Air Date: Week of December 6, 2002

Two Boston neighborhoods are the focus of an unprecedented public health study. In these areas, the rates of scleroderma and lupus, both autoimmune diseases, are many times higher than normal. As Rachel Gotbaum reports, Massachusetts is investigating whether pollutants might be the cause.

Transcript

KNOY: It's Living on Earth. I'm Laura Knoy. Coming up, getting the gardens of Marrakech to grow green again. First, auto-immune diseases are little understood by scientists. For most of these diseases, there is no known cure, nor do doctors know why people get them.

In two neighborhoods in Boston, public health officials have launched a new kind of study to help unravel the mystery. They're looking into why a high number of women are getting connective tissue auto-immune diseases, and wondering whether industrial chemicals are to blame. Rachel Gotbaum reports.

GOTBAUM: Six years ago at the age of 38, Liz Lombard was diagnosed with a rare auto-immune condition called scleroderma. Scleroderma is a connective tissue disease in which uncontrolled production of collagen hardens the skin and can eventually destroy a person's internal organs. Lombard pulls up her sleeve. Her right arm feels like it is made of stone.

LOMBARD: I'm like a mannequin. I'm like this table. I've described it as being a size six in a size four skin. It literally, I'm very hard, I've very tight. My mouth has shrunk. My hands don't function. You see I'm very shiny.

GOTBAUM: Since she was diagnosed, Lombard has lost about 40 pounds because eating has become difficult. Her hands are stiff and her fingers are gnarled. At first, the mother of five thought she was just unlucky. But soon she discovered that several other people who live in her South Boston neighborhood also had scleroderma.

LOMBARD: Ann MacAlly, she was number five. She was the fifth one I found out about, and it blew me out of the water. She grew up five doors away from me. Five doors, in little tiny South Boston. She's five doors away and we both have this rare disease, scleroderma.

GOTBAUM: Epidemiologists estimate that one in about 10,000 people, most of them women, will get scleroderma. In South Boston, a neighborhood of about 35,000, at least 26 people have been diagnosed with the disease, and three have already died. The rate of scleroderma in this neighborhood is seven times above normal.

The illness has no cure, and no one knows why people get it. But a few workplace studies suggest that exposure to solvents found in petroleum and other toxic chemicals could increase the incidence of scleroderma.

[SOUND OF TRAFFIC]

GOTBAUM: Liz Lombard stands in front of an oil refinery a few blocks from where she grew up. Because of leakage, the area has been designated a major hazardous waste site. Lombard points to a nearby beach where she swam as a child. She says there was always petroleum in the water here.

LOMBARD: Yeah, here's the beach. That's Boston Harbor. They call that the lagoon, and we used to swim there, of course, as kids. You didn't have to put on baby oil because you were so greasy when you got out of that water.

GOTBAUM: Lombard also worries about other toxic sites in South Boston, including two power plants on the same blocks. She suspected the incidence of scleroderma in her neighborhood was no coincidence so she decided to contact the Massachusetts Department of Public Health to get some answers.

Dr. Suzanne Condon researches disease clusters for the state. Once she heard Lombard's story, she decided to investigate.

CONDON: I think we know clearly the numbers are a lot higher than they should be. What's less clear is, is it something about the environment itself in South Boston, or is it something specific to the people who live in that environment?

GOTBAUM: Condon's office is tracking known hazardous waste sites in South Boston, and mapping where those sites are in relationship to the homes of people with scleroderma. They are also asking study participants about their occupational experiences, their daily habits, and family medical histories, and they will also interview 500 long-term but healthy residents as a comparison control group. But this isn't the only disease cluster in Boston.

DRAKE SAUCER: My name is Bobbie Drake Saucer. I'm 56 years old and I've been diagnosed with lupus.

