Solving the Mystery of a Community Riddled with Cancer
One nurse's concern spurs an investigation into children's health.
When Boornazian told other nurses on the ward that she was planning to drive to Toms River for Carrie-Anne Carter's funeral, they responded with wisecracks that were only half in jest. "People said, 'Oh, don't drink the water when you're there, and don't breathe too deeply,' " Boornazian remembered. From conversations with the Carters and other Toms River families, she had heard a little bit about the Ciba-Geigy chemical plant and its history of pollution. So she was a bit unnerved when, while driving to the funeral, she looked to her left at a stoplight on Route 37 and saw the fence and security gate of the sprawling factory complex. "I remember driving by and thinking, 'That's the plant that everyone talks about.' " For days afterward, she could not stop thinking about that big factory in the woods and about all the local families she had met in the oncology ward.
Lisa Boornazian was not a boat-rocker. In 1995, she was a twenty-four-year-old who loved her job and respected the hierarchy of the hospital. The doctors had told her it was just a coincidence that so many children on the ward were from Toms River, and she was inclined to take their word for it. They were very good doctors, and they gave their patients excellent medical care, even if they were too busy to get to know them. But she could not shake her uneasy feeling that the doctors might be wrong about Toms River.
She and her husband, Adam, came from large families and often got together on weekends with their siblings, many of whom still lived in the Philadelphia area. They were especially close to Adam's sister, Laura Janson, and her husband, Eric. A few weeks after Carrie-Anne Carter's funeral in Toms River in February of 1995, the two couples were having dinner on a Friday night, and somehow the conversation turned to the funeral and to Boornazian's worries about Toms River. The discussion was not something that she had planned. "It just sort of happened by accident," she would remember much later.
In their extended family, Laura Janson was an authority figure on environmental matters. She worked in the Philadelphia regional office of the U.S. Environmental Protection Agency, where she specialized in technical assessments of hazardous waste sites, though she had never worked on any in Toms River. After eleven years at the EPA, Janson was a bit jaded about information that came in from the public because it usually turned out to be confused, poorly documented, or otherwise unreliable. But this was different. Her sister-in-law was not an alarmist; she was a medical professional at a major hospital where thousands of children were treated every year. At dinner, when Boornazian started talking about all the sick children she had treated from Toms River, Janson listened. When Boornazian asked her to check to see if anyone at the EPA was looking into the issue, she agreed. Janson would later explain her decision this way: "When you work at EPA, people are always saying something's wrong with their water, but if it's your sister-in-law talking, and she's a nurse at CHOP who has made actual observations of cancer in children, you figure you'd better follow up."
Janson checked and learned that there were two Superfund sites in Toms River and that neither had been the subject of an EPA health study. Was the agency considering launching such a study in Toms River? No, it was not, she was told. So Janson decided to call another federal agency, one that few members of the public had ever heard of. The Agency for Toxic Substances and Disease Registry was, and still is, a backwater in the federal environmental bureaucracy. Congress created it in 1980, when anxiety about hazardous waste was at its zenith, just seven months after the evacuation of Love Canal. The idea was that the EPA would oversee dumpsite cleanups, while the ATSDR would advise the EPA on the health hazards posed by each waste site. But the ATSDR had very little money to do its job, especially as the number of Superfund sites ballooned in the late 1980s. By 1996, the EPA was spending well over one billion dollars per year (about 20 percent of its budget) on Superfund; the entire ATSDR budget, meanwhile, was just $60 million.
Steven Jones came to the ATSDR in 1992 from the EPA, where he had worked on Superfund cleanups in the Midwest. His new title, deputy regional director, suggested sweeping authority; the reality was that the ATSDR's regional office, which occupied a small corner of the EPA's space in Manhattan, consisted of just two managers: Jones and his boss. Their main responsibility was to make sure that state and local environmental health agencies were doing the work the short-staffed ATSDR could not do itself. Only rarely did Jones field calls from the public about supposed cancer clusters; when he did, they usually ended in mutual frustration. Like Laura Janson, he had been around long enough to know that ordinary citizens rarely understood what constituted a true cancer cluster.
So when Steve Jones's office phone rang one morning in March of 1995 and the woman on the end of the line started talking about a possible cluster in Toms River, New Jersey, there was no reason to think it would be anything more than another dead-end conversation. As Jones listened, though, he heard some things that caught his attention.