Long COVID Doctor: “We Don’t Know What We’re Dealing With”

SARA SIDNER, HOST: Now, to China. China’s reversal on its zero-COVID policy is seeing a wave that is overwhelming some hospitals. Research published in Chinese state media suggests more than 900 million people in the country have likely been infected with COVID now, peaking nearly two weeks after the restrictions were eased. For millions of people, symptoms can persist be on the initial infections, lasting weeks, months, or sometimes years. Doctor Francesca Beaudoin is the director of the Long COVID Initiative at Brown University, and joins Hari Sreenivasan to explain why it is so difficult to diagnose.

(BEGIN VIDEO CLIP)

HARI SREENIVASAN, CORRESPONDENT: Dr. Francesca Beaudoin, thanks so much for joining us. You wrote a recent column in “The Washington Post” that almost look like a frequently asked questions section. And –but your point is, is that we actually don’t have the answers to some of those most frequently asked questions. Like, for example, what is long COVID? Here we are, year three of this, do we know for sure?

DR. FRANCESCA BEAUDOIN, DIRECTOR, THE LONG COVID INITIATIVE AT BROWN UNIVERSITY AND ASSOCIATE PROFESSOR AND INTERIM CHAIR, BROWN UNIVERSITY

EPIDEMIOLOGY DEPARTMENT: Yes, that’s exactly right. You hit the nail on the head. We still don’t really know what we’re dealing with when we’re talking about long COVID.

SREENIVASAN: Why is that?

DR. BEAUDOIN: You know, part of this, it should not — long COVID should not have surprised us. We have been dealing with post-viral syndromes for a long time. In fact, if you — looking back at the 1918 flu pandemic, which we make a lot of references to in talking about COVID, we saw a post-flu syndrome during that pandemic as well. But for some reason, long COVID caught us off guard. And, I think part of the reason that we don’t understand it is that is very heterogeneous, meaning long COVID means a lot of different things to different people. When we look at the symptoms of long COVID, we’re talking about anything ranging from loss of taste and smell, all the way to pretty debilitating fatigue and shortness of breath. And then the other thing playing into it is that we don’t — we still don’t understand what’s driving it. What’s causing it. The underlined biology or sometimes it’s called pathophysiology. We still don’t really have a good hold on what is driving those symptoms.

SREENIVASAN: Usually, our problems are, we don’t have a large enough data set. We don’t have a great population mix. That’s not the case for this. I mean, we — every kind of person has been infected by this all over the world.

DR. BEAUDOIN: That’s exactly right. And we all, probably, know somebody that is suffering the long-term consequences of COVID, or long COVID as we’re calling it. So, you’re right there’s not an absence of people or problems to study. It’s that, as we’ve seen with much of the pandemic, we’re still racing to keep up in terms of the science. The science is racing to keep up with the problem.

SREENIVASAN: You know, the Center for Disease Control had estimate that as of May 5, you know, several months ago in 2022, the U.S. has had roughly 81 million cases of COVID-19, and nearly a million COVID deaths, right. So, even on a lower end, let’s say, 12 percent with three or more symptoms of long COVID, of that huge number, that would be almost 10 million people in the U.S. that would have developed this. That’s roughly 10 times the number of people who have died with it. I mean, we’ve had — you know, we have a tendency to focus on the people who have died, and rightfully so, but the people who are still alive with this is a huge problem.

DR. BEAUDOIN: Huge problem, but what those numbers don’t really tell you is the severity piece.

SREENIVASAN: Uh-huh.

DR. BEAUDOIN: And it’s very different for somebody to be dealing with, maybe, some very mild fatigue but they can still go to the gym, they can go to work, they can take care of their kids, from somebody that can’t get out of bed and is disabled from COVID. And we know that those people exist. And so, sometimes I worry a little bit that when we’re talking about those huge numbers, staggering numbers —

SREENIVASAN: Uh-huh.

DR. BEAUDOIN: — that a lot of people, it doesn’t hold validity for them. And they say, well, jeez. I don’t know 30 people that are — that can’t get out of bed from long COVID. This can’t be real. This can’t exist. And I think we do a disservice to the people that are truly suffering from severe long COVID. And so, I do believe that there are many, many people suffering the aftereffects of long COVID. And there are some of those people have quite severe aftereffects and I think we’re not helping those people.

SREENIVASAN: Does it exacerbate underlying conditions?

