Toolkit: COVID Long Haulers
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A Monday Toolkit episode — this one focused on the mystery of COVID-19 long haulers, people who report an array of long-term symptoms. We’ve got two experts to break down what we know — and don’t know — from both a clinical and research standpoint. Emergency room physician Craig Spencer and virologist Angela Rasmussen answer your voicemails and emails about why some people become long-haulers and others don’t, what, if any, patterns are emerging, where to go for help, and how we are trying to figure it all out.
Keep up with Andy on Twitter @ASlavitt and Instagram @andyslavitt.
Follow Craig Spencer @Craig_A_Spencer and Angela Rasmussen @angie_rasmussen on Twitter.
In the Bubble is supported in part by listeners like you. Become a member, get exclusive bonus content, ask Andy questions, and get discounted merch at http://lemonadamedia.com/inthebubble/
Check out these resources from today’s episode:
- Read this article by a COVID long-hauler: https://www.theatlantic.com/health/archive/2020/09/covid-19-heart-pots-myocarditis/616021/
- Survivor Corps is one of the largest support groups for COVID-19 long-haulers: https://www.survivorcorps.com/
- Check out Dr. Rasmussen’s recent article on COVID-19 reinfection: https://slate.com/technology/2020/08/coronavirus-reinfection-hong-kong-study.html
- Here is Dr. Spencer’s latest New York Times Opinion piece, co-written with Dr. Seema Yasmin, about how COVID-19 hoaxes are making doctors’ jobs harder : https://www.nytimes.com/2020/08/28/opinion/sunday/coronavirus-misinformation-faceboook.html
- Learn more about Congressman Jamie Raskin’s legislation to expand funding for COVID long-hauler research: https://raskin.house.gov/media/press-releases/raskin-introduces-legislation-address-america-s-hidden-health-crisis
[00:53] Andy Slavitt: Welcome to In the Bubble. This is Andy Slavitt. We have a toolkit episode for you today that is on long haulers — that is, people with chronic COVID conditions — with two amazing people and tons of your questions that we tried to get answered here. Let me introduce you very quickly. Angela Rasmussen is a virologist and associate research scientist at the Center of Infection and Immunity at the Columbia University School of Public Health. And Craig Spencer is the director of Global Health in Emergency Medicine at New York Presbyterian, Columbia University Medical Center. He currently divides his time between providing clinical care in New York and working internationally in public health. He has been both a physician and a patient and dealing with long-term chronic conditions related to viruses. This is an episode with a lot of questions and some clues, but not perfect answers, and I refuse to have anybody on the show that will give you false certainty, so you will get a state of what is known about the symptoms that are affecting people long-term, hopefully some tips on if this is affecting you or your family, how to deal with them. And we will just keep bringing you the latest knowledge.
[02:14] Andy Slavitt: This is a really rough topic. And we sent out requests for voicemails and emails on this topic and we got dozens and dozens and dozens of people describing situations of what people are calling long haulers. These are people who are living with COVID. And you all know a lot about this topic. So you’re going to help us make whatever sense of this is possible and help guide people through this. So, Craig, in addition to being an ER doc, I understand that you are a long hauler yourself?
[03:10] Craig Spencer: I am. Although thankfully not COVID. I had antibody testing a couple of weeks ago which showed that I was negative, meaning that thankfully personal protective equipment works, even through a surge in March and April when I was on the front line in York City. I am a long hauler. I’m an Ebola long hauler. I had the unfortunate displeasure of being infected in the course of taking care of patients in West Africa in 2014. Not sure how it happened, but when I got back to New York, I fell ill. I was hospitalized for 19 days. It certainly wasn’t an enjoyable experience, if you ever heard anything about Ebola, I was one of the lucky ones that survived. But what I’ve been talking about is a lot of other COVID long-haulers is that immediate aftermath of surviving. My experience says, you know, a longer term survivor, you know, right away, I lost twenty five pounds when I was in the hospital. It was hard for me to kind of get up and just go to the bathroom. I had joint pain and muscle pain and headaches and just profound weakness. Thankfully, a lot of that resolved over the span of a few months. I was young. I was otherwise healthy. I didn’t have any underlying comorbidities. But what I continue to have and what I don’t share a lot about, but I’ve tried to do a lot more, just to let a lot of the COVID long haulers know my experiences. Even to this day, you know, six years out, almost six years out, I continue to have difficulty concentrating and creating new memories. Even if you saw all the stuff that I did just to prepare for this, you know the many times I read each paper and I wrote things down and made different notes. This is drastically different than what I would have had to do in August of 2014. I’ve learned to live with it and I don’t think anyone would know it if they had just met me. But I certainly have this long-term neurological impact from having a fever for a bunch of days or just being really sick with this viral illness. So I’m certainly here not to speak for the COVID long haulers. You know, a lot of them can do that themselves and are starting to do that online and social media in chat groups and Facebook groups. But I do want to kind of share my personal experience as someone that’s a long-hauler from something else and also just what I see on a daily basis in the emergency department in New York City.
