Shutdown Prompts Fear, Confusion Among Cancer Patients


Even so, what most people don't know, Maris said, is that the federal government plays a key role in childhood cancer care and research. The National Cancer Institute, which is part of the NIH, runs a large proportion of clinical trials, which he fears may suffer during a prolonged shutdown.

"It's not going to have an impact today or tomorrow, but it's going to have major impacts down the road," Maris said, adding that he already knows of people who aren't able to submit grants for research until the shutdown ends. "It's an especially acute problem for children who have relapsed or refractory disease because they really need access to more innovative treatment."

Dr. Alan Wayne, who worked as the clinical director of pediatric oncology at the NIH until July, said NIH lab research has been halted as well.

"We've been told not to submit proposals for new work from here," Wayne said from Children's Hospital Los Angeles, where he is now the director if its cancer center. "If trials are slower to come on board and progress is made more slowly, that's going to have an impact down the line."

He said his lab research at the NIH, which involves studying cell samples from cancer patients to understand why they aren't responding to certain treatments, has been put on hold. His partners have been furloughed and the experiment has been abandoned until the shutdown is over, he said. If the shutdown lasts long enough, those cells could die, forcing him to start the experiments over.

Wayne said it's clear that the shutdown's delays will become substantial the longer it lasts, and it will hurt patients in the long run.

"It's not a hypothetical. These are very real individuals," Wayne said. "Each one of them deserves our maximum effort and speed to develop therapies to help them."

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