely nightmarish situation.5 Facing a threat they could not see, residents had to rely on experts who did not seem to know much more than they did. If children were involved, the trauma of this loss of control was magnified; parents felt crushed by their inability to protect their children.
Research from other “hotspot” communities suggested that the attitude of the relevant government agencies was crucial in determining how people reacted. If the authorities tried to avert panic by seeming to understate the risk of an invisible threat—or, worse still, by withholding information—they would only increase the trauma they hoped to avoid. The best strategy was to acknowledge the fear, to provide as much information as possible (even if it was tentative), and most importantly, to give the community a substantive role in a genuine search for answers.6 By that standard, the leaders of the New Jersey Department of Health had horribly mishandled the first stage of the Toms River crisis. They would spend the next five years trying to repair the damage.
The March 15 protest outside the county health department was only the beginning. The fear and fury kept building, reinforced by a stream of television and newspaper reports. “HIGH ANXIETY; Local Cancer Scare Spins Out of Control,” was the screaming headline in the Observer on March 17. “Where have all the children gone?” asked a New York City television newscaster, introducing a story that opened with a shot of an empty Toms River playground. For the first time since Greenpeace and the “Blind Faith” Marshall murder case a dozen years earlier, Toms River was national news. Network camera crews came to town, and politicians were right behind them, heading straight to Linda Gillick’s living room. At the front of the line was Robert Torricelli, who visited both the Gillicks and the Pascarellas. A North Jersey congressman known for his pugnacious personality (his nickname was “the Torch”), Torricelli was running for the United States Senate in 1996 and made environmental health a centerpiece of his campaign. He began pushing hard for a full-scale investigation in Toms River. President Bill Clinton was eager to assist a fellow Democrat, but Governor Whitman, a Republican, said nothing publicly, as her health department continued to resist doing anything except re-checking Berry’s data. Gillick kept the pressure on, telling reporters that the governor’s stance was prompting “frustration, anger and tears” at Ocean of Love.
Under heavy political pressure, State Health Commissioner Fishman did consent to hold an “information session” with the community on March 21, eleven long days after the initial Star-Ledger article. Expecting a huge crowd, the health department picked the biggest venue in town, the same auditorium at Toms River High School North that had been the site of the climactic hearing on the Ciba pipeline almost exactly eight years earlier. This time, the department made plans to bring in state police troopers for extra security, which turned out to be a wise decision.
The meeting itself proved to be less an information session than a demonstration of mob rule. The plan was for Fishman, Steve Jones, Elin Gursky, and a few other officials to explain what Michael Berry’s study had found and what it meant. Gursky had come prepared with several hundred copies of Berry’s letter and data tables, which were passed out to the crowd. Jones had some news too: The ATSDR would conduct an environmental study in cooperation with the state health department, which until then had refused to do so. The Clinton administration had come through with financial support, although Governor Whitman was still balking at the use of state funds. But the meeting did not go as planned. Instead of Fishman, the surprise first speaker was Michael Gillick, now seventeen but still only about four feet tall. He climbed on stage and took a microphone, reprising and updating his electrifying speech of eight years earlier. Once again, no one dared tell him to stop. He began by blasting Gursky, who was sitting just a few feet away, and the other state officials who had suggested that an environmental investigation would be a waste. “Is it a waste of time to save lives?” he said. “Is it a waste of time to save children’s lives? I ask you to honestly think of the answer, not with your brains but with your hearts. I’ve battled this infestation of the body and soul for seventeen years. I know what it is like to live in pain and fear, not knowing when you are going to die.”
The crowd of nearly thirteen hundred people roared its approval, but when Fishman began to speak he was shouted down. “Shut up!” a woman yelled. A man shouted, “We’ve got to do something right now! Not a year from now, not three months from now—now!”7 More than ninety minutes later, Fishman was still trying to get through his opening statement as incensed residents excoriated him every time he tried to speak. The crowd took control of the meeting, lining up at the microphone to tell one wrenching story after another about cancer and pollution in Toms River. It was as if a padlocked door had been flung open and all the demons of the previous half-century were suddenly loosed. Retired Ciba workers spoke about colleagues felled by tumors, an adult cancer victim tore off her wig to reveal a scalp bald from chemotherapy, and parents of dead children wept as they described their ordeals. What they were seeking from the state was not always clear, but their chief demand seemed to be for a truly comprehensive investigation—starting immediately—of the water, soil, and air in Toms River and its possible role in causing cancer.