DR. BEAUDOIN: I think that’s one of the biggest things that we ought to be worried about. You know, it’s interesting, the CDC published a study relating long COVID to mortality, to deaths, and that made a lot of headlines. Long COVID kills. And I wanted to push back a little bit on that. And that I think that’s the wrong headline. Long COVID is not deadly. Actually, if you look at the numbers, the — probably people that are dying directly as a result of long COVID are very, very few and far between. But I think what we should be worried about is how long COVID might exacerbate or hasten other chronic health conditions. Either because you have a long COVID, so you’re now not managing your other health conditions in the way that you should, maybe going to the doctor or taking medications or treatment like you should because you’re so exhausted or you’re having trouble breathing or you have cognitive impairment, or it may be that long COVID itself and the biology that’s driving long COVID are interacting with other chronic health conditions like diabetes and dementia. So, more of the work we need to focus is on just that. The interaction of long COVID and other health conditions.

SREENIVASAN: What have we learned over these past couple of years about who is affected more? I mean, I’ve seen reports that two thirds of the patients with long COVID are women versus a third are men. I mean, have we — is there a way to establish with the numbers of people we’ve already seen and the research that’s been done so far? Any kind of patterns?

DR. BEAUDOIN: The things we know — I think at this point, we really do understand well the types of symptoms that people have following a COVID infection in kind of the lasting symptoms. So, I think we understand that well. And we understand who is at risk, or at least we’re starting to, as you highlight, are in subgroups of people seem to be at higher risk for long COVID symptoms, women, older adults. You do have to interpret that a little bit cautiously because a lot of the studies that have been done relied on volunteers. And so, that does not tell us the whole denominator of people, the true head count of long COVID cases. And so, sometimes those findings can be bias. For instance, maybe women are more likely to volunteer for research studies about long COVID, and so that might lead us to false conclusions. That being said, I do think that there is something there. And it is a pattern that we sometimes observe it with other chronic illnesses. The other thing that we need to be thinking about in terms of who is impacted by long COVID is through a health equity lens. We know that certain communities were disproportionately affected by the initial phases of the pandemic, in particular. So, they have — are black and brown communities had disproportionate rates of COVID in the beginning. And so, the way that you get long COVID is through having a COVID infection. And so, certain communities are disproportionately impacted by acute infection. It then reasons to stand that they’re also going to be more impacted by long COVID. The other thing to consider is that long COVID, differentially impacts people depending on what type of work they do. If you have a very physical job, you know, if you’re doing construction, or you’re in a warehouse, you might be more impacted by long COVID than somebody that is a data analyst, that works at home on their computer and can work flexibly and remote. And so, there’s many places that health equity plays out. And then we haven’t even talked about health care access. And these are the things that we need to be really pressing as we’re thinking about how the pandemic continues to play out in the U.S.

SREENIVASAN: I mean, the way you’re talking about it. there isn’t any single treatment. I mean, because the symptoms present differently for individual by individual. It’s not like you can say, all right, well, we’ve created this pill and this is going to solve it.

DR. BEAUDOIN: That’s exactly right. We still don’t know the best way to treat long COVID. And right now, it’s almost like whack-a-mole with the different symptoms that people have. And a lot of this is falling to the primary care providers. We did have a lot of optimism, I think, in the beginning that long COVID specialty clinics would provide, you know, an umbrella, you know, a place of multi-disciplinary care where people with long COVID could have all of their needs met. I think that long COVID clinics have not delivered quite on those promises and probably the experience of patients varies depending on their geography and what academic medical center they might happen to be near, locally. Our long COVID clinic that was affiliated with our largest academic medical center just closed. And so, that’s something that we’re hearing from patients as well.

SREENIVASAN: Speaking of research, the NIH is funding something — I want to say something around $1.2 billion study called RECOVER. 40,000 patients to studying long COVID. What do you think that they need to be asking if they’re not already asking?

DR. BEAUDOIN: So, RECOVER was a massive investment. Taxpayer dollars, $1.2 billion. Probably one of the single largest research investments on behalf of the government for a specific problem at one point in time. And some people have likened RECOVER to a glacier, and that it really was this slow-moving mass. And in the beginning, I don’t think there was a lot of productivity coming from RECOVER, and it was quite opaque. There has been some increased transparency and momentum around patient recruitment. And so, about two years in, and there has not — I can’t point to a single, like, landmark study that has come from a RECOVER, but there is a lot of work ongoing. In addition, a massive amount of infrastructure being built up in terms of data and just ability to recruit a lot of patients. So, I’m hopeful that in the next year, we will start to see some products coming from RECOVER that tell us really, like, what causes long COVID. You know, the basic biology and pathophysiology, and also treatment, an evidence-based treatment for long COVID. And then thirdly, hoping to better classify long COVID. Right now, we call long COVID this whole bucket of things. But it may be that it really is discreet, kind of, syndromes that were all — that are all called long COVID now but may actually be different things. And that may be really important for figuring out who develops long COVID, but also treatment.

