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Federal law passed in 2016 authorizes funding for cancer cluster investigation

Federal law passed in 2016 authorizes funding for cancer cluster investigation (NIH)

Trevor’s Law was signed into law by President Obama on June 22, 2016, as part of reforms to the Toxic Substances Control Act (TSCA).

Its focus is on cancer clusters.

The initial form of the bill was introduced in 2011 when Senator Barbara Boxer (D-CA), Chairman of the Environment and Public Works Committee, introduced legislation along with Senator Mike Crapo (R-ID) to help communities investigate cancer cases to determine whether there was a connection.

Trevor Schaefer was the face behind the legislation and the person it is named for.

Schaefer survived a brain cancer diagnosis at the age of 13. He’s 27 now.

“The year I was diagnosed, the town had about five brain cancers and the town had about 1700 residents,” he said.

He reached out to ABC News 4 after reading the story of two mothers who were concerned about a recent string of rare brain cancers in Mt. Pleasant.

He said that’s exactly what the law is designed to investigate—whether there is a connection between “clusters” of cancer, birth defects and other diseases, and contaminants in the surrounding environment.

In 2011, Schaefer, along with Erin Brokovich, testified at a hearing on Disease Cluster and Environmental Health in the Environment and Public Works Committee about his illness and the need for Trevor’s Law, which was passed five years later.

He called it a “very positive step” for the United States and “mothers like the ones in Mt. Pleasant.”

“It proves that we've raised enough voices and concern, that are voices are going to be heard and that's finally starting to happen,” he said.

Trevor’s Law provides federal agencies like the Centers for Disease Control the authority and ability to investigate cancer clusters, but he said it’s crucial for state and local agencies to realize they need to ask for help.

Since the law is still new, he said it’s not utilized or recognized. He hopes that changes soon.

“We're trying to reach out and make sure these communities and concerned citizens know what we're doing and that this law is on the books,” he said. “Until then, my message is to keep fighting and to get as many community members on board as possible because the more support you have the easier it will be to get studies done.”

Trevor’s Law, part of the Frank R. Lautenberg Chemical Safety for the 21st Century Act, strengthens federal agency coordination and accountability when investigating potential clusters of disease.

It also increases assistance to areas where clusters are identified, and authorizes federal agencies to form partnerships with states and academic institutions to investigate and help address disease clusters.

Schaefer said a coordinator within the U.S. Department of Health and Human Services still needs to be named.

Meanwhile, an environmental doctor in the Charleston area wants to see more research done.

"If you're talking about an incident of 5-8 cases per 100,000, and you have 11 in one small area, I would redefine that, and I would call that a concern or something you should study," said Dr. Allan Lieberman, director of the Center for Occupational and Environmental Medicine, in response to DHEC releasing a statement that there is no date to support a cancer cluster in Mt. Pleasant. That data is only through 2014, though.

He also wants a study of the land done to see whether the Highway 41 area used to be farmland, where he said pesticide use would have been rampant and a "major concern" now.

"This is a tragic kind of situation and creates a great deal of anxiety, but there are always answers as to why this is happening, and I think we should delve into this deeper," he said.

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