Toms River

by Dan Fagin

  In other words, out of the total universe of cancer cases—distributed throughout an almost infinite number of communities and time periods and encompassing more than 150 types of cancers—only an extremely small percentage of case aggregations were ever reported to a government agency as a cluster. With so much pre-screening, it was not surprising that many of the reported clusters were able to pass a test of nonrandom statistical significance, suggesting that they had some hidden cause. But did they really? Perhaps many of these clusters—maybe even all of them—were actually random, since only the flukiest of case aggregations were referred to investigators in the first place.

  Investigators of workplace clusters could console themselves with the knowledge that even if they could never know for certain whether an apparent cluster was “real” or random, there was a good chance that their efforts would not be wasted. Chemical exposures in factories were high enough, and specific enough, that a cancer incidence study could help identify possible chemical suspects whose risks could then be confirmed—or refuted—through tests on lab animals and in case-control studies. Indeed, many industrial carcinogens—including asbestos, benzidine, and vinyl chloride—were all first identified as potential cancer-causers in occupational cluster studies. Residential cluster studies, on the other hand, had a spotless record: Not a single one had ever led to the identification of a new carcinogen.17 Between 1961 and 1983, the CDC completed 108 residential cancer cluster investigations and failed to identify a likely cause in any of them.18 Workplace cluster studies had a better record, but only slightly.19

  Even when governments made extraordinary efforts to confirm a reported neighborhood cluster via environmental testing, the results were ambiguous. That was certainly true of what was the most famous and carefully documented residential cancer cluster of the era: the twelve cases of childhood leukemia in Woburn, Massachusetts, where just five cases would have been expected based on the demographics of that blue-collar town north of Boston. Later, in the 1990s, the Woburn cluster would become famous (and very influential, in Toms River) because of the book and movie A Civil Action and because of a state study that found an association between childhood leukemia and mothers who drank contaminated water—an exceedingly rare cause-and-effect confirmation of a residential cluster. But in the 1980s, two smaller studies in Woburn—one conducted by government scientists, the other by biostatisticians working with the affected families—looked at the leukemia–drinking water hypothesis and came to opposing conclusions.20

  By the late 1980s, there was no avoiding the unsettling conclusion: Neighborhood cancer cluster studies appeared to be a fool’s errand, a source of perpetual embarrassment to the agencies that conducted them and the politicians who had to defend their unsatisfying results. In fact, a rough consensus was emerging among cluster researchers in state health departments and the CDC: Governments should get out of the business of investigating residential cancer clusters, no matter how vociferously the public demanded them. To lay the groundwork for such a controversial policy change, they organized a meeting at the Hotel Intercontinental in Atlanta, near the CDC headquarters. The 1989 gathering was officially known as the National Conference on the Clustering of Health Events, but it quickly acquired a much catchier name: the cluster buster conference.

  To deliver the opening address, the organizers selected a paragon of the epidemiology establishment. Kenneth Rothman of Boston University had written two popular textbooks and was the founding editor of the journal Epidemiology. He got right to the point: “I am about to tell you that there is little scientific value in the study of disease clusters,” he bluntly told the assembled scientists, some of whom—including Clark Heath—had spent their professional lives doing just that. “With very few exceptions, there is little scientific or public health purpose to investigate individual disease clusters at all.”21 Many of the researchers who followed Rothman at the podium agreed, especially for residential clusters. But they all acknowledged struggling with the consequences of ignoring requests for investigations. As one of the most experienced cluster investigators, Alan Bender of the Minnesota Department of Health, later told The New Yorker magazine: “Look, you can’t just kiss people off.”22 Instead, he suggested a step-by-step response system that emphasized establishing a rapport with worried callers. Seventy-five percent of the time, he reported, “one or two telephone calls and a follow-up letter will satisfactorily answer the caller’s concerns.”23

  The cluster buster conference had a powerful effect. Just months after it ended, all investigations of non-occupational cancer clusters in the United States had stopped, with very few exceptions. The CDC issued guidelines urging states to adopt Minnesota-style systems and ended its own cluster investigations, at least for a while.24 “The state health departments didn’t want to do these cluster investigations anyway, and now they could stop and say they were just doing what the CDC wants,” remembered Daniel Wartenberg, a New Jersey epidemiologist who attended and argued in vain against the majority view. Instead, Minnesota’s Bender carried the day with his categorical dismissal of cluster studies. “The reality,” he told The New Yorker, “is that they’re an absolute, total, and complete waste of taxpayer dollars.”

  There were other, less obvious ripples radiating from the conference. Perhaps the most far-reaching was the effect that it had on the attitudes of those who attended. New Jersey’s Michael Berry was in the audience as Kenneth Rothman and then Alan Bender spoke. By the end of the conference, he knew what some of the biggest names in epidemiology were saying about cluster studies. Berry had been on the job for less than three years in 1989, and while he did not quite embrace Rothman and Bender’s extreme position, their overall message resonated with him. It was consistent with his own frustrating experiences analyzing neighborhood clusters in New Jersey.