SREENIVASAN: A 2021 study in the Journal of American Medical Association pointed out that nearly half of Americans reported signs of depression after being diagnosed with COVID-19. Is there a mental health epidemic that’s running in parallel to the COVID one?

DR. BEAUDOIN: Hard to know, and I think that the current studies really don’t lend themselves to teasing apart those two things, and it probably is cyclical. And what I think we’re starting to observe is that long COVID itself, directly either exacerbates underlying mental health conditions. And there’s evidence that people do have new mental health diagnoses following COVID. But it is really a complicated question to answer because multiple different things are happening at the same time. And so, teasing that apart, you know, is important to understanding how long COVID plays out in different individuals. But in some regard, it doesn’t matter. We know that following a COVID diagnosis, you are more likely to develop worsening depression or anxiety. We should just — we should be in tuned to that. We should be aware in screening people and accessing treatment for depression and anxiety. I’m not sure that long COVID being the driver changes the treatment of those things, if that makes sense?

SREENIVASAN: Yes. So how is our current health care system dealing with, say, conservatively, an extra million or 2 million people who have different symptoms that require their doctor, a hospital, kind of different needs?

DR. BEAUDOIN: So, I don’t think we’re handling this well at all. I mean, health care, as you highlight, is in crisis to begin with. And now, we have a new chronic health condition that that system is not equipped to handle both in the outpatient settings, and certainly in our safety nets, the emergency departments. And so, it doesn’t take very much to, you know, tip things over. And again, I think part of the lesson learned here in moving forward, we talk a lot about the pandemic, and future pandemic preparedness, is how is our experience with long COVID going to inform future pandemics so that we are ready for these ongoing sequelae of the initial infection.

SREENIVASAN: I know your organization is also working with insurance companies to try to calculate the cost of — kind of, the added cost, I should say, that there is for patients that are suffering from this. What’s the impact?

DR. BEAUDOIN: We, at the Long COVID Initiative at Brown University are working closely with our partners at Blue Cross Blue Shield, Rhode Island to try and understand that because that’s another unknown with long COVID. You know, we’ve spent some time talking about the health effects, but what are the economic costs of long COVID, just even from a preparedness standpoint. You know, we all in the U.S., in some fashion pay for our health insurance. And so, we need to understand what the downstream implications of that. The results are not fully available yet, but based on some preliminary analysis, there is an — just following an initial COVID diagnosis, there is an increased monthly and annual spent in that year following a COVID diagnosis.

SREENIVASAN: So, somebody looking at this from just, kind of, an economic lens, you’re talking about increased health care costs right away. And there’s also got to be economic impacts for a number of days or hours these individuals spend no longer participating in the workforce. I’m not talking not just sick days, but really if it’s a chronic condition, they might be out of the workforce altogether.

DR. BEAUDOIN: That’s absolutely right. So, the economic piece starts at the individual. And that, you know, we have talked to patients who are no longer working and bringing in a paycheck into their house because they can’t work because of long COVID, and now that person is no longer in the workforce. There’s obviously been a tremendous amount of tension — attention on the labor shortage in the U.S. and some have even populated that long COVID is a contributor to that. And then, you know, bring back — circle back to health care costs. And so, the ripple effect in terms of the economy can be, I think, quite staggering.

SREENIVASAN: So, where would you say we are now in terms of being prepared for something like this to happen again? Considering that we’re having a conversation almost three years in and we still don’t know exactly what it’s doing to the bodies of people who are suffering from this. How do we prioritize, how do we prepare, how do we get our minds around that a pandemic doesn’t just mean the immediate virus and the first symptoms?

DR. BEAUDOIN: I hope that were there and, you know, again part of the infrastructure that’s being built up from the RECOVER initiative would poise us to be able to address this in a more real-time fashion. Part of it was that we started — you know, the signal that long COVID was a thing really started happening — I don’t know, several months, maybe a year into the pandemic. And I think, next time, if we have learned our lesson, we will be looking for that early signal, you know, as soon as we know that a new disease or virus has emerged. And we will be anticipating, kind of, the ongoing health care burden cost, and be thinking about health care access. We have so much data at our fingertips. We need to use that data. We need to use it well. And we need to use it in real-time to not just surveil the ongoing infection but to surveil the after effects.

SREENIVASAN: Dr. Francesca Beaudoin from the Long COVID Initiative at Brown University, thanks so much for joining us.

DR. BEAUDOIN: Thank you so much for having me.