Toms River (36 page)

The upshot was that it was nearly impossible to get clear answers about the causes of residential cancer clusters. If the history of occupational cancer epidemiology was like a good detective story, with plot twists, multiple suspects, and—in some cases, at least—a satisfying
conclusion in which the miscreants got their comeuppance, residential cluster investigations were closer to existentialist drama. Important, provocative questions were asked; nothing was ever resolved.

Most of the cluster calls that came in to Michael Berry’s office were about neighborhoods, not workplaces. Since 1980, the state health department had something more to offer those callers than just a calm voice on the other end of the line. That was the year the New Jersey State Cancer Registry came on line. The concept was a simple one: The registry was designed to be the central clearinghouse of information about the approximately thirty-two thousand (at the time) cases of cancer diagnosed yearly in New Jersey.
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That confidential data included the home address, age, and occupation of each afflicted person as well as the type and stage of cancer and the type of treatment. The health department could analyze it to answer all sorts of questions, including whether some parts of the state were getting substandard medical care. The registry’s primary purpose, however, was to identify clusters and provide “more complete and more precise statistical data … necessary to determine the correlations between cancer incidence and possible environmental factors,” in the words of the 1977 legislation that established the registry.
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In other words, it was designed to answer the very questions that were being asked in Toms River during the summer of 1986.

Cancer registries were an old idea, though not a very effective one. In England, the Factory Act of 1895 required employers to report all cancers in workers who handled coal tar products, including dyes. Compliance by factory owners was poor, but the idea proved popular—a natural extension of the infectious disease registries that had started centuries earlier as an early warning system for plagues. In theory, a cancer registry could serve the same function as an observant physician like Percivall Pott or Walther Hesse, but on a larger scale. Instead of being limited to Pott’s patients or Hesse’s miners, a population-based registry could search for patterns in much larger groups—all the dye workers in England, for instance, or every resident of Connecticut, which in 1935 became the first American state to
have a cancer registry. By 1986, 181 city, state, or national cancer registries were operating in sixty countries.
⁸

The registries proved to be much easier to create than to use, however. Even if a government agency managed to get all of the hospitals, clinics, and physicians in its jurisdiction to report the cancer information as required, analyzing those statistics was a nightmarish process. Diagnoses were frequently ambiguous, varying greatly from clinic to clinic. Metastatic cancers were often improperly double-counted when tumors showed up in a second bodily organ, and so were recurrences. The same legislators who were eager to take the credit for establishing cancer registries were far less enthusiastic about staffing them adequately, so it was a Sisyphean task to keep up with the torrent of reported data that poured into the cancer registry offices.

New Jersey’s registry was especially overwhelmed. In 1975, the National Cancer Institute had singled out New Jersey for having the highest cancer death rate in the United States. For men, the annual toll was twenty-nine deaths per ten thousand; for women, eighteen deaths per ten thousand.
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Those rates were about 10 percent higher than the national average. Speculation about the cause of the excess focused on pollution, but death rates were not a very good way to identify possible causes of cancer. The key statistic for causation research was incidence—the frequency of diagnosed cases, regardless of whether the patients died. So the state legislature responded in 1977 by creating a cancer registry that collected incidence data, for the first time in New Jersey.

By the time Chuck Kauffman asked for an incidence study in Toms River in 1986, however, it was clear that the registry was a failure. The office administering it was so understaffed that there was already a backlog of more than two years, which meant that in 1986 the most recent complete set of data was from 1983. (By the mid-1990s, the backlog would rise to three years.) By law, doctors and hospitals were supposed to report cases within six months of diagnosis, but they almost never did. The worst offenders were the huge cancer hospitals in New York City and Philadelphia, which treated thousands of New Jersey residents every year. Children like Michael Gillick or Randy
Lynnworth might not be included in the registry at all if they were treated out-of-state at Memorial Sloan-Kettering, New York Hospital, or the Children’s Hospital of Philadelphia—three of the largest pediatric cancer centers in the world.

Even though he knew about the cancer registry’s limitations, Michael Berry wanted to be as responsive as he could to Kauffman’s request. He decided to conduct what the state health department called an “incidence analysis” of childhood cancer in Dover Township, the official name of Toms River. The process could not have been simpler. First, Berry called the registry office and asked for a computer printout listing all of the cases of cancer diagnosed between 1979 and 1983 in children under age twenty who lived in the township. He found fifteen cases. Then, he determined the total number of cases that “should” have occurred in the town if pediatric cancer in Toms River was as prevalent as it was in the state as a whole. Based on the township’s population, he came up with an “expected” rate of 14.7 cases. In other words, the actual number of childhood cases was almost exactly the same as the expected number. Childhood cancer incidence in Toms River was neither unexpectedly high nor low. It was average. As far as Berry could tell from his crude analysis, there was no childhood cancer cluster in Toms River.

Berry reported his results to Kauffman, but neither was satisfied. For one thing, Berry’s analysis did not include totals for specific types of cancer, and even if it had, the numbers would have been so small that it would have been hard to draw any significance from them. In addition, the final year of the analysis was 1983. Through his informal network at the county health department, Kauffman had heard of some recent cases, diagnosed since 1984, but they were not included because the registry was running two years behind. Finally, Berry’s analysis did not include at least some local children who were treated solely in New York and Philadelphia. If it turned out that an unusually high number of Toms River children with cancer were being treated out of state—as Linda Gillick’s recent experience at Memorial Sloan-Kettering strongly suggested—then the registry-based analysis was misleading.

