The ongoing government shutdown is preventing the National Institutes of Health (NIH) from admitting new patients to clinical trials, which are typically the last resort for people whose illnesses haven’t responded to other types of treatment. Since the shutdown began last week, just a handful of desperately ill patients have managed to get a spot in an experimental trial at the so-called “House of Hope.”
NIH officials have confirmed that 12 people have been able to enroll in trials so far during the shutdown. Those patients all fall under the NIH’s exception for “crisis cases.” If someone’s illness is “imminently life-threatening” and the clinical trial may provide them with a chance of survival, the agency may waive its current prohibition on new patients in order to accommodate them.
But that’s significantly fewer patients than typically enroll during that time period. An estimated 200 people are accepted into NIH trials each week, and the majority of them — mostly Americans with rare forms of cancer — are being turned away right now.
Still, it’s provided some hope for the families who have successfully landed a spot. Tania Santillan’s five-year-old daughter, who has been battling leukemia, is one of the few patients who has been admitted this past week. After the government first shut down, Santillan wasn’t sure what was going to happen, and her daughter’s oncologists began emailing their colleagues at the NIH to try to work out a solution. “They were afraid they were turning down kids with cancer,” Santillan told the New York Times.
About 73 percent of NIH’s staff is currently furloughed. Its director, Francis Collins, doesn’t mince words when discussing the potentially devastating effects of the current shutdown.
“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,” Collins recently told NPR. “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?”