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Brian Lehrer: This week, the US reached another grim milestone in the pandemic. 800,000 confirmed deaths now and millions of Americans have had COVID and survive, but have had to deal with its effects. One of the nightmarish aspects of the COVID pandemic, is when those symptoms persist for months on end or even show up in new and debilitating ways, after people thought they had recovered. We'll spend the next few minutes talking about what we know and what we still don't know about long COVID and how the disease has forced so many out of the workforce and into financial hardship.

This is one of the most increasingly common calls that we get whenever we do a COVID segment is. People want to talk about their experiences. People want to know what science knows, increasingly about long COVID. With us now, Christopher Rowland, Washington Post reporter on the business of healthcare, whose most recent story in the post is about the effects of the disease on careers and livelihoods when people have long COVID. Also with us, Dr. Janna Friedly, vice chair for clinical affairs at the University of Washington School of Medicine, the Department of Rehabilitation Medicine.

Hi, Christopher. Hi, Dr. Friedly. Welcome to WNYC.

Christopher Rowland: Greetings.

Dr. Janna Friedly: Good morning.

Brian Lehrer: Listeners, we invite your calls with your experiences with long haul COVID and the way it's affected your life, your work, your finances, or your medical questions about long COVID too. Help us report the story, we'll help you answer your questions. 212-433 WNYC, 212-433-9692, or you can tweet @BrianLehrer. Dr. Friedly, as recently as September, there were assays in the New Yorker and elsewhere about how hard it was for researchers to even define long haul COVID. As we come close to entering a third pandemic year, I guess depending on which part of the world you're talking about, we have entered the third pandemic year. Is there an official definition of long COVID?

Dr. Janna Friedly: We're still working on that. There have been some definitions that have been put out by the World Health Organization and the CDC and other organizations but there's still a lot of ongoing research to better define it. Currently, we're defining long COVID as really the range of symptoms that people are experiencing, that can last weeks or months or even more than a year after first being infected with COVID. It can really happen to anyone who has had COVID, even if their initial infection was very mild, or sometimes even if they didn't have symptoms with their initial infection. We're seeing people that have new symptoms that they didn't experience before COVID.

Brian Lehrer: Are there good numbers on the percentage of people who get COVID, who then wind up with long COVID? Is the science clear on why some people get it and some people don't?

Dr. Janna Friedly: The estimates range in the various studies that have been done anywhere from 10% all the way up to 50% or more of people who have had COVID and will experience symptoms of long COVID. Again, it depends a little bit on how you define long COVID. If we think about that, it's really staggering to think about how many people are experiencing these long term symptoms. We have 50 million infections. Even if 10% or up to 50% of people are experiencing these symptoms, that is just an incredible number of people who are potentially affected.

Brian Lehrer: Christopher Rowland from the Washington Post, I see you spoke with more than 30 people experiencing financial hardship as a result of long COVID. The accounts that these people gave you was so harrowing in some cases, and really they humanize what may feel abstract to many listeners when they just hear statistics. One of the people, someone local in our listening area is John Buccellato, an ER doctor on the Upper East Side. Why don't you tell us about him a little bit and what he dealt with as you reported it.

Christopher Rowland: Dr. Buccellato is a physician, emergency room trained physician, who was working in an urgent care clinic on the Upper East Side on Lexington Avenue N 96th. He came down with COVID around March, 2020 right at the beginning of the pandemic and was hospitalized. His case was fairly severe and he says that it destroyed his career, essentially. He had a thriving practice, physician, he was in his early 60s, had no intentions of retiring and now he can't work at all. He's alone in his apartment a lot. He has no cash flow anymore. He's getting rental assistance.

He recently applied for and did receive disability, so he is now disabled. He also has severe cognitive problems that have made it very hard for him to navigate the world. To navigate the bureaucracy of health insurance, health insurance denials, lapses in health insurance. As he says, this disease took his career away.

Brian Lehrer: Do you conclude that besides the disease itself, that the health insurance infrastructure and other benefits infrastructure that's needed to support people with long COVID is not there?

