Help Protect the Integrity of Childhood Cancer Research
The information provided in this blog post comes from a childhood cancer community toolkit. Thank you to our coalition partners for working together on this issue and for providing a wealth of information on this topic for the benefit of all advocates.
Progress in the fight against childhood cancer depends on federal research funding from the National Institutes of Health (NIH), National Cancer Institute, Department of Defense, and the National Science Foundation. The Office of Management and Budget (OMB) is proposing sweeping changes that would affect all federal discretionary grant awards. It would empower unelected political appointees - not childhood cancer experts - to determine which childhood cancer research is funded, usurping the Congressional appropriations process and threatening future breakthroughs. Allowing the executive branch to proceed with this proposed rule would have serious and far-reaching consequences children with cancer cannot afford.
We join with our coalition partners in the cancer community in urging Congress to call on OMB to withdraw this rule - and we invite you to join us in speaking up against the politicization of childhood cancer research. If OMB finalizes the rule with these harmful provisions, we urge Congress to use all available authorities to prevent its implementation before it drives research, innovation, and investment overseas.
August Recess: An Opportunity Engage Your Members of Congress
While we strongly encourage everyone to send a quick message to your Members of Congress on this issue, for those of you willing to take your advocacy one step further, the August Congressional recess provides one of the best opportunities to meet directly with your Member of Congress or district staff while they are home in their state or district. These meetings help put a face to the issue and demonstrate how proposed changes to medical research affect patients, families, caregivers, and communities.
Requesting a Meeting
Contact your Member's district office today to request a meeting during the August recess. If the Member is unavailable, ask to meet with the District Director or another member of the district staff. Mention that you’re a constituent, why childhood cancer is an issue you are passionate about, and that you want to discuss OMB changes to federal grant awards. Include your availability during the August recess. Please note that the House is scheduled to be in recess until August 31st, and the Senate is scheduled to be in session through early August, and then in recess until September 14.
Preparing for the Meeting
Review the campaign talking points included in this toolkit.
Become familiar with your Member's background and committee assignments.
Decide who will lead the discussion if attending as a group.
Prepare a brief personal story that illustrates why continued medical research matters.
Suggested Meeting Agenda
Introductions: Thank the Member or staff for their time. Briefly introduce yourself, your organization, and your connection to childhood cancer research.
Share Your Story: Explain why childhood cancer research matters to you, your family, your community, or the patients you serve. Personal stories are often the most memorable part of a meeting.
Ask your Member of Congress to:
Protect America's leadership in medical research by urging the Administration to withdraw the proposed rule on Uniform Guidance from the Office of Management and Budget.
Ensure America remains the world's leader in biomedical innovation rather than allowing research and investment to move overseas.
Urge the White House to withdraw the proposal before it takes effect.
Continue supporting strong federal investment in childhood cancer research through the FY27 appropriations process.
Protect scientific peer review by ensuring research decisions remain in the hands of scientific experts, not political appointees.
Ask whether the Member would be willing to support these requests and if there are any next steps you or your organization can help with.
Close the Meeting: Thank them for their time, and offer yourself as a future resource. Ask for the best point of contact for follow-up.
After the Meeting (Within one week): Send a thank-you email that includes any additional information requested. Send us a note at info@childrenscause.org letting us know who you met with and include any notable feedback, questions, or commitments from the office. This information helps us track which offices have been engaged on this issue by childhood cancer advocates and enables us to better coordinate with you, the Member’s office, and our coalition partners.
About the OMB Rule: A Deeper Dive into Implications
Sidelining Peer Review
OMB proposes that peer review evaluations and recommendations for discretionary grantmaking must not be binding and must be treated only as advisory. This is a drastic departure from how nearly every federal scientific agency, including the National Institutes of Health (NIH), has traditionally operated, where independent peer review by a panel of experts in the field serves as the primary measure of merit and fundability. Under the OMB proposal, political appointees are empowered to effectively ignore the advice of independent scientists and instead prioritize near-term political objectives. An unbiased review by researchers with childhood cancer expertise is essential for ensuring that limited federal dollars are directed toward the best science with the greatest potential to improve outcomes for children with cancer.
Terminating Grants Without Cause
OMB proposes to give political appointees authority to terminate any active grant mid-award if they feel that it does not serve the “national interest.” Grants may be terminated with only a brief written rationale and without any findings of noncompliance or wrongdoing. This amounts to a threat: get in line with the executive branch’s priorities or risk grant termination. For rare disease patients such as children with cancer, this could mean the closure of active clinical trials. Children experiencing a relapse rely on clinical trials, predominantly funded through federal grants, as their best treatment option. Further, a policy this extreme would also create a chilling effect for the next generation of childhood cancer researchers, steering future scientific talent to countries actively competing with the United States.
Deterring International Collaboration
OMB proposes limiting grantees' ability to collaborate with international scientific partners. In addition to fully banning collaborations with researchers in certain covered foreign countries, it requires a senior political appointee to approve primary grants to international organizations and other international collaborations to be justified by a vague “compelling needs” standard. Since no single country has sufficient numbers of patients with any one rare disease, childhood cancer researchers must take a different approach to data collection and clinical trials. Research partners in other countries help enroll patients in hard-to-complete trials for childhood cancers and contribute significant scientific research expertise. Without these international partnerships, breakthrough discoveries for children with cancer would take decades longer to achieve and be much more expensive to complete.
Prioritizing Indirect Costs Over Science
OMB’s proposal would favor grants to institutions with lower indirect cost rates, giving preference to applications with lower indirect costs. Yet a lower or higher indirect cost rate is not indicative of a better or worse application but rather reflects the costs of conducting research. This policy would steer federal research dollars toward applications that—based on the science alone—are less promising. As a result, this policy would lead to less “return on investment” for federal taxpayer investments in childhood cancer research. Protecting these high-quality investments, as has been highly successful in childhood cancer research, should remain a bipartisan priority.
Drastic Reductions in Total Projects
OMB’s proposal would disfavor NIH’s proven incremental funding approach, instead encouraging agencies to favor larger “multi-year awards” to far fewer grantees. Scrapping NIH’s proven funding model in favor of this approach would lead to one of the largest cuts to cancer research in history. America's leadership in medical research strengthens our economy, improves our national security, and ensures the next generation of treatments is developed here in the United States. NIH’s gold-standard model successfully funds competitively selected research through incremental, annual grant awards, providing the greatest opportunities for cures through US-based research. We are more likely to develop the next cancer breakthrough when we have more “shots on goal,” and this would go in the opposite direction.