by Dan Fagin
Fagliano would not do the same for other kinds of childhood cancer, however, even though the results for brain tumors and other central nervous systems cancers were also tantalizing. For children diagnosed with those cancers before age twenty, the odds ratio for prenatal exposure to high levels of Parkway water was 4.51. But that odds ratio was based on just three high-exposed cases, and its wide confidence interval dipped as low as 0.39. The story was similar for exposure to Ciba air emissions, except that this time the odds ratios were highest for exposures in the womb and the first four years of life: 9.00 for high-exposed young children with brain or nervous system cancer. Again, though, there were few children in the highest-exposed group: only four cases—almost enough to achieve statistical significance, but not quite.10 The birth record study results, which could assess only prenatal exposures to Ciba air emissions, were even closer to statistical significance for the seven high-exposed children diagnosed with any form of cancer before age five. One more case, one more child, would have pushed it over.11
His two studies included sixty-three families in which there was a child with cancer, but Jerry Fagliano, for all his exertions since 1996, had found an answer likely to satisfy just thirteen of them—the ones that included girls with leukemia. The families were already getting unequal payouts from the settlement; now they would get unequal explanations, too. Fagliano had reached the outer limits of small-number epidemiology. He could go no further.
The families got the news in a private briefing on a Monday evening, December 17, in an austere meeting room at the county health department offices on Sunset Avenue, on the north side of town, about halfway between the chemical plant and Reich Farm. It fell to Jerry Fagliano to explain the mixed results of the studies that had taken four years to complete and cost millions of dollars. This time, not all of the families were present, but there was still a large crowd. They were silent as Fagliano explained what he had found—and not found—in the two case-control studies.
It was hard for the families to know how to react. In a sense, they had been vindicated. The naysayers were wrong; there was a likely environmental cause for at least some of the cancer cases. A century-long streak of negative findings from residential cluster investigations (all but Woburn) had been broken because the Gillicks and others had refused to defer to nay-saying experts and instead insisted on a full-blown investigation. But their vindication was less than fully satisfying. The parents interpreted Fagliano’s words through the filter of their own experiences, as if his findings were Rorschach inkblots instead of statistical charts and tables. In a strictly scientific sense, the families were wrong to personalize the study conclusions because the associations Fagliano found could never explain the cause of any specific child’s cancer. He could only assess the extent to which an environmental exposure was associated with a pattern of multiple cases. Like any epidemiological study, Fagliano’s was about correlation, not causation.
Even so, it was impossible for parents not to view the study results through the prism of their own child’s ordeal. How could they not? Kim Pascarella thought of his daughter, Gabrielle, dead for ten years, when he heard Fagliano say that the association between brain and other central nervous system cancers and prenatal exposure to polluted air and water had fallen just short of statistical significance. As an infant, Gabrielle had been diagnosed with neurocutaneous melanosis, an extremely rare cancer that struck the brain and spinal cord but was classified medically as a melanoma because of the cells it affected. As a melanoma victim, she was excluded from the interview study, which included only leukemias and nervous system cancers. If Gabrielle had been included, Pascarella thought, Fagliano would probably have found a significant association with nervous system cancers, just as he had with leukemias. “My daughter’s case should have been included,” he remembered years later. “Of course, it should have been.”
Melanie and Bruce Anderson heard Fagliano talk about girls and thought about their son, Mike. He was twenty now, having survived three brutal years of treatment for leukemia in the early 1990s. “I was annoyed that they only found an association with girls and leukemia. I had a son with leukemia,” remembered Melanie Anderson. Bruce Anderson, who had devoted hundreds of hours to the families’ cause, was deeply disappointed at what he regarded as an inadequate investigation. “I thought they should have been able to bring out a lot more information with all of the millions of dollars they spent on it,” he said years later.
Linda Gillick said little during Fagliano’s briefing, but afterward she angrily unloaded on him. During the twelve years she had been an all-out activist, she and her son, Michael, had always expressed absolute certitude that contaminated water—and maybe air, too—had caused Michael’s neuroblastoma. Whenever cynics would point out that residential cluster studies almost always failed to identify a cause, she would respond that the evidence in Toms River—evidence she had helped to assemble on her pushpin map—was so overwhelming that Fagliano could not possibly miss it. But now his work was over, and Fagliano was telling her that he could not confidently identify an environmental cause for the type of cancer she cared the most about, Michael’s kind, which was classified as a central nervous system cancer. “I remember Linda Gillick being quite upset with me personally that night, saying we didn’t look hard enough and asking where we went wrong. She was very upset,” Fagliano recalled. “That was the hardest thing for me. So much of what was motivating the families was to find answers. We did everything we could, but some families came away from that meeting terribly disappointed and there was nothing we could do about it.”
