NIH got $1.6 billion for research into long COVID. Where are the treatments?
NIH got $1.6 billion for research into long COVID. Where are the treatments?
When Charlie McCone got COVID in March 2020 in San Francisco, he was 30, otherwise healthy and fit, not considered high-risk. His doctors told him he’d get better in a couple of weeks. He didn’t.
Eventually, weeks into being sick and with no real answers from his doctors, he turned to that place many of us turn to for medical information: the internet.
“I found a Facebook group with thousands of other people asking what’s going on, and I was like, ‘Oh my God,’” he said, “‘This is happening to so many other people.’”
It was already becoming clear then, in spring of 2020, that COVID could cause serious, lasting issues, including debilitating fatigue and brain fog, among many other symptoms. Because there was so much attention on COVID at the time, McCone said, “there was a lot of hope about the response to long COVID, I think, the first two years.”
Then in late 2020, Congress allocated over $1 billion to the National Institutes of Health for long COVID research. “There was this feeling that we’re going to have answers here in a few years,” he said.
But now it is a few years later, and that feeling has changed.
McCone is still sick. He’s not working anymore and can’t walk much more than a block. Roughly 20 million people in the U.S. are now estimated to have long COVID, maybe more. And that initial $1.15 billion NIH got for the RECOVER program — which stands for Researching COVID to Enhance Recovery — has yielded few answers and zero approved treatments so far.
“There’s been a lot of disappointment in terms of the program moving slowly and also focusing a lot on the kind of observational side of things,” said Betsy Ladyzhets, co-founder and managing editor of the Sick Times, a nonprofit news site focused on long COVID.
Most of the research money has gone into trying to learn more about what long COVID is — into clinical research, data collection and analysis and studies of electronic health records.
“Rather than what many people in the patient community and also the research community really want, which is focus on treatments, clinical trials,” Ladyzhets said.
There’s good reason for the focus on observational research, according to Dr. Serena Spudich, a neurologist and researcher at Yale who’s working with the RECOVER program.
“There has to be a very, very strong urgency for finding treatments,” she said. “And at the same time, we will only find treatments if we understand the condition properly.”
And understand what’s causing the many different kinds of symptoms people are having.
“Because long COVID is not one condition, it’s a very heterogeneous condition,” Spudich said. “And it’s very, very possible, I would even say likely, that different forms of long COVID — for example, the more neurologic forms versus something like severe shortness of breath or problems with the heart rate — those may actually be due to different types of biologic mechanisms that need different treatments.”
Outside researchers agree that these kinds of observational studies and data collection are critical, but some feel the NIH didn’t need to spend nearly $1 billion on them.
Dr. Ziyad Al-Aly, director of the Clinical Epidemiology Center and chief of the Research and Education Service at the VA St. Louis Health Care System, said his team and others did similar research earlier in the pandemic, “for peanuts, a few hundred thousand dollars that generated evidence much more robustly, faster, years ahead of RECOVER, for a small, small, small, small fraction of the funds.”
At this point, more than four years in, “NIH should be laser-focused, laser-focused on finding treatment for long COVID,” he said.
That will be a bigger focus going forward. NIH got another $515 million this year for RECOVER and plans to put much of it toward clinical trials.
This fall, it held a kickoff meeting for the next phase of the RECOVER program, called RECOVER-TLC, which stands for Treating Long COVID. Now, Joseph Breen at the National Institute of Allergy and Infectious Diseases at NIH said it’s in the process of soliciting ideas for drugs and other treatments to trial.
“We have every intention of getting started as soon as possible,” he said. “In reality, we’re probably into next year.”
David Putrino, director of rehabilitation innovation for the Mount Sinai Health System in New York, has been doing long COVID research since 2020. He said how the clinical trials are designed will be critical.
“What we need to be doing is rapidly testing as many drug targets as possible, rather than taking big swings,” he said. Meaning that instead of putting all the funding into a few big, expensive trials of a couple of drugs, RECOVER could do a bunch of smaller trials.
“For a couple million dollars apiece, they could be testing 100 drugs. And they could be logging the responses of those 100 drugs, and they could be moving into more sophisticated clinical trial strategies,” Putrino said. “That is where I think we should be applying the money.”
Many long COVID patients and advocates are cautiously optimistic about this next phase of research. Charlie McCone, who has become something of an expert in his own illness and now volunteers with the Patient-Led Research Collaborative, was at the kickoff meeting and left feeling a little more hopeful.
“The NIH can do this right, they have to do this right,” he said. “And they need to do it fast, which we know is possible.”
But no matter what comes of this current slate of funding, he said more is going to be needed. “No disease is solved with a one-time investment. And so, just because this first billion dollars didn’t produce much does not mean the next billion and the next billion won’t.”
Some legislators are already pushing for additional funding. Sen. Bernie Sanders, a Vermont Independent, along with several Democratic senators, introduced the Long COVID Research Moonshot Act in the Senate, and a companion bill has been introduced in the House. The Moonshot Act would provide $1 billion a year for 10 years for long COVID research. It has yet to be brought to the floor for a vote.
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