Toms River

Dan Fagin talking::

for many years, I was the environmental reporter for Newsday, which is a large newspaper, circulates on Long Island and in New York City. And on Long Island, in particular, cancer patterns were a huge issue for our readers, and I was very interested in—what they’re interested in is what I’m interested in. And I thought it was quite fascinating to understand epidemiology, which is a complicated word for a very simple concept, which is patterns of cancer, patterns of disease, and trying to interpret those patterns. It’s like a mystery story. So I wrote a lot about that on Long Island, especially about breast cancer, because that was such a huge issue. But I never really felt like I was getting to the bottom of it, that I was giving readers the kind of core understanding that they needed, also because I felt like the really good science wasn’t being done on Long Island.

But it was being done in this town in New Jersey that I had heard about, Toms River. And I went down there and wrote a story, and I thought it was quite fascinating. I thought the people involved were amazing, including but not limited to the Gillicks. And I thought, well, if I ever get a chance to really write—get the time to write a deep book about this fascinating subject of cancer epidemiology, I would look for a great narrative, and a great narrative where also great science was being done. And, well, that was Toms River. So when I went to New York, I finally had that choice—I went to NYU, I finally had that chance.

Toms River was really a town like any other town. It was a sleepy town down on the Jersey Shore. The economy was somewhat moribund. So, when one of the big Swiss chemical companies, Ciba, started looking for a place to relocate their operations—they had gotten into some trouble, environmental trouble, pollution and also— In Cincinnati, Ohio, and previously in Basel, their original hometown.

I trace that evolution over time. Basically everywhere they went, they eventually became a most unwelcome neighbor. But when they came to Toms River, initially everyone was thrilled, because this was going to be, or it was, ultimately, one of the largest dye manufacturing plants in the country, one of the larger ones in the world. And then it eventually expanded from dyes into plastics and other chemical products. And for many years, it was the most important employer in Ocean County. And they weren’t—wasn’t just that there were a lot of jobs; they were well-paying jobs, good blue-collar jobs. So, in some ways, it was a real agent for social mobility—as long as people didn’t think too hard about the long-term consequences. There was a lot of short-term thinking versus coming to grips with the long term.

it turns out that dyes are fascinating to look at for a couple of reasons, the first of which is that all of the big chemical companies that we know and love—starting with BASF, the largest chemical company in the world, still around; Ciba; Sandoz; so many—GAF—so many of the big chemical companies started out by manufacturing dyes, which was really the first great product of the chemical age, starting in the 1850s. On the other hand, the thing about making dyes is that it generates a tremendous amount of hazardous waste. I mean, a lot. In Toms River, I was able to show that it actually generated much more waste than usable product. And all that product had to go somewhere. And traditionally, where they put it was either in the ground or into the water. And that’s exactly what they did in Toms River, too.

Linda Gillick ’s a fascinating person and a very brave one and, most of all, an extremely determined person. And she was always a very sort of community-minded person. She was involved. She was a schoolteacher and was, you know, the kind of person who had a network of friends and always wanted to know what was going on. And her life changed in a horrible way when Michael was diagnosed with neuroblastoma at three months. And at that time, neuroblastoma was just a terrible diagnosis. And they told Linda that it was less than 50-50 that Michael would reach his first birthday. And, I mean, the Gillicks were so traumatized that they did things like celebrate his first birthday at six months, because they were afraid he wouldn’t actually reach his first birthday. And they actually purchased a coffin for Michael, because if the time came, they didn’t want to have to make that horrible—you know, go through that horrible process. So, it was just the most horrible situation that you could possibly imagine.

