The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (No Series) (17 page)

As for whether East Ferry presents a disease cluster that will meet the stringent and statistical guidelines for determining an environmentally triggered cluster, it will be some time before the emerging data can be fully quantified, much less published. Either way, the question of whether the Buffalo lupus cluster is officially the direct result of toxicity in the area seems increasingly moot. Between 2002 and 2006, through the Buffalo Lupus Project and the Toxic Waste/Lupus Coalition’s combined efforts, the number of people discovered to have lupus and other autoimmune diseases in the community quadrupled. On Carl Street alone, where Judith Anderson had lived for several years as a young wife and mother, she found four young women who had already been diagnosed with lupus.

According to the Lupus Foundation of America, which conducted several nationwide telephone surveys, approximately 1.5 million Americans have lupus—which translates to roughly 1 in 200 people. Based on the latest census, the East Ferry area studied in the Buffalo Lupus Project has a population of 11,000. By 2006, the Buffalo Lupus Project had identified 143 individuals—110 with lupus and 33 with other autoimmune diseases—in that same East Ferry population, which translates to approximately 1 in 100 individuals suffering from lupus in the East Ferry neighborhood. Those who live in this district of Buffalo have twice the likelihood of developing lupus as individuals living elsewhere.

Although the University at Buffalo has not yet wrapped up the Buffalo Lupus Project, Carlos Crespo’s “personal bias,” he says, is that “epidemiologically, there is a lupus cluster in this area. The distribution of lupus cases in the East Ferry area is outside of the average that you would see in a similar community to this one.”

In 2005, Crespo moved on to be the director of the School of Community Health at Portland State University in Oregon. In his stead, Laurene Tumiel-Berhalter, PhD, the vice chair of research and development in the Department of Family Medicine at the University at Buffalo, has taken over the Buffalo Lupus Project. Tumiel-Berhalter agrees with Crespo that “these numbers raise eyebrows. One in one hundred Americans do not normally have lupus.” She points out that although African Americans in general have higher rates of lupus than do Caucasians—and East Ferry is largely, though not entirely, an African-American community—even so, “it still doesn’t account for this lupus cluster.” Moreover, one can never know how many patients researchers missed since limited funds did not allow them to knock on every one of those eleven thousand doors. How many patients never saw a billboard or a flyer and so never reported to the registry; how many were ill but had no idea as to what it was they were suffering from; how many had died from lupus complications before the Buffalo Lupus Project even began? And then there were no doubt others who had moved away and left no trace. The numbers were, in fact, likely to be higher than what the researchers could tabulate.

Of more importance to residents, as well as to activists like Crespo, Gardella, Grant, and Anderson, is this: by 2006 they had succeeded in presenting enough of a case—and exerting enough relentless community pressure—to force the cleanup of 858 East Ferry despite the Superfund being empty. Today, the Department of Environmental Conservation admits that the problem at East Ferry involves “more volume of material than we initially thought.” To fully clean up the area will cost not the $1.3 million originally projected in the DEC’s record of decision in 1999, but nearly six times that—$7.7 million. In late 2006, remediation commenced, and contractors began to dig up the area and truck the contaminated soil to a landfill.

Not surprisingly, the DEC remains dubious that the toxic waste about to be remediated is linked to the plethora of illness in the area. “To this day we still cannot say that there is any connection between this site and the disease of autoimmunity in this area,” says David Locey. “I think anyone working on this project has to admit that they can’t know that with any certainty.” Nevertheless, when asked if he would allow his kids to play on the East Ferry site, he pauses and says, “No, I wouldn’t let my kids play on that lot.”

Although cleanup had finally begun—after five years of fighting for it and nine years after the problem was first discovered—few feel victorious. Most feel it’s far too little too late. “I’ve raised all ten of my babies here,” says Rhonda Dixon Lee. “I just found out that now one of my daughters has lupus, too. All of these neighborhood kids have grown up, just like she did, walking up and down these blocks past all these chemicals every day, without ever knowing they were there.”

