by Dan Fagin
Daniel Wartenberg thinks he knows. An epidemiologist at Rutgers, he has been studying clusters for more than thirty years. Wartenberg was not involved in Toms River, except for brief service as an outside reviewer of the case-control studies, but has participated in dozens of other cluster investigations. The reality of cluster studies, he argues, is that researchers are much more likely to underestimate the number of true, nonrandom clusters than overestimate them. Typical tests of statistical significance are so conservative, he explains, that clusters that fail those tests and are dismissed as mere products of bad luck are actually true clusters 20 percent of the time. The same tests lead to errors in the other direction—a random cluster wrongly identified as a true one—just 2.5 percent of the time.15 He asks, “Should we be comfortable in missing eight true clusters for every false one we detect?”
Even more importantly, the vast majority of clusters are never even tested for statistical significance, Wartenberg notes. More than a century after the creation of the first cancer registry, no government anywhere in the world has a comprehensive program to proactively sift through registry data and identify possible clusters worthy of further analysis. Various proposals in recent years to set up surveillance systems to track the distribution of cancer and to create “response teams” to investigate potential clusters have made little headway in the U.S. Congress or in Europe.16 Instead, cancer registries are used reactively, in response to press coverage or calls from anxious citizens who happen to notice what looks like a cluster and are motivated enough to call their health department and push for an investigation. In a country as large as the United States, thousands upon thousands of neighborhood-sized clusters would be expected to occur for solely random reasons, in addition to an unknown number of true clusters. Yet almost all of them, random or true, are never even noticed. Health departments apply tests of statistical significance to only a few hundred reported clusters every year. Just two or three of those, in a typical year, are then followed up with a full-blown environmental study aimed at identifying possible causes. Agencies base their decisions on whether to authorize those rare multimillion-dollar studies not on how high the case numbers are but on how successfully the affected population campaigns for attention from the press and politicians.
With so few residential cancer clusters fully investigated, no one should be surprised that just two scientifically credible studies—in Woburn and Toms River—have found a likely environmental cause, says Wartenberg. He adds that it makes no sense to conclude from such a small, biased sample that pollution-induced neighborhood clusters either do not exist or are so rare that they do not matter. The more likely conclusion, he asserts, is that many true clusters go undetected or are found by citizens but wrongly dismissed as random by local health officials who are overworked and don’t want to rock the boat. “There are probably quite a number of clusters out there that people haven’t noticed but are real clusters,” he said. “Even when they are noticed, many clusters aren’t studied because no one has any idea what the exposures are and also because it’s hard for people to get traction with the health department.”
This disconnection between citizens and their government is at its worst in poor communities where pollution and illness are endemic but take a backseat to more urgent social ills like hunger, homelessness, unemployment, and crime. And that is why today’s Toms Rivers, Wartenberg suggests, are likely to be in places where people are worried about issues more immediate than cancer clusters. Places like the industrial boomtowns of inland China.
At thirty-nine, Liu Yu-Shu looks twenty years older. She has the heavily lined face of someone who has not slept well in a very long time. Every night, she spreads a blanket on the floor of the overcrowded hematology ward at Chongqing Children’s Hospital, in a narrow space beside the bed of her nine-year-old son.17 Many parents and even patients sleep in the hallways of this sprawling hospital in central China, so she counts herself fortunate. Liu and her husband are construction laborers; he lays industrial tile, she mixes the adhesive. The previous year, they had left their son with an aunt near Chongqing while they looked for work one thousand miles away in Guangdong Province, in the booming south, where foreign-owned factories sprout like mushrooms after a monsoon rain. Liu found a job there but could not stay long. Back home, her son had developed a cold he could not shake, and tests at a neighborhood clinic showed that his blood platelet counts were dangerously low. A bone marrow test at Chongqing Children’s confirmed the diagnosis: acute lymphocytic leukemia, the most common childhood cancer.
A shadow hangs over the wards at Chongqing Children’s and across China, and not only because cancer treatment is still substandard by American and European standards.18 In the last few years, the same kind of amateur epidemiology that captivated Toms River has broken out in provinces like Guangdong, Hunan, and Chongqing. Independent Chinese journalists and activists are collecting their own unofficial, unscientific data about pollution and cancer and are making maps and identifying “cancer villages,” posting their findings on the Internet.19 The hotspots they find tend to be outside cities because many of the worst-polluting factories in China are in exurban areas, and also because semirural communities still have enough social stability for residents to recognize a potential cluster. (Patterns of non-contagious illness are almost impossible to detect in the churn of the teeming cities.) Even the Ministry of Health acknowledges that pollution—industrial waste dumped into rivers and groundwater, plus air emissions from factories and power plants—has made cancer the leading cause of death in China.20 But because there are no credible cancer registries and the government rarely investigates reported clusters, the unofficial “cancer village” investigations are usually the best information available about local cancer patterns and are given wide credence, including by doctors. A physician on the hematology ward at Chongqing Children’s, Liu Xiao-Mei, said that she treats many children of factory workers. Is pollution the reason? “I think so,” she said, “but it is very difficult to determine.”