And many people, quite understandably, would have turned inward with their grief. But that is not Linda’s way. And what happened was, she would go with Michael to Sloan Kettering or New York Hospital up in New York or to the Children’s Hospital of Philadelphia in Philadelphia and get treatment, because Toms River was not yet large enough to have advanced cancer treatment, although there is now. And wherever she would go, she would bump in—it felt like to her that she would bump into other parents and kids from Toms River. And she was the kind of person that started keeping track. And it eventually got to the point where, as your viewers and listeners just saw and heard, she made a map. And this is the kind of thing that happens sometimes, not just in Toms River, but in Woburn, Massachusetts, which people may be familiar with, you know, from the movie and book Civil Action that John Travolta was in. But it’s not just there. Many places, citizen activists start keeping track of cases. In Linda’s case, she was not able to get the attention of the authorities. They told her, “Sorry, we don’t think there’s anything there.” Things changed only later, thanks to a whole sort of strange series of events, centering on a nurse at the Children’s Hospital of Philadelphia.

her name is Lisa Boornazian. And she was a—at the time, was a young nurse in the pediatric oncology ward. And she, too, as with Linda Gillick, had noticed that there were a lot of people coming to CHOP, as that hospital is called, from Toms River. And that was really strange, because the Children’s Hospital of Philadelphia is a very famous institution, it attracts children from all over the world, and certainly from all over the region, the Mid-Atlantic region, so why should there be so many kids from Toms River? And that really bothered her. That bothered Lisa. She said something to the doctors. The doctors said, “You know, just—you’re a nurse. Go back to being a nurse. You really—you really don’t know what you’re talking about here. It’s probably just a coincidence.” But it really bothered Lisa.

You know, the thing is that when you’re a nurse, a dedicated nurse like Lisa, you really get to know the families and their parents. You spend those long shifts overnight. And when a child dies, you go to the funeral. And she went to a number of funerals in Toms River. And every time she went, she would drive past the chemical plant and say, “Oh, that’s that place that the families were telling me about.” So what happened was that it turned out that Lisa’s sister-in-law worked at the EPA. And she was talking to her sister-in-law about this, and her sister-in-law happened to know who to contact within the federal government to try to get something going. And then that person, in turn, contacted the state health department, which said, “OK, we’re actually going to take a look at this.” Even that was not the end, because the state health department (New Jersey State Department of Health) tried to keep that initial assessment secret.

I want to make sure everybody knows that this story is about a lot more than just the chemical plant. And that is, another phenomenon that was happening in New Jersey and other places around the country at that time, in the ’60s and ’70s, was illegal dumping, that chemical companies were looking for cheap ways to get rid of their waste, and they often used intermediaries to get rid of their waste, so they wouldn’t—so their hands wouldn’t be on it. And that’s what happened in this case. Union Carbide had thousands of barrels from its plant in Bound Brook, New Jersey, that it wanted to get rid of. It didn’t want to spend the money to dispose of the waste properly, so it engaged with a contractor, a very disreputable guy, who ultimately took those barrels and dumped them in the back of a chicken farm.

Thousands of barrels. And he—he was so overwhelmed by the work that he would just throw them off the side of his truck, and they would burst on the sandy soil.

It was actually over a period of just a few months, but the damage was done. It was in the early ’70s. But the damage was done. And a whole ’nother area of groundwater contamination—there was the—there was the groundwater contamination from the chemical plant, which contaminated one set of wells in the ’60s. There was a whole ’nother area of groundwater contamination caused by this illegal dumping. And I should say, too, that the town’s thirst for growth played into this, because they kept drilling wells frantically and pumping those wells beyond their capacity. And what they essentially did was slurped up that contamination and distributed it throughout the town, because they were pumping those wells so hard. So that’s what happened.

