Kimberly Smith believed she was "in good hands" when she rented an East Baltimore rowhouse nearly 20 years ago that was part of a Kennedy Krieger Institute study of lead paint remediation techniques.
Kennedy Krieger takes care of children, Smith thought at the time. One of her children had suffered lead poisoning when the family had lived elsewhere, she recalled in a recent interview, and she was pregnant then with her fourth child, Cecil.
"I was told it was a great opportunity — it was lead-safe," Smith said. "It was one less thing I had to worry about."
But something went wrong while she and her children lived at 1110 Rutland Ave., according to a lawsuit filed in Baltimore Circuit Court. Though the house had undergone repairs intended to reduce lead-paint hazards, the suit alleges that her infant son was being poisoned from the time she brought him home from the hospital until she moved out of the house more than three years later. By then, Smith says, her son was showing signs of behavior problems,which she now sees as a symptom of brain damage that would plague him throughout his life.
The suit brought by Smith's son, Cecil Harris, is one of several pending in Baltimore Circuit Court that accuse the East Baltimore pediatric hospital of exposing young children to harmful levels of lead in the 1990s while studying ways to treat the toxic paint used in nearly every city home at the time. The lawsuit seeks unspecified monetary damages.
The issue has dogged the internationally recognized institute since a blistering 2001 ruling by the Maryland Court of Appeals said researchers knowingly exposed children to lead without warning them of the risks. The judges, in allowingother children'scases to go forward, likened the study to the notorious Tuskegee experiment in Alabama, in which federal researchers beginning in the 1930s withheld treatment from hundreds of black men with syphilis for 40 years so they could document how the disease progressed.
To some — defenders and detractors of the Kennedy Krieger study alike — the litigation is a tragic outcome for an institution dedicated to helping children, and to a pair of crusading researchers otherwise credited with sincere and significant contributions to the lengthy struggle to end childhood lead poisoning.
Other cases have wound through the courts inthe years since the Kennedy Krieger study was halted.In 2009, two siblings won a $2.5 million judgment against City Homes Inc., the nonprofit landlord that enrolled participants in the study;Kennedy Krieger was dismissed as a defendant before trial. That judgment was overturned on a technicality, and the case later was settled for undisclosed terms.
At least four other cases have been settled. A Kennedy Krieger spokesman declined to comment about the settlements but said there have been no judgments against the hospital related to the study. Legal claims by at least three other study participants were dismissed, records show.
Harris' suit alleges that Kennedy Krieger designed a study "knowing that it would use children, including the plaintiff, as human lead barometers, all the while failing to disclose the grave danger and risks that the study visited on such children, perpetuating the myth that such research was both safe and ethical."
Now that the children are becoming adults, they still haven't been "told the real truth," said William "Billy" Murphy Jr., senior partner in the law firm that brought several of the suits, including Harris' and a class-action complaint on behalf of all children involved in the study.
Over the years, Kennedy Krieger and others have defended the study, which was funded by the U.S. Environmental Protection Agency and the Department of Housing and Urban Development.
Bryan Stark, an assistant vice president for Kennedy Krieger, declined to comment directly on the Harris lawsuit but said the study was a sincere and productive effort to find solutions to a public-health epidemic gripping Baltimore and cities across the nation at the time.
"We had, unfortunately, one of the highest lead-poisoning levels in the country," Stark said. He said the institute "had a hospital full of kids who were poisoned" back then, and was trying to figure out ways to reduce their main exposure — from deteriorating lead paint in older, often rundown rental housing.
"We were working with other organizations and community groups," he said, "trying to provide whatever we could to advocate for better housing for kids and families."
The Lead-Based Paint Abatement and Repair and Maintenance Study was part of a nationwide effort to find cheaper lead cleanup methods amid a public health crisis that was harming thousands of Baltimore children. In 1998, 3,900 city children had harmful levels of lead in their blood out of 5,100 statewide.
