WASHINGTON – Activists urged the government Tuesday to let people post and track cancer cases across communities, a public health effort 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 from Idaho, and the 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 in North Carolina, routinely are discovered among the patients themselves rather than medical or scientific experts. A scientific paper submitted to the panel highlighted three such sites in Florida, including Manatee’s Tallevast.

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 impacts of toxic chemicals. Trevor Schaefer, a 21-year-old cancer survivor, told the committee that in 2002 when he was 13 and found out he had brain cancer, four other people were diagnosed with the same disease in his Idaho town of 1,700.

But when his mother, Charlie Smith, took that information to the Cancer Data Registry of Idaho, he was told that McCall, Idaho, was too small to warrant a cancer cluster study.

Three Florida cases were highlighted in a report to the Senate panel by the Natural Resources Defense Council. Though Tallevast, the tiny Manatee County where residents have complained of unusual cancer rates near a former beryllium plant, wasn’t mentioned at the hearing by name, the fact it was included in the study came as encouraging news to Wanda Washington, vice president of FOCUS, a community advocacy group.

“The community didn’t bring this upon itself and it shouldn’t be left alone to deal with it,” Washington said. “All levels of government should be involved in finding a solution.” NRDC senior scientist Gina Solomon did note the incidence of more than 60 male breast cancer cases among Marine veterans and family members who used to live at Camp Lejeune, N.C. The base’s well water was contaminated for decades before toxic wells were closed in 1984.

“These disease clusters are frightening for communities and often frustrating for scientists,” said Solomon, a medical doctor. But she said known clusters can further scientific knowledge.

“These clusters may unlock some of the mysteries of chronic disease, especially birth defects and childhood cancer,” Solomon said.

Brockovich called the system for investigating and identifying disease clusters “inadequate.” Brockovich, who was played by Julia Roberts in a movie about her life, is best known for fighting for the people of Hinkley, Calif., exposed to chromium-6 in their drinking water. She pointed to a map of cancer clusters that people reported to her as a well-known environmental advocate, in part because there’s no central government collection point. ‘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.”

Mike Partain, a Tallahassee, Fla., resident who was born at Camp Lejeune, N.C., spent years combing the Internet on this own time searching for other male breast cancer patients after his own diagnosis in 2007.

He started with two men, then seven, then 20, then 40 and so on, finding more men whenever his story was published in the press. “I’m still finding people,” Partain said.

Just a few weeks ago he met a woman wearing a breast-cancer ribbon. She had a male relative who was a patient and a Marine who served at Lejeune. Partain, who didn’t testify Tuesday, supports the Boxer/Crapo legislation, but he warned that the science must be independent, without undue influence.

“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.”

Communities who aren’t high-profile cases are paying attention.

But at Tuesday’s hearing, Richard Belzer, an economist who testified at the request of the top Republican on the committee, said he was concerned about how the legislation defined clusters. Belzer, president of Regulatory Checkbook, warned against frightening communities by assuming chemical-related clusters where none exist. He said the legislation could end up politicizing science, but he also told Boxer during questioning that he would work with her on improving the legislation.

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 has advocated for people who’ve suffered health effects from living downwind of nuclear testing in Nevada in the 1950s and 1960s. Some Republicans on the committee said Tuesday they thought other federal agencies might be better suited to looking at the disease clusters than the EPA, which has been targeted recently by the GOP. 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 that they chose the EPA rather than, say, the Centers for Disease Control and Prevention, because if the causes of cancer clusters are determined to be environmental, the EPA that has the ability to address air, water and soil pollution. Other agencies can’t fix it, Boxer said, but 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. The NRDC, which surveyed the 13 states to determine the scope of complaints, backs the bill and said it hopes the hearing will draw attention to small communities across the country, including in some of the poorest pockets.

Published: March 29,2011
By: Erika Bolstad, Barbara Barrett and Lesley Clark — Herald Washington Bureau