The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (No Series) (13 page)

Kayla’s mother, Marion Jordan,
*
happened to be friends with Betty Jean Grant, who had shared her concern that something toxic in the area was causing young women to fall sick with autoimmune disease, lupus in particular. As Marion and Renita talked, the same terrible and terrifying suspicion washed over them. Could it—whatever
it
was—be making their daughters sick, too?

Marion and Renita started keeping track, informally, of all the people who had become sick with lupus in their own square-block area in the Delavan-Grider neighborhood. There was the young mom down the street who had just been diagnosed with lupus and who hobbled with a cane to ease the pain of her thick, swollen legs. Then there was LaShekia’s sixty-year-old adoptive grandpa who lived around the corner from her and who had already lost a leg to lupus because the disease had been caught too late. He made sure to let Renita and Marion know whenever he got wind of yet another neighbor who should be added to their lupus tally.

Then Kayla joined the list. She began to have terrible joint pain along with her other symptoms. At first, given her vision problems, doctors diagnosed her with MS. They did a brain biopsy and found, however, that Kayla had central-nervous-system vasculitis, an autoimmune disease of the blood vessels of the brain. Then, after more testing, they added the diagnosis of lupus.

The majority of those struck with lupus were young women of childbearing years. If they lived in East Ferry they tended to be poor, while those in Delavan-Grider, LaShekia’s neighborhood, tended to be mildly-making-it middle class. All of them were African American.

For neighbors in the small urban communities of East Ferry and Delavan-Grider, terms like “lupus” and “scleroderma” were on the verge of becoming household words. In these two neighborhoods it was beginning to seem almost a natural course of events to be diagnosed with lupus or rheumatoid arthritis or type 1 diabetes by the time you were twenty or thirty years old. Still, other than Grant, few ventured questions. When locals did get an uneasy feeling about how many were falling sick with autoimmune diseases on their block or street they usually shared their worries with one another over the fence or on the front porch or after church. No one was officially counting heads, keeping charts; no one was connecting the dots.

By Christmas of 1995, LaShekia still did not have a diagnosis. Roswell oncologists had performed lung, lymph node, bronchial, and bone-marrow biopsies on LaShekia Chatman and had come up empty-handed. They asked Alan Baer, a well-known local rheumatologist, to consult in her case, and gave the Chatmans a referral. Before the Chatmans could call Baer’s office to request an appointment, Alan Baer phoned Renita to say that he had heard of LaShekia’s struggle and was hoping that he might be able to help her. Would they like to come in and see him? It was extraordinary for a doctor to reach out into this economically sidelined community. The Chatmans were awed and gratified. They had already seen six physicians during LaShekia’s three-year downward spiral. Not one had been able to shed light on why LaShekia seemed to be silently slipping away.

The first time Alan Baer met his new patient, he knew nothing of the other patients with lupus in the area. But he did know that many of LaShekia’s symptoms—hair falling out, night sweats, excessive weight loss, fatigue, photosensitivity, and severe pain in every joint and muscle—suggested lupus. LaShekia already had one autoimmune disease, which made her statistically much more likely to have others. Lupus was a better than good hunch. Alan Baer tested LaShekia for antinuclear antibodies, and her ANA and other lupus biomarker tests proved positive. There was no time to lose. Baer immediately put LaShekia on a trial course of the steroid prednisone.

Within weeks of starting prednisone, LaShekia’s pain and inflammation began to diminish. Her appetite started to return. Dr. Baer added the drug Imuran, an immunosuppressant developed to help prevent the bodies of transplant patients from rejecting their new organs, to help tamp down her overenthusiastic immune system.

