Bill establishing pediatric cancer grant gives hope to families
Clint and Amber Nelson pose with a photo of their son Chandler, who died almost three years ago from a rare pediatric cancer. (Whitney Downard/Indiana Capital Chronicle)
In the nearly three years since Chandler Nelson died from a rare form of pediatric cancer, his parents haven't forgotten the promise they made to their son to keep fighting and seeking a cure.
'After a while, Riley (Children's Health) said they didn't have anything left. There was absolutely nothing. They called five different states and they all said the same thing,' said his mother, Amber Nelson. 'That day, he bawled and he looked me straight in the face and he said, 'Mommy … never stop fighting. Don't give up.'
''I will never,'' Amber Nelson recalled promising at the time. ''You know our family. We will never give up.''
Though Chandler was 20 at the time of his death, rhabdomyosarcoma is a rare type of cancer that most often occurs in children under the age of 10, according to the Mayo Clinic. Chandler's symptoms first appeared in February 2020 when he was already 18 and studying to be a chef.
Keeping their vow, Amber and Clint Nelson were part of a group of parents who appeared at the Statehouse on Wednesday who urged lawmakers to adopt House Bill 1453. Under the proposal, the Indiana Department of Health would oversee a pediatric cancer research and treatment grant funded by private donations.
Though the state isn't putting forth any funding, the Nelsons shared that having one centralized fund would better focus efforts on children like their son. Larger pools of cancer research funding tend to focus on strains that affect more people, but pediatric cancer impacts far smaller numbers.
Experts said that while the Food and Drug Administration approved a dozen new drugs annually for adult cancer treatments, just 11 have been approved for children in the last 50 years. This means that children have to rely on adult drugs for treatment, even though they might be less effective.
'Children are receiving hand-me-down drugs,' said Lewis Stancato. 'Why does this happen? Frankly, there's no money to be made in pediatric cancer drug development.'
Stancato is a vice president with the Indiana Biosciences Research Institute, focusing specifically on developing drugs to treat rare pediatric diseases.
He also said recent funding cuts at the National Institutes of Health could have a 'drastic (and) negative effect on pediatric cancer research.'
The Senate health committee unanimously approved the measure on Wednesday, which must also get the greenlight from the Senate Appropriations Committee.
The Nelsons, part of Elevate Childhood Cancer Research and Advocacy, point to a centralized fund as a way to bring several grassroots efforts together. Those dollars can then go to researchers like Stancato or universities to coordinate their work.
'We need a spot for pediatric cancer. It doesn't need to be mixed (with adult research). They have to have their own,' said Amber Nelson.
'And if they need money, then they have to be able to work with other people. So (Indiana University), Purdue (University, (the University of) Notre Dame, all of them … have to be able to work together,' added Clint Nelson.
'You've got to start somewhere,' he concluded.
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