This analysis was prepared by Venable, LLP on behalf of AACOM.
“Cures in Crisis: What Gutting NIH Research Means for Americans with Cancer, Alzheimer's, & Other Diseases.”
March 26, 2025
SENATORS
- Tammy Baldwin (D-WI)
- Peter Welch (D-VT)
- Chuck Schumer (D-NY)
- Catherine Cortez Masto (D-NV)
- Patty Murray (D-WA)
- Angela Alsobrooks (D-MD)
- Tina Smith (D-MN)
- Jeff Merkley (D-OR)
- Chris Van Hollen (D-MD)
- Maggie Hassan (D-NH)
- Dick Durbin (D-IL)
- Sheldon Whitehouse (D-RI)
- Jacky Rosen (D-NV)
- Ed Markey (D-MA)
- Amy Klobuchar (D-MN)
- Elizabeth Warren (D-MA)
- Jeanne Shaheen (D-NH)
PANNELISTS
- Dr. Monica Bertagnolli, M.D., 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, M.D., 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
SENATORS
- Tammy Baldwin (D-WI)
- Peter Welch (D-VT)
- Chuck Schumer (D-NY)
- Catherine Cortez Masto (D-NV)
- Patty Murray (D-WA)
- Angela Alsobrooks (D-MD)
- Tina Smith (D-MN)
- Jeff Merkley (D-OR)
- Chris Van Hollen (D-MD)
- Maggie Hassan (D-NH)
- Dick Durbin (D-IL)
- Sheldon Whitehouse (D-RI)
- Jacky Rosen (D-NV)
- Ed Markey (D-MA)
- Amy Klobuchar (D-MN)
- Elizabeth Warren (D-MA)
- Jeanne Shaheen (D-NH)
PANNELISTS
- Dr. Monica Bertagnolli, M.D., 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, M.D., 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
OPENING STATEMENTS
- In her opening statement, Ranking Member on the Subcommittee on Departments of Labor, Health and Human Services, and Education, and Related Agencies Sen. Tammy Baldwin (D-WI), spoke about the various actions taken by the Trump Administration, Elon Musk, and his DOGE team. Included in her speech, Baldwin discussed the devastating effects of reducing critical biomedical research funding, specifically with respect to cancer, Alzheimer’s, and ALS. Baldwin specifically cited Republican’s efforts as nothing but an attempt to fund tax cuts for billionaires.
- Sen. Peter Welch (D-VT) opened by agreeing with Sen. Baldwin and discussing his sadness that Republicans are cutting Medicaid, scientific research, and food stamps to fund tax cuts.
- Dr. Monica Bertagnolli opened by recalling her diverse health care experience from practicing as a surgeon, serving as director of the NIH, and her experience as a cancer survivor. She then moved to discussing the downstream consequences of the grant and hiring freezes- whether they are permanent or temporary.
- Dr. Sterling Johnson spoke about his own experience with the recent delays in peer reviews and funding processes and how the growing uncertainty in the biomedical research field is undermining the future of the biomedical workforce. Johnson then cited the National Alzheimer’s Act which made it a goal for NIH to find a cure for Alzheimer’s by 2025. While there is still no cure, the NIH has made incredible strides in addressing the progressive disease- something that is only possible due to steady funding increases for NIH research.
- In her opening testimony, Dr. Whitney Wharton, like Dr. Johnson, focused on Alzheimer’s, with Wharton’s work specifically surrounding research on underrepresented groups. Wharton spoke about the cancellation of her already approved and scientifically sound research project. Wharton emphasized how important it is to take into account diverse characteristics.
- Senate Minority Leader Chuck Schumer (D-NY) gave quick remarks where he emphasized that hundreds of millions of Americans benefit from the research conducted by NIH. Schumer then expressed his frustration with the cuts from the Trump Administration. Schumer also spoke to the cuts on indirect costs, and the misunderstanding by the DOGE team and President Trump as to what indirect costs actually include.
- Dr. Larry Saltzman opened by speaking about his own cancer diagnosis and the multitude of treatments he went through and how thankful he is to the NIH for the research that allowed him to survive- this includes being able to participate in clinical trials due to his illness requiring treatments that had not yet been approved. From here, Saltzman emphasized how people like him will suffer greatly if grant funding cuts continue.
- Jessie Ybarra spoke about his experience with ALS- a disease that, for some unknown reason, disproportionally affects veterans. Ybarra explained that funding and research cuts could threaten to derail decades of progress on finding a cure for ALS and extending the life expectancy of those living with ALS. Ybarra added that apart from the individuals suffering from ALS, ALS also takes a large economic toll on the United States economy.
QUESTION AND ANSWER
- Sen. Catherine Cortez Masto (D-NV) emphasized that defending NIH grant funding was about saving lives. NIH grants and research helped provide Nevada jobs and critical cures. She also noted that grants that went to the medical schools in Nevada helped fund research on curing cancer and other dangerous diseases. Cortez Masto then asked how researchers are adapting to the changes. Wharton responded that the loss of grants has been devastating for her peers across the country and that the communication pipeline between researchers and the NIH has been severed. Wharton then read off part of her grant termination letter which stated that her research no longer fit the standards of the agency and that her research on LGBTQ individuals was not based in scientific fact.