  Michael Berry was not going to stop taking calls from citizens or occasionally conducting incidence analyses—his supervisors at the state health department would not let him stop even if he wanted to. This was New Jersey, after all, the Superfund capital of the nation and a place where environmental health was a perennial political issue. Berry received more cluster calls every year than his counterparts in every state but New York and California, which were much more populous.25 In New Jersey, callers reporting clusters could not just be ignored. But now some of the most prominent cluster-hunters in the world were confirming Berry’s own doubts about what he was doing.

  The request Michael Berry received on March 13, 1995, for another investigation of childhood cancer in Toms River sounded to Berry like another exercise in cluster-hunting futility: a vague complaint, a small community, very few cases of cancer and no obvious culprits—at least, as far as Berry knew at the time. Yet he did not try to talk Steve Jones into withdrawing his request. Jones was not an ordinary citizen. He worked at the ATSDR, and he was passing along a complaint from another authority figure, an oncology nurse in one of the most prestigious children’s hospitals in the world. Just as importantly, Toms River was not just another community. By 1995, the logbook in Berry’s office showed that the state health department had received five calls about childhood cancer in Toms River. The first three—in 1982, 1983, and 1984—were not followed up, but the 1986 request from Chuck Kauffman and the 1991 request from Robert Gialanella had each prompted Berry to undertake an incidence analysis, the second of which revealed that pediatric brain tumors and leukemias seemed to be on the rise during the late 1980s, even if the increase was not large enough to be statistically significant.

  There was another worrisome factor, too. The state health department had just completed a study comparing childhood cancer incidence in New Jersey’s twenty-one counties. The 1994 analysis found that from 1980 to 1988, the overall childhood cancer rate in Ocean County was well above the statewide average.26 That troubled Berry, and it bothered him even more that the rates in Ocean seemed to be especially high for the category of cancers that Robert Gialanella and others had been most concerned a
bout: brain tumors. Thirty-seven Ocean County children under age fourteen had been diagnosed with brain and nervous system tumors between 1980 and 1988, when the overall rate for New Jersey suggested there should have been just twenty-two. In a county with eighty thousand children, that was 70 percent more than expected. And now Steve Jones was telling him that the Philadelphia nurse was especially concerned about brain tumors in Toms River kids.

  Berry set aside his reservations and told Jones that he would look into it.

  CHAPTER SIXTEEN

  Moving On

  Almost no one in Toms River was paying attention as Michael Berry prepared to conduct the first comprehensive analysis of cancer in their community—four long decades after residents first voiced worries that chemical pollution was making them sick. The long fight over the future of the Ciba-Geigy factory and its ocean pipeline had been so all-consuming that its resolution seemed to affect the town like the breaking of a prolonged fever followed by a deep, exhausted sleep. The dye and resin jobs had fled south to Alabama and Louisiana or across the ocean to Asia. The workforce was down to only about three hundred people, and the trickle of wastewater the plant still produced—about 1 percent of its former total—was now flowing into the municipal sewer system. (Ironically, that trickle of treated wastewater still ended up in the Atlantic because the Ocean County Utilities Authority was still quietly operating its three ocean outfall pipes for treated domestic sewage, even though the factory’s pipeline had been shut down.)

  Ciba-Geigy was doing all it could to prolong the slumber. In 1992, the company reached a tidy resolution of the long-running criminal case against it. More than six years after they were originally indicted, the company and former executives James McPherson and William Bobsein pleaded guilty to reduced misdemeanor charges of illegally dumping hazardous liquids and other banned wastes into the factory’s lined-but-leaky landfill between 1981 and 1984. Avoiding jail time, the two men were fined $25,000 each, and the company agreed to pay $9 million in civil and criminal penalties, reimburse the state for more than $2 million in expenses, and donate $2.5 million for local environmental projects.1 The plea deal allowed the company to keep claiming that its illegal actions were unintentional, because the state dropped the more serious charges that Ciba-Geigy had deceived regulators by filing false reports and altering records. “In settling with the state, we take responsibility for mistakes that were made at Toms River many years ago. We apologize for them,” said Richard Barth, chairman of Ciba-Geigy’s United States subsidiary, after the guilty pleas in Trenton. “Fortunately, no harm to health or the environment has resulted.”2

  Not everyone in town believed that. Linda Gillick kept hearing about more kids with cancer and inserting more pushpins into her map, which now hung at the Ocean of Love office. She still tangled occasionally with county officials—objecting to the use of asbestos in water pipes, for example—but Gillick and her board had more or less given up on asking for cancer studies. Besides, Ocean of Love was busier than ever providing services to families of stricken children. There were more families than ever to look after.

  Gabrielle Pascarella was born on February 4, 1989, the year most people in Toms River thought their environmental troubles were over. Her parents, Kim, a lawyer, and Linda, a teacher, brought Gabrielle home and introduced her to her two big sisters, aged eight and four. Gabrielle was a beautiful baby but her pediatrician was mildly concerned about the large moles on her back, called nevi. The marks probably meant nothing but could be a symptom of a more serious condition. A surgeon removed the nevi, but Gabrielle cried a lot and seemed prone to infections. In early December, when she was ten months old, her parents felt a strange hardening of her fontanelle, the soft spot atop an infant’s skull. The bulge indicated that Gabrielle’s brain was under pressure. She was initially diagnosed with meningitis but large doses of antibiotics did not work, so the Pascarellas, like the Andersons and many other Toms River families, made the long drive through the Pine Barrens to see specialists at The Children’s Hospital of Philadelphia. On December 24, they got a diagnosis: malignant neurocutaneous melanosis, an exceedingly rare cancer of the meninges, which are the membranes that envelop the brain and spinal cord.

