A Michigan kindergartner's family is relying on experimental treatments and research courtesy of the National Institutes of Health to fight his extremely rare form of cancer — and that treatment could be up in the air amid cuts from tech billionaire Elon Musk's Department of Government Efficiency (DOGE) task force, CNN reported on Tuesday.
In 2022, Aly Vela brought her son Cailen in for a routine checkup. What was initially thought to be an ear infection turned out to be a highly dangerous, rare, and poorly understood cancer called embryonal rhabdomyosarcoma.
"Cailen, then a bubbly preschooler with floppy blond hair, was immediately referred to specialists at the University of Michigan and CS Mott Children’s Hospital," said the report. The doctors "drew up an initial treatment plan of chemotherapy and proton therapy. They also began biomolecular sequencing analysis — an examination of the disease at a molecular level so that doctors can be armed with as much information as possible about Cailen’s specific case of cancer." All this treatment and research, which has been a constant struggle and forced the Velas to miss important development milestones with their other child Alyssa, was made possible with NIH funding.
Cailen's treatment initially worked, but the cancer relapsed at the end of last year — and the family is now doubly fearful the NIH cuts could simply make another round of treatment impossible.
“If the funding got eliminated or cut that would be devastating, because these kids definitely need help in research,” Aly said to CNN. “All the help — because there’s no real answers.”
DOGE has taken an axe to agencies and programs across the board, firing or suspending tens of thousands of workers in the process, which may be against federal law. Rare disease treatment, like that Cailen has needed, often involves extensive research supported by NIH grants. But according to the report, "Doctors, scientists and medical advocacy groups say they are worried that much of the work they are doing — and the work that is still to come — could be seriously hampered if the NIH funding cuts do go into effect."
A federal judge last week extended an order that temporarily blocks DOGE and the Trump administration from capping NIH grants.