- Sen. Patty Murray (D-WA) expressed her outrage at the actions of the Trump Administration, Elon Musk, and DOGE. Murray then cited that in the first four weeks of the Trump Administration, NIH funding to research institutions was 1 billion dollars less than the same period last year. Murray then asked Bertagnolli if it was normal for so little funding to have gone out the door at NIH and what was the impact of this lack of funding. Bertagnolli first offered a defense of the workers at NIH, that, in her experience, the people at NIH prioritized how they could help people and how they could support the next generation. She then explained that the confusion is rampant and that at this time, a third of the budget would have been doled out. As of now, NIH is far behind that. Murray then asked how these cuts would affect women. Bertagnolli responded that women had been identified as a priority under her tenure, but any efforts to address this have been stalled under President Trump. Research focused on rural communities have also faced cuts to critical research concerning them.
- Ranking Member Baldwin used her time to first ask Dr. Johnson what would happen if his Alzheimer’s research center lost it’s NIH funding. Johnson explained that not only would many members of their talented workforce be at risk of being laid off, the grants and investigators who rely on the center would also be at risk. It would dissolve the state’s ability to have a solid and coherent response to the disease. Baldwin then asked what the chaos and confusion over the past few months has meant for researchers and patients. Johnson responded that there has been confusion and that the cuts will lead to delays in critical research and trouble retaining talented staff. Johnson concluded that these tactics are short term strategies to balance a checkbook, but not to address healthcare challenges.
- Sen. Angela Alsobrooks (D-MD) began by citing the cuts to research concerning diverse communities and research universities both in and outside of Maryland. Alsobrooks then asked how the research grant cuts will affect university research settings. Wharton responded by first, reiterating her point that minority groups and members of the LGBTQ community are overrepresented when it comes to Alzheimer’s. Wharton explained that the systematic elimination of the high-risk cohorts will only serve to increase the number of patients each year. The termination will have grave consequences for patients, communities, and taxpayers. Alsobrooks then asked about the disparate impact on women when it comes to Alzheimer’s. Wharton agreed and explained that lifestyle and societal factors increase the likelihood of women getting Alzheimer’s.
- Sen. Tina Smith (D-MN) asked about the developments in the mental health research space and how losing funding during a study can affect a patient. Bertagnolli dived into what mental health research looked like at NIH by noting that it was comprehensive- meaning it also dealt with environmental facts such as where a subject lives and the community around them. Due to this, Bertagnolli explained, funding delays mean entire treatments must stop, even if the funding has not been completely stopped and is only delayed. Smith emphasized that when someone has a particularly intense mental illness, changes to their routine can be deadly.
- Sen. Jeff Merkley (D-OR) noted that research into mRNA vaccines allowed for the quick development of the COVID-19 vaccine. He then asked the panel if cuts to NIH research would have affected the speed at which this vaccine was developed. Bertagnolli responded that the development of the COVID-19 vaccine was one of the great triumphs of public health research funding and was also an example of how research across the agency can be useful in a completely different application than initially thought (the COVID-19 vaccine was developed based on HIV vaccine research). Merkley then asked about research concerning pancreatic cancer and if that research should continue. Bertagnolli responded that NIH can absolutely not stop the research they’re doing as they are only just recently making incredible discoveries. Merkley also asked about melanoma to which Bertagnolli responded that that is another disease that needs continued research and funding.
- Sen. Chris Van Hollen (D-MD) started by sharing that he learned DOGE was inside of DOGE today and sowing fear. Van Hollen then asked Wharton to talk about the next generation of medical researchers. Wharton answered that the cuts and delays are very scary for young researchers, whether or not they are directly affected. Wharton continued, adding that the cuts contribute to the “leaky pipeline problem”: young researchers who have been invested in by institutions but still decide to leave research completely.
- Sen. Maggie Hassan (D-NH) opened by citing some of the grievances shared to her by researchers in her state. Hassan then asked Bertagnolli to talk about the work of comprehensive cancer centers and the types of patient care that NIH funding supports. Bertagnolli responded that comprehensive cancer centers are crown jewels and incredibly important with their comprehensive way of addressing cancer diagnosis. Hassan then asked Saltzman what the implications are for patients (and their doctors) when clinical trials are cut off in the middle of a patient’s course of treatment. Saltzman responded that it is life or death.
- Sen. Dick Durbin (D-IL) took his time to first speak to the need for Republican support in order to address the NIH funding crisis. He reminisced about the days when both Republicans and Democrats together worked to have steady increases in NIH research funding. Durbin then asked Ybarra about ALS research. Ybarra responded that the goal in his lifetime is to make ALS livable, but the only way to do this is to continue funding the research.
