Toms River (53 page)

On the day after Wayne Sovocool’s triumphant “I think this is it!” message rolled out of Floyd Genicola’s fax machine, Governor Whitman told United Water to shut down the Parkway well field—the whole thing, all eight wells, for the first time ever. Overnight, Toms River lost about 45 percent of its water supply, forcing the water company to make up the difference by pumping its other wells to the very edge of their capacity, as if it were midsummer instead of mid-November. How United Water would cope the next summer—the same question that had plagued its corporate predecessor, Toms River Water, during the water crises of 1965 and 1987—was anyone’s guess.

Whitman and her health commissioner, Len Fishman, braced for a fresh outbreak of panic as they announced the discovery of an industrial pollutant in the town’s drinking water, but the response was surprisingly muted. Now that state officials were no longer keeping information secret, residents reacted more calmly to each new disclosure. The wild scene in the high school auditorium back in March would never be repeated. Almost no one visited the public liaison office that the state health department had recently opened in Toms River; soon, the office would close for lack of interest. An old pattern was reasserting itself: With each passing month, more residents
wanted to move on with their lives. The same thing had happened after brief surges of anti-Ciba activism in the mid-1960s and the late 1980s. Now that the town was getting so much negative attention, the desire to change the subject was stronger than ever. Residents were still worried about the water, and they sympathized—from a safe distance—with the Ocean of Love families, but most seemed to think the authorities now had the situation in hand. As Fishman repeatedly pointed out, the water in Toms River had now been tested more thoroughly than anywhere else in New Jersey. For most people in town, that was good enough.

Bruce Anderson adamantly disagreed. Like some other Ocean of Love parents, he wanted to keep the pressure on. Attendance at the monthly public meetings of Linda Gillick’s advisory committee was dwindling, but Anderson made a point of never missing one, even though he rarely spoke up. He wanted Fishman and the other officials to know that the families were expecting action to uncover the cause of the cluster and to prevent it from reoccurring. They had been through too much pain to simply accept their children’s affliction as a mystery and move on. The families were a small but formidable political force, with ready access to journalists and politicians, including newly elected U.S. Senator Robert Torricelli, one of their early champions. They had earned their bully pulpit in the most agonizing way imaginable, and they were not going to squander it. Their message, consistent and powerful, could be distilled to a single phrase: We want answers. After everything they had been through, who could deny them that?

Cautious and serious behind his wire-rim glasses, Jerry Fagliano had not endeared himself to Linda Gillick and the other Ocean of Love parents during the first year of the state’s environmental testing in Toms River. He was an eleven-year veteran of the New Jersey Department of Health and Senior Services (the health department’s new official name, as of 1996), which he joined after earning his master’s degree in public health from Yale University. Fagliano was a natural choice to serve as the state’s on-the-scene epidemiologist in Toms
River, since he had expertise in assessing the health risks posed by hazardous compounds in drinking water. His doctoral dissertation, which he was still finishing up in 1996 as a part-time student at Johns Hopkins, looked at whether pregnant women who drank water tainted with low levels of industrial chemicals were more likely to have children with brain cancer. (He found a modest increase in risk.)
¹

Fagliano had spent most of the previous year quietly searching for a scientifically legitimate way to conduct the epidemiological study that the Toms River families so badly wanted. His reticence at meetings annoyed the parents, but he did not want to promise what he might not be able to deliver. The decision on whether to go forward with an in-depth study would be made by his boss at the health department, Len Fishman, in consultation with Governor Whitman. After the initial panic in Toms River, they had backed down from their flat-out opposition to an in-depth study but said that they would authorize one only if it were based on a credible, testable theory of how pollution could have caused a cancer cluster that was unique to the town. Until the identification of SAN trimer, that seemed unlikely. The discovery of low-level radiation in the town’s drinking water might have qualified as a causal hypothesis, except that similar radioactivity had subsequently been found all over South Jersey. The results from soil tests around town, except at the Superfund sites, were similarly unremarkable. The air quality was normal, too—or, at least, was normal now that Ciba had ended manufacturing.

