Data on Gehrig's raise flag
High rates locally; registry urged
The Department of Public Health will release data at the end of this month showing a greater-than-average incidence of Lou Gehrig's disease in Southeastern Massachusetts.
The preliminary data on the disease - formally known as amyotrophic lateral sclerosis, or ALS, and nearly always fatal - are being released in part to show the need for a statewide registry to track the disease.
"According to prevalence estimates, there are 4 to 6 cases per 100,000 of ALS statewide, but 9.5 cases per 100,000 in Plymouth County and across Southeastern Massachusetts," said Suzanne Condon, director of the Bureau of Environmental Health, in an interview last week.
Health officials are familiar with the local ALS rate because the Plymouth County/Southeastern Massachusetts area was one of three so-called pilot areas designated for study. The other two were Essex County - which had a rate of 6.1 cases per 100,000, Condon said - and the Boston area, which is still being looked at.
Within Southeastern Massachusetts, health officials conducted a separate and more detailed focus study of two areas where residents have long complained about illness. The first includes Hingham, Abington, Rockland, and Weymouth, the four towns adjacent to the former South Weymouth Naval Air Station. The base, a federal Superfund cleanup site, is known to be contaminated with solvents and heavy metals. The second focus area was a section of Middleborough near three known industrial hazardous waste sites. Concerned Middleborough residents say they have counted 27 people who have suffered from ALS in the area.
Residents in both areas believed illness clusters were related to environmental factors. Results of the two focus studies are not yet in.
"What is included in the report on Middleborough is a very specific look at not just numbers of ALS, but where they are in relation to three [hazardous waste] sites: Gerson Co., Middleborough Plating, and Rockland Industries," Condon said. "We put the companies on a map, the environmental data, and the people diagnosed with the disease. Since we don't have an ALS registry, we had to go through records at doctors' offices. It was much more resource intensive, but what we are already seeing is higher than expected rates."
The Department of Public Health study focused on 1998 to 2003, and was funded by the federal Centers for Disease Control in Atlanta, Condon said.
Middleborough resident Suzanne Dube, whose cousin and uncle lived near the waste sites and died of ALS, is glad the problem is getting a closer look. "It's really exciting," Dube said. "We really need to get a registry up and running. That would be huge."
A registry would make tracking cases of ALS and identifying possible environmental connections far easier.
The four towns surrounding the former air base, like the Middleborough focus area, had an incident rate of 9.5 per 100,000 for ALS, Condon said.
The Middleborough and former naval base focus studies - which provide more site-specific information than the overview to be released later this month - are currently in draft form and under peer review by the CDC. The federal agency will make recommendations on whether any additional data should be gathered before results are released. There is no timetable for making that information public, Condon said.
If that study shows a possible link between an ALS cluster and environmental causes, the next step in the study process, Condon said, would be to take a closer look at the available data. That would include interviewing people with the illness who live in the areas of high incidence, as well as the relatives of those who died from it.
"You interview the people or their next of kin asking how long they lived in the area, or whether anyone else in the family had that disease," Condon said. She added there is some familial connection in ALS cases. "My mother's sister died of it, and my cousins are routinely tested," Condon said.
In Middleborough, residents Victor and Marion Sylvia have long been urging a closer look at ALS incidence in their town. "Knowing all those people, my husband and I are very concerned," Marion Sylvia said. "We researched and all those people lived in a 2-mile radius of where those factories were."
Some of those who developed ALS may have, by then, moved away, and "that's why a registry is so important," she said.
Condon said the 27 cases most likely occurred over a much broader time period than the five years the Department of Public Health looked at.
Meanwhile, at month's end, the department will issue a report that includes prevalence estimates across the state along with an outline of what the office believes it will take, including the cost, to establish a statewide registry for ALS.
In Middleborough, an ALS study committee was recently established, at Victor Sylvia's suggestion, and committee members are currently being appointed by selectmen.
Selectmen Adam Bond and Marsha Brunelle have agreed to serve on the committee, along with the town manager and two members from the public.
Christine Wallgren can be reached at CLWallgren@aol.com. 