Residents like Lee ask themselves the following questions: Although the two nearby sites on Delavan and Urban have already recently undergone remediation, and 858 East Ferry is now beginning to be addressed, what about the effects these fugitive leakages have already had on the parents and children who have lived in this area all their lives? Might someone appear healthy now only to get autoimmune disease in the future as a result of their earlier exposures? Aren’t chances high that their immune systems have already been taxed by this slow, invisible, and continuous exposure to autogenic chemicals—whether they have yet seen any physical signs of disease or not?

It’s particularly troublesome to Crespo that, like so many disease clusters, this happened in a minority community that is economically depressed. Indeed, one 2004 study conducted in the city of Buffalo reports that neighborhoods with predominantly minority populations have more than thirty-two times the number of air-polluting facilities as nonminority neighborhoods. Had East Ferry been a more affluent, nonminority area this probably wouldn’t have occurred, Crespo believes. Industry in the area has certainly not been motivated to clean up its toxic waste. Cleanup and remediation are time-consuming and enormously expensive. Validation, much less help, didn’t arrive until the number of people sick and dying with lupus in the area had already reached such critical mass that the cluster could no longer be ignored. For the many years that PCBs, lead, and TCE sat smoldering on those three sites, Buffalo was a disaster just waiting to be revealed.

CLUSTERS AROUND THE GLOBE

As population explosions and urban sprawl intersect with our increasingly chemical-laden landscape, other neighborhoods face similar concerns to those in Buffalo. Elsewhere in the United States and around the world, autoimmune studies include reports of a high number of lupus patients and those with biomarkers for lupus (a higher than average prevalence of antinuclear antibodies, which indicates an increased likelihood that a person will develop lupus in the future) near toxic sites, including a waste site harboring TCE and heavy metals in Tucson, Arizona. In another case, in El Paso, Texas, a forty-two-year-old former resident with multiple sclerosis contacted the Texas Department of Health in 1994 to report an apparent cluster of MS cases among people who had spent their childhood in the Kern Place–Mission Hills area of El Paso. Fifteen adults, aged forty-two to fifty-three, who had lived in that neighborhood as children—most of whom had attended the nearby Mesita Elementary School—had multiple sclerosis. The Texas Department of Health investigated and concluded that those who attended Mesita during the same years as those in the MS cluster had double the expected rate of MS. This was, they said, a conservative estimate; numbers might actually be higher. Investigators linked the cluster to the fact that children growing up in the area were exposed to a high level of heavy metals. Mesita Elementary School was located about one mile east from what had been, during these patients’ childhood years, the American Smelting and Refining Company, which processed primarily lead, copper, cadmium, and zinc, along with emitting high levels of sulfuric acid. Many residents had, in fact, grown up referring to their neighborhood as “Smeltertown.” Further investigation found that these MS patients’ hair samples showed that they had been exposed to a number of heavy metals.

Seven other heavy-metal-based clusters of MS have been investigated and established, in addition to others linked to varied types of toxic waste. One MS cluster now under investigation is in Morrison, Illinois, and its environs. There, researchers from the Agency for Toxic Substances and Disease Registry of the Department of Health and Human Services are looking into what may be one of the highest rates of MS in the world—related, residents believe, to chemical pesticides and toxins from manufacturing and hazardous waste sites. Investigators looking into high rates of MS in Morrison are also studying four neighboring towns: Lewiston, DePue, Savanna, and Paw Paw. DePue and Savanna are both Superfund sites. A combination of chemical exposures in the five-town area includes those from pesticides, fertilizers, zinc smelting, heavy industrial manufacturing, unexploded weapons stored at a now defunct army depot, and toxic waste sites housing city sludge transported to the area from Chicago.