But there was nothing normal about the discovery of a previously unknown compound in drinking water from the Parkway wells. Fagliano had assumed, like almost everyone in state government except Floyd Genicola, that because the extensive environmental testing the state had undertaken in Toms River was aimed at calming the town, nothing surprising would turn up. Now that his assumption had been proved wrong, Fagliano thought that the case for a full-blown study was much stronger. “At that moment, we knew that there was at least one contaminant that people in Toms River were exposed to on a continuing basis, and it was a chemical that was probably unique to the community,” he recalled. That was a “sobering thought” but also
an almost ideal hypothesis to explore. “Now we had at least one question we could ask because we had a pathway to a unique set of chemical exposures. That was a really critical piece to justify the study.”

Now the question was, what kind of study? The fastest, cheapest option would be a case series, similar to the ones Wilhelm Hueper had conducted at DuPont in the 1930s and urologist Arthur Wendel had undertaken with Mitchell Zavon a generation later at the Cincinnati Chemical Works. Those investigators simply interviewed factory workers with bladder cancer and looked for shared exposures that might have caused their illness. In Toms River, many families wanted to be interviewed; they had their own ideas of what types of pollution might be at fault, and they were eager to share them. But Fagliano thought an interview-only study would yield vague and unreliable results. Unlike the dye workers at DuPont and in Cincinnati, who could describe shoveling BNA and benzidine with their bare hands, the affected Toms River families had no idea which chemicals were in the water they had drunk or the air they had breathed. Plus, there would be no control group of unexposed people for comparison purposes—a crucial shortcoming.

Another option would be a prospective cohort study that would, in effect, transform Toms River into a living laboratory for ongoing epidemiological research. For a study period that could last ten years or longer, investigators would monitor the health and habits of the town’s eighty thousand residents and regularly test the water, air, and soil. As the years passed, some children in town would get sick, allowing researchers to then look for correlations between those illnesses and possible environmental causes. Prospective cohort studies were highly credible because they did not depend on the foggy memories of participants, but they were extremely expensive and no one—least of all the Ocean of Love families—wanted to wait another ten years for results. Besides, the emergency closure of the Parkway wells had finally interrupted the last known pathway conveying industrial waste to the residents of Toms River. All of the recent environmental testing had turned up no new risks except radioactivity, now known to be ubiquitous in South Jersey. What the town needed now was a study of past exposures, not current ones.

A case-control study was the obvious choice. Its results would not be as reliable as a prospective cohort because it would depend in part on participants’ memories of past exposures: how much water local mothers had drunk while pregnant, for example. But most case-control studies could be completed in a year or two, and even the most ambitious rarely cost more than a few million dollars. (The Toms River study would become an exception as it grew, taking five years and costing more than $10 million.) Like all forms of epidemiology, case-control studies could never determine the cause of any particular case, but they could confirm correlations between a disease and risk factors, as Richard Doll had shown in the 1950s with his smoking studies, which he later bolstered with even stronger results from prospective cohort studies.

A case-control study of more recent vintage played a decisive role in convincing Fagliano, and his bosses, that an epidemiological study was worth undertaking in Toms River. It concerned the
other
heavily publicized childhood cancer cluster in the United States: the leukemia cluster in Woburn, Massachusetts, ten miles north of Boston. The similarities to Toms River were obvious. In 1979, upgraded tests had found trichloroethylene and other industrial chemicals in two public wells in Woburn, near a field where hazardous waste had been dumped years earlier. A local mother named Anne Anderson and her parish priest, Bruce Young, together compiled a list of twelve local children diagnosed with leukemia between 1969 and 1979, marking the locations of their homes on a map. They saw an obvious clump: Within a six-block area near the two contaminated wells, there were six leukemia cases—including Anderson’s son Jimmy, who died in 1981. The ensuing investigations in Woburn would continue virtually nonstop for another fifteen years, but until 1996, case-control studies at Woburn had failed to identify a likely cause for the cluster. The investigations had foundered because researchers couldn’t tell how much pollution Woburn residents had been exposed to in the past. The problem was that Woburn had eight public wells, and there was no obvious way to look back to the 1960s and 1970s and determine which neighborhoods in the small city were getting water from the two contaminated wells versus the six clean ones.