Christopher Rowland: Yes, indeed. The safety net has not caught up yet with what's happening with people with long COVID. If you take the lowest number and that is around, to say, it's 10% of people who got infected have some form of long COVID. A fraction of those people are so debilitated, they can't work at all. Those people are trying to apply for disability, but they're encountering denials, insurance. Doctors like, Dr. Friedly order a variety of tests to try to document their diagnosis. Insurance companies are denying in many cases some of those tests. Some of those tests get repetitive as patients go around and seek out different specialists.

There really is a maze that these folks have to deal with and encounter, even while they're essentially going broke and worried about how they're going to pay their mortgage. How they're going to pay their car payments. How they're going to clothe their children. How they're going to get Christmas presents. The stories that I heard interviewing 30 people was really dramatic and there's a lot of suffering out there.

Brian Lehrer: Let's hear what some of our callers are experiencing. Louis in Brooklyn, you're on WNYC. Hi, Louis. Thank you for calling in.

Louis: Hi. Can you hear me, Brian?

Brian Lehrer: I can hear just fine. Yes. Hi.

Louis: Hi. Basically, I got sick with COVID on March 2020 and I was in bed for about three weeks. It was early in the pandemic, so no hospital would take me. When I finally did get tested, I tested positive. Sorry. Anyway, long story short, I've been getting sick on and off after I got hit with COVID, mostly my respiratory system. I've been on and off of hospitals trying to find an answer for what it is that I have. When it's time to do a test like you mentioned before, there are a variety of tests that people and doctors do. I just got hit with a note from my insurance saying that they have to readjust my plan just because I've been getting so many tests, I guess.

The lingering question in my mind always is that they don't know. They always say maybe a respiratory virus. They don't know the long terms of COVID. They don't know how to treat me, how to diagnose me. They don't know what medicine to give. It's just many question marks that I don't have answers to and it is starting to get scary.

Brian Lehrer: It sounds scary both medically, and bureaucratically, which of course, also means financially. Dr. Friedly, can I give this to you on the medical aspects of what Louis says his doctor say, I don't know. I don't know. I don't know? I bet you hear that a lot?

Dr. Janna Friedly: We do. I think what it underscores is that we need on a national level more resources for specialty clinics, multidisciplinary clinics that can provide comprehensive care for people that are affected by long COVID. Really this coordinated care, I think it's incredibly important because people are experiencing a variety of symptoms. We're seeing people with debilitating fatigue, and intolerance to exercise, brain fog, memory problems, headaches, shortness of breath, chest discomfort, anxiety, and just a variety of symptoms. I think one of the challenges in our healthcare system is that the care is very fragmented.

People are seeking care in a variety of different places for their individual symptoms, rather than being seen by a team of people who can look at things holistically and really from a systemic standpoint. Oftentimes the symptoms that people are experiencing that are either chest discomfort or even breathing difficulties aren't necessarily because of damage directly to the lungs or the heart, it's more of a systemic issue. I think having people who can understand that and can treat that way really does make a difference and we are seeing a lot of improvement in patients.

I think that while it's frightening to think about the impact of long COVID, there's also a lot of hope for recovery. I myself had COVID early in the pandemic around the same time as our listener. I had symptoms for many many months after COVID and I am now fully recovered and using a lot of the strategies that we use in our rehabilitation clinic.

Brian Lehrer: Let me bring another caller in before we answer the part of Lewis's question that I think will relate to this caller too, about the health insurance aspects of it. Julia in Stanford, you're on WNYC. Hi Julia?

Julia: Hi, Brian. Thanks for taking my call. I think I might mirror a lot of the things that Lewis said and then also I appreciate what Christopher Rowland has been reporting about because it really does feel like I'm being heard. I feel like an overarching theme throughout this whole experience for me. I got COVID, I'm approaching my year anniversary milestone, I hoped I would never get to, just in a few days. I've had chest pain, vertigo, dizziness, difficulty breathing, I was unable to work.

I'm now back to work and I'm I guess functional but my daily life is really difficult and I feel like I've just been abandoned by medical research, by healthcare. We can't work and then we lose our healthcare by public health leaders because long COVID is not counted in the numbers. We are considered recovered and we're far from recovered. I'm glad to be alive of course, but not recovered. Then much of the medical community, like people were saying, our tests look normal and we're sent home.

