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In early April, when the dust settled after mass firings across HHS, workers in NCI’s communications office were relieved they still had their jobs.
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It didn’t 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. “We were all completely blindsided,” a fired worker said. NCI leadership “had no idea that this was happening.”
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As a result, websites, newsletters, and other resources for patients and doctors about the latest evidence in cancer treatment aren’t being updated. They include Cancer.gov and NCI’s widely used Physician Data Query, which compile research findings that doctors turn to when caring for cancer patients.

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’s doctors. “It made a huge difference,” Kreps said. “He ended up living, like, another three years” — longer than expected — “and enjoyed the rest of his life.”

As of May 30, banners at the top of the Cancer.gov and PDQ websites said, “Due 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.” The banners are gone, but neither website was being updated, according to a fired worker with knowledge of the situation.

Outdated PDQ information is “really very dangerous,” Kreps said.

Wiping out NCI’s communications staff makes it harder to share complex and ever-changing information that doctors and patients need, said Peter Garrett, who headed NCI’s communications before retiring in May. Garrett said he left because of concerns about political interference.

“The science isn’t finished until it’s communicated,” he said. “Without the government playing that role, who’s going to step in?”

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Initially, some workers said, they thought the cancer institute might be spared. HHS Secretary Robert F. Kennedy Jr. has called chronic disease — cancer is one — “an existential threat” 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.
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“People who care about cancer might be the biggest lobby in the country,” said Paul Goldberg, editor and publisher of The Cancer Letter, which has monitored oncology science and policy since 1973.

Count Mike Etchamendy, 69, of Big Bear Lake, California, as part of that lobby. Since 2013 he’s flown to the East Coast scores of times to participate in five clinical trials at the cancer wing of NIH’s Clinical Center.
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“They call it the House of Hope,” Etchamendy said. Between drugs, therapeutic vaccines, and expert treatment for his rare bone cancer, called chordoma, he said, he believes he’s gained at least 10 years of life. He’s proud to have served as a “lab rat for science” and worries about NCI’s future.

“People come from all over the world to learn there,” Etchamendy said. “You cut funding there, you’re going to cut major research on cancer.”
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 “biased narrative” that “misrepresents a necessary transformation at the National Cancer Institute.” Nixon declined to elaborate but said research into cancer and other health conditions continues to be a high priority “for both NIH and HHS.”

“We are refocusing resources on high-impact, evidence-based research — 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,” he said.

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