SCOTT SIMON, HOST:
Next week marks five years since COVID-19 was declared a pandemic. Many people still live with the lasting consequences of catching the virus, also known as long COVID. NPR health correspondent Will Stone joins us now. Will, thanks so much for being with us.
WILL STONE, BYLINE: Sure thing, Scott.
SIMON: Long COVID can be debilitating for many people. Are scientists any closer to understanding it?
STONE: They are. Researchers have coalesced around a handful of explanations. There seem to be multiple underlying drivers of the illness, depending on the patient. One big focus has been the idea of viral persistence - that people never fully clear the infection. But there are others related to immune dysfunction, blood clots, the reactivation of other viruses. These could ultimately trigger symptoms like brain fog, like fatigue, shortness of breath, something called post-exertional malaise. The challenge here remains translating some of these insights into treatment. There are still no approved drugs for long COVID. The approach is often to manage symptoms and try to improve quality of life.
SIMON: And what are the challenges in coming up with the treatment?
STONE: It comes down to clinical trials. There just aren't enough of them. A few years ago, there were a handful looking at drugs. Dr. Michael Peluso told me, by his count, there are now about 50, including some that Peluso is involved in at the University of California, San Francisco. But he says the reality is we just need a lot more for such a complex condition.
MICHAEL PELUSO: There are dozens of existing drugs that should be tested. We have drugs that can target almost every single one of the different mechanisms we think might be contributing to long COVID. But so far, we've launched way too few trials to actually do that with intense effort.
STONE: And, Scott, one of the major barriers here is that drugmakers are still on the sidelines, to some extent. Over and over again, Peluso hears the reason is there's not a reliable biological measurement of the condition - a biomarker that can be tracked across multiple trials in the same way that LDL or bad cholesterol is a biomarker for heart disease risk.
SIMON: Do we know how many people are affected?
STONE: That's hard to pin down. Research, including CDC data, has found about 18 million adults in the U.S. have long COVID. There are more conservative estimates. All of this depends on how you're defining the condition, who you survey. And people are still getting long COVID. Here's what Hannah Davis told me. She has long COVID herself and co-founded an advocacy group called the Patient-Led Research Collaborative.
HANNAH DAVIS: It has been downplayed. We have seen so much long COVID in the last year, two years. Long COVID rates, you know, have remained high in people who are vaccinated. It's remained high over different variants.
STONE: And I hear the same message from doctors who are seeing new patients alongside those who got sick two, three, four years ago and have not recovered.
SIMON: What are you hearing from patients, Will? More resources, more funding?
STONE: Yeah, continually. The federal government has funded long COVID research through its RECOVER initiative. Last year, an additional $660 million was appropriated. That's to be spent over the next four years, including on clinical trials. Now, obviously, there's huge uncertainty about federal funding for scientific research in general under the Trump administration. I spoke to Meighan Stone about this - no relation to me. She's a patient and directs the Long COVID Campaign. Stone has been in D.C., lobbying senators and the administration to, among other things, protect those funds from any cuts. Actually, this past week, she was at the confirmation hearing for Trump's pick to lead the National Institutes of Health, Dr. Jay Bhattacharya, and she managed to get a moment with him afterwards.
MEIGHAN STONE: He said to me, we're going to do the research to find a solution to this. I hope so. If the administration doesn't meet the patient community in that, then we will keep calling for action, the same way that we did under President Biden. Regardless of party or political position, long COVID patients have been failed by our leaders.
STONE: To be clear, there's certainly skepticism about whether the administration will take this work seriously. And there are real disagreements between the patient community and those now leading federal health agencies around COVID policies more generally. But Stone says long COVID patients just don't have the luxury to sit this out over the next four years.
SIMON: NPR health correspondent Will Stone. Thanks so much for being with us.
STONE: Thank you. Transcript provided by NPR, Copyright NPR.
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