Reporting Jessica Kartalija
BALTIMORE (WJZ) — Every week, hundreds of patients, including children, are admitted to new clinical trials at the National Institutes of Health. Now many are losing hope as the government shutdown continues.
Jessica Kartalija has the details.
About 200 new patients are admitted to these trials every week. About 30 of them are children. Of those, about 10 of them are cancer patients.
Maddie Major doesn’t look sick at all, but this week, her leukemia came back for the fourth time.
“I hate when people cry,” Maddie said.
But her mother, Robyn Major, has reason to. The clinical trial Maddie now needs cannot be approved by the FDA because the FDA has been shut down with the rest of the federal government.
“I am completely blown away by how callous and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” she said.
Robyn says Maddie’s cancer, pre-B cell ALL, is curable in 90 percent of the cases. Her daughter is in that 10 percent category. Six months ago, she went through a clinical trial that worked. Because of her relapse, she’s scheduled to have it again. Now, it’s up in the air.
“For Maddie, this is truly life or death. This isn’t a game. This isn’t pushing one ideology over another. This is my baby’s life,” Robyn said.
Sick people hoping to join clinical trials at NIH are now being turned away because 75 percent of all NIH employees are being furloughed. Those already enrolled in clinical trials will still receive care.
“The lab animals at NIH are being taken care of, but if you have pediatric cancer, you aren’t,” said Congressman Andy Harris. “I would hope we could agree that they should be.”
While they act like children, they should take a cue from a child and act like her. She’s eight, and she is showing maturity beyond any of them,” Robyn said.
“Love. My only answer is love,” Maddie said.
Just two weeks ago, Maddie and her parents visited Capitol Hill, urging lawmakers to provide more funding for pediatric cancer research.
About 75 percent of NIH’s employees, or about 15,000 people, have been furloughed.
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