Disease toll raises fears in a struggling New England town
By Michele Morgan Bolton
Sunday, October 7, 2007
MIDDLEBOROUGH, Massachusetts: The big news in this struggling southeastern Massachusetts community is a proposed $1 billion casino complex that many hope will bring financial salvation.
But for a small group of residents, the hope for economic revival is overshadowed by health concerns. They are awaiting a report this year that could reveal whether the dozens of cases of Lou Gehrig's disease centered around a downtown industrial area were caused by pollution.
The cases, which both state and federal officials call a disease cluster, are located within a mile of Everett Square - a densely settled neighborhood adjacent to the town's onetime factory row. It is now home to two Superfund sites.
The study, financed by the U.S. Agency for Toxic Substances and Disease Registry and conducted by state health scientists, will be followed by the creation of a statewide registry to track cases of the disease, formally known as amyotrophic lateral sclerosis, the cause of which is not fully understood.
State Senator Marian Walsh, a Democrat from Boston, said it was understandable that most residents were more interested in the prospect of obtaining a casino, which would be built by the Mashpee Wampanoag Indians and is expected to create as many as 10,000 jobs.
"It's human nature that we move toward pleasure and away from pain," Walsh said. "But here, if we can understand the genesis, the Registry will bring in money, information and resources that will help get to a cure."
Word about the ALS cluster surprised Scott Ferson, a spokesman for the tribe. "We didn't know about it," he said, asserting, however, that the revelation was not an issue in choosing to locate the project in the town. Middleborough residents voted to accept the casino in July. In early September, Governor Deval Patrick, a Democrat, announced a plan to license three casinos, including one in southeastern Massachusetts.
Amyotrophic lateral sclerosis is a neurodegenerative disease that destroys the ability to control movement. Patients lose their ability to move or speak, but their minds remain unaffected. It is nearly always fatal, usually within a few years of diagnosis.
Some residents, like Victor and Marion Sylvia, married 57 years, have spent years trying to prove that heavy metals and solvents from plating and shoe factories, and the toxic chemical cocktails of other industries, are to blame for the illnesses here.
Victor Sylvia, a former town selectman, knew many of the dead and dying. Others seem like friends, though he knows them only on paper.
"Our hearts go out to these poor souls," he said. "There is no cure."
Now dependent on a cane, he conducts much of his activism from the kitchen table, where 40 years of research fans out in yellowing stacks of maps, newspaper clippings and obituaries. He remembers a pivotal moment in winter 1976 that intensified his suspicions about toxins when he drove around a curve near the factories and found a multicolored mess of melting snow and ice.
Offending sites, like the abandoned Middleborough Plating Company and Rockland Industries, a chemical plant, are either already capped or under remediation. But Sylvia, a farmer who once grew watercress and mint near waterways he insists are tainted, said it was not enough.
"People are still getting sick. That's what bothers me more than anything," he said. "But I'm getting tired. I'm 78 years old. I don't know if they'll ever prove that one company caused a problem."
Wayne Perkins, a town selectman, said: "For years, there's been a fear that something was here creating more of an instance of ALS. I'm concerned. I've always been concerned. It can't be undone, but it can be cleaned up."
Suzanne Condon, director of the state's Center for Environmental Health, said an environmental link may emerge from the report. "About 10 percent of the time we do these types of cluster investigations we tend to see that the environment may have played a role," she said. "But with ALS, we don't really have a surveillance system in place," because there is still no definitive answer to what causes it.
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