In subsequent visits, it became clear to Baer that LaShekia was also developing the features of scleroderma. A progressive autoimmune disease in which the immune cells attack the connective tissue in the body—the collagen within human skin and tissue as well as the elastin in the ligaments that connect bones—scleroderma can leave damaging scar tissue in the skin as well as organs. Baer diagnosed LaShekia with what is sometimes called “overlap syndrome,” a connective-tissue disease with features of both lupus and scleroderma. Between 1995 and 2003, Dr. Baer would go on to see LaShekia through several additional diagnoses of Raynaud’s disease, a condition that causes the fingers and/or toes to turn white as a result of diminished blood supply after even slight changes in temperature; and vasculitis, an inflammation of the blood vessels. By 2003, scar tissue from scleroderma had developed in all eight of LaShekia’s fingers, making it difficult to move them, and had immobilized both sides of her mouth so that she couldn’t open it very wide. Taking a bite out of an apple, for instance, had become a joy of the past.

THE PERSONAL BECOMES POLITICAL

During the same years that LaShekia was bearing the burden of additional autoimmune diagnoses, Grant was growing increasingly disturbed by how many people were growing ill in her area. She realized that if she wanted to help the community and get to the bottom of this troubling issue, she first needed to have more clout. For that, she would need to be on the inside track—meaning inside city hall.

In 1997 Betty Jean Grant ran for a seat on the city council but lost the election. She lived not far from the East Ferry neighborhood in an area known as the University District, so called because it was home to the University at Buffalo. Because of her long hours at the store she rarely spent much time on her home turf, however, and wasn’t known in the wider University District community nearly as well as she was in East Ferry. Still, her loss just made her more determined to gear up and run again.

In November 1999, Betty Jean Grant made her second bid for election to the city council, and this time she won. On January 1, 2000, she was sworn in as city councilwoman representing the University District of Buffalo, New York. She began to juggle her work on the city council with running Grant’s Variety Shop, where she continued to hear far too many stories of residents who were far too sick.

Shortly after Grant was elected, a neighborhood resident named Rhonda Dixon Lee, who had once rented a house from Grant at 851 East Ferry Street and who later lived on Moselle Street—yes, that Moselle Street—came into the store. Lee, a former nursing student, ran a nearby day-care center. Many of the young women whose babies she took care of were single teens who often ran into hard times. Lee regularly took foster kids into her home and was well known for the indefatigable vigor with which she, as she terms it figuratively, “beat up on teen moms so they would get their lives together and take care of their kids.” Often, she succeeded. But once in a while there would be a mom who couldn’t overcome her drug habit, and Lee would adopt that baby into her own family. Lee’s family eventually expanded to eight boys and two girls.

One day, she went into Grant’s Variety Shop to pick up a few staples. She was moving with difficulty and clearly in pain. Grant asked if she was okay and mentioned to her that everyone in the area seemed to be getting sick. A lot of them had lupus. Lee stopped in her slow-moving tracks. Lupus? She had lived in the area all her life and had been diagnosed with lupus in 1990. Lee’s father had lupus, and her best friend had recently died from lupus. Lee had been taking numerous medications to help control her lupus for the past ten years, and despite her illness she had managed to keep giving, helping out young teens, fostering needy children. Until, one day in 2000, Rhonda became a bit like Shel Silverstein’s
The Giving Tree,
with almost nothing left to give away. That was the year she was diagnosed with breast cancer for the second time on top of having lupus, and her indefatigable vigor began to wane.

Grant and Lee couldn’t stop talking that day in the store. They were both health professionals trained in nursing. They couldn’t fathom it: why were so many in their neighborhood sick with a relatively rare autoimmune disease? Grant shared with Lee her suspicion that one of the causes might be some kind of contamination that was silently and invisibly percolating in the area. It was just a hunch, yes, but it was a hunch that had only intensified over the past fourteen years.

As it would turn out, after waiting a decade and a half for a single clue as to whether or not she was right, practically overnight synchronicity would step in and answers would begin to materialize.

