By Matthew Marks
What’s happening
Every breakthrough in pediatric cancer treatment begins with research. But a proposed federal rule would disrupt the systems that advance that research, putting future discoveries at risk for children and families facing cancer.
This spring, the White House Office of Management and Budget proposed sweeping changes to the rules that govern federal grants and awards. The proposal would affect 42 federal grantmaking agencies, including agencies that provide essential support for pediatric cancer research, like the National Institutes of Health, the National Cancer Institute, the Department of Defense, and the National Science Foundation.
Why it matters for children with cancer
Childhood cancers are biologically distinct, meaning children often need treatments developed and tested specifically for them—not “trickle-down” treatments designed for adults. Yet because childhood cancers are rare, private investment alone is often not enough to advance research. As a result, progress depends heavily on federally funded research. This proposal would have serious consequences for children with cancer. It would:
- Undermine independent scientific peer review by allowing political appointees to override expert recommendations, potentially diverting funding away from the most promising pediatric cancer research
- Disrupt ongoing research and active clinical trials by allowing active grants to be terminated without reason, which could halt long-term studies, cause research facilities to close, and halt pediatric clinical trials that are already underway
- Delay access to new treatment options by slowing research and clinical trials, which are often the best treatment option for children whose cancer returns
- Limit international collaboration that is essential for studying rare childhood blood cancers, where researchers often need to work across borders to have large enough sample sizes or cohorts for clinical trials
In response to these proposed changes, blood cancer advocates across the country stood up. They raised their voices, met with their representatives, and sent letters urging Congress to reject these proposed changes. These efforts are making a difference. Congress has called for a delay in this proposal until at least December 11. While this delay is a good step forward, our work isn’t done yet.
What Blood Cancer United is doing
Over the last few months, Blood Cancer United has led a nationwide effort to protect pediatric cancer research. So far, we:
- Mobilized advocates to send over 3,600 letters to lawmakers, reaching more than 95% of Congress
- Helped facilitate more than 40 meetings with lawmakers during the August Congressional recess
- Submitted formal comments and joined a coalition of 57 advocacy organizations to oppose the rule
And we won’t stop there. Blood Cancer United will continue working with lawmakers, advocates, and partner organizations to ensure that Congress rejects the proposal in its entirety, so that children with cancer and their families benefit from research and lifesaving discoveries that could lead to safer, more effective treatments.
How you can help
While Congress has delayed action on the proposal, the threat is not gone. Now is the time to speak up for children with cancer and the research that gives families hope.
Sign up to become a Blood Cancer United advocate at BloodCancerUnited.org/RaiseYourVoice. As an advocate, we’ll show you how to help protect children with cancer, support their families, and move lifesaving research forward.
