Federal legislation designed to detect and investigate suspected cancer clusters hasn’t done so since it went into effect five years ago, say environmental health advocates, politicians and the law’s namesake.
And while federal health agencies have been largely consumed by the pandemic in the past 18 months, supporters of “Trevor’s Law” say the urgency has never abated in communities where potentially hazardous environmental conditions have persisted and require a comprehensive response, especially when cases of unexplained childhood cancers are involved. concerned.
Since 2016, when President Barack Obama signed the updated legislation that includes the “Trevor Act” – the reform of the Toxic Substances Control Act of 1976 – there have been no new guidelines on how to respond to potential cancer clusters and there have been no federal investigations. level like a result. The law should also make it easier for state and local officials to coordinate with the federal government, said Trevor Schaefer, an Idaho resident who inspired the law after surviving childhood brain cancer at age 13 in 2002.
“Many of these cancers could have been prevented,” Schaefer said. “How many more children have to suffer before our government follows its own law?”
The Centers for Disease Control and Prevention began updating existing guidelines regarding cancer clusters in the fall of 2018, when the Trump administration approved $1 million for the effort. In 2019, the CDC asked for public comments for two months.
Congress allocated additional funds for “Trevor’s Law” in fiscal years 2020 and 2021, bringing the total to $4.5 million. The office of Sen. Jeanne Shaheen, DN.H., a member of the Senate Credit Committee, said she is seeking funding increase for fiscal year 2022.
When asked how that money was spent on the law, the CDC said that “additional funds were used to gather more information about 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 limitations of the past year in raising funds to aid in the effort.
“Challenges include the availability of subject matter experts at the federal, state, local and community levels — many of whom have responded to the COVID-19 pandemic,” the CDC said.
Among the activities the CDC says it is doing to update the guidelines includes conducting an online survey of state and local health departments about how they respond to “unusual patterns of cancer,” and conducting focus groups with members of the community.
Schaefer said that even if the CDC is thin due to its urgent response to Covid-19, he doesn’t believe the initiatives since the law’s signing five years ago amount to the appropriated millions of dollars.
Charlie Smith, the co-founder of the Trevor’s Trek Foundation, with her son, Trevor Schaefer, and Senator Mike Crapo, R-Idaho, with the bill signed in 2016. Trevor’s Trek Foundation
This month, Susan Wind of Florida received an email to participate 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 symbolic of a frustrating and lengthy 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 like herself who have organized grassroots efforts to fund cancer cluster research in their communities because local governments are either unable or unwilling.
Wind and her family previously lived in the Mooresville suburb of Charlotte, North Carolina. In 2017, her daughter Taylor, then 16, was diagnosed with papillary thyroid cancer, which is less common in children.
Wind found that her daughter wasn’t the only person around her recently diagnosed. Its 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.
Lacking a government-funded study, Wind raised $110,000 to enlist a team of scientists to test groundwater, soil and air.
Wind has focused on the presence of coal ash, which contains heavy metals, and was used to supplement roads and commercial development projects in Mooresville from 1995 to 2001. But North Carolina health officials have not designated the area as a cancer cluster, saying more research needs to be done on the people who get cancer, when they were diagnosed, and where they’ve lived over time.
Wind said that even if there is a serious health problem within a community, she is concerned that government officials will try to minimize the term “cancer cluster” because it can scare people and affect property values.
According to the American Cancer Society, about 1,000 suspected cancer clusters are reported to state health departments each year. However, studying them is challenging, with results often inconclusive or failing to meet the appropriate criteria to meet health agency standards. People may speculate that the environment is linked to an apparent rise in cancers, but epidemiologists say it’s rare to confirm a causal relationship.
Nationally, overall cancer death rates have fallen thanks to major advances in treatments. But pockets of higher cancer rates have been reported in Houston communities; Huntersville, North Carolina; and Wilmington, Massachusetts.
“There’s no urgency,” Wind said. “If it was the child of the CDC chief, the child of the EPA chief, they would prioritize this.” Her daughter’s cancer, who was in remission in 2019, has since returned and spread to her lymph nodes and breast.
Taylor Wind with her mother, Susan. Agnes Lopez for NBC News
Kari Rhinehart, whose daughter, Emma Grace Findley, died of a rare brain tumor in 2014, has fought for research into the higher rate of childhood cancer in Johnson County, Indiana. She helped 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 caught the attention of other environmental groups, leading to the testing of homes near a former electronics factory in her community where groundwater has been contaminated.
“We shouldn’t come in and do their job for them.”
While the CDC determined in 2018 that there was no immediate evidence of a cancer cluster, a report published last spring and funded in part by If It Was Your Child found that known cancer-causing chemicals at the site could migrate further than previous tests had shown and suggests more testing needs to be done to make sure contaminants haven’t spread.
Rhinehart said it’s problematic when it’s left to individuals to raise the money for studies, as opposed to government agencies, because many people simply don’t have the resources.
“It’s literally what we pay them for as agencies and we shouldn’t come in and do their work for them,” she said.
In 2011, Sens. Barbara Boxer, D-Calif., and Mike Crapo, R-Idaho, “Trevor’s Law” in Congress. It was recognized as an example of bipartisan legislation, and its advocates over the years have included Vice President Kamala Harris, a former California senator.
Boxer, who retired in 2017, said she advises Schaefer, who co-founded the nonprofit Trevor’s Trek Foundation with his mother to raise money for environmental studies, to put pressure on local and federal governments to pass the law. to be carried out.
“My advice is that the hard part is done. The law is in effect and lives could have been saved,” Boxer said. “It’s been a long time – let’s go.”