Examining clusters of illness is crucial, Senate panel hears

— A Senate panel considering legislation to strengthen procedures for tracking disease outbreaks, similar to one that may have occurred in Northwest Arkansas a decade ago, heard Tuesday from a cancer survivor, a scientific researcher and consumer advocate Erin Brockovich.

The hearing stemmed from a bill sponsored by the committee’s chairman, Democratic Sen. Barbara Boxer of California, and Republican Sen. Mike Crapo of Idaho that’s designed to streamline and coordinate the procedures for reporting and investigating unusual clusters of cancer and other diseases.

The bill is known as “Trevor’s Law” for Trevor Schaefer of Idaho, who suffered from brain cancer as a teenager. Now 21, he testified about his experiences withcancer and his work with a foundation that focuses attention on possible environmental causes for cancer clusters.

“Senators, I was spared,” he told the panel that includes Republican John Boozman of Arkansas. “I truly believe I have been given a second chance at life to convey to you the urgency and importance of a need to address the growing dilemma of childhood cancer clusters.”

In his comments about the bipartisan bill, Boozman raised concerns about expanding the role of the Environmental Protection Agency in tracking disease data, since some disease outbreaks are caused by circumstances other than environmental factors. Other federal agencies, such as the Centers for Disease Control and Prevention or the National Institutes of Health, also play arole in monitoring and investigating such situations.

“I’m committed to helping,” Boozman told the witnesses. “But I just want to make sure that we’re doing this right.”

Brockovich - who rose to prominence for her 1990s work on water contamination and the movie bearing her name that followed - replied that there is not now a national outlet where individuals can report concerns. While there are many agencies compiling information, she said, there “isn’t one that compiles the data that are coming from the actual people and the actual sources.”

Most reporting is done through doctors’ offices, which Brockovich said helps explain why so many people contact her with their individual cases; she gets 45,000 to 60,000 visitors to her website monthly. To illustrate the point, she displayed a largemap of the United States with 534 dots pinpointing locations with people who have contacted her about unexplained diseases.

While the map is not a scientific sampling, Brockovich said, it “demonstrates we need to do a better job of listening and responding to these communities.”

One such community is Prairie Grove, a Washington County town of about 2,500 where some residents contend there has been an unusually high number of cancer cases.

In a report released Monday, the eve of the Senate hearing, the Natural Resources Defense Council cited Prairie Grove as one of 42 locations nationwide where a “disease cluster” occurred. The CDC defines a disease cluster as “an unusual aggregation, real or perceived, of health events that are grouped together in time and space and that is reported to a public health department.”

Between 1993 and 2002, several cases of childhood cancer developed in Prairie Grove, including three cases of testicular cancer in teenage boys. The Arkansas Health Department investigated, but said it had not found harmful levels of carcinogens in the area, although state officials characterized the testicular cancer cases as “troubling.”

Several residents subsequently filed lawsuits against poultry companies in the area, alleging that chicken feed developed by the poultry industry is the source of the cancer because it contains an ingredient that becomes toxic when chicken waste is applied as fertilizer on fields.

So far, none has been successful, although several lawsuits are still pending in Washington County Circuit Court. Most recently, the Arkansas Supreme Court upheld a lower court ruling against the Prairie Grove plaintiffs in an opinion issued Feb. 17.

“Although it’s really difficult to conclusively prove what caused any specific disease cluster,” National Resources Defense Council scientist Gina Solomon testified they provide “invaluable clues and hints” that can help solve medical mysteries and prevent future cases.

Boozman also noted that advances in technology and communications - such as Facebook - provide tools for helping track disease outbreaks that have broad ramifications: “This has the potential of avoiding disease in the future, and besides the human factor, that would save society a tremendous amount of money.”

Northwest Arkansas, Pages 7 on 03/30/2011

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