We're just sent home to figure it out and suffer. I just don't think that we have the tests available to test what is going on because as Louis said, people don't know what's going on. Then in addition to that, it's the government institutions. We cannot quote unemployment because we're not looking for jobs. There was so much government support during COVID for small business, for rental and housing support, for unemployment, for mental health and I don't hear long COVID as part of the conversation.

Brian Lehrer: Can I ask you Julia?

Julia: I really feel like this-- Yes.

Brian Lehrer: You said you lost your healthcare. Did you mean by that you lost your health insurance, and if so--

Julia: Sorry, my health insurance.

Brian Lehrer: -were you able to get insurance through the Obamacare marketplace or anything like that?

Julia: Yes. We'll actually, luckily my husband had just gotten a job that provided him with health insurance, because he did not have one prior to that, so I was able to get onto his luckily for myself and my family.

Brian Lehrer: In your case. Christopher Rowland from the Washington Post, let me bring you in to talk to Julia because she obviously is frustrated with feeling abandoned not just by the medical system, but by the financial system, by the safety net system and this is exactly what you're reporting on. What can people do?

Christopher Rowland: She's right. The system is trying to catch up quickly and doctors are trying to get their arms around the syndrome of long COVID and what all the aspects are. From the insurance standpoint, what they're looking for is some clarity on what test they can actually run and which will say, "Okay, this person has long COVID." No such test exists really and it has to be a diagnosis by a physician looking at an array of factors.

Then some of them are hard to measure, chronic fatigue and exhaustion, there's not a test for that. Headaches is difficult to test for, cognitive problems if they're mild, they're hard to find. You've got these insurance companies looking at this and they're saying, why another cognitive test is going to do anything for this person? I don't think we're going to cover that. Similarly there's a whole other battle going on in the disability insurance space, where you've got disability companies denying claims for disability, for short-term and long-term disability.

This is a private disability insurance that you pay for. Many people pay for through their payroll deduction and they're getting denied because they were offered a month or two. Because they can't prove with a diagnostic test that they were so fatigued that they couldn't work. It's a real difficult situation. The same people are trying to fight these bureaucratic fights. They've suddenly lost their careers, they can't work. They have depression, anxiety, which is all these factors that are playing into this. SSociety not understanding what's going on with them, even exacerbate those mental health problems.

Brian Lehrer: Dr. Friedly, what's the medical side of that? Do you need tests that you can at least tell insurance companies or tests of long COVID?

Dr. Janna Friedly: I think Christopher is absolutely right that it's very challenging because a lot of the symptoms that people are experiencing don't come with tests, there is no diagnostic test for long COVID. It really is a diagnosis that is a bit vague and it requires physicians to look at all of the different symptoms that people are experiencing and document that, these were symptoms that are consistent with long COVID that weren't there prior to their infections. We are dealing with this every day in terms of denials for services and trying to get our patients the care that they need.

We try to approach this from a standpoint. In my clinic, I really try to just treat the patient for the symptoms that they're experiencing. For me, some of the diagnostic tests don't help me because they don't change the care that I provide. It makes patients very anxious because they need these tests to prove to insurance companies and to employers that they have long COVID and their symptoms are "real" which of course they are. It's a challenging situation.

I think the other thing that we have to recognize is that, even patients who are, and people who are fully insured with by all of the standards in the United States good insurance. They still face thousands of dollars of medical bills for the ongoing treatments that they need. I frequently have patients even with good insurance that still can't access the care that they need because they can't afford the copays and all of the associated bills that come along with even fully insured patients. It's a really complicated problem.

Brian Lehrer: Which is an argument for something like Medicare for all, or at least very strict limits on out of pocket expenses that don't exist in the law today. This also sounds Dr. Friedly, reminiscent of what people experience, who suffer from myalgic encephalomyelitis which used to be called chronic fatigue syndrome. The symptoms are a little hard to pin down, there isn't a test for it per se, like a virus and then they struggle with these same coverage issues. Right?