The next day, in the same building, Fagliano publicly announced the study results and answered questions at a press conference. About twenty reporters were present—a good crowd but nothing like the hordes of journalists who had descended on Toms River back in 1996 when the existence of the cluster was first disclosed by the Star-Ledger. Frank Lautenberg, who had championed the families’ cause until he retired from the U.S. Senate in 2000 (he would be elected again in 2002), sat alone in a folding chair in the hallway, waiting for someone to recognize him. Linda Gillick was there, too. For the reporters, she had toned down her furious reaction of the night before. Now, she was saying she was “disappointed but not dissatisfied” with the results.
As soon as Fagliano finished his briefing, many of the reporters moved out into the corridor, where a lanky, gesticulating man with salt-and-pepper hair was holding court. It was Jan Schlichtmann, and he was telling anyone who would listen that the Toms River study was “an earthquake” that would “impact public health and environmental policy-making for a very, very long time.” For Schlichtmann, it had been a disheartening weekend. The settlement of the legal case, announced just five days earlier, had not gotten the national media attention he thought it deserved. He had wanted a much splashier version of the vague statement the lawyers had negotiated. Now Schlichtmann was trying to make up for it by buttonholing as many reporters as he could and giving them his ebullient message. Together, the legal settlement and the study were going to set a new standard for resolving environmental controversies in communities across the country, he insisted. The reporters dutifully recorded his enthusiastic sound bites, but the stories they wrote and broadcast did not get much attention outside of New Jersey and Philadelphia. In the wake of the September 11 attacks, the country was now consumed with terrorism and war; A Civil Action felt like a long time ago. In fact, some of the key players in the Toms River drama, including Floyd Genicola and Elin Gursky (who was now in Washington, D.C.), were now working full-time on coping with anthrax and other bioterrorism threats.
There was a community forum later that day, and the health department had made elaborate plans for it—even arranging for a simultaneous broadcast on a local cable channel. The meeting site, at Toms River High School East, was just a few thousand feet from the corner of Bay and Vaughn avenues, where cracked asphalt and a chemical stench had heralded the first stirrings of environmental co
nsciousness in Toms River way back in 1984. This time, though, only about seventy seats were filled in the huge auditorium, and the audience was subdued—a faint echo of the more than one thousand screaming locals who had mobbed similar meetings in 1988 and 1996. Linda and Michael Gillick had played critical roles at those earlier meetings, contributing black-ribboned roses, impassioned speeches, and a hushed recitation of the names of sick or dead children. Now they were again in the audience, and this time Linda Gillick’s speech had a contemplative tone that matched the much sparser crowd.
She addressed the parents who, like her, were disappointed that the investigation had failed to identify a likely cause for their child’s cancer. “Stand proud,” she told them. “We know what has happened here. Don’t let the ball drop.”12 The findings were less definitive than she had hoped, but they were still groundbreaking. Moreover, Toms River’s water and air were unquestionably safer now. The chemical plant had shut down, the Parkway wells had been filtered at last and the water in Toms River had been tested more thoroughly than anywhere else in New Jersey—maybe anywhere else in the world. The pathways of pollution that for decades had conveyed industrial chemicals into the bodies of town residents were blocked at last. As a result, Gillick predicted, the number of cancer cases would surely decline. In fact, she thought the decline was already under way, though Jerry Fagliano—ever the scientific killjoy—told her it was too soon to know.
Gillick finished with a vow: The Citizen Action Committee on the Childhood Cancer Cluster, the committee she had created and chaired for almost five years, would not be going away, and neither would she. The families had forged an unbreakable association, and there was still work to be done. Someone would need to monitor the cleanup at the chemical plant and keep a close eye on the water company. Someone would need to pressure the state health department to keep its cancer registry up to date and continue monitoring local childhood cancer rates. Besides, the investigation of the Toms River cluster was not quite over, even if its chief component, the epidemiological study, was now finished. Someday, there would be results from Barry Finette’s genetic tests, and from the federal government’s SAN trimer rat study, too.
Almost everyone in Toms River was finished with cancer clusters now. The town that had tried to move on so many times before did not have to try anymore. It was really over. “The feeling was that the state did everything it could have done to study this,” remembered Gary Lotano, the local real estate developer who headed the chamber of commerce and the hospital board. “At some point, it had to end, and it did. The stigma had to end.” But for the Gillicks, Andersons, Pascarellas, and other families, it had not ended. It could never end.
CHAPTER TWENTY-FOUR
Legacies
“A good working definition of a public health catastrophe,” a well-known Boston University environmental epidemiologist named David Ozonoff likes to say, “is a health effect so large even an epidemiological study can detect it.” By that arch description, the Toms River childhood cancer cluster was a manmade catastrophe, and a preventable one.
