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By Andrew Stanton
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What's New
The pediatric cancer community was "devastated" after a flurry of bills that would have reauthorized funding for pediatric cancer research were pulled from a spending bill this week, Nancy Goodman, the founder and executive director of the advocacy group Kids v Cancer, told Newsweek.
"I was just devastated, to be honest. The pediatric cancer community has spent 15 years to get to this point. This is the most significant bundle of pediatric cancer bills ever to be considered in Congress," she said.
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Why It Matters
Pediatric cancer research often goes underfunded, so lawmakers included several bills that would have incentivized scientists and drug companies to allocate resources to this research, Goodman said, noting that advancements in cancer research don't always benefit children. Only 4 percent of National Cancer Institute funding goes toward pediatrics, she said.
"All these advances for adults with cancer? Kids with cancer don't get them," she said in a phone interview Friday afternoon. "There's a profound inequity here. All we're asking is that if the science advances so there's better treatment for adults, give kids a crack at getting those results, too.
The funding was included in a bill to fund the government, known as a Continuing Resolution (CR), introduced by House Speaker Mike Johnson, a Louisiana Republican, earlier this week. However, that bill sparked criticism from President-elect Donald Trump and Elon Musk, whose opposition sank it. Johnson unveiled a stripped-down version of the bill on Thursday that did not include pediatric cancer research funding.
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What To Know
The funding came through several bills, including the Gabriella Miller Kids First Pediatric Research Program. Initially passed in 2014 as a 10-year program, the CR contained a bill proposed by Representative Jennifer Wexton, a Virginia Democrat, to extend it for seven years. The standalone bill passed earlier this year but has not been brought to a vote in the Senate.
Two bills on which Goodman worked would have created incentives for companies and scientists to research drugs to help children with cancer. The Creating Hope Reauthorization Act would have extended one program that has resulted in 65 new drugs for children with cancer, she said.
Meanwhile, the Give Kids a Chance Act would have encouraged scientists to combine drugs to find curative combinations that work for children, Goodman said. Another bill, the Accelerating Kids to Research Act, would allow children to cross state lines to receive better care with Medicaid.
These bills not being included in the spending package will have significant implications for children with cancer, she said.
"Tomorrow, there may be some pediatric oncologists at Texas Children's who [have] to call the family of a child in Louisiana and tell them that they can't treat that child because they can't have that child's treatment transferred from Louisiana to Texas. Even though Texas Children's is one of the leading centers. Even if the child lives very close to the hospital, just across state lines," Goodman said.
These funding bills incentivize companies to research where the market may be too small, filling in a crucial gap in coverage, Goodman said.
Their inclusion in the original bill was a victory for pediatric cancer patients, who don't have lobbyists or deep financial resources to advocate for themselves, she added.
Many of these children, even those who are "cured," may still go on to suffer health issues into adulthood, such as heart disease or cognitive impairment.
What People Are Saying
Representative Lloyd Doggett, a Texas Democrat, on CNN: "The pain and anguish on the basis of families that face a child threatened by death and disability from cancer, that was a reasonable provision we got Republicans to agree on. Some funding for community health centers. And I hope that can be included in the bill. Those are the kind of programs that some want to cut to find tax cuts for those at the top."
Senator Patty Murray, a Washington Democrat who chairs the appropriations committee, to MSNBC: "I'm ready to stay here through Christmas because we're not going to let Elon Musk run the government. Put simply, we should not let an unelected billionaire rip away research for pediatric cancer so he can get a tax cut or tear down policies that help America outcompete China because it could hurt his bottom line."
Greg Price, Trump 2024 staffer, on X: "You know that $190M of funding for pediatric cancer research that Democrats have spent the last day on their high horse about with the CR? Turns out it passed the Republican led House as a stand-alone bill last March but went nowhere in Chuck Schumer's Senate."
What Happens Next
Congress is scrambling to pass a spending bill to avoid a government shutdown by the end of the day Friday, December 20, but it's unclear whether lawmakers will be able to reach a deal. A shutdown could potentially have implications for millions of Americans, including federal workers who may be furloughed and those traveling in the days before Christmas.
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