The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (No Series) (16 page)

That April night at the Toxic Waste/Lupus Coalition community awareness meeting at True Bethel Baptist Church, Rhonda Dixon Lee, sitting with members of her community whom she had known all her life, was stunned by what she was hearing. She turned to Judith Anderson and asked her, “Did I just hear what I think I heard? The city and state knew about these sites all these years? And all three of those sites sit within a mile of my home?” She had been sick, her whole family had been sick—for ten years. “All those years of people being sick and dying and people are only now telling us the truth about what’s really going on?” she asked. Lee burst into tears.

John Vena informed residents that he wanted the Environment and Society Institute to partner with them to seek a grant from the National Institute of Environmental Health Sciences to bring together University at Buffalo scientists and community members for a five-year study on the health impact of 858 East Ferry, focusing on the prevalence of autoimmune disease. Vena called it “the community’s project.”

Judith Anderson stood up to say that her lupus organization would assist residents in any way it could.

Residents headed home, reeling from what they had learned. Kayla’s mom, Marion Jordan, was one of them. Her daughter had been terribly ill lately and was now living in Atlanta with her older sister, who was helping to care for her. After the meeting Marion called Renita, who had been unable to attend, to tell her that their worries had been justified: their neighborhood lupus/autoimmune cluster seemed to be related to contaminated industrial waste that had sat unaddressed in the community for decades.

“Oh my goodness, I was angry,” recalls Renita Chatman. “All I could think about was how when I was pregnant with LaShekia I did everything right. I didn’t smoke, I didn’t drink, I exercised, I slept, I ate the healthiest foods. When she was born, I nursed her, I fed her the right things. I was so careful. I worked hard to give her a good start and to protect her. But I couldn’t protect her from the fumes and the particles in the air and the water full of stuff that I couldn’t even see. I couldn’t stop thinking about it. When I was pregnant I used to love to eat ice chips all day. Was that what made LaShekia sick? Was it all those ice chips full of all the runoff from those waste sites that sullied our water system? I didn’t know. And I knew that I would never know.”

THE NEAR IMPOSSIBILITY OF PROVING A CLUSTER

In 2001 John Vena received a grant from the National Institute of Environmental Health Sciences to bring together University at Buffalo scientists and community members to study the health impact of 858 East Ferry Street on area residents. Although he would serve as the principal investigator, the Lupus Coalition would work as co-investigator. Part of the funding allowed for the creation of the Buffalo Lupus Project, to help experts reach into the community, find out who was suffering from autoimmunity, and aid them in getting the help they needed.

Although the university team was interested in whether or not a lupus cluster existed in East Ferry, proving that a cluster did exist was not their primary goal. Their main mission was to help the community deal with their immediate and critical environmental health crisis. It would be a mistake to focus their efforts on trying to demonstrate that there was a cluster because proving a scientific cluster is a nearly impossible epidemiological task, and nowhere is that more true than in the field of autoimmune disease. Technically, a cluster can be defined as a greater than expected occurrence of disease cases in a geographically defined region that is unlikely to have occurred by chance alone. Several elements are necessary in determining any cluster: the underlying disease prevalence should be known with some reliability, and the boundaries of the geographic area need to conform to natural population patterns. In other words, the area cannot be artificially constructed to include the maximum number of cases. Researchers also look for “biological plausibility”: is it already well established that the chemical or agent present in the community can lead to this particular disease? There is also the question of proximity: are you more likely to suffer from the disease the closer you live to the contaminated site?

In considering whether East Ferry would fit such criteria for a cluster, the university team had to ask some fundamental questions. Could it be sure that the link between the environment and the group of people with disease was causal? People living in communities where industrial toxic waste sites tend to be situated are, frequently, at the lower end of the socioeconomic ladder. If they weren’t, they might well have moved from such an economically depressed neighborhood long before. Life in such rundown neighborhoods is inherently more stressful. Dealing with poor housing conditions—broken heating systems, busted windows and doors, potholes in the sidewalks, high levels of industrial or traffic noise—can all make it more difficult to get through each day. Moreover, if you don’t have enough money for the rent, the car has broken down again, and you live with a continual shortfall in groceries, your days are more stressful than if you have no such worries. Stress in and of itself is known to play a strong role in disease manifestation. Stress also leads to more “health risk behaviors”—poor diet, alcohol abuse, and so on, which can in turn lead to poorer health outcomes.

Could the researchers prove that the number of people with autoimmune disease in the East Ferry area of Buffalo was statistically significant enough to be a cluster? Or was it merely a statistical aberration resulting from the difficult life circumstances of people in the area? These are the questions that the University at Buffalo team would ask in trying to judge whether East Ferry qualified as a cluster site. A number that looked high, compared to another area of the country, still might not prove the cause and effect relationship between toxic waste sites and autoimmune disease that they were looking for.

Researchers were further limited by the nature of autoimmune disease itself. It often takes years for autoimmune diseases like lupus to be diagnosed, and even longer for those living in underprivileged populations who lack access to good care or who might be more easily dismissed by doctors because of their difficulty in covering hefty medical bills. Moreover, during the decades that these toxic waste sites had been quietly left active like forgotten landmines in the neighborhood, residents had moved, and many had died. More people might have been sick, yes, but some were no longer around to be part of any head count.

Even for those who had stayed put and who had been accurately diagnosed, there remained the issue of how to find them. Lupus and other autoimmune diseases, unlike cancer, are not reportable diseases, meaning health departments do not collect information on who has an autoimmune disease, much less how many are afflicted with each of the nearly one hundred different diseases that fall under the autoimmunity umbrella.