  “The doctors told us there was nothing they could do other than make her comfortable,” Kim Pascarella remembered. “They told us it was a terminal case.” The Pascarellas had no illusions about the likelihood of success, but they wanted to keep trying. They found a doctor at Memorial Sloan-Kettering who was trying an experimental therapy, which Gabrielle started on her first birthday. Linda Gillick, who had made dozens of trips to Sloan-Kettering already, made another one to see the Pascarellas. They were grateful for her support, even as Gabrielle’s condition worsened. Diagnosed on Christmas Eve, Gabrielle died on the day before Easter. She had lived fourteen months.

  It was hard to believe that life could go on, but Ocean of Love and the fellowship of other families helped. The Pascarellas hosted the group’s annual “family reunion” at their home, and some early fund-raising dinners were held at a restaurant they owned. “We decided to make it a family project to stay involved,” Kim Pascarella remembered. “We saw what Linda was doing for these families, and we wanted to be a part of it.” Soon the annual reunion was too large even for the Pascarellas’ spacious house, and the annual dinner was too big for their restaurant. That was in part a tribute to Linda Gillick’s fundraising acumen, but it was also because there were more cases every year. Cancer seemed to keep finding the families of Toms River.

  The steady accumulation of cases bothered Kim Pascarella, just as it bothered Linda Gillick and Bruce Anderson. Each diagnosis was a deeply personal tragedy that could only truly be understood by the other families who had been through it. But the large number of cases also seemed to have a collective significance, Pascarella thought. “It was hard to put your finger on it,” he remembered, “but there was just something in your gut that said this just wasn’t right.” Pascarella’s law practice included part-time work for the town; he was used to addressing problems in the community. Childhood cancer in Toms River, he thought, was starting to look like more than just a series of individual calamities; it was growing into a community problem that needed a community response, though he had no idea what that response should be.

  Having just agreed to conduct a study of childhood cancer incidence in Toms River, Michael Berry needed to figure out where Toms River was. That was a harder task than it seemed. There was no “Toms River,” strictly speaking. The Toms River region was a crazy quilt of overlapping jurisdictions stitched together since colonial times. Ever since 1768, when King George III issued a royal charter establishing the town, it had been officially known as Dover Township, but no one ever said that they were from Dover. The sprawling school district took the Toms River name, and the post office gave a large swath of the region, including parts of three adjacent townships, a Toms River address.

  This confused history was not a trivial issue. Before he could figure out whether the rate of childhood cancer was unusually high in Toms River, Berry needed to know how many people lived there. Because Toms River was the best-known place-name in Ocean County, some families who told nurse Lisa Boornazian they were from Toms River may have actually lived in, say, Brick or Berkeley. Berry decided to deal with this by focusing his study on children diagnosed with cancer while living in three overlapping geographic areas. The first two were straightforward enough: Ocean County and the township boundaries. Then, to represent the town’s “core” section, Berry selected four census tracts covering about six square miles, coinciding roughly with the area the U.S. Census Bureau called Toms River.3

  Berry also had to decide which cancers to study. If he counted all childhood cancers together, he would be perpetuating the fiction that cancer was a single disease. On the other hand, counting each type of cancer as its own category was unworkable because there would be too few cases. Fewer than five thousand children lived in the Toms River “core”; a c
ommunity that small would typically have just one case of childhood cancer—of any type—per year.4 The incidence rate for any specific cancer type would be much lower still. In the Toms River core, even over many years, there might be just one or two cases of any particular type of childhood cancer—so few that just one additional case would make a huge difference statistically, yet could easily be just a chance event.5 Berry settled on an imperfect compromise between medical legitimacy and statistical validity: He would sort childhood cancer cases into fifteen groupings of similar diseases, plus an “all childhood cancers” group. Even though the groupings were large—perhaps too large to be medically defensible—most would generate only a handful of cases in the core zone. It was a compromise approach, one that Berry thought offered at least a chance of figuring out whether there really was something unusual going on in the town.

  For all sixteen categories but one, Berry included all cases in children under age twenty, since Boornazian had said she was worried about young children and teenagers. But he decided to treat brain and central nervous system cancers differently by carving out a special subcategory for those tumors in children under age five. He did so because Boornazian had reported seeing a lot of brain tumor cases from Toms River and because a statewide study conducted the previous year had identified Ocean County as having a sky-high rate of childhood brain cancer: 70 percent higher than expected between 1980 and 1988. If pollution really were the cause, he reasoned, then very young children would probably be affected most, since there was solid scientific evidence that fetuses, infants, and toddlers were especially vulnerable to chemical exposures.