Toms River (80 page)

11.
Sister Mary Viva, the school principal in Niles, Illinois, did give investigator Clark Heath one bit of tantalizing information: During the same years the leukemia cases were diagnosed, several waves of a contagious fever had swept through the school. There were no reliable records of the outbreaks, but Heath’s conversations with the school nurses suggested that they coincided with the months in which several of the leukemia cases were diagnosed. The researchers also found antibodies that might be related to leukemia in the blood samples of several relatives of the victims. To Heath, this was a hint that the same virus that had spread the fever might also have triggered leukemia in a few genetically susceptible children. As Alfred Knudson would have put it, the infection might have provided the second “hit.”

Fifty years later, researchers are still searching for a virus associated with acute lymphocytic leukemia in children. Their efforts have been spurred by two closely related hypotheses suggested by studies of childhood leukemia clusters. The “population mixing” hypothesis was first proposed in 1988 by University of Oxford epidemiologist Leo Kinlen, who was seeking to explain a cluster of childhood leukemia near a nuclear power plant. Kinlen suggested that ALL may arise from an extreme immune response to a viral infection. Though very rare, these extreme reactions would most likely occur in fast-growing communities in which infected populations mix with nonimmune children who are highly susceptible. Another eminent British researcher, biologist Melvyn Greaves of the Institute of Cancer Research in London, has expanded on Kinlen’s ideas, as well as Knudson’s, by proposing the “delayed infection” hypothesis. Greaves and his frequent collaborator, Joseph Wiemels of the University of California at San Francisco, believe that the first “hit” occurs in utero, while the second involves a communicable infection that most children easily suppress but may trigger leukemia between the ages of two and five in a very small
number of highly susceptible children. (These rare children, Greaves suggests, are less likely to have been in day care, where exposure to other children would have built up their immune systems.)

In an interview with the author, Greaves said that it is possible that the initial hit during pregnancy could be from exposure to a carcinogenic compound but noted that the dose would have to be large enough to trigger genetic damage. (Greaves is especially interested in a translocation called TEL-AML1 often found in ALL patients but also present in many healthy children.) For a current assessment of the population mixing and delayed infection hypotheses, see Kevin Urayama et al., “A Meta-Analysis of the Association between Day-Care Attendance and Childhood Lymphoblastic Leukaemia,”
International Journal of Epidemiology
39 (2010): 718–32.

12.
Clark W. Heath, “Community Clusters of Childhood Leukemia and Lymphoma: Evidence of Infection?”
American Journal of Epidemiology
162:9 (November 1, 2005): 817–22. After leaving the Centers for Disease Control, Heath was a vice president of the American Cancer Society, where his generally skeptical views about environmental causation of cancer would raise the ire of activists.

13.
By the mid-1980s, thirty-seven states had established cancer registries or were in the process of doing so. See Stephanie C. Warner and Timothy E. Aldrich, “The Status of Cancer Cluster Investigations Undertaken by State Health Departments,”
American Journal of Public Health
78:3 (March 1988): 306–7.

14.
Michael Greenberg and Daniel Wartenberg, “Communicating to an Alarmed Community about Cancer Clusters: A Fifty State Survey,”
Journal of Community Health
16:2 (April 1991): 71–82. Greenberg and Wartenberg, of Rutgers University, surveyed all fifty state health departments in 1989 and concluded that they were getting a total of 1,300 to 1,650 requests for cluster investigations per year.

15.
For more about “occult multiple comparisons,” see Raymond Richard Neutra, “Counterpoint from a Cluster Buster,”
American Journal of Epidemiology
132:1 (July 1990): 1–8.

16.
This kind of
post hoc
hypothesis generation is sometimes called Texas sharpshooting, after a joke in which a cowboy wildly fires shots into the side of a barn, then looks to see where the bullet holes have randomly clustered and draws a target centered on the densest cluster, declaring himself a sharpshooter.

17.
There is, arguably, at least one exception to the universal failure of residential cluster analysis in identifying new carcinogens. The mineral erionite was identified as a lung carcinogen in the 1980s based on studies of two villages in central Turkey in which there were very high rates of mesothelioma and also high concentrations of airborne erionite fibers. As Raymond Neutra points out in “Counterpoint from a Cluster Buster,” however, the erionite example is not a conventional time-limited cluster because lung cancer has apparently been endemic in those villages for centuries.

