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NIH enrolls a dozen critically ill patients despite shutdown

WASHINGTON - A few desperately ill patients have managed to get into clinical trials at the National Institutes of Health's famed hospital, even though the government's partial shutdown has others being turned away, the agency said Wednesday.

Normally, about 200 new patients every week enroll in studies at the NIH's research-only hospital, often referred to as the "house of hope" because so many of those people have failed standard treatments.

The shutdown halted most of those new enrollments, sparking heated political debate about the fate of children with cancer as Congress and the White House grappled with how to get the government back to work.

NIH officials could make exceptions to the no-new-patient policy only for crisis cases, when someone's illness was imminently life-threatening and the study he or she hoped to enter offered some hope for improvement.

From Oct. 1 through Tuesday, 12 patients who met that criteria were enrolled in studies at the NIH Clinical Center, said agency spokeswoman Renate Myles. Most had cancer, but she couldn't say how many were children.

Tania Santillan of Beloit, Wis., is breathing a sigh of relief: Her 5-year-old daughter got one of those coveted spots. She underwent a bone marrow transplant a year ago for a particularly aggressive form of leukemia — but two weeks ago, a check-up showed the cancer had returned.

Even as doctors told the family the best option was an experimental treatment being studied at the NIH, they broke the news that with the shutdown, enrollment wasn't a certainty.

"They were afraid they were turning down kids with cancer," Santillan said, recalling how oncologists began emailing colleagues at NIH as the family looked on, beginning the process to get try to get the child accepted. Finally Santillan got the word: "They said they will accept her, because she needs it."

Mother and daughter travel to NIH next week, and will spend the expected month of treatment at the nonprofit Children's Inn at NIH, open to house families during the shutdown because it is privately funded. The shutdown forced the furlough of 73 percent of the NIH's staff.