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Part One: Toxin Agency Looks the Other Way

This is Part One of a two-part report. Part Two is available here.

Jarrett McElheney was four-years-old when the pain started. His joints ached. He was tired but couldn’t sleep. His fever wouldn’t go away and he lost his appetite. After three months of suffering, he was diagnosed with leukemia.

When Jarrett began chemotherapy, his mother, Jill, sat with him in the hospital and read about his disease. She spent a lot of time reading information sent to her by the Leukemia and Lymphoma Society and she learned that a petroleum byproduct called benzene was a known cause of leukemia. That set off alarm bells, because the McElheneys lived 500 feet from a petroleum tank farm, the term for a petroleum storage facility.

Jill eventually went to talk to the Agency for Toxic Substances and Disease Registry, a division of the Centers for Disease Control that investigates such public health problems. Seven years later, the agency still hasn’t finished its analysis.

Six other children living in the area were diagnosed with cancer around the time Jarrett was. The McElheneys have since moved away from their Athens, Ga. home and, over the last few years, have warned other families about living near the hazardous waste site. Since moving, Jarrett’s cancer has gone into remission and he’s now strong at age 13.

In many states, including Georgia, Pennsylvania, Texas, Louisiana and the eight Great Lakes states, citizens and scientists have accused the Agency for Toxic Substances and Disease Registry of failing to make links between public health problems and industrial sources of pollution, contrary to scientific findings.

National coverage of the toxic trailers housing New Orleans residents after Katrina and of the suppression of a study on environmental hazards in the Great Lakes has put the spotlight on the agency. Many public activists and citizen groups across the nation say these are just two examples of cases that demonstrate an agency pattern of political interference in public health data. The agency spokesperson Charles Green, however, said he is not aware of any problems regarding political interference in science at the agency.

Scientists at the agency told The Washington Independent that political appointees interfere with science that could benefit public health. The Washington Independent looked into this and found evidence of negligence and a lack of scientific approach in four ATSDR public health consultations it investigated. By suppressing health studies, downplaying or avoiding links between industry and environmental hazards and threatening agency whistleblowers’ careers, the agency may be failing to put science first in public health investigations.

The Paper Trail

In many cases, evidence shows that the agency suppressed vital public health information. Both agency officials and citizens have waved flags of possible cover-ups regarding two studies: one in the Great Lakes states and one in eastern Pennsylvania.

Last month, the nonprofit investigative journalism group, the Center for Public Integrity, obtained and published a suppressed study by the ATSDR called "Public Health Implications of Hazardous Substances in the Twenty-Six U.S. Great Lakes Areas of Concern." The 400-plus page report found that more than 9 million people living in 26 "areas of concern" have elevated health risks associated with exposure to dioxins, pesticides, lead, mercury, PCBs or six other toxins. These areas include the major metropolitan areas of Chicago, Cleveland, Detroit and Milwaukee.

In many of the Great Lakes areas studied, agency scientists found low birth weights, high infant mortality rates, high rates of premature births and high rates of death from breast cancer, colon cancer and lung cancer.

The study was scheduled for release in July 2007, but a few days before publication, the agency withdrew the report. Dr. Christopher De Rosa, director of ATSDR’s division of toxicology and environmental medicine, pushed for the study’s release. In an email to Dr. Howard Frumkin, the agency chief, De Rosa said suppressing the report had "the appearance of censorship of science and distribution of factual information regarding the health status of vulnerable communities." De Rosa was demoted for "not being a team player."

Similar events occurred in eastern Pennsylvania. Last year, the agency conducted an epidemiological study to analyze the high rates of an extremely rare form of blood cancer called polycythemia vera, or PV.

The agency released an abstract (available here) in December 2007. It found the rate of PV in three counties surrounding the Tamaqua borough at least 4.5 times higher than the national average. The national PV rate is 0.9 in 100,000, but the rate of confirmed cases in the three Pennsylvania counties is more than 4 in 100,000, in a population of 527,000. That number only represents patients registered with the National Cancer Registry, who were tested for a genetic mutation associated with PV for the study. When including data from patients who self-reported being diagnosed with PV, that would bring the rate up to roughly 15 times the national average.

The study linked the high PV rates to environmental influence. It also noted that 18 of the 38 patients confirmed to have PV lived within a 13-mile radius of the MacAdoo Associates Superfund Site for more than five years during the period of 1975 to 1979, when "large quantities of toxic chemicals were dumped directly into old mine shafts." Those chemicals included heavy metals and low levels of volatile organic compounds found to be contaminating the soil. The EPA has since financed clean-up of the site.

Top agency officials issued a statement saying the results "were based on an ATSDR analysis that was later determined to be inappropriate." They did not define what they meant by inappropriate. The statement denies any link between environmental factors and PV cases — contrary to scientific data ruling out other causes. It also says that more analysis is needed to "understand whether there is any linkage between PV cases and where patients lived in the past." That would suggest that these PV patients randomly moved to the same place by coincidence.

The agency says it retracted support of the abstract because the ATSDR authors used analysis that was later determined inadequate. "The decision was discussed amongst senior leadership of ATSDR," said spokesperson Bernadette Burden. "Not the authors."

Dr. Ronald Hoffman, a PV expert at Mount Sinai’s School of Medicine, is the lead scientist on the report. He says he’s not sure why the the agency released its statement. "I honestly don’t know why they said that," Hoffman said. "They tried to indicate some problem with the data, but in reality, the cases were validated. … Using very rigorous diagnostic criteria, we found an excess of patients in those areas."

Hoffman, who has spent more than a year working on the report, says that the study’s purpose is not to determine any specific external sources linked with the illness. "It does appear that there are a lot of environmental challenges in that area, and we’re not sure what is causing [the disease]," he said. "But my opinion is that it’s something that’s real, and requires further, rigorous investigation."

Oncologist/hematologist Zev Wainberg of Santa Monica-UCLA’s Medical Center and Orthopaedic Hospital told The Washington Independent in a January interview that high rates of PV in such a small population would suggest an environmental cause.

The authors of the PV study are now getting ready to submit their work to scientific journals for review, despite criticism by the agency. The abstract was presented to the American Hematology Society in December 2007 and it was published in its journal, Blood.

This is the first piece in a two-part series. Part Two is available here.

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