Likewise, a heightened incidence of lupus in a small African-American community in Georgia has been attributed to environmental pollutants from industrial sources. In a four-year study of Choctaw Native Americans in southeastern Oklahoma, researchers found a higher than average occurrence of scleroderma. Although genetics in the closely related Choctaw population was likely a contributing factor, relatives who moved away did not have as high a rate of scleroderma. Other high rates of scleroderma include those being investigated in Woodstock, in southwestern Ontario, and that of a small rural area in the province of Rome, Italy. In the south of Boston, there has been a four times higher than normal incidence of scleroderma (PBS and
Nightline
have both aired segments about the Massachusetts Department of Health’s investigation into this emergent cluster), just one of several inquiries under way in the United States today. In Anniston, Alabama, investigators funded by the Agency for Toxic Substances and Disease Registry are conducting studies to determine whether high rates of autoimmune disease in the area are linked to an industrial manufacturing site where most of the PCBs in the United States were once manufactured and dumped. Blood serum levels of PCBs have been measured in a number of local residents in excess of 100 parts per billion. The CDC considers a blood PCB level in excess of 20 parts per billion to be significantly elevated. In 2003, two lawsuits against the PCB manufacturer and its spinoff companies resulted in a close to three-quarter-million-dollar settlement that was split, after lawyers’ fees, among twenty thousand residents. Many of these residents were from socioeconomically underprivileged families who formerly sharecropped near the plant when it was dumping factory waste from PCB production. And in Libby, Montana, a town polluted by asbestos, recent studies conducted by the University of Montana’s Center for Environmental Health Sciences show that local residents are 28.6 percent more likely to have antinuclear antibodies in their blood than a control group from a nearby town without asbestos pollution.

From Buffalo to Arizona, from Boston to Oklahoma, we live in an increasingly complex sea of autogenic agents. Added to that is the chemical load that we import into our own homes through the products, foods, and home goods we buy and consume. You can green your home as best you can, eat organic, avoid dry cleaning the clothes, throw out the solvents, and buy bedding
sans
flame retardants, but can you find that hallowed ground far from the chemical-driven American industrial machine? It is difficult to locate that halcyon land where toxic waste sites, nasty landfills, drycleaner TCE spills, and PCB-laced soil don’t linger nearby—which is part of the reason why it is so hard to prove cause and effect between toxic waste and any disease cluster. So much toxic waste exists everywhere, how can we definitively compare what autoimmune-disease rates might be in a pristine area with those in a highly contaminated area when such clear-cut lines rarely exist in the cities and suburbs where we live?

To see how true this is, go to the Environmental Protection Agency’s EnviroMapper yourself and plug in your own zip code. You can search any reported spots in your neighborhood that discharge toxins into the air or water, as well as hazardous waste and Superfund sites, though you may not be thrilled with what you find. Just take a peek at one small community (zip code 37055) along Eno Road in Dickson County, Tennessee. The largely African-American community that lives on Eno Road is surrounded by garbage dumps, landfills, and three toxic waste sites. Residents were recently informed that for the last decade they’ve been drinking tap water with levels of TCE that are twenty-four times higher than the maximum level deemed safe by the Environmental Protection Agency. For ten years water laced with TCE has been leaching into the groundwater from those nearby landfills and ending up in Eno Road residents’ coffee cups and water glasses.

There are many, many other Eno Roads. In 2002, the Agency for Toxic Substances and Disease Registry (ATSDR) and its partners prepared public-health assessment documents for 122 toxic waste sites. Of those sites, 28.5 percent were found to be leaching contaminants into the community, posing a public health hazard. In another 2002 assessment, ATSDR estimated that more than 1.7 million people live within one mile of 371 sites under assessment—the majority of which are contaminated with a range of volatile organic compounds including TCE, arsenic, and other toxic chemicals.

Today, 1,200 designated Superfund sites around the country still await cleanup. At about 10 percent of these sites, toxic chemicals are known to be seeping out into communities or people are still freely entering sites and being exposed to the hazardous waste there. The Environmental Protection Agency does not release projections for what it plans to spend to remediate these 1,200 sites, when these areas will be cleaned up, or how long it will take.