On March 26, U.S. Senators Tammy Baldwin (D-WI) and Peter Welch (D-VT) hosted a forum: “Cures in Crisis: What Gutting NIH Research Means for Americans with Cancer, Alzheimer’s, & Other Diseases.” A former Director of the National Institutes of Health (NIH), two Alzheimer’s disease researchers, and two patients who have benefitted from NIH clinical trials testified that deep cuts, cancelled grants, mass layoffs, and delayed funding at NIH are already impacting life-saving research and outcomes for patients battling cancer, Alzheimer’s disease, and many other serious illnesses.
In addition to Senators Baldwin and Welch, fourteen other Democratic Senators appeared during the forum. This group included several who, along with Senator Baldwin, are members of the Senate Health, Education, Labor, and Pensions (HELP) Committee, which oversees HHS agencies: Patty Murray (D-WA), Maggie Hassan (D-NH), Ed Markey (D-MA), and Angela Alsobrooks (D-MD). They invited constituents to share their experiences (e.g., loss of treatment, federal funding, and/or jobs) with their offices, lamenting that it has been particularly challenging to get reliable information about what’s been happening at NIH, despite promises of transparency from Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. at his confirmation hearing.
Speakers included:
- Dr. Monica Bertagnolli, MD, former Director of the NIH
- Dr. Sterling Johnson, PhD, University of Wisconsin-Madison Professor and Associate Director of Wisconsin Alzheimer’s Disease Research Center
- Dr. Whitney Wharton, PhD, Emory University Associate Professor and Alzheimer’s Disease researcher
- Dr. Larry Saltzman, MD, retired physician living with leukemia and former Executive Research Director for the Leukemia and Lymphoma Society
- Mr. Jessy Ybarra, veteran living with ALS and Board of Trustees member for the ALS Association
Over the course of what was referred to as a ‘shadow hearing’, speakers shared examples of interruptions to research that gives hope to Americans battling serious diseases. For example, Dr. Johnson highlighted that nearly 7 million Americans currently live with Alzheimer’s, a number that is expected to double by 2050 if we do not develop effective solutions – interruptions to Alzheimer’s research will delay progress toward successful prevention efforts and treatments, hindering our ability to cut that increase in diagnoses.
According to Senate organizers, rather than building on previous successes, the Trump administration has instead spent the last two months attacking, compromising, and gutting lifesaving research at the NIH and beyond , including:
- Proposing a 15 percent cap to facilities and administration (F&A) cost rates, which would slash billions of dollars in funding from research institutions, including colleges and universities. These funds help institutions operate facilities, pay staff, and buy equipment.
- Jeopardizing funding for Alzheimer’s research by halting funding at 14 of the 35 Alzheimer’s Disease Research Centers (ADRCs). The administration has continued to cancel NIH Advisory Council meetings, which are the final required step in the grant approval process. Without these meetings, funding decisions cannot move forward.
- Terminating grants and otherwise blocking funding for lifesaving research, despite two court orders directing the administration to end its unlawful freeze on federal grants. For example, in mid-March, NIH terminated or scaled back over 40 grants related to vaccine hesitancy and vaccine update.
- Implementing massive layoffs at HHS agencies, including at NIH, which is expected to cut between 3,400 and 5,000 positions from its workforce of 20,000.