The Baltimore study tested three levels of repairs on 107 houses to see which methods of containing or removing lead paint would keep the toxic substance out of children's bodies. Homes were subject to fix-ups costing either $1,650, $3,000 or $7,000 — substantially less than a full-scale abatement of lead paint, which could cost upward of $20,000 at the time.
Levels of lead dust were monitored in those homes and in two other groups of homes — some that had previously had lead-paint hazards fully abated, and some that were built after 1979 and contained no lead paint.
According to a report filed with the EPA in 1996, the study regularly tested more than 100 children in those homes to determine whether the varying repairs had any impact on lead levels in their blood.
In each household, researchers screened participants to get very young children who were healthy and wouldn't move from the study housing.
Youngsters 6 months to 5 years old are particularly vulnerable to lead exposure and its effects on developing brains and nervous systems. Infants and toddlers pick up lead dust from crawling and sitting on floors, and ingest it by putting thumbs and hands in their mouths. Tiny amounts of lead dust can cause drops in IQ and other consequences, research has shown.
Smith moved her family into a rowhouse that she describes as "not particularly big or nice." She recalls a worn, painted wood floor and bug infestations. It had been given a $7,000 abatement.
A two-page consent form Smith signed said lead-based paint in her home "was removed or encapsulated." The only mention of risk came under the heading of "benefits," where the form noted that families would be contacted with test results "and steps that you could take to reduce any risks of exposure." It also offered $15 and free transportation every time blood was sampled.
Harris' lawsuit alleges that researchers knew that children were accumulating lead in their blood or maintained high levels of lead, but because they wanted two years' worth of data, did not recommend moving the children from the homes to avoid further exposure.
According to the lawsuit, Harris had a low but measurable level of lead in his blood when tested nearly a year after he was born in July 1993. By the time he was 21/2, his lead level had increased fourfold to more than 20 micrograms per deciliter, the suit says.
The U.S. Centers for Disease Control and Prevention in 1991 had declared 10 micrograms per deciliter to be the lead poisoning threshold, at which children begin to experience lasting injuries to their brains and nervous systems. Since then, the agency has found that no level of exposure to lead is safe.
"It was still my assumption everything was OK," said Smith, 44, a regional cafeteria manager in the Baltimore public schools. "I didn't notice learning problems until the first grade."
By then, Smith had gotten a job and moved her family in with her mother to save money and get help caring for the children. She said her son struggled through elementary and middle school, failed the 10th grade and left school without completing the 11th grade.
"He was very disruptive," she said. "He couldn't stay in his seat. There was frustration he couldn't do the work."
After he dropped out, Harris began to get into trouble — "minor stuff," Smith called it, including marijuana possession. She tried to encourage him to go back to school, but he got into more serious trouble and was convicted in September of robbery and assault. He is serving an 18-month term at the Eastern Correctional Institute in Somerset County.
As her son's legal problems mounted, Smith got a letter from the Yost legal group suggesting that she call because she'd once lived in a lead-contaminated home during a study. As Smith looked at the Rutland Avenue address, "it clicked," she said. The lawsuit was filed in 2012 and a trial could begin as early as this fall.
"Cecil deserves peace of mind," Smith said. "Justice needs to be served."
'A terrible compromise'
In response to earlier lawsuits, Kennedy Krieger officials have said that the majority of youngsters in the study saw lead levels in their blood go down.
A 1997 report to the EPA says that "all or most" of the dust samples taken in study homes a year after repairs found lead levels at or below what they'd been before any work was done. The report notes that lead levels were not reduced as much in the homes that got the least costly repairs and that the gap in lead dust levels grew over time.
David Jacobs is a staunch defender of the study and its researchers. He was the director of lead hazard control for the U.S. Department of Housing and Urban Development at the time and worked with other federal agencies to fund and review the Baltimore studyand others on the issue.
Jacobs, now research director for the National Center for Healthy Housing, said the federal government funded studies in the 1980s and 1990s in Boston, Cincinnati and other cities that involved monitoring lead levels in hundreds of children living in homes that had undergone varying abatement work.
