That trend \u201cwe can very, very closely tie to the enhanced investment in cancer science by the U.S. government,\u201d said Karen Knudsen, CEO of the Parker Institute for Cancer Immunotherapy and a globally recognized expert on prostate cancer.<\/p>\n
\u201cWe\u2019re winning,\u201d Knudsen said. \u201cWhy we would let up, I really don\u2019t understand.\u201d<\/p>\n
This article is based on interviews with nearly two dozen current and former NCI employees, academic researchers, scientists, and patients. KFF Health News agreed not to name some government workers because they are not authorized to speak to the news media and fear retaliation.<\/p>\n
\u201cIt\u2019s horrible. It\u2019s a crap show. It really, really is,\u201d said an NCI laboratory chief who has worked at the institute for three decades. He\u2019s lost six of the 30 people in his lab this year: four scientists, a secretary, and an administrator.<\/p>\n
\u201cIf we survive I will be somewhat surprised,\u201d he said.<\/p>\n
After a mandate by the Department of Health and Human Services and the Department of Government Efficiency to slash contract spending by more than a third, the cancer institute is cutting contracts to maintain precious biological specimens used in its research, according to three scientists. \u201cThe required contract cuts are going to be devastating,\u201d a senior scientist said.<\/p>\n
On the NCI campus in Bethesda, Maryland, scientists describe delays in getting essential supplies \u2014 \u201cliterally anything that goes into a test tube or a petri dish,\u201d a recently departed clinician said \u2014 because of staffing cuts and constant changes in policies about what they can order.<\/p>\n
Even the websites that publish new evidence on cancer treatment and diagnosis aren\u2019t being updated, because HHS fired workers who managed them. And when NCI scientists do communicate with outsiders, what they say has been severely restricted, according to documents viewed by KFF Health News. Forbidden topics include mass firings, President Donald Trump\u2019s executive orders, and \u201cDEIA\u201d \u2013 diversity, equity, inclusion, and accessibility.<\/p>\n
The turmoil at the National Institutes of Health\u2019s largest arm could haunt the country and the world for years to come.<\/p>\n
\u201cI really, really don\u2019t understand what they\u2019re trying to achieve,\u201d said Sarah Kobrin, chief of NCI\u2019s health systems and interventions research branch. \u201cIt just doesn\u2019t make sense.\u201d<\/p>\n
\u201cEfforts that are lifesaving now are being curtailed,\u201d one scientist said. \u201cPeople will die.\u201d<\/p>\n
Years of Bipartisan Support<\/strong><\/p>\n Initially, some workers said, they thought the cancer institute might be spared. HHS Secretary Robert F. Kennedy Jr. has called chronic disease \u2014 cancer is one \u2014 \u201can existential threat<\/a>\u201d to the country. Cancer research, with multiple NCI-funded breakthroughs in genetics and immunotherapy, has sidestepped the political minefields around other public health issues, like vaccination.<\/p>\n \u201cPeople who care about cancer might be the biggest lobby in the country,\u201d said Paul Goldberg, editor and publisher of The Cancer Letter, which has monitored oncology science and policy since 1973.<\/p>\n Count Mike Etchamendy, 69, of Big Bear Lake, California, as part of that lobby. Since 2013 he\u2019s flown to the East Coast scores of times to participate in five clinical trials at the cancer wing of NIH\u2019s Clinical Center.<\/p>\n \u201cThey call it the House of Hope,\u201d Etchamendy said. Between drugs, therapeutic vaccines, and expert treatment for his rare bone cancer, called chordoma, he said, he believes he\u2019s gained at least 10 years of life. He\u2019s proud to have served as a \u201clab rat for science\u201d and worries about NCI\u2019s future.<\/p>\n \u201cPeople come from all over the world to learn there,\u201d Etchamendy said. \u201cYou cut funding there, you\u2019re going to cut major research on cancer.\u201d<\/p>\n In response to a list of detailed questions from KFF Health News about the cuts and chaos at NCI, HHS spokesperson Andrew Nixon said the reporting amounted to a \u201cbiased narrative\u201d that \u201cmisrepresents a necessary transformation at the National Cancer Institute.\u201d Nixon declined to elaborate but said research into cancer and other health conditions continues to be a high priority \u201cfor both NIH and HHS.\u201d<\/p>\n \u201cWe are refocusing resources on high-impact, evidence-based research \u2014 free from ideological bias or institutional complacency. While change can be uncomfortable for those invested in the status quo, it is essential to ensure that NCI delivers on its core mission,\u201d he said.<\/p>\n Much of NCI\u2019s work is authorized by the National Cancer Act of 1971, which expanded its mandate as part of President Richard Nixon\u2019s \u201cWar on Cancer.