“There’s no indication according to records that cancer in the
township is elevated,” Berry told the
Asbury Park Press
when word of the study leaked out in November.
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But the article, which carried the unnerving headline “Toxic Waste, Cancer Incidence Raising Unanswered Questions,” was anything but calming. It noted that patients treated out of state were not included, quoting a lawyer and a neuro-surgeon who each said that they knew three Toms River children recently diagnosed with brain cancer. Just as unsettlingly, the same Sunday newspaper included a small notice in the television guide for the upcoming week: The WNET-Thirteen documentary
Chemical Town USA
would air in prime time in three days, on November 19, 1986.
¹¹

The executives at Ciba-Geigy were on high alert; they were expecting to be pounded in the program. The writer and co-producer of
Chemical Town USA
, Michael Rosenblum, had attended college with factory spokesman Thomas Chizmadia and had convinced him to make plant manager Victor Baker available for questioning and to lead a tour of the factory. (“I told my cameraman, just shoot every drippy pipe you can find,” Rosenblum recalled years later.) By the time the tour and interview were over, it was clear that the documentary would be critical of the company, especially because Rosenblum had asked about a possible brain cancer cluster in town. Ciba-Geigy’s lawyers dashed off a letter to WNET president John Jay Iselin claiming that Rosenblum had misled Chizmadia about the content of the story. Iselin had special reason to pay attention, since Ciba-Geigy’s pharmaceutical division had just bankrolled a major science documentary series for WNET (ironically, it was called
The Brain
). The station’s lawyers insisted on reviewing a transcript of an early version of the documentary. Somehow, Ciba-Geigy also got a copy of the same transcript. That prompted another letter from the company’s lawyers, this time demanding script changes.

In the end, Rosenbaum made only a few of the changes the company demanded. But he and Kathleen Hughes, the associate producer who had done most of the original reporting, both felt that the pressure from Ciba-Geigy’s lawyers changed the overall tone of the documentary by the time the final cut was approved by station executives. They had hoped to feature Randy Lynnworth and emphasize the cluster
allegations, but the final version instead stressed the tradeoff between jobs and pollution. Randy and his family did not appear until the tenth minute, long after the story of a Ciba-Geigy worker who was facing a layoff as a result of the planned downsizing. “I thought that it would be a much tougher story than it actually ended up being,” Hughes remembered. “All the major points were still hit upon, but overall it was softer.”

Softened or not, the documentary disturbed many in town when it finally aired. They saw an obviously ill Randy Lynnworth—he would live only a few more months—paging through a family photo album, supported by his mother’s embrace. The Lynnworths could have been anyone’s family, and Randy anyone’s son. “Science today still cannot prove whether the tumor was caused by their proximity to the plant,” the narrator intoned as Ray Lynnworth lifted his teenage son out of his wheelchair and placed him gently into bed. “But for the Lynnworths, the fear that cancer might have been environmentally induced haunts them continually.” In case anyone had missed the point, Shelley Lynnworth added: “You really have to be aware of what goes on around you, because we never ever dreamed that our bubble would burst and our lives would change so drastically. And my God, I hope it doesn’t happen to any of you but you really can’t sit back and say it’s the person across the street, because it’s not. It’s you and it’s me.”

By the end of 1986, it seemed like almost everyone in town was inclined to agree. It was obvious that the cancer issue was not going to go away anytime soon.

Even after the noisy protests of the previous three summers, no one on the New Jersey shore had ever seen anything like August of 1987. This time, the instigator was Mother Nature, not Greenpeace or the Save Our Ocean Committee. Each incoming tide seemed to deposit a new horror on the beaches of Ocean County. On August 13, just in time to ruin a peak weekend, a massive slick of medical waste—probably dumped by a passing barge—washed ashore on a seventy-five-mile stretch of beachfront. The debris included syringes and needles, blood bags, and bandages.
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On Long Beach Island, a boy stepped on a hypodermic needle; so did a mother in Point Pleasant, north of Toms River. The county beaches stayed closed for three days, at the height of the tourist season. The following week, dead crabs washed ashore at Barnegat Light, and high bacteria counts from seagull droppings closed the beaches in Seaside Heights—right next to the Ciba-Geigy pipeline terminus. Most disturbing of all were reports of dead bottlenose dolphins covered with bloody sores. Eighty carcasses were found that summer on New Jersey beaches, apparent victims of viruses and a toxic algae bloom of unknown origin.

None of those plagues was new to the region—there were actually fewer beach closings in 1987 than in the previous summer—but their
cumulative impact in a single month was shocking. Tourism was Ocean County’s largest industry by far, contributing more than a billion dollars a year to local businesses. For merchants, the summer of 1987 was an unmitigated disaster.
The New York Times
described children roaming nearly deserted beaches, collecting tampon applicators to use as sand castle turrets.
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Shore tourism was not only New Jersey’s second-largest source of income (after petrochemicals), it was at the core of New Jerseyans’ self-identification—the best retort to outsiders who derided the state as a putrid industrial wasteland. The economic damage from the pollution was bad enough, but the ridicule was worse. It prompted outrage that was widespread and deeply felt. At two o’clock on the Sunday of Labor Day weekend, at the close of the nightmarish summer season of 1987, thousands of beachgoers joined hands in an unprecedented protest that stretched for miles on Long Beach Island.