Toms River (44 page)

The federal government’s first foray into cancer cluster investigation had accomplished very little, yet by the late 1970s the CDC was conducting more cluster studies than ever and was increasingly focusing
on chemical pollutants, not viruses—all because of demands from citizens and politicians. Publicity over Love Canal and other environmental disasters had sparked a boom in requests for cluster investigations, especially in states that had cancer registries.
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State health departments were fielding about fifteen hundred such requests per year.
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The most worrisome of those requests—the ones with a plausible suspect cause and rates high enough to make random variation an unlikely explanation—were passed on to the CDC, which by the 1980s was conducting an average of five or six cluster investigations each year. Hundreds more were at least crudely investigated by state health departments, as Michael Berry was doing in New Jersey.

The complaint-driven genesis of almost all of those cluster investigations was turning out to be a profound weakness, and not just because anxious members of the public often reported cancer patterns that turned out to be unexceptional. There was a deeper issue that could not be solved by the clever use of incidence comparisons and statistical significance tests. This was the problem of hidden multiple comparisons.
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The case-control studies popularized by Richard Doll in the 1950s were scientifically elegant not only because they were large enough to reduce statistical uncertainty but also because they began with a hypothesis. Doll wanted to test the proposition that smoking was a risk factor for lung cancer, so he assembled a large group of cases and compared them to a similar but cancer-free control group. Most cluster studies, by contrast, turned deductive science on its head. Instead of starting with a testable cause-and-effect hypothesis, they began with someone cherry-picking a suspicious cluster of cases out of a much larger population.
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For example, when Lisa Boornazian in Philadelphia confided to her sister-in-law that she had noticed an unusual number of sick children from Toms River on the oncology ward, she was making an unstated comparison to the hundreds of other communities that sent patients each year to the ward. Within such a large comparison group, sheer chance could easily explain why several towns—including Toms River—were overrepresented in the ward’s patient population. Similarly, when Sister Mary Viva became concerned about a three-month
period in Niles, Illinois, when leukemia was diagnosed in four local girls, she was making an unspoken comparison to dozens of other three-month periods, and dozens of other diseases, during her years as school principal.

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.
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Between 1961 and 1983, the CDC completed 108 residential cancer cluster investigations and failed to identify a likely cause in any of them.
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Workplace cluster studies had a better record, but only slightly.
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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.
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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.”
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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.”
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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.”
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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.
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“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.
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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.
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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 about: 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.

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.
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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.”
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