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'Trevor's Law' was passed to track cancer clusters. It hasn't happened.

“How many more children have to suffer before our government follows their own law?” asked the law's namesake, Trevor Schaefer.
Trevor Schaefer, who inspired "Trevor's Law," with his mother, Charlie Smith, in 2010.
Trevor Schaefer, who inspired "Trevor's Law," with his mother, Charlie Smith, in 2010.Shawn Raecke / The Idaho Statesman via AP file

Federal legislation meant to help track and investigate suspected cancer clusters has not done either since it went into effect five years ago, environmental health advocates, politicians and the law's namesake say.

And while federal health agencies have been largely consumed over the past 18 months by the pandemic, supporters of "Trevor's Law" say the urgency never receded in communities where potentially hazardous environmental conditions have lingered and require a comprehensive response, particularly when cases of unexplained childhood cancers are involved.

Since 2016, when President Barack Obama signed the updated legislation that "Trevor's Law" falls under — reforming the Toxic Substances Control Act of 1976 — there have been no new guidelines on how to respond to possible cancer clusters and no investigations on the federal level as a result. The law is also supposed to make it easier for state and local officials to coordinate with the federal government, said Trevor Schaefer, an Idaho native who inspired the law after he survived childhood brain cancer in 2002 at age 13.

"Many of these cancers could have been prevented," Schaefer said. "How many more children have to suffer before our government follows their own law?"

The Centers for Disease Control and Prevention began work to update existing guidelines concerning cancer clusters in the fall of 2018, when the Trump administration approved $1 million toward the effort. In 2019, the CDC solicited public comments over two months.

Congress allocated additional money for "Trevor's Law” in fiscal years 2020 and 2021, bringing the total to $4.5 million. The office of Sen. Jeanne Shaheen, D-N.H., a member of the Senate Appropriations Committee, said she is seeking a funding increase for fiscal year 2022.

When asked about how that money has been spent toward the law, the CDC said "additional funds were used to gather more information on how best to update the guidelines and develop tools and resources for public health agencies to use when conducting investigations."

The agency added that it expects the updated guidelines to be published in 2022. The CDC's "cancer cluster guidelines" page also acknowledges the constraints of the past year in recruiting resources to help in the effort.

"Challenges include the availability of subject matter experts at the federal, state, local, and community levels — many of whom have been responding to the COVID-19 pandemic," according to the CDC.

Among the activities that the CDC says it is doing to update the guidelines include administering an online survey to state and local health departments about how they respond to "unusual patterns of cancer," and conducting focus groups with community members.

Schaefer said that even if the CDC is stretched thin because of the pressing response to Covid-19, he doesn't believe the initiatives since the law was signed five years ago amount to the millions of dollars appropriated.

Charlie Smith, the co-founder of the Trevor's Trek Foundation, with her son, Trevor Schaefer, and Sen. Mike Crapo, R-Idaho, with the signed bill in 2016.
Charlie Smith, the co-founder of the Trevor's Trek Foundation, with her son, Trevor Schaefer, and Sen. Mike Crapo, R-Idaho, with the signed bill in 2016. Trevor's Trek Foundation

This month, Susan Wind of Florida received an email to take part in a 90-minute focus group sponsored by the CDC and an agency within the federal Department of Health and Human Services. But when she went to fill out the online registration form, the link didn't work.

She said her experience is emblematic of a frustrating and protracted process for investigating cancer clusters.

"This law was set up to fail," Wind said.

Instead, she believes the money should be made available to help people such as herself who have organized grassroots efforts to fund cancer cluster investigations in their communities because local governments are unable or unwilling.

Wind and her family previously lived in the Charlotte, North Carolina, suburb of Mooresville. In 2017, her daughter, Taylor, then 16, was diagnosed with papillary thyroid cancer, which is less common in children.

Wind learned her daughter wasn't the only person in her neighborhood recently diagnosed. Her search for answers led the Iredell County Health Department to confirm that two ZIP codes in the Mooresville area, including one where the Wind family lived, had more than double the expected number of observed cases of papillary thyroid cancer from 2012 to 2016.

In the absence of a government-funded study, Wind raised $110,000 to enlist a team of scientists to test the groundwater, soil and air.

Wind has focused on the presence of coal ash, which contains heavy metals and was used to fill in roads and commercial development projects in Mooresville from 1995 to 2001. But health officials in North Carolina have not designated the area as a cancer cluster, saying there still needs to be more research into the people getting cancer, when they were diagnosed and where they have lived over time.

Wind said that even when there is a serious health problem within a community, she's worried that government officials may try to minimize the term "cancer cluster" because it can scare people and affect property values.

About 1,000 suspected cancer clusters are reported to state health departments each year, according to the American Cancer Society. However, studying them is challenging, with results often inconclusive or failing to meet the right criteria to satisfy health agencies’ standards. People may speculate the environment is linked to an apparent rise in cancers, but epidemiologists say it’s rare to confirm a causal relationship.

Nationwide, overall cancer death rates have fallen thanks to major advances in treatments. But pockets of higher rates of cancer have been reported in communities in Houston; Huntersville, North Carolina; and Wilmington, Massachusetts.

"There's no urgency," Wind said. "If it was the CDC head's kid, the EPA head's kid affected, then they would prioritize this." Her daughter's cancer, which was in remission in 2019, has since returned and spread to her lymph nodes and chest.

Taylor Wind with her mother, Susan. Agnes Lopez for NBC News

Kari Rhinehart, whose daughter, Emma Grace Findley, died in 2014 from a rare brain tumor, has fought for investigations into the higher rate of childhood cancers in Johnson County, Indiana. She helped to form a group, If It Was Your Child, to do something many officials were hesitant to do: connect the dots between the dozens of cases since 2008.

Her actions attracted attention from other environmental groups, which led to the testing of homes near a former electronics manufacturing site in her community where the groundwater is contaminated.

"We should not have to come in and do their jobs for them."

While the CDC determined in 2018 that there was no immediate evidence of a cancer cluster, a report published last spring and paid in part by If It Was Your Child found that known cancer-causing chemicals at the site could migrate farther than prior testing had shown and suggests more testing should be done to ensure contaminants haven't spread.

Rhinehart said it's problematic when it's left to private citizens to raise the cash for studies as opposed to government agencies because many people simply don't have the means.

"It's literally what we pay them to do as agencies and we should not have to come in and do their jobs for them," she said.

In 2011, Sens. Barbara Boxer, D-Calif., and Mike Crapo, R-Idaho, introduced "Trevor's Law" in Congress. It was upheld as an example of bipartisan legislation, and its advocates over the years have included Vice President Kamala Harris, a former senator from California.

Boxer, who retired in 2017, said she's been advising Schaefer, who co-founded the nonprofit organization Trevor's Trek Foundation with his mother to raise money for environmental studies, to put pressure on local and federal governments to properly enact the law.

"My advice is that the hard part is done. The law is in place, and there could have been lives saved," Boxer said. "It's been a long time — let's go."