By James Williams, Editor

On December 21, 2024, President Joe Biden signed a bipartisan stopgap funding bill into law, narrowly averting a government shutdown. The legislation received overwhelming support in both chambers of Congress, with a 366-34 vote in the House and an 85-11 vote in the Senate. While the bill ensured continued government operations, it controversially omitted critical provisions for pediatric cancer research and treatment, leaving families and advocates deeply concerned.

Among those affected by these cuts is Devarjaye “DJ” Daniel, a young cancer warrior who has dedicated his life to raising awareness about childhood cancer. DJ, who has been battling terminal brain and spinal cancer since the age of six, has become a national symbol of strength and resilience. Despite his own health struggles, he has been sworn into more than 871 police departments across the country, earning recognition from law enforcement agencies that admire his courage. In 2023, he became the youngest-ever honorary U.S. Secret Service agent, proving that his fight extends beyond his own battle with cancer—he fights for every child like him.

The spending package originally included several key measures to support pediatric cancer patients and their families. These provisions had bipartisan support and were expected to remain in the final version of the bill. However, they were removed without public explanation. Among the provisions cut was the Accelerating Kids to Research Act, which would have made it easier for children from low-income families on Medicaid to receive specialized cancer treatment across state lines. Many children require out-of-state care to access clinical trials and specialized oncologists, and this act would have removed bureaucratic barriers. Also eliminated was the Creating Hope Reauthorization Act, a program that had previously incentivized pharmaceutical companies to develop 65 new pediatric drugs. Without its extension, there are fewer incentives for drugmakers to develop treatments specifically for childhood cancers. Another significant loss was the Give Kids a Chance Act, which would have allowed children with relapsed cancers to undergo experimental combination therapies, granting them access to potentially life-saving treatments.

Despite these cuts, one provision did survive. The Gabriella Miller Kids First Research Act 2.0 was later revised and passed as a standalone law, authorizing $12.6 million per year through 2031 for pediatric cancer research under the National Institutes of Health (NIH). While this funding is a positive step, advocates argue it is nowhere near enough to compensate for the lost provisions.

Although Congress has not disclosed exactly how much funding was removed from each program, previous allocations provide some context. The Creating Hope Act had historically provided tens of millions in incentives for pediatric drug development. The Accelerating Kids to Research Act aimed to expand Medicaid coverage for pediatric cancer care, an initiative that would have addressed a multi-billion-dollar gap in access to treatment. The Give Kids a Chance Act sought to fund hundreds of millions in pediatric cancer clinical trials, ensuring children with aggressive cancers had access to experimental but promising treatments. Pediatric cancer research already receives just 4% of total federal cancer research funding, and these cuts represent an even more significant setback for families who rely on federal support for life-saving treatment.

The removal of these pediatric cancer provisions remains largely unexplained, though potential reasons include budgetary constraints, last-minute political negotiations, or shifting legislative priorities. Some lawmakers may have seen these provisions as expendable in the broader context of the bill, while others may have assumed they could be reintroduced in future legislation. Regardless of the reasoning, the cuts have deeply impacted families, researchers, and pediatric cancer advocates who are now left fighting to restore this funding.

At the time of the vote, the Republican Party controlled the House of Representatives, holding 220 seats to the Democrats’ 215. Meanwhile, the Democratic Party controlled the Senate, holding 51 seats to the Republicans’ 49. Despite divided control, both chambers worked together on a bipartisan agreement to pass the spending bill—but at the cost of pediatric cancer funding. The bill’s journey through Congress was further influenced by political pressure from President-elect Donald Trump and billionaire Elon Musk, both of whom criticized the bill’s size and spending allocations. Their opposition led to the removal of several provisions, including those related to pediatric cancer funding, in an effort to narrow the bill’s scope and satisfy fiscal conservatives.

While the spending bill itself cut critical funding for pediatric cancer programs, the Trump administration has also taken steps that could further impact medical research funding, including areas related to pediatric cancer. In early 2025, the administration introduced a policy to cap indirect cost reimbursements for National Institutes of Health (NIH) research grants at 15%. These indirect costs cover essential expenses such as laboratory space, utilities, and administrative support, which are crucial for conducting comprehensive medical research. This proposed cap could significantly reduce the overall funding available for research institutions, potentially hindering studies on various diseases, including pediatric cancers.

The scientific community has expressed concern that such funding reductions could impede progress in developing new treatments and cures. The Association of American Medical Colleges warned that these cuts might lead to job losses among researchers and staff, slowing advancements in medical research. A federal judge has since issued a preliminary injunction blocking the implementation of this cap, citing potential harm to medical research efforts. However, the debate over whether these reductions will continue remains ongoing.

With the bill now signed into law, pediatric cancer advocates are ramping up efforts to restore funding. Organizations like the Pediatric Cancer Research Foundation continue to push for Congress to reinstate the lost funding and secure private sector investment in research. Lawmakers on both sides of the aisle are also exploring options to reintroduce the omitted provisions as standalone bills in future sessions, especially given the widespread bipartisan support these initiatives previously received.

From a government perspective, Congress faced difficult choices in crafting a funding bill that would keep the government running while managing budgetary constraints. However, for families affected by childhood cancer, these cuts feel like a devastating blow. While lawmakers negotiated the final details of the spending package, families were left wondering why crucial funding for pediatric cancer research and treatment was sacrificed in the process.

For children like DJ Daniel, every day is a fight for survival. While he continues to inspire thousands with his unbreakable spirit, his story serves as a reminder that pediatric cancer funding is about more than just numbers—it’s about lives. DJ has spent years advocating for awareness, and his journey highlights why pediatric cancer funding should never be sidelined.

As the government remains funded through March 14, 2025, the pediatric cancer community is pushing harder than ever to ensure Congress reinstates the missing funding.