And ultimately, you know, to sort of tie it back to what was happening with Linda Gillick and other folks in town who thought that there were many kids who were getting cancer, Linda made her map, and she thought that it was something in the water. And she got the state to finally—Lisa Boornazian, the nurse at the Children’s Hospital of Philadelphia, got the state to look into this. But the state did a very sort of primitive calculation that said, “OK, is there more childhood cancer there than we would expect?” And it turns out, yeah, there was a lot more childhood cancer than would be expected based on the demographics of New Jersey. But the state health department didn’t know what to do with that information. They didn’t want to do a full-blown investigation. They thought that would scare people. It would be expensive. So they didn’t. They kept it quiet. But Linda Gillick and other people found out. And there was a huge story in the Newark Star-Ledger in 1996, and then all hell broke loose. And eventually, a serious piece of environmental epidemiology, a case-control study, was done, and it concluded that there were indeed relationships between environmental exposures in town and unusually high rates of childhood cancer. And that’s a very unusual thing to be able to—to be able to make—draw that relationship.

I mentioned A Civil Action earlier. So, if anybody’s read or watched A Civil Action, you know that the star of that is a guy named Jan Schlichtmann, an attorney, is quite a character. And he basically lost his shirt, his suit, all of his money, everything he had, pursuing that case in Woburn, Massachusetts. He didn’t want to make that mistake again. He didn’t want to have total warfare. He wanted to initiate a kind of a negotiation, out-of-court negotiation. And he was joined in that by some very able attorneys in Philadelphia: Mark Cuker, Esther Berezofsky and others. And they initiated a very unusual out-of-court process that ended with a settlement, a value—we don’t know the exact amount, but it was certainly over $30 million, well over $30 million, that was divided among 69 families. But the companies, of course, did not admit any kind of liability, because they don’t do that.

It would be hard to say that those families got what was appropriate, considering what they had gone through. lawyers get money.

children died really depends on how you define the cluster, over time and space. But, you know, you could say as many as 40 or 50 died. Out of the 69, a smaller number

One of the amazing things and sad things about Toms River is that nobody ever really took a comprehensive look at adult cancer. I mean, that’s the big picture here that, you know, maybe we could talk about for a few minutes. And that is, it’s just as matter of luck that we know what happened in Toms River. It was a very flukey series of decisions and individual acts of bravery that got us to the point where we were able to get a decent epidemiological study done. Most of the time, we have no idea.

And that’s the bigger point that I wanted to try to make, and that is that we don’t really do public health surveillance effectively in this country. You know, we spend $80 billion-plus, the intelligence agencies—that’s just the disclosed budget; it doesn’t count the undisclosed budget—and they’re doing data analysis all the time, allegedly to protect us, you know, from bad guys. We don’t—we collect a tremendous amount of environmental and public health data, and we do nothing with it—almost nothing with it. We don’t look for patterns. We don’t analyze those patterns. And that is a terrible tragedy, where people are dying because we do not do effective public health surveillance in this country. And we’re operating on laws that are 50 years old. We’re using science that is almost always conducted by people with the greatest ax to grind—regulatory science, which is conducted either by the chemical companies themselves or the contractors they hire. We’ve got some real systemic problems here, and that was a big reason why I wrote this book.

Michael Gillick had cancer since three months. The tumors in his body are pushing his spine through his skin. They are wrapped around all of his organs, as he describes it. He said, “No corporation, no politician is bigger than a combined voice of people. When people join together and form their voices into one loud “We’re not going to stand for this,” there’s no standing up against that.”

I think two things surprised me. Number one, even though I’ve been an environmental reporter for, you know, 25-plus years, I was surprised at the brazenness of the behavior of the companies involved, you know, as late as the ’90s, knowing about exposures and responding very inadequately to those. And the second thing is really what Michael was talking about, and that is that I—it’s wonderful, and somewhat surprising, although we shouldn’t be surprised, to see a community of people sort of rise to the occasion. And it took a while for that to happen in Toms River, but it did happen. It did happen. And it’s quite inspiring the way that that story unfolded.

— source democracynow.org

Dan Fagin, author of Toms River: A Story of Science and Salvation, for which he won the 2014 Pulitzer Prize for General Non-Fiction. He is an associate professor of journalism and the director of the Science, Health and Environmental Reporting Program at New York University’s Arthur L. Carter Journalism Institute.