Idaho Cancer Survivor Fights to Uncover Cancer Clusters: 'No Kids Should Have to Go Through What I Did'

Trevor Schaefer couldn’t do anything to change the brain cancer diagnosis he received in 2002 when he was just 13 years old.

But a new national law that he fought to develop and pass may ensure others never have to endure a similar fight for life that, in Schafer’s case, occasionally found him wishing for death to alleviate the pain.

“I just had to keep pushing,” said the now 27-year old Schaefer who lives in Boise, Idaho. “I definitely had a rough experience but there are kids with much rougher diagnoses. No kids should have to go through [what I did]. They should be outside playing and learning different things, not fighting to survive. My experience motivated me to keep going and push forward and protect children in the future.”

And protect their families, too.

When Trevor was diagnosed with brain cancer in 2002, his mother Charlie Smith, 66, now of Boise, Idaho, searched for answers contacting doctors, scientists and many local and state officials. Everyone attributed the case to “bad luck.” But Smith said the high incidence of cancer in their small community made here believe it was caused by something else — a cancer cluster, though officials refused to designate it as such.

“There were five brain cancer diagnoses in nine months,” said Smith. “[Government officials] all said the same thing — ‘Your town is too small to have a cancer cluster.’ It just didn’t make sense to me.”

Shawn Raecke/The Idaho Statesman/AP

Their quest for answers ultimately resulted in President Barack Obama signing Trevor’s Law June 22, 2016. The bill, co-sponsored by Senator Barbara Boxer (D-CA) Senator Mike Crapo (R-ID), himself a two-time cancer survivor, gives authority to the appropriate federal agencies to collaborate with state and local governments, academic institutions, and the public to investigate and address potential cancer clusters throughout our country.

The work was not easy, especially because Schaefer began it while he was struggling through cancer treatments. Except for the times when he had intense medical issues, Schaefer did myriad research on cancer clusters – talking to scientists, patients, families and other stakeholders. He also spoke at many local, regional and national meetings, catching the attention of many lawmakers including Sen. Crapo in 2010.

The next year, Schaefer was invited to testify before the Senate Environment and Public Works Committee with Erin Brokovich. The testimony was a turning point that kicked off the arduous process that eventually resulted in Trevor’s Law.

Pete Marovich/MCT via Getty

Still, Schaefer said there is much work to do as he continues to collaborate with families, scientists and lawmakers to ensure compliance with the law through Trevor’s Trek Foundation he founded in 2009.He wrote about his story in the recently published book The Boy On The Lake.

“As you go through this process you pretty much realize you are on your own. We [we met] Trevor we felt much less alone,” said Lesley Pacey, Mobile, Alabama, whose daughter Sarah, now 16, was diagnosed with cancer at age 4 when the family lived in Point Clear, Alabama. “What Trevor is doing is extremely important. We must have better tracking, better access to information. Trevor is working to put an intelligent plan of action in place not hindered by political agenda and property values.”

Schaefer and Smith understand that feeling of isolation. That was especially true when government officials continually insisted Schaefer’s diagnosis was likely due to “bad luck” despite five brain cancer cases in McCall, Idaho, the small mining and milling town of approximately 1,800 residents to which they moved in 1995 from San Diego.

“It wasn’t until Trevor was diagnosed that we realized that [government agencies] did a very poor job of investigating cancer clusters,” said Smith, a tireless advocate. “I didn’t think about the environmental contamination from the mining [when we moved there]. I heard about cancers, of course, but I didn’t pay attention. Most of us don’t really pay attention to something like that until it impacts us personally.”

But once Smith and Schaefer started in 2003, a year after Trevor’s diagnosis, they didn’t stop.

And that paid off for current and future cancer patients because Trevor’s Law requires the Department of Health and Human Services to develop criteria for designating potential cancer clusters, issue updated guidelines for conducting objective, transparent investigations, and provide for better involvement of concerned community members, Sen. Boxer said in an email to PEOPLE.

Courtesy Trevor Schaefer

“When a community fears that it is facing a disease cluster, families should have access to the federal resources they need to address the problem,” wrote Sen. Boxer. “Trevor’s Law provides new tools to investigate and coordinate the federal response to help communities across the nation address cancer clusters.”

To families, the legislation is something akin to a miracle.

“It was such a blessing, dropped from the skies – prayers answered. Someone knows what we are going through. Now there is light at the end of the tunnel,” Patty Meade, 51, of Franklin, Indiana whose son Evan, 23, was diagnosed with cancer at age 16. “Maybe we will be proven wrong. But until this law was signed unless we couldn’t hire big attorneys no one could afford, we couldn’t do anything.”

Pete Marovich/MCT via Getty

Sen. Crapo believes that the legislation proves that plenty can be accomplished when individuals work together.

“This legislation demonstrates the power of one American to bring change that will benefit millions of people who could face cancer one day,” Sen. Crapo in a statement to PEOPLE. “This is the first time we as a nation will document how cancer clusters will be identified, monitored and treated in the United States. Not only have we made history, we did it by people working together from the ground up, from Idaho to Washington, D.C., and into law.”

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