A Heavy Toll From Disease Fuels Suspicion and Anger
Jodi Hilton for The New York Times
Victor Sylvia near one of the abandoned factories in Middleborough, Mass. He believes the area is responsible for cases of disease.



By MICHELE MORGAN BOLTON
Published: October 7, 2007

MIDDLEBOROUGH, Mass., Oct. 6 — 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 later 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, which was financed by the federal 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 West Roxbury, 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,” Ms. 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 A.L.S. cluster surprised Scott Ferson, a spokesman for the Mashpee Wampanoag Tribe.

“We didn’t know about it,” Mr. Ferson 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, Gov. Deval Patrick, a Democrat, announced a plan to license three casinos, including one here 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.

Mr. 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, Mr. Sylvia 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 Mr. 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.”

Town Selectman Wayne Perkins said: “For years, there’s been a fear that something was here creating more of an instance of A.L.S. I’m concerned. I’ve always been concerned. It can’t be undone, but it can be cleaned up.”

Suzanne K. 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.

High incidences of breast cancer in some affluent communities may not so much be attributed to a cluster, for example, but rather better screening processes for early detection, she said.

“But with A.L.S., we don’t really have a surveillance system in place,” Ms. Condon said, because there is still no definitive answer to what causes it.

Investigations into such cases are often inconclusive, and what appear to be clusters often cannot be proven to be anything other than coincidence.

Donna Jordan and Mary Ann Singersen were co-founders of the A.L.S. Family Charitable Foundation in Buzzards Bay. Ms. Jordan’s brother, Clifford Jordan Jr., fell ill and died in his 30s, after living and working less than a mile from the plating factory.

Ten years after his death, her pain remains intense.

“I can’t believe they’re worried about a casino,” Ms. Jordan said. “We’re not messing around with something like a cold or a bug here. Here was a dad who rode his bike 20 miles a day. He didn’t drink. He didn’t smoke. And then he couldn’t do anything but wither away.”

There are other stories, Ms. Jordan said, like the owner of a three-family home in the square who died of A.L.S. “Then someone else moved in, and they died from A.L.S.”

“We’ve been screaming about this for years,” Ms. Singersen added. “But for whatever reason, it keeps getting swept under the rug.”

Rick Arrowood, president of the state chapter of the national A.L.S. Association, said few officials had any idea there were so many cases in Middleborough before advocates brought the crisis to the state’s attention.

“What else didn’t they know?” Mr. Arrowood asked. “Unfortunately, it’s all an unknown. We can’t urge people to take steps to avoid something because we don’t know what that unknown is.”

Suzanne Dube lost a cousin to A.L.S. in 2000, after he worked much for of his life as an accountant in Everett Square. In August, an uncle who was a mechanic in the same area also died.

“Until the registry is in place, we are just shooting in the dark,” Ms. Dube said. “We need it. So history doesn’t repeat itself.”

http://www.nytimes.com/2007/10/07/us...=1&oref=slogin