\u201d Three of four of the cancer institute\u2019s research dollars go to outside scientists, with most of the remainder funding more than 300 scientists on campus.<\/p>\n And Congress was generous. Harold Varmus, one of more than 40 Nobel laureates<\/a> whose work was funded by NCI, said budgets were usually handsome when he was NIH director from 1993 through 1999. President Bill Clinton \u201cwould say to me, \u2018I\u2019d like to give you a bigger increase, Harold, but your friends in Congress will bring it up.\u2019 He\u2019d offer me a 5% increase,\u201d Varmus recalled, but \u201cI\u2019d end up getting more like 10%\u201d from Congress.<\/p>\n Congress appropriated $2 billion to NCI in fiscal 1993. By 2025, funding had risen to $7.22 billion.<\/p>\n Rat on Your Colleagues<\/strong><\/p>\n During a May 19 town hall meeting with NIH staff members, Jay Bhattacharya, the institute\u2019s new director, equivocated when asked about funding cuts for research into improving the health of racial and ethnic minorities \u2014 cuts made under the guise of purging DEI from the government.<\/p>\n According to a recording of the meeting obtained by KFF Health News, Bhattacharya said the agency remained \u201cabsolutely committed to advancing the health and well-being of every population, including minority populations, LGBTQ populations, and every population.\u201d<\/p>\n Research addressing the health needs of women and minorities is \u201can absolute priority of mine,\u201d he said. \u201cWe\u2019re going to keep funding that.\u201d But a study considering whether \u201cstructural racism causes poor health in minority populations\u201d is \u201cnot a scientific hypothesis.\u201d<\/p>\n \u201cWe need scientific ideas that are actionable, that improve the health and well-being of people, not ideological ideas that don\u2019t have any chance of improving the health and well-being of people,\u201d he said. That comment angered many staffers, several said in interviews. Many got up and walked out during the speech, while others, watching remotely, scoffed or jeered.<\/p>\n Several current and former NCI scientists questioned Bhattacharya\u2019s commitment to young scientists and minorities. Staffing cuts early in the year eliminated many recently hired NCI scientists. At least 172 National Cancer Institute grants, including for research aimed at minimizing health disparities among racial minorities or LGBTQ+ people, were terminated and hadn\u2019t been reinstated as of June 16, according to a KFF Health News analysis of HHS documents and a list of grant terminations by outside researchers.<\/p>\n Those populations have higher rates of certain cancer diagnoses and are more likely to receive diagnoses later than white or heterosexual people. Black people are also more likely to die<\/a> of many cancer types than all other racial and ethnic groups.<\/p>\n Jennifer Guida, a researcher who focuses on accelerated aging in cancer survivors, said she recently left NCI after a decade in part because of the administration\u2019s DEI orders. According to several workers and internal emails viewed by KFF Health News, those included an HHS edict in January to report their colleagues who worked on such issues, and flagging grants that included DEI-related terms because they didn\u2019t align with Trump\u2019s priorities.<\/p>\n \u2018I\u2019m not going to put my name attached to that. I don\u2019t stand for that. It\u2019s not OK,\u201d said Guida, who added that it amounted to a \u201cscrubbing of science.\u201d<\/p>\n Racial discrimination is one factor<\/a> that contributes to accelerated aging. \u201cThere are a growing number of cancer survivors in the U.S.,\u201d Guida said, and \u201ca significant number of those people who will become cancer survivors are racial and ethnic minorities.\u201d<\/p>\n \u201cThose people deserve to be studied,\u201d she said. \u201cHow can you help those people if you\u2019re not even studying them?\u201d<\/p>\n In May, NCI informed leaders of the Comprehensive Partnerships to Advance Cancer Health Equity, a program that links 14 large U.S. cancer centers with minority-serving colleges and universities, that their funding would be cut. The project\u2019s Notice of Funding Opportunity \u2014 the mechanism the government uses to award grants \u2014 had been suddenly taken offline, meaning NCI staffers couldn\u2019t award future funding, according to three sources and internal communications viewed by KFF Health News. These \u201cunpublishings\u201d have often occurred without warning, explanation, or even notification of the grantee that no more money would be coming.<\/p>\n The cancer partnerships have trained more than 8,500 scientists. They\u2019re designed to address widely documented disparities in cancer care by having top medical schools place students from rural, poor, and minority-serving schools and community clinics in research, training, and outreach.<\/p>\n Research shows that patients from racial and ethnic minorities receive better medical care and have improved outcomes when their clinicians share their background.