On the other hand, if your great aunt were to be diagnosed with lung cancer tomorrow, she would be added automatically by the physician or hospital treating her to statistics systematically gathered on the 9 million Americans who have ever been diagnosed with any sort of cancer in the United States. The National Cancer Institute, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries all fund surveillance research on who has which cancer by age, sex, race, and locale. So we know, at any given juncture, how many Hispanic women at age forty have breast cancer in New York City. Or how many sixty-five-year-old African-American men have survived prostate cancer in Florida. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program’s data program is so specific that patient information includes the stage of each patient’s cancer tumor at diagnosis, the first course of treatment, and follow-up status. This information is available to all through the National Cancer Institute’s Web portal, through its SEER Cancer Statistics Review.

By comparison, the 23.5 million patients who suffer from autoimmune diseases do not claim megabytes in cyberspace in any national database. Physicians are not required to report who has autoimmune disease to any national registry, because no national registry exists. The data we do have is based on small epidemiological studies from which experts have extrapolated as best they can. No true numbers are available on where these patients live or when they fell ill, or even what autoimmune disease they might have. Search for details about them and what emerges is a dark screen.

Finally, researchers faced one more substantial hurdle in proving the biological plausibility of an autoimmune-disease cluster. Since the very concept of autogenicity—that chemical and toxic agents can prod the immune system to overreact, resulting in autoimmunity—is in and of itself new, how can we go about proving there is a cluster of people who have autoimmunity as a result of exposures to toxic waste in their area?

The State University of New York at Buffalo environmental scientists were unsure if they would be able to meet all the criteria for an ironclad cluster. However, they felt that they had more than enough information to warrant investigating the question further. Moreover, as scientists concerned with public health, they needed to reach those who were ill and help them get the treatment and care they needed. With the aid of Vena’s grant money, Judith Anderson was asked to be the lupus educator for the project and chair of the Research and Survey Committee. Since federal law does not allow access to patients through doctors’ offices or health records, Judith had to be creative. She examined old tax records to find those who had lived in the area and moved, then, if she was able to track them down, she asked about their health status. She arranged for billboards to be raised alongside the highways in the vicinity. The signs showed three African-American women standing side by side and big bold letters saying “We live near 858 E. Ferry St. We all have Lupus. Are you sick too? Take 5 minutes and call Judith to join the registry.” The Buffalo Lupus Project, working together with the community’s Toxic Waste/Lupus Coalition, held a massive two-month radio campaign asking those with lupus and other autoimmune diseases to join its lupus registry. It distributed pamphlets titled “Are Toxic Waste Sites Affecting Your Health?” In 2003, Anderson took over as community health coordinator for the Buffalo Lupus Project. She distributed flyers that mapped out for residents the locations of the three toxic waste blocks in East Ferry and Delavan-Grider, which included detailed explanations about the connection between chemicals and autoimmune disease.

Around that time, Vena left the University at Buffalo and turned the project over to Carlos Crespo, an associate professor in the Department of Social and Preventive Medicine at the university, who had worked in minority health epidemiology both at the National Institutes of Health and at the Centers for Disease Control and Prevention. Crespo had a personal interest in studying autoimmunity. At the age of sixteen, his hair had begun to fall out in large chunks—a traumatic experience at any age and especially so for a teenage boy. Crespo was diagnosed with alopecia areata, an autoimmune disease in which, for reasons unknown, the body’s own immune system attacks the hair follicles and disrupts normal hair formation. Doctors gave him nearly fifty steroid shots directly into the scalp to try to stop the autoimmune response, but his hair didn’t grow back until he was twenty-two. At the age of thirty, it fell out again. He went with it and shaved his head. A hipster blue-jeaned professor who looks a bit like a Latino cross between Yul Brynner and Kojak, Crespo took on Vena’s cause with great interest.

The university environmental scientists involved in the project were disturbed that even by 2003—two years after the meeting at True Bethel—there were still no plans to remediate East Ferry. The Toxic Waste/Lupus Coalition approached Joseph Gardella, professor of chemistry at the University at Buffalo’s Environment and Society Institute, who is well known in western New York for taking on tough environmental causes, such as helping homeowners in Buffalo’s Hickory Woods development whose houses had been built on contaminated soil from a Superfund site. Gardella, a wry, shorts-sporting, suntanned, and bulldogish fifty-one-year-old, volunteered to use his expertise in environmental chemistry and the effects of exposure to toxins to help residents pressure the DEC to find funds to clean up East Ferry. Gardella didn’t care that the Superfund was dry, and he didn’t see any point in waiting around to find out whether East Ferry met all the statistical criteria for being an official cluster or not. As an environmental chemist he cared about the pure facts staring them in the face: a known toxic agent was contaminating the residential area and not a darn thing was being done about it. He took on the project, he says, “with a conservative approach: if a toxin is there and you know it’s bad you need to do something to remove it. I see it as my job to push walls to make that happen.”

CLEANING UP THE MESS, FINALLY

In August 2003, Gardella, along with community members and a group of chemistry, geology, and geography students, did just that. He and his team took thirty soil samples outside the East Ferry lot itself—throughout the surrounding East Ferry streets and neighborhood. They tested the samples for lead and ferried the disturbing results to the DEC. Meanwhile, Toxic Waste/Lupus Coalition community members continued to demand meetings with DEC representatives, calling for action. In 2006, relentlessly badgered by an outraged community and faced with Gardella’s lab findings, which showed that high levels of lead had migrated offsite and across East Ferry Street to the exposed soil on the easement beyond the curb, the state finally promised to take action to clean up the site. They agreed to extend the area of remediation significantly to include four adjacent contaminated lots west of 858 East Ferry Street, an area approximately four times as large as the original Superfund site.