What is beyond dispute is that China has zoomed past the United States and is now the largest producer and consumer of many of the world’s most heavily used toxic chemicals. The chemical industry is booming in other developing nations, too, but China’s position is dominant. In 1996, the year the Toms River factory shut down, the United States and Europe each produced eight times as much plastic as China; by 2010, China was making almost as much plastic as the United States and Europe combined. During the same period, Chinese production of benzene, ethylene, and sulfuric acid quadrupled. There were similar leaps for dozens of other chemical industry staples—including aniline, the dye molecule that started it all in 1856.21 Familiar names have fueled the boom. BASF, the old German aniline maker that is now the world’s largest chemical company, has seven thousand employees and forty factories in China. BASF is building a fifty-acre plant in Chongqing to make aniline, nitrobenzene, and methylene diphenyl diisocyanate—the latter produced from phosgene, the extremely poisonous gas once used in Toms River to make azo dyes.22 Dow is on a similar path, with four thousand Chinese employees and twenty factories.
Liu Yu-Shu and her husband have not been lucky enough to land jobs with a big multinational company like BASF or Dow. Like millions of Chinese, they are itinerant laborers who go wherever there is work. Family is important to them. Their older son has severe epilepsy, so they sought and received government permission to have a second child, in contravention of China’s one-child policy. But Liu could not afford to rest while pregnant; instead, she worked long hours mixing adhesive for her husband, who was laying tile at an expanding factory that made decorative plates for export. Could prenatal exposure to epichlorohydrin in adhesive, or arsenic in glaze, have triggered her younger son’s leukemia? Liu does not attempt to answer the unanswerable question. Unlike the physicians on the ward, she has not thought much about possible links to pollution. Instead, she is focused on her son, and is grateful for the treatment he is receiving. “
Since we came here,” Liu said, “his spirit is up and he is more cheerful.” How long he will be able to stay is an open question. Chongqing Children’s Hospital treats more than one hundred kids with leukemia every year, but many are sent home with medicine after only one month of chemotherapy because their families cannot afford a full treatment regimen.
A tall, handsome woman, a visitor from New York, stands out in the crowded hallway outside the hematology ward. Frederica Perera has not lost any of the boldness that led her, thirty years earlier, to coin the term molecular epidemiology and help spur a worldwide rush by researchers to look for genetic biomarkers in the bodies of people who live or work in highly polluted places. She has worked all over the world but says the toxic exposures in China are the highest she has ever seen. Collaborating with doctors at Chongqing Children’s, Perera and a Columbia University colleague, Deliang Tang, have measured adducts—molecules of benzo(a)pyrene and other invading pollutants that fuse with DNA and disrupt it—in the blood cells of several hundred children in a nearby city. They have found strong correlations between the presence of adducts and an array of developmental problems, including delayed speech and poor motor skills.23 There are also weak associations between adducts and childhood cancer, and Perera thinks that if she had the millions of dollars it would take to study thousands of highly exposed children, the statistical links to leukemia and other cancers would be clearer.
“We already know enough,” Perera said, “to conclude that these exposures are causing developmental delays and probably raising cancer risk.” Since there is no sign of a minimum threshold exposure below which there is no risk, she added, whatever is happening in the factory towns of China is happening everywhere else, too—just much more subtly. The question, as always, is whether the imperfect tools of epidemiology are capable of finding it.
There is a time-warp quality to the meetings of the Citizen Action Committee on the Childhood Cancer Cluster, which still convenes once or twice a year at the Toms River Municipal Complex on the Avenue of Americanism, one block from the spot where apocryphal town founder Tom Luker supposedly shared his wigwam with Princess Ann. At the front of the room, Linda Gillick still occupies the center chair. Sometimes, when his fragile health allows it, her now-adult son, Michael, sits to her left, still waiting for answers, as he has ever since the committee began meeting during the frenzied weeks of early 1996.
Nowadays, the audience in the overlarge meeting room is always sparse and consists mostly of people who are paid to be there: lawyers, company representatives, and government officials. Jerry Fagliano still drives over from Trenton for most of the meetings, and when he does he can count on another ritualistic scolding from Gillick about the slowness of the state cancer registry in compiling and releasing case counts in Ocean County and around the state. Thanks to her network at Ocean of Love, which still assists families all over the county, Linda Gillick still knows about every local case of childhood cancer at least a year before the state registry does.24
There is a familiar rhythm to the committee’s agenda items, too. If it is summertime, United Water is sure to be struggling to meet the water demands of its customers, and Gillick is certain to be furious that town residents are not turning off their lawn sprinklers and otherwise conserving water. “People have forgotten what this community went through,” she will say, shaking her head. Many of the issues that made the township so vulnerable to pollution are still unresolved. Having shed its cancer town label, Toms River is growing again, though not at its previous breakneck pace. Years of fiscal austerity, however, have cut environmental enforcement to the bone in the New Jersey departments of health and environmental protection, and there are still no mandatory water conservation rules in Toms River—not even after the two senior water company managers in town were caught faking safety tests in order to try to keep up with ever-increasing local usage.25 (The parent company caught them, not state regulators.)