- Sen. Sheldon Whitehouse (D-RI) used his time to discuss what he described as “illegal,” executive orders, and what this has looked like in Rhode Island. The cuts within his state included cuts to funding for cancer research. Whitehouse then pointed out that the Trump administration is working around court orders by not responding to inquiries from researchers on cuts and delays to research funding. Whitehouse then asked the panelists to make sure they voice what is happening to them and any continued delays to their funding from the Trump Administration, which would be in violation of court orders that called for funding to be reinstated.
- Sen. Jacky Rosen (D-NV) focused on veterans and first asked Ybarra to talk about the ALS research grants funded by NIH for veterans. Ybarra responded that he is not able to speak to those specific grants, but he did explain that the grants dedicated to adapting a person’s home for disability, no longer have staff working on those grants. Rosen then asked Johnson to speak to the impact on American veterans. Johnson responded that the Veteran’s Administration has its own R&D focused on Alzheimer’s and that now is an especially important time to continue funding their research. Rosen then moved to discussing the cancelled grants focused on improving maternal health and fetal health. Related to this, Rosen asked Bertagnolli how important it is to get data from a diverse set of people when researching maternal mortality. Bertagnolli agreed and stated that it cannot be ignored that there are health disparities and poor outcomes amongst certain populations, particularly for maternal and fetal mortality.
- Sen. Ed Markey (D-MA) opened by discussing Alzheimer’s and the continued need for funding research to find a cure for Alzheimer’s. Markey stressed the point that Alzheimer’s takes a massive economic toll on the United State’s Medicaid and Medicare programs. Markey then asked Bertagnolli how serious of a problem it would be, if young researchers walked away, and a cure for Alzheimer’s is not found. Bertagnolli responded by detailing what happened during the sequester and how that drastically reduced the number of young researchers. At NIH, they refer to researchers from that time as the “lost generation.” Markey then asked Wharton what her reaction is to this issue. Wharton gave her own experience during the sequestration and how many people in her cohort are no longer in the biomedical research field due to the lost opportunities during that time.
- Sen. Amy Klobuchar (D-MN) spoke about how the United State’s is at the cusp of many great technologies (human genomes, AI, etc.) and how the NIH cuts could stifle this research and how the cuts could cause a loss in American biomedical research leadership. Bertagnolli responded by pointing to diseases such as Alzheimer’s, ALS, and pancreatic cancer, where there are new promising directions. Bertagnolli also explained that AI is going to change medicine, but the only way it will happen the right way is if it is carefully shepherded by people who actually take care of patients. Klobuchar then asked about indirect costs and what they mean in a practical sense. Johnson explained that these dollars fund major instruments, buildings, electricity, etc. Things required to ensure safe scientific processes.
- Sen. Elizabeth Warren (D-MA) first pointed out that NIH is the largest biomedical research funder in the world. Warren then asked what the consequences of these cuts to indirect costs would be. Johnson answered that this will put into question the university’s ability to fund different projects. Warren then added that this means universities will either need to lengthen the time it takes to develop cures, or they will have to decide that certain diseases will need to be pushed aside. Warren then asked if this was a fair assessment. Bertagnolli agreed and added that universities must justify how they spent their money, it is not just given- it is carefully watched. Warren then asked Bertagnolli to explain the research NIH did on transgenic mice (something President Trump appears to have mistakenly believed are transgender mice). Bertagnolli explained that the mice are used to research certain diseases and gene mutations. Warren then asked what happens to those mice with the program funding cut. Bertagnolli responded that she is not sure, but if they are not fed and not taken care of, they will not survive. Warren then asked what happens to all of the resources dedicated to these mice. Bertagnolli responded that all the money and resources are then waste.
- Sen. Jeanne Shaheen (D-NH) first asked Johnson about his experience in New Hampshire at Dartmouth Medical, what drew him to rural New Hampshire, and what NIH grants meant to his research as a post-doctoral fellow. Johnson responded that he received an individual post-doctoral NIH grant- his first NIH grant. It allowed him to learn from the best and have a successful career. Johnson then explained that the pathway the agency is on now is not conducive to a healthy pipeline of young researchers. Shaheen then spoke about the importance of rural health and what NIH grants mean for increased access to health care in rural areas. Bertagnolli explained that people who have access to research do better, doctors with access to research are better doctors, and that rural communities make important contributions to overall health research.
- Sen. Peter Welch quickly asked Ybarra what he pays for his medicine. Ybarra responded that through the VA, he pays nothing. Welch then summarized the event and reiterated that it is of the utmost importance that institutions like NIH are funded, able to collaborate with other institutions, and able to nurture young people to eventually go into those institutions.
- Ranking Member Baldwin asked the final question of the event which was towards Saltzman. Baldwin asked, if it is true that the NIH can absorb the cuts they are enduring because private companies and advocacy groups can step in and fill the void and specifically, if the national cancer institute (NCI) funding is cut, could nonprofits and private companies step in to fill their funding gap, fund their cancer research, and replace the federal government spending on cancer research. Saltzman answered that he cannot speak to what will happen with pharmaceutical companies, but nonprofits cannot do what NIH does. The scale, scope, and sustained investment provided by NIH is unmatched. NCI funding is about 10 times that of a large single nonprofit. It is unlikely that a nonprofit could make that up.
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