"WASHINGTON — The National Institutes of Health is fumbling its first efforts to study long Covid.
Fifteen months ago, Congress showered the agency with a massive $1.2 billion to research the mysterious cases of patients who never fully recover from Covid-19 infections. But so far the NIH has brought in just 3% of the patients it plans to recruit.
Critics charge that the NIH’s missteps are even bigger: that it is acting without urgency, that it is taking on vague, open-ended research questions rather than testing out therapies or treatments, and that it is not being fully transparent with patient advocates and researchers.
This study “is a slow-moving glacier,” said Lauren Stiles, a former long Covid patient and a research assistant professor of neurology at the State University of New York at Stony Brook.“With a half-billion dollars, they could have run multiple clinical trials.”
Even the NIH admits the pace has been dissatisfying.
“I mean, everybody is frustrated about how slow things are,” said Walter Koroshetz, the director of the National Institute of Neurological Disorders and Stroke and a co-chair of the initiative, in an interview with STAT. He added, however, that while starting enrollment “took way too much time,” the NIH stood up the study “much faster than we’ve done anything else before,” pointing out the agency’s usual pace can be even slower.
NIH’s identity crisis: The pandemic and the search for a new leader leave the agency at a crossroads
And then there is the matter of the money — more than $1 billion of which was temporarily transferred out of NIH to help pay for the health department’s efforts to house unaccompanied children at the U.S. border with Mexico. (NIH, which quietly disclosed the transfer in an FAQ section on the study’s website, contends the transfer didn’t slow the research down at all.)
The success of the NIH’s research into long Covid will shape the trajectory of the long-term burden of the pandemic on health care systems around the world for years to come, as millions of patients grapple with debilitating symptoms. If researchers can find answers, it also could provide a once-in-a-lifetime chance to give hope to a host of patients with other post-viral illnesses that have been long misunderstood.
But the NIH will have to walk the fine line between responsibly designing large-scale research to provide the clearest answers, and making sure the effort doesn’t buckle under the weight of bureaucracy.
“The potential is huge. With that kind of investment, if the money is used wisely, it could be a huge leap in knowledge of post-viral disease,” said a long Covid researcher who spoke anonymously to avoid jeopardizing grants from the NIH. “That was the plan, and I hope it’s still going to be possible.”