An ordinary town in so many ways, Toms River owed its unwanted status to an extraordinary combination of human folly and perseverance, along with a great deal of luck—both bad and good. The confirmation of the cluster and the identification of its likely causes were the highly improbable results of a decades-long process in which things went terribly wrong and then spectacularly right. First came the unprotected wells, inattentive officials, supercharged growth, and obscure poisons discharged by the ton into a shallow river and sandy soil. Then came people like Lisa Boornazian, Linda Gillick, Floyd Genicola, and Jerry Fagliano, all of whom went far beyond what anyone could have expected in forcing an investigation and driving it forward. In order for Toms River to be identified as a “true” nonrandom cluster, there had to be an extreme number of cases—enough to be noticeable to the people who lived there and also enough to clear the very high bar of statistical significance. For the cluster to then be linked credibly to local pollution, the environmental damage had to be severe and the epidemiology sophisticated and extremely expensive—and therefore backed by extraordinary political support.
It was hard to imagine a similar set of circumstances occurring elsewhere, and even harder to imagine that a government agency would ever again willingly embark on an investigative process that in Toms River took almost six years, cost well over $10 million, and embarrassed a boatload of public officials on the way to its deeply unsettling conclusion. In that sense, lawyer Jan Schlichtmann’s bold prediction that the Toms River epidemiological studies and legal settlement would “impact public health and environmental policy-making for a very, very long time” has turned out to be correct, but not in the way he expected or wanted. The chief legacy of Toms River instead has been to solidify governmental opposition to conducting any more Toms River–style investigations. And because only governments have unimpeded access to cancer registry information (due to privacy concerns), if public agencies do not investigate clusters, then no one will.
A few health agencies—including even the biggest cluster-buster of all, the Centers for Disease Control and Prevention—have reluctantly undertaken residential cancer cluster studies in recent years, though there have been only a handful of comprehensive investigations. Almost invariably, their studies have followed the Toms River/Woburn template: They were launched only after intense pressure from Linda Gillick–like civic activists and from politicians who rushed in amid widespread media coverage. At least three of those investigations, all in the United States, ended with a disturbing conclusion: The cluster was almost certainly not a chance occurrence. The most famous was in the Nevada desert town of Fallon and surrounding Churchill County, where sixteen children were diagnosed with leukemia between 1997 and 2002—more than eight times the expected number.1 (By one credible estimate, the odds that the Fallon cluster could have occurred randomly were just one in 232 million. Stated another way, a cluster that extreme would occur by chance in the United States only once every twenty-two thousand years.)2 A second was in Sierra Vista, Arizona, where at least eleven children were diagnosed with leukemia between 1997 and 2003 instead of the expected five.3 The third was a brain cancer cluster among children in a South Florida area called The Acreage, where four cases were diagnosed between 2005 and 2007 when just one case was expected.4
In all three communities, researchers failed to identify a likely cause, even after conducting case-control studies that included testing local air, water, and soil. In fact, all of the residential cancer cluster investigations undertaken since the completion of the Toms River studies in 2001 have failed to identify a likely cause. There are still just two lonely names on the roster of non-occupational cancer clusters that have been scientifically associated with specific chemical exposures: Woburn and Toms River.
Why haven’t there been more? There are at least three possible reasons. The Toms River cluster may have been a statistical aberration, a random one-in-a-million event that actually had nothing to do with local pollution, despite the findings of Jerry Fagliano’s two case-control studies. Or perhaps Toms River really was a nonrandom cluster triggered by toxic exposures, but a vanishingly rare one because industrial chemicals may be a trivial cause of cancer compared to more powerful risk factors like tobacco and family history, as the late Richard Doll and some other prominent epidemiologists have long argued. But there is also a third possibility, the one Boston University’s David Ozonoff was hinting at with his wry description of the feebleness of epidemiological studies: Clusters of rare cancers like the one in Toms River may actually be much more common than we can discern with the crude statistical tools of small-number epidemiology. In other words, many more pollution-induced cancer clusters may be out there, but we don’t see them and we rarely even bother to look.
Public health agencies are shunning cluster studies at a time when researchers need all the help they can get in understanding why and how cancer begins. The most important c
ancer breakthroughs in recent years have been about treatment, not causation—reflecting the priorities of research funders in government and the pharmaceutical industry. (One of the most successful new cancer drugs, Gleevec, introduced in 2001 by Ciba’s successor company, Novartis, has helped to raise the five-year survival rate for the most common type of pediatric leukemia to 90 percent.)5 For scientists who are still trying to understand carcinogenesis, meanwhile, there has been a major shift since the 2001 completion of the Toms River studies. Moving beyond DNA mutations, they are now studying all of the steps by which genetic instructions are executed within cells, including protein synthesis regulated by DNA’s single-stranded cousin, RNA. Researchers are also looking at a galaxy of epigenetic changes—modifications that alter the way genes function without changing the underlying genetic sequence—in hopes of finding clues about why cells turn malignant.