18.
Glyn G. Caldwell, “Twenty-Two Years of Cancer Cluster Investigations at the Centers for Disease Control,”
American Journal of Epidemiology
132, Supp. 1 (1990): S43–S47.

19.
From 1978 to 1984, the National Institute for Occupational Safety and Health investigated sixty-one alleged workplace cancer clusters and identified a
plausible cause in just five, none of which could be scientifically confirmed. In forty-six of those clusters, NIOSH found, rates were not actually higher than expected. See Paul A. Schulte et al., “Investigation of Occupational Cancer Clusters: Theory and Practice,”
American Journal of Public Health
77:1 (January 1987): 52–56.

20.
Phil Brown, “Popular Epidemiology and Toxic Waste Contamination: Lay and Professional Ways of Knowing,”
Journal of Health and Social Behavior
33 (September 1993): 267–81.

21.
Kenneth Rothman’s keynote address to the “Cluster Buster” conference in February of 1989 was later published in a special issue of the
American Journal of Epidemiology
that also included twenty-five other papers presented at the same conference. Rothman’s contribution, entitled “A Sobering Start for the Cluster Busters’ Conference” is on pages S6–S13 of the special issue, which was published in July of 1990 (vol. 132, Supp. 1). The entire issue serves as an excellent guide to the perils and promise of investigating disease clusters, including cancer clusters.

22.
Atul Gawande, “The Cancer Cluster Myth,”
The New Yorker
, February 8, 1998, 34–37.

23.
In addition to the 75 percent who were satisfied after an explanatory telephone conversation or letter, another 20 percent of cluster callers in Minnesota, according to Alan Bender, could be mollified by supplying them with preexisting data about cancer rates and environmental conditions. “Relatively modest” data collection and analysis took care of another 4 percent. Only 1 percent of the time did Minnesota get to step four: an in-depth investigation. Bender’s department conducted only five of those between 1981 and 1988, a period during which it had fielded 420 telephone calls or letters about clusters. See Alan P. Bender et al., “Appropriate Public Health Reponses to Clusters: The Art of Being Responsibly Responsive,”
American Journal of Epidemiology
132, Supp. 1 (July 1990): S48–S52.

24.
In its “Guidelines for Investigating Clusters of Health Events,” published in final form on July 27, 1990, the Centers for Disease Control declared: “The unofficial consensus among workers in public health is that most reports of clusters do not lead to a meaningful outcome.”

25.
Craig W. Trumbo, “Public Requests for Cancer Cluster Investigations: A Survey of State Health Departments,”
American Journal of Public Health
90:8 (August 2000): 1300–1302.

26.
The 1994 report, entitled
Childhood Cancers in New Jersey: 1980–1988
, is no longer available on the state health department’s website. The revised report,
Childhood Cancer in New Jersey: 1979–1995
, was published in 1999, in the midst of the Toms River cancer furor, and does not include the county-to-county comparisons that incited local activists.

1.
The terms of the 1992 legal settlement that resolved the criminal charges against Ciba-Geigy also required the company to put $50 million into a trust fund for environmental cleanup at the factory site—money it was already obligated to pay under the Superfund program.

2.
Patricia A. Miller, “Ciba Guilty of Pollution,”
Asbury Park Press
, February 29, 1992.

3.
From the river, the Toms River “core zone” extended north for two miles to State Road 571. Its eastern border was Vaughn Avenue, its western edge an irregular line that included parts of the Garden State Parkway and Old Freehold Road.

4.
The cancer incidence rate for United States children under age twenty was fourteen cases per one hundred thousand per year in 1995, according to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program. By 2005, the rate had risen to sixteen cases per one hundred thousand.

5.
This small-numbers problem was less severe in the township, where there were about twenty thousand children, and in Ocean County, where there were one hundred thousand.

6.
The data tables in this chapter are based on tables produced by Michael Berry for his 1995 incidence analysis. They were later reproduced in Appendix 1 of
Childhood Cancer Incidence Health Consultation: A Review and Analysis of Cancer Registry Data, 1979–1995 for Dover Township
, New Jersey Department of Health and Senior Services (December 1997).

