ARI SHAPIRO, HOST:
For many patients, it can feel like progress on solving long COVID has stalled, but there are many scientists working at it. And increasingly, they're relying on private funding to push their research forward, as NPR's Will Stone reports.
WILL STONE, BYLINE: Mysterious - it's a word that often accompanies headlines about long COVID. There's some truth here. The underlying causes are still unknown. There are no approved treatments. But Amy Proal thinks it's time to retire this adjective.
AMY PROAL: We're so past the point of being mysterious or just documenting symptoms.
STONE: Proal is a microbiologist who will readily dive into the relevance of the immune response in macaque monkeys...
PROAL: These tunneling nanotubes that might allow it to move from cell to cell.
STONE: ...Or the nuances of collecting tissue samples.
PROAL: Intestinal tissue or lung tissue or lymph node tissue or tonsil tissue...
STONE: Over the last few years, Proal has knit together a wide-ranging team of scientists who are trying to pinpoint the biological underpinnings of long COVID. Much of their work is centered on the hypothesis that a persistent viral infection could be driving symptoms. Their recent paper in the journal Nature Immunology on this evidence has more than 30 authors from more than half a dozen institutions. In it, they lay out key questions.
PROAL: What mechanisms does SARS-CoV-2 use to persist? What's the difference between persistence in people who develop long COVID symptoms versus not?
STONE: Proal doesn't work for the government or a university. She runs a nonprofit called PolyBio Research Foundation. It's funding much of this cutting-edge work thanks to $30 million donated by a Russian Canadian billionaire from the world of crypto. Proal says that sounds like a lot of money. But, in the big scheme...
PROAL: If we're really going to go into clinical trial infrastructures, we would need to get much higher numbers in there.
STONE: The reliance on private funding to study long COVID underscores an uncomfortable fact that was on full display during a recent Senate hearing about long COVID, when Senator Bernie Sanders put this question to a panel of scientists.
(SOUNDBITE OF ARCHIVED RECORDING)
BERNIE SANDERS: I'm assuming that all of you believe that the federal government has got to play a much more active role with substantial sums of money for research, development, clinical trials, etc. Is that correct?
UNIDENTIFIED PERSON #1: Absolutely, yes.
UNIDENTIFIED PERSON #2: Yes.
UNIDENTIFIED PERSON #3: Yes.
UNIDENTIFIED PERSON #2: No doubt.
SANDERS: All right.
(APPLAUSE)
STONE: Much of the federal funding on long COVID has come in the form of a billion dollars from Congress for an initiative called RECOVER. It's faced criticism for not delivering more meaningful results. Dr. Michael Peluso at the University of California, San Francisco, is one of the investigators in RECOVER.
MICHAEL PELUSO: I mean, it's enrolled over 15,000 people, and the scale of it is huge. But there's never been a disease condition where a single research study has solved the problem.
STONE: Peluso and others involved in RECOVER have voiced concern that there isn't a plan for sustained funding. John Wherry at the University of Pennsylvania says the typical process for a scientist to secure federal funding can take anywhere from 15 to 30 months. But with this long COVID collaboration, he can move on this research quickly. He's looking for clues in the immune cells - something he couldn't do easily without being able to call up someone like Michael Peluso at UCSF and ask for samples.
JOHN WHERRY: It's one of these conversations where, like, you don't have to explain the background. You don't have to convince anybody. You just say, hey. We're doing a thing. And it happens almost immediately.
STONE: Over at Massachusetts General Hospital and Harvard, Michael VanElzakker says this collaboration on long COVID is unlike anything else he's been a part of.
MICHAEL VANELZAKKER: I don't want to be cynical, but a lot of science is kind of publish or perish. And we're not trying to get pubs out - we're trying to get answers. You know what I mean? Like, it actually feels that way.
STONE: VanElzakker, who's also with PolyBio Research, thinks the government should direct more energy toward long COVID. But, he says, it's not as simple as just demanding more money.
VANELZAKKER: More resources and smarter approaches aren't necessarily synonyms.
STONE: He says there should be urgency and also a clear vision. Will Stone, NPR News.
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