Dr. Janna Friedly: Absolutely. There's a lot of overlap between long COVID and chronic fatigue syndrome. Long COVID oftentimes comes with other symptoms that aren't part of chronic fatigues syndrome, but there's a lot of overlap. Some of the questions that we have in research and in the medical field is, have we seen this before? Is long COVID new =, or is this another version of either a post-viral syndrome that we've seen before, or some of the other syndromes that are affecting people currently?

Brian Lehrer: Let me get a few more callers in before we ran out of time. Lloyd in Manhattan, you're on WNYC. Hi Lloyd?

Lloyd: Hi Brian. Thank you for taking my call. My wife and I both came down with COVID simultaneously in February of 2021. We had a mild case, relatively minor symptoms compared to some of the other callers. One thing I do notice is that I often smell cigarette smoke when there is no cigarette smoke. I'm wondering if you've heard about that. My sense of taste is still pretty good, but this comes out of nowhere and is fairly frequent.

Brian Lehrer: Interesting. Dr. Friedly, we've heard about people losing their sense of smell from having COVID. What about having phantom smells in the recovery phase?

Dr. Janna Friedly: It's actually very common. I myself would smell gasoline, so I remember walking around my house to trying to look for gasoline leaks and telling my husband that I know that there's a gas leak somewhere. It took me a while to realize that it was the phantom smells that I was experiencing, so it is very common. It does get better over time, but that's one of the things that is unique to COVID that we really haven't seen before.

Brian Lehrer: One more, Francesca and Queens, you are on WNYC. Hi Francesca.

Francesca: Hi Brian. I have a question. I have the same experience as everybody. I got sick very early in the pandemic and I went from being able to dance for hours to being unable to climb a flight of stairs without resting and putting my head between my knees and pruning my lungs and my heart rate spiking and the phantom smells. It's neurological things, like I couldn't remember what side of the road I was supposed to be driving on and I stopped driving for a while, forgetting all kinds of stuff.

I was sick, really sick for a year and it just didn't get better, and I was really starting to lose hope. For me, the second dose of the vaccine started to improve me. I don't know why that happened and it doesn't happen for everybody. There seems to be like an appreciable minority of people who get lucky and the vaccine works for them. I'm not hearing anything about any-

Brian Lehrer: The relationship between. That's such a great question. Dr. Friedley, we're almost out of time, but we also have the opposite question coming from another listener via Twitter who asks, "Any intel as to whether a booster is necessary for long callers who've been double vaxxed?" And says that, "His wife was told that her long haul symptoms were exacerbated by the second shot. Possibly too many antibodies causing the immune system to overact overreact." I don't know if that's medically or scientifically founded or not. Give us your best 30 seconds on vaccinations and long haul.

Dr. Janna Friedly: Absolutely. We definitely recommend the booster. We recommend vaccinations after COVID and after for people experiencing long COVID. The studies are showing that a subset of patients are getting better with boosters, so there's definitely some hope that the vaccine can actually improve your symptoms. The majority of people don't have a change in their symptoms. Then there's a very small percentage of people who report worsening of symptoms. I think what's really important to understand is that with long COVID, there is variability and people have ups and downs in their symptoms naturally and that there's a lot of things that can impact their symptoms. Whether it's directly related to the vaccine or not, we're still studying that, but our recommendation is definitely to get the vaccine and the booster.

Brian Lehrer: Christopher, I'll give you the last word and our last 30 seconds with the barriers to benefits that you've reported for the Washington Post. Is there any legislation to address the problems that long haulers are facing?

Christopher Rowland: No, not that I know of. There has been some movement in Congress to take a look at this and to make sure that people are getting the disability payments that they deserve. Yet our insurance system has big holes. January is coming when insurance plans reset, so all these long haulers and as well as every other American who has insurance is facing the reset of their deductibles. They're going to be on the hook starting in January for thousands of dollars of exposure for all their treatments, for their tests, for everything they're trying to do to get themselves back on their feet.

Brian Lehrer: Well, something more needs to be done obviously, and we will keep covering it. Christopher Rowland from the Washington Post. Dr. Janna Friedley from the University of Washington School of Medicine. Thank you both so much.

Christopher Rowland: Thank you.

Dr. Friedly: Thank you.

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