WASHINGTON — Activists urged the government Tuesday to let people post and track cancer cases across communities, a public health effort that they say could lead to discoveries of new chemical-related cancer clusters throughout the United States as well as insights into disease management.
A doctor, a cancer survivor and high-wattage environmental advocate Erin Brockovich told a Senate panel that no federal agency effectively tracks cancers now in a way that easily allows scientists to determine the existence of cancer clusters.
The Senate Environment and Public Works Committee took testimony on legislation that's aimed at helping communities determine whether there's a link between clusters and contaminants in the environment. Clusters are occurrences of cancer in a small area or a short period of time at rates higher than statistically normal. It's difficult to link a cluster of cancers to a particular toxin or effect, however.
"You don't have to live near a Superfund site to be exposed to potentially harmful chemicals," said Sen. Frank Lautenberg, D-N.J. "They're all around us."
Committee Chairwoman Barbara Boxer, D-Calif., and Sen. Mike Crapo, R-Idaho, are co-sponsoring the legislation, which also calls for a stronger and more coordinated federal response to investigating suspected disease clusters and documenting them, led by the Environmental Protection Agency.
Crapo, the top Republican on the Superfund, Toxics and Environmental Health Subcommittee, has twice been treated successfully for prostate cancer, and he's advocated for people who've suffered health effects from living downwind of nuclear testing in Nevada in the 1950s and '60s.
"While we've heard quite a bit about them through books and movies," including Brockovich's own life story, Crapo said, "we've not had a recent detailed discussion about them here in Congress. Though we should."
Trevor Schaefer, a 21-year-old cancer survivor, told the committee that in 2002 when he was 13 and learned he had brain cancer, four other people were diagnosed with the same disease in McCall, Idaho. The resort community has just 1,700 people.
But when his mother, Charlie Smith, took that information to the Cancer Data Registry of Idaho, she was told that McCall was too small to warrant a cancer cluster study. No one should be told he's statistically insignificant, Schaefer said. And no child should have the experience he had.
"My cancer experience, I wouldn't wish that on anyone," he said. "It's a terrible experience to have to battle for your life as a child."
Brockovich called the system for investigating and identifying disease clusters inadequate. She's best known for fighting for the people of Hinkley, Calif., who were exposed to chromium-6 in their drinking water, an effort chronicled in a film starring Julia Roberts. At Tuesday's hearing, Brockovich pointed to a map of potential cancer clusters that people across the country have reported to her because she's a well-known environmental advocate and they had no one else to turn to.
"This is becoming an all-too-common occurrence," Brockovich said. "Protecting the health of our families and our children should be the top priorities for us all. There are simply too many cancers in this country and not enough answers."
An economist who testified at the request of Sen. James Inhofe of Oklahoma, the top Republican on the committee, said he was concerned about how the bill defined disease clusters. There's "no credible way" for the EPA to set scientific priorities for identifying clusters, said Richard Belzer of Regulatory Checkbook, a Virginia organization that works to improve the scientific and economic information used in public decision-making.
False positives create significant anxiety, Belzer warned, and "science is compromised when government tries to legislate science."
Some Republicans on the committee said Tuesday that they thought federal agencies other than the EPA — which the GOP has targeted recently — might be better suited to looking at the disease clusters. Republicans in the House of Representatives have moved to curtail the EPA's authority in other areas, particularly greenhouse gas emissions. Republicans in the Senate — including Crapo — also support moving in that direction.
But Boxer said they chose the EPA rather than, say, the Centers for Disease Control and Prevention because if the causes of cancer clusters were determined to be environmental, the EPA had the ability to address air, water and soil pollution.
Other agencies can't fix that, Boxer said, but the EPA has the ability to follow through. And the bill calls for multiple state, local and federal agencies to coordinate cluster investigations, she said.
"Our bill says we're going to coordinate these responses. It's high time we did it," she said.
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