7.
Michael Berry’s cancer rates for all New Jersey children were based on the average of three years of statewide incidence data, 1986 through 1988. He did not have access to statewide data for any other years. Berry also needed to account for the fact that the year-by-year age distributions of the childhood population of the county, town, and core zone differed slightly from each other and from the state as a whole. In the fast-growing township, for example, the average age of the total population of children under age twenty was slightly lower than the statewide average. That was significant because certain cancers were much more common in younger children than teenagers, while other kinds tended to be found in older children. So, in order to calculate an accurate “expected” number of cases, Berry had to adjust his estimates to reflect the local age distributions. He did so by subdividing the childhood population into groupings of ages zero to four, five to nine, ten to fourteen, and fifteen to nineteen. Then he calculated what percentage of the overall childhood population in the Toms River core, Dover Township, Ocean County, and the entire state fell into each of those subgroups. Finally, he adjusted the statewide figures so that the “expected” number of cases reflected the specific age distributions of the county, the town, and the core zone.

8.
Fabio Barbone’s doctoral thesis,
A Nested Case-Control Study of Lung Cancer and Central Nervous System Neoplasms Among Chemical Workers
(1989), was later republished in the form of two journal articles: Fabio Barbone et al., “A Case-Control Study of Lung Cancer at a Dye and Resin Manufacturing Plant,”
American Journal of Industrial Medicine
22 (1992): 835–49; and Fabio Barbone et al., “Exposure to Epichlorohydrin and Central Nervous System Neoplasms at a Resin and Dye Manufacturing Plant,”
Archives of Environmental Health
49:5 (September 1, 1994): 355–58.

9.
Don Bennett, “Widow Sues Ciba over Cancer,”
Ocean County Observer
, July 27, 1995.

10.
The reinjection plan ended up costing tens of millions of dollars less than Ciba had initially feared, thanks to an EPA decision not to require extra treatment to
remove salts from the treated wastewater since it was not being directly discharged into the river—even though the reinjection zone was so close to the river that much of the treated water seeped into the river anyway. See Don Bennett, “EPA Flip-Flops on Ciba Water,”
Ocean County Observer
, May 14, 1993; and Richard Peterson, “Ciba Proposal Gets Praise from Activists, Neighbors,”
Ocean County Observer
, June 18, 1993.

11.
The “Ex-Pariah” headline was published May 25, 1995, in the
Observer
and referred to an award Ciba received from the United Nations–affiliated World Environment Center. The editorial, published June 6, 1995, included this line: “Fortress Ciba, where officials once arrogantly insisted that everything was pristine, is now openly encouraging participation by neighbors in its affairs.”

12.
Craig Wilger, January 7, 1993, letter to Gary Adamkiewicz of the U.S. Environmental Protection Agency, 2.

13.
U.S. Environmental Protection Agency,
EPA Superfund Record of Decision: Reich Farms
, September 30, 1988, 14.

14.
The name change from Toms River Water to United Water Toms River was prompted by a 1994 merger between its parent company, Philadelphia-based General Waterworks, and one of the largest water companies in the United States: United Water Resources, based in Harrington Park in northeastern New Jersey.

15.
U.S. Environmental Protection Agency, “Responsiveness Summary: Reich Farms Superfund Site” (1995). See also “Dover Water Cleanup Plan May Be Altered,”
Asbury Park Press
, August 17, 1995.

16.
Michael Berry’s August 31, 1995, letter to Steven Jones was later reproduced as Appendix I of
Childhood Cancer Incidence Health Consultation: A Review and Analysis of Cancer Registry Data, 1979–1995 for Dover Township, New Jersey
(December 1997), 67.

17.
Though it was a key moment in the Toms River saga, Michael Berry and Robert Gialanella have different recollections as to why Berry sent Gialanella a copy of the 1995 analysis Berry conducted of childhood cancer incidence in Toms River. Berry thinks that Gialanella called him to express renewed concern about childhood cancer in Toms River, prompting Berry to send him the newly completed analysis. Gialanella, however, says he has a clear memory of the analysis being sent to him without his having requested it, and says that by 1995 he had given up on asking for help from the state. (Gialanella had requested a similar investigation in 1991, with ambiguous results.) Berry, who was involved in dozens of cluster investigations during his long tenure at the state health department, acknowledges that he is not sure.