Jacobs noted that all the houses had undergone some remediation. "What would have been unethical, and what was not done in any of these studies, is [to] put kids in houses where there were known lead hazards and do nothing about them," he said.
At the time, he said, it wasn't clear that more aggressive treatment of lead paint was necessarily better. An earlier Kennedy Krieger study had found that full abatement methods once required in Baltimore actually exposed children to more lead dust.
Jacobs said studies like the one that is the target of litigation helped him push through reforms at HUD that led to "revision of all federal housing regulations" in 1999. The government poured more money into methods that were shown to work, he said, such as replacing lead-painted windows.
The studies were launched at "a terrible time,'' recalled David Rosner, a professor at Columbia University's Mailman School of Public Health and co-author of a 2013 book examining the nation's struggle to deal with childhood lead poisoning.
Lead paint was deemed a public health crisis in the early 1990s, one that was inextricably tied to a lack of decent, affordable housing for the poor. The paint had been used in practically every home built before 1950 in Baltimore, and landlords balked at removing it, arguing that the costs often exceeded what their properties were worth. Children hospitalized for lead poisoning often had no safe place to go when released.
Gerald Markowitz, Rosner's co-author, called Mark Farfel and other researchers involved in the Kennedy Krieger study "extraordinary people who really tried to work in the community to eliminate lead poisoning at a time when there was very little institutional support, and certainly very little societal support for doing something about it."
Markowitz, a history professor at John Jay College and the graduate center of City University of New York, said, "They tried to find a less expensive [abatement] that would lessen the amount of lead that children would be exposed to. And in the end, I think that that was a terrible compromise, born of their desire to help children and born of their desire to combat this scourge that has affected millions of children over the course of the 20th century."
Farfel now works for the New York City Department of Health and Mental Hygiene, overseeing a registry of emergency providers and others exposed to potentially harmful toxic chemicals, smoke and dust in the destruction of the World Trade Center on Sept. 11, 2001. A co-defendant in some of the lawsuits against Kennedy Krieger, he did not respond to requests for comment.
Rosner faults the Johns Hopkins institutional review board — which examined and approved the Kennedy Krieger study — and other health experts familiar with it for not recognizing the inherent risk that children could still get low but harmful exposures to lead.
There is greater oversight of medical trials now than in decades past, said Susan M. Reverby, a Wellesley College historian who wrote a book about the Tuskegee study.
But she said there remains a gap between what researchers say and what study participants understand, particularly if the studies are "nontherapeutic" and don't intend to treat anyone, such as the Baltimore lead study. Risks are not always clear, and participants often trust institutions they know or are blinded by hope that they will benefit.
Researchers, she said, "are people who generally think they are doing the right thing, but what they can't see is how it's read by someone else. ... It behooves these institutions to think about how they inform families, especially when children are involved."
Harris, interviewed by phone from prison, said he was "shocked" when he heard he'd suffered lead poisoning as a child.
"When they told me how it affects you, I was thinking that's why I'm having trouble. ... I felt relief," he said.
Harris said at least some of his disruptive behavior in school stemmed from his learning difficulties. "We'd all be reading a book, everyone would take a turn reading a chapter, and I'd get put out of class so I wouldn't have to." That led to more acting up.
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Harris said he's taking a GED prep class. He's still struggling, but "trying my best" and hoping to go to a trade school.
"I don't feel so frustrated now because I understand why I was having trouble," he said.
The situation with lead poisoning is much improved, though an estimated 500,000 young children nationwidestill havelead levels high enough to warrant steps to reduce exposure, according to the federal Centers for Disease Control and Prevention. More than 2,700 were in Maryland, mostly in Baltimore, according to 2012 state figures, the most recent available.
"We've made tremendous strides, but we have also as a society failed half a million children who are overwhelmingly poor, overwhelmingly, disproportionately African-American," said Markowitz. "It's a horrible society failure."