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Visiteur: 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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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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Jones says that when kids play with dolls that have mobility challenges, for example, it helps them identify and understand the struggles of people with disabilities whom they meet in real life.
“Barbie in a wheelchair cannot use the doll’s house in their kindergarten classroom, so they have to build a ramp in order for her to be able to access the door to their doll’s house, for example,� said Jones, who lives with cerebral palsy.

When she started her work incorporating disabled dolls into school curricula, Jones said, there were few available for purchase. She mostly had to make them herself. Now, she can buy them from big companies like Lego and Mattel, “which is wonderful.�
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Her daughter doesn’t have type 1 diabetes, she said. “But she sees me every day, living with it, representing and understanding and showing the world and wearing my devices confidently, and for her to see Barbie doing that was really special.�

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