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What We Know About COVID-19 Long Haulers


There is still so much we don't know about COVID-19. Some people experience few, if any, symptoms. Others - well, their symptoms can last for months. Those patients are known as COVID long-haulers. At the COVID-19 recovery clinic in New York City, pulmonary and critical care specialist Dr. Aluko Hope is studying and treating these patients, and he joins us now from New York to talk about it.

Welcome to the program.

ALUKO HOPE: Thank you for having me.

GARCIA-NAVARRO: Your COVID-19 recovery clinic, called CORE, has been looking at these patients for a while now. Do we know yet why this is happening?

HOPE: We have some ideas and some hypotheses. Certainly, coronavirus is not the only virus that's been known to cause changes in the immune system. Other coronaviruses from before have been associated with protracted symptoms before this pandemic. But I think the volume of patients that we saw in the pandemic I think is partly the concern. So I think we're struggling with, as a health system, how to really deal with the number of patients that we're seeing that have protracted symptoms.

GARCIA-NAVARRO: Let's talk about what that looks like.

HOPE: I think it's a mix of many things, and there's a lot that we don't know yet. I think, for some patients, the virus does seem to create inflammatory changes. Their immune system responds in a way that does seem a little bit abnormal - for example, a lot of brain fog, fatigue. They might have rashes or changes in their skin, losing of their hair, those kinds of things. Sometimes the cough or the shortness of breath can be protracted - can be very many weeks after the severe illness. And they can also have protracted physical impairment - difficulty walking or difficulty with shortness of breath when they're climbing up stairs.

GARCIA-NAVARRO: Well, how common is it exactly?

HOPE: It doesn't seem to be the rule by any means. I think so far, the estimates suggest that it's going to be the minority of patients. The recent estimates suggest about 10% or so are patients who are going to have protracted symptoms. But yeah, I think for the patients that are struggling with it, it can be quite severe and very distressing.

GARCIA-NAVARRO: I'm just curious - when we think about 10% of all the people who have been getting COVID might have these long-haul symptoms - I mean, that's an enormous burden on the health care system in this country. Are you concerned?

HOPE: I mean, I think it's going to be a struggle, right? I think - first of all, I think physicians need to first understand that, because there's a lot we don't know, we have to trust our patients' testimony a lot more. Part of the distress comes when they're not validated by the people that they're seeing, right? It's like, well, you should be better, and you're not. What's going on? You look fine, and yet you're getting rashes or you're feeling fatigued or you're not able to wake up on time.

So I think we have to first sort of start to respect the testimony. And I think if we do that - I think the system is well-structured. I mean, our CORE clinic is here. But, of course, you know, in America, we don't have a robust health care system. And so I think that's always going to be a challenge, particularly in the Bronx, for example, where the patients are more low-income. But I think we're moving in the right direction, and I think the system seems to be more poised, I think, to really engage these patients.

GARCIA-NAVARRO: Yeah. I mean, the U.K.'s National Health Service is investing millions of dollars now in clinics for long-haulers. Do you think the U.S. should do the same?

HOPE: I would hope so. I mean, I think we started ours, and then we also started a peer support group for patients who could sort of talk to each other online and just engage with each other and give practical support, emotional support to each other. And these are the kind of things that ultimately help patients, right? It's not just about medicalizing everything that they have, but it's also about treating the symptoms when we can and helping them also to feel supported. And I think these post-COVID clinics, the peer support groups - these are all things that I think a robust health care system certainly should be able to provide these patients, given the volume of patients that we're going to be seeing.

GARCIA-NAVARRO: Last question. When you talk about peer support groups, what kind of mental health challenges do we see in long-haulers?

HOPE: Yeah. I think when you're seriously ill in the hospital, you could struggle with delirium. You could struggle with, you know, acute stress responses. And so when you're recovering in the months after, a lot of our patients struggle with - it could be anything from depression, anxiety, post-traumatic stress, really feeling nervous about being close to the hospital again or talking to a doctor again because of some of the bad reactions you had in the hospital.

And then the social isolation, I think, is a unique aspect of being in the pandemic era. I think for a lot of these patients, when they were at their sickest, they had to be isolated from their loved ones. And so that's something that I think a lot of them are still recovering from, and that's something that I think they struggle with even months after.

GARCIA-NAVARRO: Dr. Aluko Hope is a pulmonary and critical care specialist at Montefiore Health System in New York City.

Thank you so much.

HOPE: Thank you, Lulu. It was a pleasure being with you. Transcript provided by NPR, Copyright NPR.

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