Trevor’s Law

Federal legislation in 2016 to investigate suspected cancer clusters has failed to fulfill its promise

Obama, Trump, and Biden administrations stall the measure

August 8, 2022
By Pat Elder

Trevor Schaefer and his mom, Charlie Smith - Shawn Raecke / The Idaho Statesman / AP

It was January of 2011 when Senator Barbara Boxer (D-CA), Chair of the Environment and Public Works Committee, introduced legislation with Senator Mike Crapo (R-ID) to help communities determine whether there is a connection between clusters of cancer, birth defects and other diseases, and contaminants in the surrounding environment. Senator Boxer said, “When the same disease impacts a family, neighborhood, or community, people have a right to know if there is a common factor or related cause.” 

The measure languished until President Obama signed it into law in 2016.

There was one major hitch, however. The law wasn’t funded. Although this is noble legislation, the paucity of funding underlies congressional opposition to the “feel good” law.

In 2018, President Trump signed a measure to “fully fund” Trevor’s Law with one million dollars.

A million dollars to fully fund a federal
program to track cancer clusters so
thousands of children don’t get sick
and die unnecessarily? 

The American Cancer Society says about 1,000 suspected cancer clusters are reported to state health departments each year. That would mean there have likely been more than 10,000 reported cancer clusters since Senators Boxer and Crapo introduced their doomed-to-fail legislation.

Let’s see, if there are 10,000 reported cancer clusters in all fifty states and we have $1,000,000 federal dollars to divvy up, that means each ailing community with suffering and dying children has $100 to figure it out.

Congress allocated additional money for "Trevor's Law” in fiscal years 2020 and 2021, bringing the total to $4.5 million, so communities will be showered with several hundred of dollars to figure it out.

Trevor Schaefer of Boise, Idaho is the inspiration for the law that Congress passed in 2016. Trevor was diagnosed with brain cancer in 2002 at the age of 13.

See: https://trevorstrek.org/about-us/

Not long after his diagnosis, Trevor’s mom, Charlie Smith, discovered that four other children were also afflicted with brain cancer in their small town of McCall, Idaho.

The same story is being repeated in thousands of communities across the country - whether it’s oil spill dispersants in Louisiana, radiation in California, or PFAS in Minnesota. A child gets very sick and mom discovers other children nearby are similarly afflicted. Mom discovers an environmental cause of the disease. 

These mothers are dismissed when they try to seek answers from local, state and federal agencies. They are sometimes told that they are just being emotional or that they are on a witch hunt.

Trevor Schaefer explained, “We had a massive forest fire in McCall in 1994. This fire burned thousands of acres and it burned through an abandoned mine site with tons of toxic mine tailings that were never cleaned up, contaminating the surrounding area.”

Trevor’s law was designed to help diagnose cancer clusters in communities caused by environmental factors. The law mandates federal assistance to communities experiencing contamination due to environmental issues, but it has been starved of cash. 

Susan Wind and her family previously lived in Mooresville, North Carolina. In 2017, her daughter, Taylor, then 16, was diagnosed with papillary thyroid cancer, which is very uncommon in children. Wind learned her daughter wasn't the only child in her neighborhood diagnosed with the rare cancer. Susan discovered that her town had used coal ash (from the local power plant) in lieu of clean soil for structural fill projects. 45,000 tons were abandoned next to her daughter's high school.

Trevor’s Law was passed to avert these situations, but Wind says, six years after passage, "This law was set up to fail." Wind points to the lack of funding and says local governments and states are unable or unwilling to track the cancer clusters. 

Trevor says that important guidelines from the Centers for Disease Control and Prevention, (CDC) have still not been published. Without the guidelines, the law cannot be implemented. “They started that effort in 2018, so we are here four years later, and the new guidelines still are not complete and that’s important because those guidelines are a road map for state and local agencies to follow when they get a cancer cluster concern from a community,” Trevor explained.

The CDC told NBC News in late 2021 that the paltry 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 says it expects the updated guidelines to be published in 2022. 

In 2018, Vice President Kamala Harris,  a former senator from California, joined other senators in a letter to then Department of Health and Human Services Secretary Alex Azar urging prioritizing Trevor’s Law. 

Trevor’s Law is floundering because many in Congress rely on contributions from the same polluters that are responsible for many of the cancer clusters across the country. Without the millions of dollars needed to match congressional contributors like the American Chemistry Council, the National Mining Association, or the Nuclear Energy Institute, Trevor’s Law is a feel good measure and little else. A law is just words on paper until it is fully implemented.

We will bring our grievances to Washington on September 20 at the doorstep of the EPA. Please help us with a contribution and forward this to others of like mind.