Lawmakers consider $1 million in funding for implementation of Trevor’s Law

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FRANKLIN, Ind.-- Cancer concerns from some families in Johnson County are getting attention in the nation’s capitol. Senator Joe Donnelly is asking lawmakers to provide $1 million for the implementation of Trevor’s Law.

Trevor’s Law was passed in 2016. It helps provide federal agencies coordinate with state and local agencies in investigating potential cancer clusters. While the state health department has not found a cancer cluster in Johnson County, families have questions about the number of pediatric cancer cases there.

“For the community of Franklin, Indiana in Johnson County, Trevor’s Law is a type of federal support they need today as they work with the state to seek answers to reports that nearly 50 children have been diagnosed with various types of cancers in the last 8 years,” Sen. Donnelly said on the Senate floor Wednesday.

He and Sen. Mike Crapo are proposing an amendment to a bill that funds federal agencies, including the Department of Health and Human Services.

“Unfortunately for these families, many of whom I’ve had the privilege and opportunity to get to know, Trevor’s Law has not yet been implemented, that’s why I’m offering a simple amendment,” Sen. Donnelly said.

If passed, it would give $1 million to HHS for the implementation of Trevor’s Law.

“I hope it will have an impact, I’m thinking it will,” Belinda Velasquez said.

Her daughter, Athena, was diagnosed with Leukemia at 11-years old. She went through treatment for nearly two and a half years. This month, she started her freshman year of high school.

“Hopefully we won't be numbers anymore we'll be people,” Athena said.

She’s not alone in her battle. The organization If It Was Your Child said it’s counted 54 pediatric cancer cases in Johnson County since 2008, with 22 of those in Franklin. It was started by the step-mom of Zane Davidson, who battled Leukemia, and mother Emma Grace Findley, who died of brain cancer at age 13.

“This amendment will provide the appropriations for us to put Trevor's Law into place and then once provided as possible clusters which is what Trevor's law redefines, then those communities, such as Johnson County or Franklin, are eligible for more grants, more funding, that kind of thing,” co-founder Stacie Davidson, Zane's step-mom, said.

However the Indiana State Department of Health said it hasn’t found evidence of a cancer cluster. It writes this on its website:

“…ISDH’s current guidelines for responding to inquiries related to suspected cancer clusters align with the 2013 guidelines from the CDC and the Council of State and Territorial Epidemiologists. These guidelines have not changed since the passage of Trevor’s Law. The ISDH will continue to monitor for new guidance or changes in resources provided by federal partners.”

“The problem is it's not a number, it's not over 22 is a cancer cluster or over 50 is a cancer cluster. It's all a comparison when you compare it to the other counties in the rest of the state. So it’s really a question of looking at that mathematically and that’s a very difficult thing to say to a parent because their child is not a statistic and I understand that,” State Health Commissioner Dr. Kristina Box said at a community listening session last month.

ISDH said the Indiana Cancer Registry shows 126 cases of pediatric cancer in Johnson County between 2001 and 2015.

Some parents in Johnson County say the number of pediatric cancer cases is not a coincidence, though.

“I want a face to the numbers that my daughter's not just a statistic the other children are not just a statistic,” Belinda Velasquez said.

ISDH has asked the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry to help in relation to cancer concerns in Franklin. CDC staff are reviewing ISDH’s report from December 2017 to determine whether it’s consistent with CDC’s 2013 guidelines.

While that investigation continues, though, Athena is focusing on looking forward.

“I don't really want to be known as the girl who had cancer, I want to be known as one of the other kids,” she said.

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