GOTBAUM: Bobbie Drake Saucer lives across town from Liz Lombard in the Roxbury neighborhood of Boston. Drake Saucer has had lupus for 15 years. Like scleroderma, lupus is an auto-immune disease in which connective tissues become inflamed and can eventually shut down internal organs.

It is estimated that the rate of lupus in Roxbury and surrounding neighborhoods is more than two and a half times higher than normal. When Drake Saucer heard about the women in South Boston, she wondered about women in her neighborhood.

DRAKE SAUCER: We felt we were having the same, or similar, kind of problem in Roxbury, Dorchester and Mattapan because of what we were feeling in terms of all the newly diagnosed cases. We're trying to find out if in fact there is an epidemic, and if there is an environmental link with all these toxic waste sites that are in the community.

GOTBAUM: The state Department of Public Health is also investigating the lupus cluster. The same workplace studies that link petroleum products to scleroderma link them to lupus as well. So researchers are investigating dozens of old gas stations in the area where oil has leaked from large tanks into the soil.

[SOUND OF TRAFFIC]

GOTBAUM: But gas stations aren't the only suspected problem. In the heart of the Roxbury neighborhood, a former electroplating factory has been deemed a state hazardous waste site. It's leaked petroleum and other toxic chemicals into the nearby soil.

Elaine Krueger is a toxicologist with the state Department of Public Health. There are more than 200 hazardous waste sites in the area, and she says proving any connection to disease will be difficult.

KRUEGER: Urban environments are actually quite complicated because you have a lot of electrical conduits and things like that. So that the pollution can go into those other conduits and go in a variety of different directions that aren't easy to predict. So it does complicate how people might actually ultimately be exposed to a site like this.

GOTBAUM: Lupus strikes black women about three times as often as non-blacks. Unlike scleroderma, scientists know that there is a strong hereditary component to lupus, but doctors say that doesn't explain why black women in industrialized countries are much more likely to get the disease than women in Africa. Dr. Patricia Fraser is a geneticist at Boston's Brigham and Women's Hospital who's working with state health officials on the lupus study.

FRASER: If we have a population at high risk for lupus because of inherited tendencies, and they're also exposed to certain hazardous wastes that we think may also trigger lupus, could this possibly cause an even higher rate of lupus in those individuals in those specific neighborhoods?

GOTBAUM: Fraser is trying to tease out the relationship between the environment and lupus susceptibility genes. To do that, she'll identify women in these neighborhoods who do have those genes, but who have not developed the disease. Fraser will then analyze where these women live compared to the women who are sick.

Only a handful of studies have ever shown an environmental link to a specific disease. Dr. Tim Aldrich should know. He's one of the few scientists who travel the country investigating disease clusters. The University of South Carolina epidemiologist says in his 20 years of work with agencies like the federal Centers for Disease Control, fewer than five cases have concluded that a specific environmental exposure was linked to an illness.

ALDRICH: The burden of proof is immense. To go into the public where you have people that, the general term is "are free living"--they eat what they want, they go where they want, they do what they want, and to try to exact some evidence that is so compelling as to meet the requirements for proof, borders on the impossible.

GOTBAUM: That's because disease clusters can also happen by chance. Think of throwing a handful of pennies onto the ground and having them fall into concentrated piles. But Aldrich says the studies can suggest an association between a disease and a specific environmental toxin. Those results can then help direct scientists to further research, like in the case of the two Boston studies.

Liz Lombard, the South Boston woman who spearheaded the scleroderma investigation, says she'll be happy if state health officials can provide her with some answers, but she knows that won't be easy.

LOMBARD: I feel like I started it with this letter. I'd like to see it through to the end, but I know it's going to take a long time, but I feel we don't have a lot of time. And I never really felt a sense of urgency, but after the three deaths in 2001, I feel that sense of urgency; urgency to get some answers before the rest of us are dead.

GOTBAUM: Both the scleroderma and the lupus studies are expected to be completed by next summer. For Living on Earth, I'm Rachel Gotbaum.

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