Senate Forum Highlights Dire Harm of NIH Cuts in Cancer Research

Abstract

In response to growing threats on federal funding for the National Institutes of Health (NIH), Sen. Tammy Baldwin (D-WI) and Sen. Peter Welch (D-VT) held a Senate forum on Capitol Hill with speakers, including researchers and patients. The speakers included surgical oncologist Monica Bertagnolli, MD, former Director of the NIH, former Director of the National Cancer Institute (NCI), and a cancer survivor. She stressed the dire consequences of grant freezes, disruptions in funding, staffing cuts, administrative upheaval, confusion, and a chilling effect on young investigators just beginning their scientific careers. “We are here today to sound the alarm,” Baldwin said. “This isn't efficiency; this is cruelty.” She said that “cures for Alzheimer's disease and cancer are not waste, or fraud, or abuse,” and she noted that “biomedical research can't just be turned on and off on a whim. We have heard heartbreaking stories from patients in clinical trials.” Welch noted, “It's an upside-down set of priorities; the cruelty speaks for itself. It's a lack of confidence in our nation. This is an erosion of our spirit.” Senate Minority Leader Chuck Schumer (D-NY) called cuts for NIH research “just appalling. We are going to fight this tooth and nail. The public is on our side; we must win this fight. People's lives are at stake.” The American Association for Cancer Research (AACR), which worked with Senate organizers on the forum, has reported and is fighting the freezing of new NIH grants and blockages of already approved funding; proposed the capping of indirect costs at 15 percent; canceled NIH advisory council meetings, halting final approval of peer-reviewed grants; the ordering of massive layoffs and the imposition of a hiring freeze at the NIH; and continued termination of active NIH grants despite federal court orders. The AACR is urging Americans to contact their members of Congress and tell them to reject any funding cuts to the NIH and NCI, address the instability caused by recent administrative disruptions, and preserve the progress of scientific research by ensuring that early-career scientists have the stable funding necessary to drive the next wave of medical research breakthroughs. “This is a critical time for our nation...the confusion is rampant,” Bertagnolli said. As a cancer survivor, she noted that she would not be here today without the research funded by the NIH over the past 5 decades. She termed NIH research “a great investment for the American people.” She cited the harm caused by “more than 300 grants terminated and about $1.5 billion in funding delays and barriers that are preventing the NIH's role of ensuring that funding is delivered to outstanding researchers across the nation.” Bertagnolli mentioned the case of a young researcher who trained for 16 years and could not get a job because of hiring freezes. She said this is not an isolated story and the nation is being deprived of the promising work of young investigators. Bertagnolli added there was not a day she was at the NIH that people employed there did not ask how they could make sure they were doing the most cutting-edge research. She noted that NIH research funding is the foundation for the work on which most of the new drugs that reach clinical practice are based. Scientific researchers built bridges that have allowed patients to outpace cancer, including Larry Saltzman, MD, a survivor of chronic lymphocytic leukemia diagnosed in 2010, a retired physician, and former Executive Research Director at the Leukemia & Lymphoma Society. He has been on many clinical trials and received many treatments, including CAR T-cell therapy. “Time is everything,” he said. “I am living proof of what the NIH can do. We must speak up, stand up for science,” and protect the future of medical research. Whitney Wharton, PhD, Associate Professor at Emory University and an Alzheimer's disease researcher, noted she has had two NIH grants terminated recently. She said they have been “devastating” for her research team and the patients participating in clinical trials. Wharton stressed the importance of engendering trust in people who enroll in clinical trials and who willingly donate their time and—in many cases—samples from their bodies. “It takes a long time to become a scientist,” said Wharton, and the current concerns about the stability of a scientific career may cause some young scientists to leave research altogether. Sterling Johnson, PhD, Professor of Medicine and Associate Director of the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin-Madison, agreed. He noted that Alzheimer's disease appears years, if not decades, before the onset of symptoms, and medical research has led to the development of prescription drugs to slow the progression of the disease. He said that 6.9 million Americans have Alzheimer's disease, a number projected to double by 2050 without scientific research advances. Johnson said that, just at a time when young investigators are urgently needed, growing uncertainty is discouraging early-career scientists from entering the biomedical field. “That is stopping progress,” he said. Jessy Ybarra, a veteran living with amyotrophic lateral sclerosis (ALS) and a board member of the ALS Association, noted that veterans are twice as likely to develop ALS and research is urgently needed to make ALS “a livable disease” until a cure can be found. He played a recording from his 10-year-old son at the Senate forum in which the son pleaded for support for medical research, noting, “I am not ready to say goodbye to my best friend, my dad.” Sen. Elizabeth Warren (D-MA) stated that the NIH is the largest biomedical research institution in the world and investing in it pays off financially, as well as medically. “We cannot afford to lose a generation of scientific breakthroughs and a generation of research scientists,” she stressed. Sen. Edward Markey (D-MA) agreed. “The NIH is really the national institutes of hope,” he said. “I'm going to fight for all those young researchers.” Sen. Dick Durbin (D-IL), Democratic minority whip and longtime senator from Illinois, stressed the urgent need for a bipartisan effort to support medical research, noting that what is lacking now is “support from the other side of the aisle.” He said he remembers a time in the past when the NIH received a strong increase in congressional funding due to cooperative bipartisan support. Sen. Catherine Cortez Masto (D-NV) agreed with Durbin on the need for strong bipartisan support of NIH research. “This is about saving lives,” she said. “It is not a red state or blue state issue. It touches so many of us; that's what this is all about.” Sen. Angela Alsobrooks (D-MD) noted that the NIH is in her state's backyard and “an attack on the NIH is, in fact, an attack on the state of Maryland.” She noted she is a member of the “sandwich generation” who is raising a 19-year-old daughter and caring for a mother who has Alzheimer's disease. For women caregivers like her, she said that breakthroughs from medical research are becoming increasingly important. The AACR has vowed to continue the fight to preserve the NIH as the cornerstone of biomedical research. “The administration's ongoing disruptions of and restrictions on the NIH's ability to work in partnership with the broader scientific community are jeopardizing progress and delaying innovations and treatments that are pivotal to improving patient outcomes and saving lives,” the AACR stated. “The stakes could not be higher. The decisions made today will determine whether we accelerate the fight against cancer or allow critical momentum to be lost.” The AACR's work on the Senate forum is “part of our long-standing commitment to ensuring that policymakers understand what is at stake and that they hear directly from those on the front lines.” Peggy Eastman is a contributing writer.