The big breakthrough came in 1991, when a professor of civil engineering at the University of Massachusetts, Peter J. Murphy, completed an astonishingly intricate “hydraulic mixing” computer model of Woburn’s water distribution system as it existed between 1964 and 1979, when the two contaminated wells—known as wells G and H—were in operation.
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His was not the first attempt to build a computer model of a water distribution system, but it was the most elaborate by far. Murphy started by modeling the current water system, a task that required data on the location, age, diameter, and flow rates of 221,000 feet of water piping. When he was finished with the “current conditions” model, state officials conducted a real-world test by using fluoride tracers to see if the water from each well really went to the neighborhoods where Murphy predicted it would. His model passed the test, but he still needed to push back in time to pre-1979 conditions, when the wells were pumping contaminated water into Woburn homes. Consulting archival city records and weather reports as well as the memories of longtime city employees, Murphy adjusted his model and refined its accuracy so that it could estimate the water mix that had been delivered to fifty-four specific neighborhoods during each of the 110 months that wells G or H operated—a feat akin to reconstructing an entire ancient city based on nothing but old maps and scattered artifacts.

By the time the Massachusetts investigators were ready to attempt a new case-control study in Woburn, they not only had Murphy’s water model, they also had nine additional cases and thus could be more confident that their results would not be overly influenced by chance. Twenty-one local children—about four times more than expected for a town Woburn’s size—had been diagnosed with leukemia between 1969 and 1986. Using the home addresses of the nineteen cases whose parents had agreed to participate, along with thirty-seven matched controls, investigators used Murphy’s model to see if children who drank water from wells G and H were more likely to develop leukemia than those who did not. In May of 1996, at the same time Linda Gillick was pushing for a similar study in Toms River, the Massachusetts Department of Public Health announced the results of the new Woburn study. There was little difference in leukemia incidence
between Woburn children who drank the tainted water and those who did not, but there was a huge increase in risk if their
mothers
had consumed the water while pregnant. In fact, mothers who drank any water from wells G and H while pregnant were eight times as likely to give birth to children who later developed leukemia, compared to those who drank none. And mothers who were particularly heavy drinkers of the contaminated water were
fourteen times
more likely.
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The study, one of its authors declared, shows that “it is likely it was the water, and we believe it was the water during pregnancy” that was responsible for the cluster.
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It was a stunning outcome, and not only because it followed a long string of inconclusive studies at Woburn. For the first time, an epidemiological study had identified the likely cause of a residential cancer cluster—a landmark achievement that raised doubts about the cluster-busting stance of the Centers for Disease Control and Prevention. The study confirming the Woburn cluster and identifying its likely cause had its impetus sixteen years earlier with Anne Anderson’s observation that there seemed to be too many children with leukemia in her neighborhood. That was precisely the kind of anecdotal report that the cluster-busters, led by Kenneth Rothman of Boston University, declared had “little scientific value” and that Alan Bender of the Minnesota Department of Health called an “absolute, total, and complete waste of taxpayer dollars.” Now the Woburn experience suggested that perhaps residential cancer cluster epidemiology was not a complete boondoggle after all.

As soon as he heard about the Woburn study results in May of 1996, Jerry Fagliano saw their significance for Toms River. Woburn had been a touchstone of his career for fifteen years; it was the key reason he had specialized in drinking water epidemiology. He knew all about the difficulties of estimating past exposures, and he considered Murphy’s water model to be a brilliant solution. The parallels between Woburn and Toms River became even more obvious six months later, when SAN trimer was found in two of United Water’s wells in Toms River but not in eighteen others. If a case-control study could be paired with a water-distribution model in Woburn, Fagliano thought, why not Toms River? With the help of a Murphy-style model
of Toms River’s water system, he could see which case families had been exposed to water from the tainted Parkway wells and could thus determine whether drinking Parkway water increased the risk of cancer. Woburn could even help with another crucial part of a study: the long questionnaire that would have to be administered to all of the participating families. Devising the questions was difficult because there were so many topics to cover and the wording had to be as neutral as possible. Fortunately for Fagliano, Massachusetts researchers had already developed an elaborate questionnaire—one Fagliano thought he could adapt to Toms River.