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From Therapy Dogs To New Patients, Federal Shutdown Hits NIH

Oct 3, 2013
Originally published on October 4, 2013 1:00 pm

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.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

We are hearing many stories this week of those shut out by the government shutdown. Let's go now to the biggest source of funding for medical research in the world: the National Institutes of Health. Some 75 percent of NIH employees have been furloughed, which means universities and hospitals around the country are grappling with what that means. NPR's Nell Greenfieldboyce visited the NIH's own hospital in Maryland dedicated solely to medical research. Trial patients often go there to receive experimental treatments, and the shutdown has affected the NIH hospital in ways both large and small.

[POST-BROADCAST CORRECTION: Nell Greenfieldboyce did not visit the NIH Clinical Center for this story. She obtained her interviews by phone.]

NELL GREENFIELDBOYCE, BYLINE: Abbey Whetzel has a son named Sam. He's 12 years old, and he's dying of leukemia. He's been at the NIH clinical center for over a month. And during this difficult time, one source of joy has been the dogs - the therapy dogs that come to visit the kids.

ABBEY WHETZEL: They can only come once a week, but it's the highlight of Sam's week.

GREENFIELDBOYCE: This week, though, her son got some bad news.

WHETZEL: They came and stopped in and told Sam that the therapy dog wouldn't be coming because of the government shutdown.

GREENFIELDBOYCE: And what did your son say?

WHETZEL: He was disappointed. 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 lay down and curl up with him.

GREENFIELDBOYCE: Abbey Whetzel says going without a therapy dog was hard, but she knows that for some families, the shutdown is much harder. The NIH has said, with rare exceptions, it will not enroll new patients in ongoing studies or clinical trials at the center.

FRANCIS COLLINS: How would you feel as 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?

GREENFIELDBOYCE: Francis Collins is the director of the National Institutes of Health. He says people come to the center because they're facing all kinds of illnesses, not just cancer - infections, rare genetic diseases. In a normal week, about 200 new people would be enrolled in clinical trials that are testing novel treatments.

COLLINS: 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.

GREENFIELDBOYCE: 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. That entire grants program is now closed. Anne Klibanski is chief academic officer with Partners HealthCare, which runs hospitals, such as Massachusetts General, in Boston.

ANNE KLIBANSKI: 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.

GREENFIELDBOYCE: What's more, she says, the impact will be felt not just on clinical trials that involve patients, but also on basic lab research, because the entire biomedical community depends on the support of the NIH. Nell Greenfieldboyce, NPR News. Transcript provided by NPR, Copyright NPR.