<\/p>\n \u201cI\u2019m from an immigrant family, the first to graduate in my family,\u201d said Elena Martinez, a professor of family medicine and public health at the University of California-San Diego, who leads one of the partnerships with colleagues at largely Hispanic Cal State-San Diego. \u201cI wouldn\u2019t be here without this kind of program, and there won\u2019t be people like me here in the future if we cut these programs.\u201d<\/p>\n Silencing the Science Communicators<\/strong><\/p>\n In early April, when the dust settled after mass firings across HHS, workers in NCI\u2019s communications office were relieved they still had their jobs.<\/p>\n It didn\u2019t last. A month later, HHS fired nearly all of them, three former workers said. Combined with retirements and other departures, a skeleton crew of six or seven remain of about 75 people. \u201cWe were all completely blindsided,\u201d a fired worker said. NCI leadership \u201chad no idea that this was happening.\u201d<\/p>\n As a result, websites, newsletters, and other resources for patients and doctors about the latest evidence in cancer treatment aren\u2019t being updated. They include Cancer.gov<\/a> and NCI\u2019s widely used Physician Data Query, which compile research findings that doctors turn to when caring for cancer patients.<\/p>\n Gary Kreps, founding director of the Center for Health and Risk Communication at George Mason University, said he relied on Physician Data Query when his father was diagnosed with advanced stomach cancer, taking PDQ printouts when he met with his dad\u2019s doctors. \u201cIt made a huge difference,\u201d Kreps said. \u201cHe ended up living, like, another three years\u201d \u2014 longer than expected \u2014 \u201cand enjoyed the rest of his life.\u201d<\/p>\n As of May 30, banners at the top of the Cancer.gov and PDQ websites said, \u201cDue to HHS restructuring and reduction in workforce efforts, the information on this website may not be up to date and pages will indicate as such.\u201d The banners are gone, but neither website was being updated, according to a fired worker with knowledge of the situation.<\/p>\n Outdated PDQ information is \u201creally very dangerous,\u201d Kreps said.<\/p>\n Wiping out NCI\u2019s communications staff makes it harder to share complex and ever-changing information that doctors and patients need, said Peter Garrett, who headed NCI\u2019s communications before retiring in May. Garrett said he left because of concerns about political interference.<\/p>\n \u201cThe science isn\u2019t finished until it\u2019s communicated,\u201d he said. \u201cWithout the government playing that role, who\u2019s going to step in?\u201d<\/p>\n A Budget To \u2018Destroy Clinical Research\u2019<\/strong><\/p>\n Following court decisions that blocked some NIH grant cancellations or rendered them \u201cvoid\u201d and \u201cillegal,\u201d NIH official Michelle Bulls in late June told staffers to stop terminating grants. However, NCI workers told KFF Health News they continue to review grants flagged by NIH to assess whether they align with Trump administration priorities. Courts have ordered NIH to reinstate some terminated grants, but not all of them.<\/p>\n At NCI and across NIH, staffers remain anxious.<\/p>\n The White House wants Congress to slash the cancer institute\u2019s budget by nearly 40%, to $4.53 billion<\/a>, as part of a larger proposal to sharply reduce NIH\u2019s fiscal 2026 coffers.<\/p>\n Bhattacharya has said he wants NIH to fund more big, breakthrough research. Major cuts could have the opposite effect, Knudsen said. When NCI funding shrinks, \u201cit\u2019s the safe science that tends to get funded, not the science that is game changing and has the potential to be transformative for cures.\u201d<\/p>\n Usually the president\u2019s budget is dead on arrival in Congress, and members of both parties have expressed doubt about Trump\u2019s 2026 proposal. But agency workers, outside scientists, and patients fear this one may stick, with devastating impact.<\/p>\n It would force NCI to suspend all new grants or cut existing grants so severely that the gaps will close many labs, said Varmus, who ran NCI from 2010 to 2015. Add that to the impact on NCI\u2019s contracts, clinical trials, internal research, and salaries, he said, and \u201cyou can reliably say that NCI will be unable to keep up in any way with the promise of science that\u2019s currently underway.\u201d<\/p>\n The NCI laboratory chief, who has worked at the institute for decades, put it this way: \u201cIf the 40% budget cut passes in Congress, it will destroy clinical research at NCI.\u201d<\/p>\n KFF Health News correspondent Rae Ellen Bichell contributed to this report.<\/em><\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\n![](\"http:\/\/www.dangeladvertising.com\/wp-content\/uploads\/2025\/07\/Etchamendy-scaled.jpg\")
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