WASHINGTON — The opportunity for everyday people to post and track cancer cases across communities could lead to the discoveries of new chemical-related cancer clusters throughout the United States - and to new insights into disease management, according to testimony presented Tuesday to a Senate environmental panel.
A doctor, a cancer survivor and high-wattage environmental advocate Erin Brockovich told a Senate panel that no federal agency now effectively tracks cancers in a way that easily allows scientists to determine the existence of cancer clusters.
Known clusters, such as dozens of male breast cancer cases among Marine veterans stationed at Camp Lejeune, routinely are discovered among the patients themselves rather than medical or scientific experts.
Clusters are occurrences of cancer found 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, and Tuesday, the Senate Environment and Public Works Committee took testimony on legislation that would track the potential disease consequences of toxic chemicals.
"You don't have to live near a Superfund site to be exposed to potentially harmful chemicals," said Sen. Frank Lautenberg, a New Jersey Democrat.
Committee chairwoman Sen. 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.
Two North Carolina cases were highlighted in a report to the panel by the Natural Resources Defense Council.
The report referenced a 1990 paper about the Chatham County community of Bynum, published by John Hopkins University. Scientists suspected a spike in cancer cases from 1975 to 1985. They attributed it to the fact that residents likely drank untreated water from the Haw River between 1947 and 1976.
But a doctoral dissertation the next year refuted the results and found no statistically significant link, frustrating many in the community, recalled Elaine Chiosso, the Haw River keeper, in an interview Tuesday.
She said the Washington hearing stirred hard memories formany this week, but that she hoped Bynum's example will illustrate how much communities need a federal protocol to establish more firmly whether clusters might exist.
"It should be a system where communities in trouble have a place to go to for help, and can count on getting some real scientific studies," Chiosso said.
Also mentioned was the incidence of more than 60 male breast cancer cases among Marine veterans and family members who have lived at Camp Lejeune. The base's well water was contaminated for decades before toxic wells were closed in 1984.
Mike Partain, a Tallahassee, Fla., resident who was born at Camp Lejeune, spent years combing the Internet on his own time searching for other male breast cancer patients after his own diagnosis in 2007.
He started with two men, progressed to nine, then 20, then 40, finding more men whenever his story was told in the press.
"I'm still finding people," Partain said.
Partain, who didn't testify Tuesday, supports the Boxer-Crapo legislation. But he warned that the science must be independent.
"The government has to do something, but it has to be objective," Partain said. "And that's the problem - all too often special interests find a way to get their people into the research."
N.C. communities watch
Brockovich called the system for investigating and identifying disease clusters "inadequate." Brockovich, who was played by Julia Roberts in a movie about her life, pointed to a map of cancer clusters that people reported to her because there's no central government collection point.
Communities that aren't high-profile cases are paying attention.
In Western North Carolina, for example, residents have tracked illnesses around CTS of Asheville, a now-shuttered company that used trichloroethylene in its electroplating processes. The chemical has been found in nearby well water, and residents have tracked nearby cancer cases.
U.S. Rep. Heath Shuler, a Waynesville Democrat, recently recommended that the EPA put the company on its National Priorities List, also known as Superfund sites.
At Tuesday's hearing, though, Richard Belzer, an economist and president of Regulatory Checkbook, warned against frightening communities by assuming chemical-related clusters where none exist. But he also told Boxer during questioning that he would work with her to improve the legislation.
Some Republicans on the committee said Tuesday that they thought federal agencies other than the EPA might be better suited to looking at the disease clusters. Republicans in the House have moved to curtail the EPA's authority in other areas. Republicans in the Senate - including Crapo - also support moving in that direction.
But Boxer said the EPA was the best choice because it can follow through if the causes of cancer clusters are determined to be environmental. .
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.
firstname.lastname@example.org or 202-383-0012