A slight, professorial lawyer who wore owlish glasses, Fishman was at a loss. His expertise was in healthcare finance and eldercare; he had little interest in environmental issues and no experience with unruly crowds. “He lost control of the meeting almost immediately, and he never got it back,” recalled Michael Berry, who was present. “It was a pretty ugly proceeding, not one of the most stellar moments in health department history,” remembered another longtime state official, James Blumenstock. “You had a group of almost thirteen hundred people who were truly at the end of their rope.”
The chaos grew as people began shouting from their seats instead of waiting for a turn at the microphone. “Somebody open your mouth and tell all of us how can we explain it to our kids!” one woman screamed at the thirteen officials on the dais, who had given up trying to talk and instead sat in stunned silence. Some people in the audience walked out, repulsed by the shrieking, but others moved forward toward the stage as they sought to be heard over the din. The state troopers edged forward, too, forming a barrier between the officials and the increasingly aroused crowd. And then, just as the raw emotions inside the auditorium seemed about to explode, Linda Gillick stepped onto the stage, picked up a microphone, and—in her sternest schoolteacher voice—commanded the crowd to sit down and be quiet.
She was the only person in the auditorium who could have gotten away with such a demand, with the possible exception of a trooper brandishing a gun. Gillick had the personal credibility that came from having a son with cancer, and she had the respect of everyone in the room because of her years of charity work. “We all trusted her—all of the families, the whole community,” recalled Melanie Anderson, who was at the meeting along with more than a dozen other parents of afflicted children. “People described her as a bulldog with a bone. She just could cut through all the garbage.” Gillick had been omnipresent on television and in the newspapers as an advocate for children with cancer and their suffering families, and she had the no-nonsense, I’m-in-charge manner Fishman lacked. In a community that felt powerless and hopeless, she exuded authority and confidence. She was now the essential woman.
The officials on the dais watched, with a mixture of wonderment and relief, as Gillick quieted a crowd that five minutes earlier had seemed completely beyond anyone’s control. She had defused, at least temporarily, a potentially violent confrontation. But her wizardry also carried an implied threat: I made them stop, and I can make them start again. She was now the most important person in the room, a startlingly adept leader who did not seem to care about budgets and probabilities and the limitations of cluster epidemiology and was instead demanding immediate action. Gillick was no longer a supplicant in the audience;
she was on stage, in the power position. After calming the crowd, she turned to Fishman and asked a pointed question: You have heard from the people, she said, and you know what we want. What are you going to do now?
Fishman, who had seemed paralyzed throughout the meeting, suddenly came to life. Making an on-the-spot decision, he declared that the state would take its cues from the community, and specifically from Gillick, in designing a state-federal environmental study. (This was the same study that, until the day before the hearing, his department had opposed as impractical and still did not want to pay for.) Gillick would not only chair the study’s citizens’ advisory committee, Fishman announced, she would also choose its members. The state would also launch an emergency program to test drinking water in local schools, he said. By the time the meeting broke up shortly before midnight, after five excruciating hours, Gillick was setting the agenda. She declared that she would begin work the following morning, and she expected Fishman and his staff to be in Toms River tomorrow, too. The weary-looking commissioner promised he would.
In the frenetic days that followed, government officials struggled to figure out how to deliver on the promises they had just made under extreme duress. The community wanted fast action, but it would take months or years to satisfy most of Linda Gillick’s demands. She wanted Michael Berry’s incidence data to be checked and updated to reflect recently diagnosed cases, but getting the cancer registry up to date would be a massive chore requiring outreach to hundreds of doctors, clinics, and hospitals. She also wanted a comprehensive environmental study capable of unearthing the connections between cancer and pollution, but a scientifically meaningful study would need to start with one or more specific hypotheses—testable theories about what may have caused the cluster. Before they could even think about developing hypotheses and designing a study, the ATSDR and the state health department would have to do a sweeping investigation of past environmental conditions. Funding was also an issue. After the trauma of the public meeting, Governor Whitman relented and agreed to spend state money on a local investigation. The county legislature also set aside $250,000 to assist. But there was no doubt that most of the needed funds—probably millions of dollars—would need to come from Washington. Politicians as high up as Vice President Al Gore had promised to help, but there was no specific monetary pledge yet.