Posted: October 3, 2013
The Clinical Center at the National Institutes of Health in Maryland is often the last resort for patients who have mysterious, rare or terminal diseases. Patients sometimes call it the "House of Hope." But the government shutdown may mean that prospective patients will be turned away.
The Clinical Center at the National Institutes of Health in Bethesda, Md.
Abbey Whetzel has a 12-year-old son named Sam who has been at the National Institutes of Health Clinical Center in Maryland for over a month. He has leukemia that is no longer treatable. And in this difficult time, one source of joy has been the therapy dogs that come to visit the sick kids.
"They can only come once a week, but it's the highlight of Sam's week," says Whetzel. But this week, she says, her son got some bad news. "They came and stopped in, and told Sam that the therapy dog wouldn't be coming because of the government shutdown."
"He was disappointed," Whetzel says. "He really looks forward to the dogs coming. He has a special fondness for the little dogs that can come and just sit on his bed and lie down and curl up with him."
Going without a therapy dog was hard. But Whetzel knows that for some families, the shutdown is even harder.
The NIH Clinical Center is the nation's largest hospital dedicated solely to clinical research, and patients often come here seeking options for difficult-to-treat illnesses. But the NIH has said that with rare exceptions, it will not enroll new patients in ongoing studies or clinical trials at the center for the duration of the shutdown. In a normal week, about 200 new people would be enrolled in clinical trials that are testing new treatments.
"The clinical center is often called the 'House of Hope,' and the 'House of Hope' had to close its doors to new patients because that's what a shutdown does," says Francis Collins, the director of the National Institutes of Health. "How would you feel, as a parent of a child with cancer, hoping that somehow NIH and its clinical center might provide some rescue from a very difficult situation, to hear that, frankly, you can't come, because the government wasn't able to stay open?"
The NIH shutdown is also affecting other medical centers because most of the NIH budget goes out as grants to support researchers and clinicians across the nation — in fact, the NIH is the biggest source of funding for medical research in the world.
Collins says the entire grants program is now closed. "No new applications can be received," he says. The government will continue to operate its payment management system for scientists with existing grants, so that they can get access to those funds — but if grantees run into any problems, no one will be around to help.
That means universities and hospitals across the country are grappling with what the NIH shutdown might do to their work. "Any new trial that is awaiting funding, any new grant that is going to be reviewed that involves clinical research, clinical trials ... those things are on hold," says Anne Klibanski, chief academic officer with Partners HealthCare, which runs hospitals such as Massachusetts General, in Boston.
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