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Government shutdown forces clinical trial patients to wait

By Val Willingham, CNN
October 3, 2013 -- Updated 1127 GMT (1927 HKT)
STORY HIGHLIGHTS
  • About 200 patients who start NIH clinical trials weekly must wait until shutdown ends
  • Of those, about 30 patients are children, and about 10 of them are cancer patients
  • About three-fourths of NIH's employees -- 14,700 people -- have been furloughed

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(CNN) -- Michelle Langbehn, 30, has endured nine months of chemotherapy, two cycles of radiation, a spinal fusion and several tumor removal surgeries. But the cancer that's attacking her body continues to spread, and her future treatment options are limited.

There was hope for the Auburn, California, mom -- a clinical trial that's testing a new drug called Cabozantinib that's been approved to fight other cancers. Researchers at the National Institutes of Health had gathered Langbehn's medical records; they were set to evaluate her status on Monday to make an official enrollment decision, she says.

Then the government shut down.

Every week, hundreds of patients like Langbehn are admitted to new clinical trials at the National Institutes of Health. But as of Tuesday, these patients are being put on hold until the government resumes operation.

Reid on shutdown of kids' cancer trials

"Due to the lapse in government funding ... transactions submitted via the web site may not be processed, and the agency may not be able to respond to inquiries until appropriations are enacted," a message on the top of the NIH website states.

Every week, about 200 new patients come to the NIH Clinical Center in Bethesda, Maryland. Patients are now being told they will have to wait until the government starts up again to begin their trials, according to NIH spokesman John Burklow.

"In fact, six new studies would have started this week that we are deferring," Burklow said.

Approximately 30 of the 200 new patients are children, he said, and about 10 of those children are cancer patients.

"I am furious," Langbehn said. "They are denying or delaying potentially life-saving treatments to Americans in need of a miracle. I speak for everyone battling cancer when I saw we don't have time to wait."

Langbehn's oncologist gave her two years to live. That was last July. "I do not plan on letting this take me away from my family," she says.

Burklow did note that participants who are already in studies are still being treated and will continue with their trials. Burklow also said patients in desperate need of treatment will be handled differently and will more than likely be seen by physicians or nurses at the NIH Clinical Center.

About 75% of NIH's employees -- or about 14,700 people -- have been furloughed.

Researchers at other institutions who have received NIH grants are not affected by the government shutdown. But the agency is not accepting any new grant applications.

CNN's Jacque Wilson and Daphne Sashin contributed to this story.

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