Another “man-made” disease cluster solved

What man-made pollutants were causing the mysterious cluster of scleroderma in South Boston?

Scleroderma is a rare, incurable, sometimes fatal illness that hardens muscles and internal organs. It’s victims are overwhelming women. It’s an autoimmune disease, meaning the body’s immune system is attacking itself.

There’s been a cluster of the disease in a section of South Boston which has long confounded citizens, except that they knew it had to have a man-made cause. Some blamed a nearby power plant. Others hazardous waste sites.

It got national media attention and led to an 11-year Massachusetts Department of Public Health. In their just-released findings they did indeed find “higher than expected cases’’ in a neighborhood of about 30,000 people.

But they found the significant cause was not the environment, but rather genetics.

“It’s not necessarily that the community they were living in was producing this disease,’’ Robert Simms, the chief of rheumatology at Boston Medical Center and a researcher in the study told the Boston Globe. “When you look at the data, it does not support that.’’

The study found that people with a family history of specific autoimmune-rheumatic diseases, such as rheumatoid arthritis, Raynaud’s disease, lupus, and thyroid disease, were more likely to develop scleroderma.

“For the women afflicted with the disfiguring disease,” said the reporter, “the findings have come as a bitter disappointment.”

“I believe there is a cumulative effect,’’ said Mary Cooney, a South Boston activist who has been working with the state on the study. “If these women had grown up in West Roxbury or Hyde Park, they would not have gotten the disease.’’

Have sympathy for these women. They are no hardcore environmental activists receiving tens of millions of dollars from mega-foundations to prove a that which isn’t. As one put it, “I thought that if we had an answer then we could fix it,’’ adding, “It would help us make sense of why so many of my neighbors have this horrible disease.’’

As Simms put it, the women were seeking “emotional validation.’’

That said, clusters like these are quite common and virtually never pan out (the main exception is drug side affects), but the media play them for all they’re worth – to attack perfectly safe technologies.

The most famous, or infamous as it were, is probably the Long Island breast cancer cluster.

As I wrote back in 1997:

Since the early 1990s, women in the Northeastern U.S., especially Long Island, New York, have been claiming that A) they are suffering an extraordinary rate of breast cancer, and that B) the cause most assuredly lies in the hand of man.

What the specific pollutant is, they have been at a loss to say – pesticides in general, chlorinated chemicals, power lines. The point is that some faceless, nameless corporation run by insensitive (no doubt cigar-chomping) white males has to be at fault.

Environmentalists have willingly accommodated them in this belief. Not long ago the left-wing magazine Mother Jones featured a cover with a woman wearing a gas mask as a brassiere.

But nothing ever came of it. One study in the Journal of the National Cancer Institute showed that women in the Northeast are indeed more likely to die of breast cancer than in some regions of the country, but less than others. It also found the risk was almost completely due to certain risk factors which these women have incurred, including having children later in life and greater rates of alcohol use and obesity.

It might also have noted that Ashkenazi Jews have extraordinary breast cancer rates and that Long Island has large Jewish population.

But the activists didn’t want to hear this. Cindy Pearson, a spokeswoman for the Washington-based National Women’s Health Network, told the Boston Globe the study “doesn’t set my mind at ease, and it doesn’t make me think there aren’t environmental factors at work.”

Yet in 1993 still another study found that the Long Island breast cancer rate wasn’t extraordinary. Using a computer database, the Long Island-based newspaper Newsday discovered, “The highest breast cancer incidence rates were in the San Francisco Bay area, suburban Boston, and suburban Chicago, not on Long Island. Nassau and Suffolk (the counties making up Long Island) ranked right in the middle of the group studied.”

Did this mollify the Long Island activists? Far from it. “The fact that Long Island isn’t alone isn’t a comforting thought at all – it’s an even more disturbing message,” one told Newsday.

Get it? The original problem was that Long Island’s breast cancer rate was so extraordinarily high. When it turned out it wasn’t extraordinarily high it was proof of an even greater problem.

Since I wrote my article, the National Cancer Institute released a study giving man-made chemicals on Long Island an all clear.

“Long Island is not the breast cancer capital of the United States, as the activists say, Dan Fagin, who covered the Long Island “epidemic” for 12 years at Newsday, told the British Medical Journal. “It’s the capital of breast cancer activists.”

Yet the NCI is studying the situation to this this day and probably always will. There are still activists. And still grant-hungry researchers willing to confirm, reconfirm, and then reconfirm again findings. This though the money and effort could be so much better spent on finding and reducing real risks.