The White House Office of Management and Budget (OMB) proposed a new rule that would drastically alter the federal grantmaking process. The proposed rule would give political appointees the power to approve or deny funding to scientific projects. Below is the comment I submitted regarding this proposed rule.

To: The Office of Management and Budget (OMB), Executive Office of the President (EOP)
RE: Docket OMB-2026-0034; Federal Register Number 2026-10817
Proposed Rule: Regulation for Federal Financial Assistance

I am writing to comment on the proposed rule “Regulation for Federal Financial Assistance” issued by the White House Office of Management and Budget (OMB). I urge you to not to finalize this proposed rule.

I am submitting this comment in my personal capacity. The views expressed are my own and do not represent the official position of my organization.

I am a person who has cancer and a cancer research advocate. I share patient perspectives with researchers, academic cancer centers, government agencies, and industry. I’ve been working in this space for over a decade. I’m currently co-founder and president of The ROS1ders, a global group of people living with ROS1+ cancer (I also guide this nonprofit’s research program). I’m also co-founder and admin team member for the IASLC STARS program, which trains patient advocates in science to help them evolve into research advocates. My degrees from MIT and Caltech are in engineering. I previously worked in aerospace new business, supporting customers in both private industry and government programs.

I was diagnosed with metastatic non-small cell lung cancer (NSCLC) in May 2011. At that time, most lung cancer patients died within a year of diagnosis. I am fortunate: basic and translational cancer research created an oral cancer drug that I take daily. This drug has provided me with no evidence of cancer in my body since January 2013. This allows me to continue contributing to society, taking care of family members, paying taxes, and enjoying life.

In my role as a patient research advocate, I work with cancer researchers, review grants from a patient’s perspective, and identify patient needs that could be addressed by research. Many people who have cancer are still waiting for an effective treatment. They need research progress to accelerate, not slow down.

My successful cancer treatment would not have been possible if a pathologist a major cancer center had not become curious about a particular experimental drug and investigated whether other types of lung cancers might respond to it. His discovery led to a clinical trial, in which I participated. No one could have predicted whether the pathologist’s curiosity would lead to such dramatically positive outcomes for so many cancer patients.

Scientists use their curiosity and observations to come up with research questions, design experiments, and share their findings. That’s how progress happens. Our current system of grant reviews allows researchers to submit research proposals for funding and have them reviewed by others in the field to assess which ideas have the best chance of having an impact. This system has allowed the USA to rise to the pinnacle of international research and attract some of the best minds to our research institutions.

Scientists who understand a field are the best qualified to make decisions about the potential impact of a proposed study. When research loses funding or is not awarded funding because those who make funding decisions do not understand the potential impact of a study, patients lose treatment options. Researchers lose interest and leave the field. Research organizations lose facilities, educators, and supports necessary to train the next generation of researchers. We patients already see this happening in biomedical research (as well as other scientific fields).

A review system that evaluates grants based on political agendas rather than sound scientific design and effective methodologies will impede research and harm patients. I urge OMB not to finalize the proposed rule “Regulation for Federal Financial Assistance.”

Sincerely,
Janet Freeman-Daily