For decades, progress against mesothelioma has depended on one thing above all else: science.
Every new treatment, every clinical trial, every discovery that gives patients and families more hope has been made possible through rigorous research and collaboration among scientists around the world.
Today, that progress is at risk.
The federal Office of Management and Budget (OMB) has proposed a rule that would fundamentally change how federally funded scientific research is evaluated, funded, and continued. While the proposal affects all areas of medical research, it could have especially serious consequences for rare diseases like mesothelioma.
What Would Change?
Under the proposed rule, political appointees—not independent scientific peer reviewers—could have the authority to determine which research receives federal funding.
For generations, federal research grants have been awarded through a competitive peer review process in which experts evaluate proposals based on scientific merit, innovation, and potential impact. The proposed rule would allow political leadership to override those scientific recommendations.
In addition, federally funded research projects could be terminated if they are determined to be “inconsistent with program goals or agency priorities.” This raises concerns that ongoing studies and clinical trials could be halted before completion—even after patients have enrolled and researchers have invested years of work.
Why This Matters for Mesothelioma
Mesothelioma is one of the rarest and most challenging cancers to study. Research funding is already limited, making every grant critically important.
If scientific funding decisions become vulnerable to political priorities instead of scientific merit, researchers may face greater uncertainty when pursuing innovative ideas. Long-term studies that patients rely on could become more difficult to sustain.
The proposal also includes broad restrictions on international scientific collaboration.
For common diseases, research may be conducted within a single country. For mesothelioma, that’s often impossible.
Researchers regularly collaborate across borders to:
- Enroll enough patients for meaningful clinical trials.
- Share tissue samples and data.
- Validate scientific discoveries.
- Accelerate the development of new treatments.
Without international partnerships, research on rare diseases could slow dramatically.
Patients Deserve Research Guided by Science
Mesothelioma patients cannot afford delays.
Every breakthrough has come because researchers were free to follow the evidence, wherever it led. Patients deserve confidence that research funding decisions are based on scientific excellence and the needs of patients, not changing political priorities.
The Mesothelioma Applied Research Foundation believes that scientific research should remain rigorous, independent, and focused on improving patient outcomes.
Speak Up for Mesothelioma Research
The Office of Management and Budget is currently accepting public comments on this proposed rule, and every comment matters.
The mesothelioma community has a long history of making its voice heard—from securing federal research funding to advancing policies that improve patient care. Now, we’re asking you to speak up again.
Agencies generally give greater weight to personalized comments that detail how people will be affected by the proposed rule. In your comment, describe why research, clinical trials, or international collaborations matter to you personally. Use these talking points if needed and how they affect you:
- Mesothelioma is a rare cancer that depends on stable federal research funding.
- Independent peer review is essential for ensuring grants are awarded based on scientific merit.
- Patients participating in federally funded studies should not face the risk of those studies being terminated due to changing priorities.
- International collaboration is critical because no single country has enough mesothelioma patients to answer many important research questions.
- Decisions about scientific funding should support evidence-based research that advances treatments and improves patient outcomes.
Submit your comment here: https://www.federalregister.gov/documents/2026/05/29/2026-10817/regulation-for-federal-financial-assistance
Comments must be submitted by Monday, July 13th.
Your story, your experience, and your voice can help protect the future of mesothelioma research.
Thank you for standing with patients, families, clinicians, and researchers who are working toward better treatments—and ultimately, a cure.
