Another Piece of the Puzzle
Last week, we asked for quotes from patients and patient advocacy groups in response to the Office of Management and Budget’s (OMB) proposed rule on federal grantmaking. Among the responses we’ve had so far is this powerful quote from the ALS Association:
For people living with ALS, time is not an abstract concept, it is a rapidly diminishing resource. Every delay in research, every barrier to scientific discovery, and every disruption to the federal research ecosystem has real human consequences. The proposed OMB rule risks undermining the rigorous, expert-driven processes that have made the United States the global leader in biomedical innovation.
Congressional staff have requested these quotes from patient organizations concerned with OMB’s proposal. If you have a quote to share with us, whether from submitted comments to OMB or newly written, please email Lara Larson.
On the Hill: We anticipate that the House will be back in session next week and will take up the bipartisan Senate-passed continuing resolution (CR), which would extend government funding through Dec. 11 and block implementation of OMB’s proposed changes to federal grantmaking through the same date. As of this writing, the odds are strong that the House will pass and the president will sign this version of the CR. (What is a CR exactly? See this terrific refresher on the role CRs play from the Bipartisan Policy Center.) More on OMB’s proposed rule later in the letter.
Russ’s Corner
Over the course of these Weekly Letters, we have covered many developments regarding the capacity, stability, and competitiveness of the U.S. science and technology ecosystem, particularly the ability to drive medical progress.
We’ve discussed disruptions to federal grants, proposed budget cuts, and the growing uncertainty facing the research workforce. As I recently said in an interview with Axios, that uncertainty is contributing to fewer graduate students and early-career scientists pursuing the cures and treatments that patients need. We’re also seeing continued public concern about America retaining its position as a global leader in science and technology.
There are many ways we can assess the health of our nation’s research ecosystem, including the strength of our STEM pipeline and our record of discoveries and breakthroughs. But after a year and a half of fervent conversation about federal research funding, it’s time to take a step back and look at the full picture of investment in medical R&D.
Future progress depends on sustained, reliable federal investment. It also depends on the significant R&D investments made by industry and the contributions of academic, independent research, and philanthropic institutions. Together, these investments support research conducted across the country, generating knowledge, creating jobs and businesses, and developing breakthroughs that save and improve lives.
At this year’s National Health Research Forum, Research!America will release a new report, “U.S. Investments in Medical and Health Research and Development 2021-2025.” This report provides an in-depth look at trends in public sector, private sector, and philanthropic investment in biomedical R&D and health research conducted in the U.S.
At the Forum, the report’s findings will provide a jumping-off point as we bring together leaders and stakeholders from multiple sectors to discuss the future of medical research. This will be an incredibly important and timely event. I hope you will join us on Wednesday, Sept. 23, at the Grand Hyatt Washington in Washington, D.C.
Russ
Special Alliance Member-only Meeting: We’ll discuss OMB’s proposed rule, pending Requests For Information, and Fiscal Year 2027 appropriations during our next alliance member-only meeting. We are thrilled to be joined by Laura Friedel, senior policy advisor with Alston & Bird, and most recently clerk of the Senate Appropriations Committee’s Labor-HHS Subcommittee. This off-the-record Zoom meeting will take place on Tuesday, Sept. 1, from 1:30 p.m. to 2:30 p.m. ET. Watch your inbox for a registration link if you are with an alliance member organization.
Department of Education Would Adopt OMB Changes: The Department of Education has proposed a rule that would adopt key elements of OMB’s still-pending proposed rule, including broader authority to terminate grants and new merit-based hiring requirements for grantees. We encourage advocates to submit comments opposing the department’s move to adopt these provisions before OMB has even completed its rulemaking, particularly after nearly 500,000 comments were submitted to OMB. Comments are due Sept. 23. Feldesman’s analysis provides additional background on the connection between the two proposals.
Join Research!America: If you haven’t already, join our multi-sector alliance! The membership process is straightforward, the benefits are compelling, and your participation informs and intensifies our community’s influence on and off Capitol Hill. Email Associate Director of Membership and Development Operations Donald Cook for more information.
A Unifying Legacy of Giving: We want to acknowledge the passing of Dolly Parton. Beyond her legendary music career and beloved Imagination Library, Parton left a meaningful mark on public health including a 2020 gift to Vanderbilt University Medical Center that helped fund early-stage work contributing to the Moderna COVID-19 vaccine. She also provided support for a women’s health center in her home county of Sevier County, Tenn., and the Knoxville children’s hospital now named in her honor. She will be dearly missed.