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Where the U.S. stands with long COVID after the pandemic

ARI SHAPIRO, HOST:

This week marks four years since the world came to a screeching halt.

(SOUNDBITE OF MONTAGE)

NANCY MESSONNIER: We expect we will see community spread in this country. It's not so much a question of if this will happen anymore, but rather more of a question of exactly when this will happen.

RECE DAVIS: The NCAA has made the decision to cancel the men's and women's tournament.

BILL DE BLASIO: So I regret to have to announce that, as of tomorrow, our public schools will be closed.

ANDREW ROSS SORKIN: Actor Tom Hanks and his wife Rita Wilson have tested positive for the coronavirus.

SHAPIRO: COVID was wreaking havoc on the United States, and people were doing everything they could to keep themselves safe - people like Julia Moore Vogel.

JULIA MOORE VOGEL: The only time I left the apartment was to take my 2-year-old outside to play in the driveway, basically, of the apartment building. So, you know, I made cloth masks that we wore, but it wasn't enough. And I must have gotten it in the hallway, where it was just enclosed.

SHAPIRO: Vogel is a senior program director at Scripps Research and works with the Patient-Led Research Collaborative for Long COVID. Her first symptom - not being able to taste the peppermint tea she has every morning. From there, things got worse. Vogel had shortness of breath that was triggered whether she was sitting up or just resting.

VOGEL: I would go to sleep at night thinking, am I going to die today? And, you know, I made a will, which I had never done. It's hard to remember how scary it was, you know, now because it's - we're so flippant about it.

SHAPIRO: When Vogel went back to work, she said it felt like her brain was moving slower. She knew about long COVID and knew she didn't want it, but that's exactly what happened. Now Vogel struggles with everyday tasks like cooking. When she goes out, she wears an N95 mask and often uses a wheelchair to preserve her energy. She also advocates for the millions of Americans living with long Covid. It's one of the most vexing legacies of the pandemic, and it's one that science still hasn't solved. So where do things stand? NPR's Will Stone is covering this. Hi, Will.

WILL STONE, BYLINE: Hey, Ari.

SHAPIRO: I think most people at this point are familiar with what long Covid is, this illness that can plague some people for months or years after an infection. Are new cases of long COVID still a risk today?

STONE: They are. I mean, doctors are still seeing new patients showing up at their clinic who've developed long COVID after even just a mild reinfection. Now, exactly, you know, what the risk is, it's hard to say. There is data to suggest the chance of getting long COVID has gone down compared to a few years ago, and one likely factor is there's more immunity built up in the population.

Studies have consistently found vaccination does reduce your risk of developing long COVID. You know, how much, though, is up for debate. An ongoing problem here, Ari, is that there are still different definitions of the illness. And in general, the U.S. doesn't have a great surveillance system in place that can accurately capture all the cases.

SHAPIRO: Well, that being the case, is there any kind of a number? Do we know how many people in the U.S. are struggling with long COVID?

STONE: It depends who you ask. I spoke to Dr. Ziyad Al-Aly. He's an epidemiologist at Washington University in St. Louis and the VA (ph). He studies long COVID. He estimates there are about 20 million people in the U.S. with long COVID, and that's based on a few different sources. But Al-Aly says, you know, this uncertainty about how many people are affected, it actually underscores a broader point, which is that there's still a lack of consensus in a number of critical areas when it comes to long COVID research. And that's one thing slowing down progress.

ZIYAD AL-ALY: Until we sort of solve that piece and come to a consensus of how do we really define long COVID, what are the entry criteria for clinical trials, how do we measure things in clinical trials in a way that would be also acceptable to the FDA, you know, big players like Big Pharma are unlikely to really invest heavily in this field because of those uncertainties.

STONE: And this really is key. If you talk to researchers and patient advocates, they will tell you what's really needed right now are well-designed and well-funded clinical trials that can test different treatments. There are some in the works, but it's not happening at nearly the scale you'd expect for a problem of this magnitude.

SHAPIRO: And so is it the case that there is not much in the way of treatment for patients?

STONE: No. I mean, there are no FDA-approved treatments for the condition. In fact, there isn't really a widely accepted test or method that doctors can use to diagnose it. There are specialized clinics for long COVID. Doctors tend to focus on treating individual symptoms. And some patients do have success, others not so much. I mean, that's assuming you can get seen there in the first place.

I'd say a big source of frustration right now is the federal government's involvement. Several years ago, the National Institutes of Health launched an effort called RECOVER, and despite a billion dollars being set aside, it has not delivered any groundbreaking results yet. Scientists who are working on long COVID, they tell me they're worried there just isn't an adequate vision and an ongoing source of money to move this work forward.

SHAPIRO: OK. So Will, what I hear you saying is there's no widely accepted definition of what long COVID is, we don't have an accurate number of how many people have it, we don't know how to treat it. I mean, is there anything that science has definitively learned about it? It does seem like every week, there are new studies about what might be going on.

STONE: Absolutely, Ari. I mean, there is no doubt scientists have actually made real strides in understanding the illness. We know it can affect many organ systems. The symptoms someone develops and how long they last, that tends to vary. So for example, some people will predominantly have fatigue and cognitive problems. Others, you know, it'll be mostly cardiovascular issues. And there are now a handful of pretty well-developed theories about what could be driving the illness.

SHAPIRO: What are those theories?

STONE: So just to tick off a few, there's a lot of attention on the idea of viral persistence, that essentially remnants of the virus, maybe genetic material or a protein - we're not sure - can stick around in your body, and that could spark all kinds of other problems. There are clear signs of immune dysfunction, possibly an autoimmune response. There's also intense interest in the role of the gut microbiome, inflammation in the vascular system. And more recently, we've heard a lot about problems with the mitochondria, and these help power cells.

SHAPIRO: But Will, that's so many different theories. It sounds like if somebody wants to know what's actually going on in their body, science still can't definitively tell them?

STONE: Yeah. I mean, the tricky thing here is scientists are finding these biological abnormalities. They just don't know what's at the root of the illness. And to make things even more complicated, Ari, it's possible multiple things are happening in some patients, but not others. It seems pretty clear long COVID is not just one kind of illness.

SHAPIRO: And you mentioned this frustration about funding. As we get farther away from the pandemic, is there an expectation that this research will continue with the same urgency and momentum that it's had?

STONE: I think it will. I mean, there are valid concerns about funding and lack of interest by drug companies, but I've been struck at how scientists from many different fields have come together to work on this. I've reported on the unprecedented amount of collaboration we're seeing between top research groups and with the community of patients who are, in many cases, helping drive this research. Here's how Ziyad Al-Aly sums up the situation.

AL-ALY: In the span of less than four years, we've made all that progress. But I'm also very cognizant that for the people who are hurting, for the people who are suffering from long COVID, that understanding is good, but it's really not good enough.

STONE: So there is tension here. On the one hand, scientists have learned a lot. At the same time, there's frustration that we're not farther along. And for some people, this has meant literally years living with a chronic illness, in some cases unable to work or go to school while they wait for more answers.

SHAPIRO: NPR health reporter Will Stone. Thank you.

STONE: Thank you.

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Will Stone