“Trevor’s Law” was passed to track cancer clusters. It didn’t happen.

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Federal legislation intended to help track and investigate suspected cancer clusters has also not worked since it took effect five years ago, according to environmental health advocates, politicians and the namesake of the law.

And while federal health agencies have been largely consumed over the past 18 months by the pandemic, proponents of “Trevor’s Law“say the emergency has never abated in communities where potentially dangerous environmental conditions have persisted and require a comprehensive response, particularly where cases of unexplained childhood cancer 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 federal investigation into it. result. The law is also supposed to facilitate the coordination of state and local authorities with the federal government, said Trevor Schaefer, an Idaho native who inspired the law after surviving childhood brain cancer in 2002 at the age of 13 years.

“A lot of these cancers could have been prevented,” Schaefer said. “How many more children must suffer before our government enforces its own law? “

The Centers for Disease Control and Prevention has started to update existing guidelines regarding cancer clusters in the fall of 2018, when the Trump administration approved $ 1 million towards the effort. In 2019, the CDC solicited public comment for two months.

Congress has allocated additional funds to “Trevor’s Law” in fiscal year 2020 and 2021, bringing the total to $ 4.5 million. The office of Senator Jeanne Shaheen, DN.H., a member of the Senate Appropriations Committee, said she was seeking an increase in funding for fiscal year 2022.

When asked how this money was spent on the law, the CDC said that “additional funds were used to gather more information on how best to update the guidelines and develop tools and resources that public health agencies can use when conducting surveys. “

The agency added that it expects the updated guidelines to be released in 2022. The “CDC”cancer cluster guidelinesThe page also recognizes the constraints of the past year in recruiting resources to help with the effort.

“The 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,” according to the CDC.

Some of the activities the CDC says is doing to update the guidelines include administering an online survey to state and local health departments on how they are responding to “unusual cancer patterns” and holding an online survey. focus groups with community members.

Schaefer said even though the CDC is stretched due to the urgent response to Covid-19, he doesn’t think the initiatives since the law was signed five years ago represent the appropriate millions of dollars.

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

This month, Susan Wind from Florida received an email to participate in a 90-minute focus group sponsored by the CDC and an agency of 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 to investigate cancer clusters.

“This law was put in place to fail,” Wind said.

Instead, she thinks money should be made available to help people like her who have organized grassroots efforts to fund cancer cluster surveys in their communities because local governments can’t or can’t. do not want.

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

Wind learned that her daughter wasn’t the only person in her neighborhood who was recently diagnosed. His 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 papillary cancer cases of thyroid from 2012 to 2016.

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

The wind has focused on the presence of coal ash, which contains heavy metals and was used to fill roads and commercial development projects in Mooresville from 1995 to 2001. More research is needed on people with the disease. cancer, when they were diagnosed and where they lived over time.

Wind said that even when there was a serious health problem in a community, she feared government officials would try to play down the term “cancer cluster” as 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 difficult, with results often inconclusive or not meeting the right criteria to meet agency standards. People can speculate that the environment is linked to an apparent increase in cancers, but epidemiologists say it’s rare to confirm a cause-and-effect relationship.

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

“There is no rush,” Wind said. “If it was the child of the CDC chief, the child of the affected EPA chief, then they would prioritize that.” Her daughter’s cancer, which was in remission in 2019, has since come back and spread to her lymph nodes and chest.

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

Kari Rhinehart, whose daughter Emma Grace Findley died in 2014 from a rare brain tumor, has fought for inquiries 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 reluctant to do: connect the dots between the dozens of cases since 2008.

His actions caught the attention of other environmental groups, leading to testing of homes near a former electronics manufacturing site in his community where the groundwater is contaminated.

“We shouldn’t have to come 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 carcinogenic chemicals at the site could migrate further than previous testing had shown and suggests that further testing should be done to ensure contaminants did not spread.

Rhinehart said it was problematic to leave it to individuals to fundraise for studies, as opposed to government agencies, as many people simply cannot afford it.

“This is literally what we pay them as agencies for and we shouldn’t have to come and do their work for them,” she said.

In 2011, Senators Barbara Boxer, D-Calif., And Mike Crapo, R-Idaho, introduced “Trevor’s Law” in Congress. It was chosen as an example of bipartite legislation, and its defenders over the years included Vice President Kamala Harris, a former senator from California.

Boxer, who retired in 2017, said she was advising Schaefer, who co-founded the non-profit Trevor’s Trek Foundation with her mother to raise money for environmental studies, to lobby governments local and federal to properly promulgate the law.

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


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