Legislation to open more research and treatment opportunities to pediatric cancer patients is now signed into federal law.
It’s known as the Give Kids a Chance Act, and its provisions include continued funding for pediatric and rare disease research, increased treatment options for children facing life-threatening conditions, and strengthened FDA authority to ensure drug companies complete required pediatric studies.
“This law is called the Give Kids a Chance Act because they deserve a chance, and now they have one,” said Congressman Nick Langworthy, who joined Roswell Park officials and families touched by pediatric cancer to celebrate the law’s enactment. “If we aren't fighting to do everything in our power to protect beautiful, innocent children like Christian here from this horrible disease, then what are we doing?”
Among the families present was the Matz family. Mike Matz recalled hearing the bad news of his son’s diagnosis in 2021.
“And then about a week into it, we heard ‘well, there’s is a clinical trial that may be able to help your son.’ And that was the first piece of good news that we got,” he said. “With the Give Kids a Chance Act, that will enable more children to have good news when everything else seems to be falling apart in their lives and their family’s lives.”
His son didn’t speak, but he stood next to his father. Also speaking was Sophia Baudo, who was diagnosed two years ago with Hodgkins Lymphoma.
“I want to say that pediatric cancer isn't just cancer of an adult, it is a unique fight that requires our attention,” she said.
Advocates say it’s important to ensure studies of promising therapies that are specifically for children, in a system that’s usually geared toward adults.
“Today, it takes, on average, about six years for a cancer drug that is developed in adults to become available for children, and that's only if clinical trials are developed specifically to study its use in kids,” said Dr. Kara Kelly, chair of the pediatric oncology department at Roswell Park. “For kids with cancer, that delay can be critical and can lead to an increased risk of death or relapse from therapy.”
Passage didn’t come quickly. It took months before it was finally passed.
“This legislation faced many hurdles at times. It appeared headed for a vote, it stalled, then returned again, before ultimately passing with bipartisan support,” said Dr. Candace Johnson, president and chief executive officer of Roswell Park Comprehensive Cancer Center.
Langworthy says there’s nothing controversial about the law. The reason the Give Kids a Chance Act was held up, he explained, was because it was included in a package of other proposals which were being debated.
“If our leadership would’ve allowed it to stand alone on the floor, you'd probably get 435 votes,” he said.
