What’s at Stake: Federal Research Funding

Federal support of pediatric research is imperative to making progress and improving children’s lives.

But federal policy changes are creating significant challenges for pediatric research. Grants are being delayed or outright canceled, causing uncertainty for the hospitals and researchers that do this lifesaving work.

When federal funding declines or disappears, labs close their doors, researchers lose critical support, and years of progress are undone. Ultimately, it means fewer children will have access to the treatments they need.

Pediatric research prioritizes children

Although children make up 23% of the U.S. population, only 13% of NIH’s non-administrative budget supports pediatric research.

Research focused on children takes into account their physical and mental needs as they grow — factors that are not addressed in adult-focused research.

Pediatric hospitals, where much of this research happens, have a specialized infrastructure and a workforce trained to support children. Consistent and strong federal funding allows children’s hospitals to address the unique needs of children.

Kids deserve treatments built just for them, and that can’t happen without the federal funding that makes research possible.

Pediatric research saves lives

Pediatric research doesn’t just benefit children in the short term; it improves their long-term health outcomes. Addressing childhood health issues can mitigate and prevent chronic diseases later in life.

Federal funds supported research that allows children living with sickle cell disease to have normal, pain-free childhoods. For children like Mariam and Kyle, that is priceless.

Research supported by NIH funding led to the first approved gene therapy for pediatric leukemia in the U.S., much longer lifespans for children born with cystic fibrosis, and the development of an oral vaccine for rotavirus, among many other breakthroughs.

Many pediatric diseases are rare and affect small percentages of children, so research for these diseases is not typically privately funded and relies on federal grants.

But the impact these diseases have is immense.

About 30% of children with a rare disease will die before they turn 5. Federal funding supports the research needed to save children’s lives.

Pediatric research grants are under fire

A proposed rule regulating federal grants could threaten pediatric research and the programs that recruit and train the pediatric workforce. It would substantially alter the conditions under which these funds are awarded, administered, and sustained and introduce uncertainty into programs that are vital to children’s health.

The proposed rule:

• Establishes a review process for grant awards before they are issued, with senior political appointees conducting the review instead of impartial peer reviewers.
• Supports a preference for institutions with lower negotiated indirect cost rates.
• Expands federal agency authority to terminate or suspend awards that do not advance “the national interest,” creating significant uncertainty and undermining stability of long-term programs.
• Restricts international research collaborations. Pediatric research often relies on global collaboration to study rare diseases and patient populations that can’t be found only domestically.
• Limits use of funds for costs associated with scientific conferences, professional memberships, and publications.
• Introduces administrative and compliance requirements that will substantially increase the burden on children’s hospitals, diverting limited resources away from research and patient care to administrative tasks.

Congress has temporarily paused the proposal. A continuing resolution signed into law Sept. 2 funds the federal government through Dec. 11, 2026, and prevents the Office of Management and Budget from issuing the rule during that period. But the delay is not a permanent resolution. What happens after Dec. 11 remains uncertain, reinforcing the need for continued advocacy to protect pediatric research funding and a grantmaking process grounded in scientific expertise.

A temporary delay is welcome, but children cannot afford for lifesaving research to remain at risk of disruption or abandonment. Congress and the administration must protect strong, sustained federal funding and preserve a grantmaking process rooted in scientific expertise. The treatments children need tomorrow depend on the research we choose to support today.