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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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