By Bill Thomas | July 1st
Federal funding for pediatric cancer grant research has never been in as precarious a position as it is right now.
Over the last few months, we’ve seen provisions cut from federal spending bills, the contested institution of a new indirect costs cap for National Institute of Health (NIH) grants, and even the outright termination of funding for the Pediatric Brain Tumor Consortium.
Individually, any one of these events would be a major cause for concern for those in the childhood cancer community. Together, they signal a disturbing shift in public policy that endangers not only the future of all pediatric cancer research but also the lives of countless children and young adults affected by cancers.
Now, it seems, federal funding for childhood cancer research is under fire again. The Office of Management and Budget (OMB) recently released a 400-page document detailing a proposal to drastically overhaul the Uniform Guidance, the comprehensive set of rules and regulations that standardizes how federal grants are applied for, awarded, and managed.
The OMB’s new proposed rule would reduce the role of peer review in determining what projects gain grant funding, limit the freedom researchers have in utilizing grant funds for publishing research and present their findings at conferences, and, most troublingly, politicize scientific progress by granting political appointees greater influence over funding or defunding research, irrespective of evidence or merit.
Before the OMB’s proposed rule can move forward, the government is required by law to give the public a chance to weigh in. Now is our chance to make our voices heard. If you’re as concerned as we are about the future of pediatric cancer research, please consider submitting a public comment via the Federal Register. It’s completely free and takes just a few minutes.
What to Know Before Submitting Your Comment
Before you submit a public comment on the Federal Register website, here are some helpful tips so you can make sure your comment communicates the right message and is given the full weight and consideration it deserves.
First, here’s some basic information about the new rule you should know:
- Docket Number: OMB-2026-0034
- Proposed Effective Date: October 1, 2026 (if finalized)
- Comment Deadline: July 13, 2026 (11:59 p.m. ET)
Next, here are some of the key sections of the proposal that would negatively impact childhood cancer research:
- §200.340: This section makes it possible for active research projects to be canceled at any time. If an ongoing study no longer fits the administration’s priorities, agencies could simply terminate funding without notice and without explanation.
- §200.205: This section empowers political appointees with final say over which research projects get funded. All grants would need to be approved by a political appointee, with scientific peer reviewers being demoted to a purely “advisory” role.
- §200.333: This section eliminates small pilot grants by creating a more complex grant format that most smaller labs, patient registries, and nonprofit biobanks don’t have the accounting infrastructure to handle.
- §200.461: This section makes publishing research findings harder to pay for. The costs of publishing in scientific journals would no longer be covered by grant funding unless a specific contract requires it or the grant-awarding agency approves each instance on an individual case-by-case basis.
- §200.454: This section would make it harder for researchers to access the most up-to-date scientific literature. Subscriptions to the journals that researchers read to stay current in their field would no longer be paid for with grant funds without prior government approval.
- §200.432: This section would prevent researchers from attending scientific conferences without advance government permission. Researchers could only use grant funds to attend a conference if that specific conference was approved and written into their grant at the very start. This would effectively prevent researchers from attending any pertinent conferences organized or announced after the grant is written.
Finally, here are some writing tips to help write a more persuasive comment:
- Don’t use a form letter or template. Write your comment in your own words. If multiple people submit identical comments, the government may disregard them.
- Refer to some of the numbered sections of the OMB’s proposed rule that we detailed above. Referencing a specific section, such as §200.205 or §200.454, helps demonstrate that you take these issues seriously and are well-informed. You don’t have to reference every section, just the ones that matter most to you. Explain why these sections of the proposal would have a negative impact on pediatric cancer research.
- Don’t exaggerate or lie to make a point. Sticking to the facts of what the new rule actually says will make your comment harder for the government to dismiss.
- Avoid using vulgar or insulting language. It’s understandable to be angry, but turning your comment into a heated attack gives the government an excuse to ignore it entirely.
- Let the government know why you care. Don’t hesitate to make it personal. Use examples from your own life experience to show why protecting pediatric cancer research is so important.
- End by making it clear what you want the government to do. Tell the OMB in straightforward, plain language not to finalize this new rule.
How to Submit a Comment: A Step-by-Step Guide
Ready to make your voice heard? Submitting a comment is quick and easy. Here’s how it works:
- Step 1: Click here to visit the Federal Register webpage for the OMB’s proposal, then press the green button that says “Submit a Formal Comment.”
- Step 2: Type or paste your comment in the comment box, or attach a document. If using the comment box, please note there is a 5,000-character limit.
- Step 3: Remember that any comment you submit will be public! Refrain from including your home address, phone number, or other sensitive private data. Providing your full name and specific details about your experience can give your comment more weight, but commenting anonymously is allowed if that’s your preference.
- Step 4: Check the box that says “I read and understand the statement above.”
- Step 5: Click the green box that says “Submit Comment.”
From all of us here at Pediatric Cancer Research Foundation, thank you so much for taking the time to let the government know how important this is. There’s nothing wrong with debating funding levels or political priorities, but preserving research momentum is critical if we are to achieve our vision of a world where all children affected by cancers can overcome their disease, reach their full potential, and enjoy happy, healthy, and productive futures.