Much of the time at committee meetings is given over to relentlessly cheerful updates on the local Superfund cleanups, delivered by smiling “community relations” managers from Dow and BASF. (Ciba’s ancient German rival in the aniline industry, BASF, acquired what little remained of Ciba’s chemical business, including its cleanup liabilities, in 2009.) At the Parkway well field, SAN trimer readings in the two still-closed wells have fallen steadily and are now barely measurable at less than thirty parts per trillion. Soon, Dow officials suggest, it will be time to reconnect those wells to the drinking water system—a move Linda Gillick vows to oppose. “No one should be exposed, no matter what your studies show,” she told a Dow consultant at a 2012 committee meeting. With the EPA’s permission, Dow is already making plans to shut down the air stripper that was supposed to have solved the Parkway well contamination problem back in 1988—but didn’t.
Over at the shuttered chemical plant, meanwhile, the pine forest is slowly reclaiming the property, six decades after the Swiss cleared the land for their mini-city devoted to dye production. For now, the water tower that Greenpeace seized for those three crazy days in 1984 still stands; town volunteer firefighters use it to practice rescues. And while there are still about thirty-eight thousand drums buried in the portion of the thirty-year-old landfill known as Cell One, most of the even older dumps on the factory site have finally been excavated.26 The Smudge Pots, the Moon, the Acid Pits, and all of the other open-pit dumps whose evocative nicknames were once part of the everyday lexicon of workers like George Woolley and the Talty brothers have at last been cleared out, as part of a $92 million cleanup operation overseen by the EPA and funded by Ciba’s insurers.27 By the time the project ended in 2010, more than 343,000 cubic yards of soil had been scooped and treated—enough to cover twenty-seven football fields with six feet of tainted dirt.
The completion of the soil cleanup seemingly clears the way for a momentous step that Toms River politicians have been talking about for years: the redevelopment of the last large open tract left in the township. While the worst areas of the factory site would be fenced off, there have been many ideas for what to build in the less contaminated areas: ball fields, a large office park, maybe even housing. So far, no plan has moved forward, mostly because billions of gallons of contaminated groundwater still lie beneath the property. Thirty-seven recovery wells on or near the factory grounds are still pumping, treating, and re-injecting almost two million gallons of groundwater every day, as they have since 1996. The pumps will run until at least 2025, the earliest the site could be taken off the Superfund list. The legacy of contamination will linger even as the Ciba name, which dates from 1884, fades from memory—a casualty of corporate consolidation.28 Over at Reich Farm, meanwhile, similarly lingering contamination means that Samuel Reich, who turned ninety in 2011, almost certainly will not live to see the redevelopment of his old egg farm, now a ramshackle site for industrial storage. He and his wife, Bertha, have been trying to sell it since 1975, four years after their calamitous decision to let Nick Fernicola bring waste drums onto their land for $40 a month—a pittance Fernicola never bothered to pay them.
A few blocks from town hall along the river, in the far corner of Riverfront Landing Park, a mass of unkempt shrubbery is encroaching on the granite memorial to the lost children of Toms River. But the names etched into the stone are still starkly clear, and the families—those who have not moved on or moved away—are as determined as ever to protect their legacy. There has been no talk of dissolving the citizens advisory committee, even though its meetings are canceled more frequently now. “It is hard to keep it going after all this time, but we’ve learned that you can’t assume somebody else is going to take care of things for you and make all the right decisions,” said Kim Pascarella, who still co-chairs the committee with Linda Gillick.
“I feel that’s the best way I can honor the memory of my daughter, by staying involved, even if we never get definite answers from the scientists,” Pascarella said. “In the end, what I’ve learned is that when it comes to th
is type of science, you really can’t be arrogant and assume you know the answers. Arrogance by these companies and by the government is what got us into all this in the first place. We know that now.”
For Alison, Anna, and Lily, always.
And for Lois Levin Roisman, 1938–2008.
Acknowledgments
Nonfiction writing is a community endeavor camouflaged as a solitary one. If you have made it this far, you know that Toms River is the story of a very large number of extraordinarily passionate people. I will always be grateful that so many of them were willing to extend their passion to the creation of this book. The events recounted here were often painful and always intensely emotional for everyone involved; the passage of time has done little to dull the pain. That 140 people were nonetheless willing to talk to a stranger—several times, in many cases—demonstrates a level of trust and commitment that I have tried very hard to honor in these pages.
I owe a special thanks to Linda Gillick for initially helping to orient me in Toms River. Her decision not to sit for a formal interview does not diminish my deep admiration for what she has accomplished in her community. Even now, after twenty-five years of service to local families in crisis, she and her staff at Ocean of Love are continuing to do outstanding work providing emotional and financial support to Ocean County children with cancer and their siblings and parents. You can learn more about their work at www.ocean-of-love.org and can assist them directly by sending contributions to Ocean of Love for Children with Cancer, 1709 Route 37 East, Toms River, New Jersey, 08753.