THE STRANGE HISTORY OF 858 EAST FERRY STREET

Three months into working at city hall, Grant was going through a stack of papers to prepare for the next city council meeting when she came across a startling memo from the Buffalo Environmental Management Commission, or BEMC. Attached to the memo was a record of decision, also known as an ROD, detailing plans to address a highly toxic waste site situated on the east side of Buffalo. The memo, dated April 27, 2000, was sent from the BEMC to the city’s common council. It noted that the New York State Department of Environmental Conservation, or DEC, had designated a nearly three-and-a-half-acre undeveloped property situated at 858 East Ferry Street—smack in the center of the East Ferry neighborhood—as a class-two toxic waste site due to the high concentration of polychlorinated biphenyls (PCBs) and lead found there. A class-two designation meant that the site, according to the DEC, posed “a significant threat to the public health or environment” and that “action was required” to remediate the site. The odd thing about it was that the investigation that had found the property to be highly hazardous had taken place three years earlier—yet this memo was just now coming to the city council.

Grant was both upset and baffled. She knew that property well. The lot was a deceptively lush piece of land two blocks from her store. No one in the community really knew who owned 858 East Ferry Street or why it had sat unused for as long as anyone could remember. Everyone referred to the property simply by its street address, 858 East Ferry. Neighborhood children played hide and seek among the weeds, bushes, and trees on the empty lot, and people frequently dug in the dirt to uncover the unusual antique bottles that could be found there. Some neighbors who lived in the public housing project nestled behind 858 East Ferry tended a pumpkin patch there. Grant also owned a rental house at 851 East Ferry, directly across the street—about nine yards—from the lot. Rhonda Dixon Lee had lived in that house for six years between 1982 and 1988.

Grant read and reread the memo and the document. She was dismayed by the details of what she learned. In 1996, an environmental restoration program known as the Clean Water/Clean Air Bond Act had provided the state of New York with money to clean up its municipalities’ brownfields, or vacant properties that might be contaminated. The purpose was to see whether such brownfields—if they were indeed contaminated—could be cleaned up enough to prove to be prime development lots. In 1997 the city of Buffalo, which was hoping to develop such brownfields within the city to further economic expansion, had asked the New York State Department of Environmental Conservation to investigate the site. The lot claimed a strange history. Although the property had never housed any type of building, a Michael Heyman Company had operated a zinc and lead smelting and refining facility on the adjacent lot for sixty-one years, between 1917 and 1978. The factory had routinely transported highly contaminated waste and dumped it next door at 858 East Ferry. The factory itself had since been demolished. Today, a used car lot, TNT Auto, stood in its place.

In 1997 the DEC took soil and water samples from the site, at the city’s request, to see what the status of the lot might be. If it was contaminated, the goal would be to clean it up enough to make it attractive to commercial developers. Under state regulations, a brownfield has to fit a specific definition to be considered a hazardous waste site. First, a toxic agent found on location has to fall on a predetermined list of chemicals or be a by-product of industrial processes known to produce toxic waste and/or the material must meet a chemical test characteristic of hazardous waste. Soil and groundwater testing at 858 East Ferry quickly revealed that the property more than met the criteria for a hazardous waste site, on many levels. PCBs were found in both soil and groundwater in a high-enough concentration to qualify by state definition as a hazardous waste site. But that was the lesser menace. A heavy concentration of lead ash intermingled with the soil sat several inches thick across the 3.32-acre site. The lead existed at a shockingly high concentration. The majority of soil samples showed lead levels ranging from 19,900 to 46,700 parts per million—far exceeding the Environmental Protection Agency’s safety level of 400 parts per million in areas where children play, or 1,200 parts per million in other areas of a property. The site at 858 East Ferry exceeded New York State’s criteria for a hazardous waste site nearly forty times over.

In March 1999 the Division of Environmental Remediation of the DEC issued a record of decision, or ROD—the document that Grant now held in her hands—which outlined plans to remove soil from the site by truck and dump it elsewhere, at a cost of $1.3 million. Although the city had asked for the investigation to take place, the remediation, the document read, would now be “carried out under the State Superfund Act.” The city owned the land, but once the state had placed the 858 East Ferry site on the state Superfund cleanup list, remediation became the state’s responsibility overnight.