[05:20] Andy Slavitt: So you’re going to bring the perspective of both a doctor, but also someone who can really empathize with what people are going through. And I appreciate you saying it’s not exactly the same thing, but it’s powerful for us to know that our physicians also can be patients and that they can relate. Angie, you bring a different background to this topic. Can you just before we dive into the question, tell us a little bit about that?
[05:43] Angela Rasmussen: Yeah, absolutely. So I’m a virologist, and while I’ve never had either Ebola or COVID, I studied both of those viruses. And specifically what I study is the host response to virus infection and how that contributes to different forms of disease pathogenicity, so the process by which a virus actually causes disease. And we’ve seen for Ebola, for MERS coronavirus and now for SARS-2 that, you know, there’s all these different disease presentations in different people. Sometimes people have mild acute disease, but they might become these long haulers. Sometimes people might have severe acute disease, still become long haulers, or maybe not. And we know that from previous studies, with coronaviruses in particular, there are certain types of damage we know that these infections cause and that can explain some of the long-hauler symptoms. But what I’m really interested in is kind of getting into all the different organ systems that are affected, and how that might affect all these different presentations of COVID long-hauling that we’re actually seeing. Because we really just don’t know that much about it other than the symptoms that patients are reporting, but they seem to really cover a lot of different things. So there’s these neurological problems. There may be permanent lung damage, there may be cardiac problems. And really what I would like to understand is how the virus interacting with its host causes all these very different problems in different people.
[07:08] Andy Slavitt: OK, so let’s jump in the questions.
[07:14] Caller: Hi, Andy. My question about the long-haulersI guess would be, do we have any idea why some people have this for the long haul and others don’t? And since I’m guessing the answer is not yet, what will it take, or how close are we to finding out or having any inkling as to what’s going on with that? Thanks for everything you do. Appreciate it.
[07:47] Angela Rasmussen: So we are a long way from understanding that in terms of experimental lab work. Right now, one of the problems we have is that — well, there’s a couple of technical and logistical problems that prevent us from really studying this in a rigorous way. One is that anytime you infect an animal with SARS coronavirus 2, they have to stay in a BSL3 lab and there’s limited space and limited expertise to do that. It’s really hard to keep animals, especially larger animals like non-human primates, in that environment for long periods of time. So it’s really hard to study this experimentally, which means that we’re going to have to rely on looking at clinical samples. And the problem with that is that — and maybe Craig can speak to this more — is that there is a real problem. This has been true for the ME/CFS community as well with patients actually getting their doctors to take them seriously when they report some of these long-haul problems. So if their physicians are not recognizing that this is actually a thing that people are going through, there are not going to be studies designed to collect the samples that you need to collect from these patients to try to understand more what’s going on, like at a biological level. And so I think those are really two pretty severe obstacles, because a lot of times clinical samples are not really adequate for looking at questions in a really rigorous, controlled way. But we don’t have we don’t really have the ability to address these things in the lab, so we’re going to have to do a better job in terms of how we interact with these long haul patients.
[09:17] Andy Slavitt: So if we get our act together. Do you think this is something we could understand a lot more of inside of a year? Do you think it’s five years? Do you think it’s 10 years or do you think it’s still going to be a mystery for a long, long time?
[09:28] Angela Rasmussen: To some degree, it’s going to be a mystery for a long, long time. I think, though, there is stuff that we can learn, some basic stuff within a year. And that is how many of these long haulers are experiencing neurological problems versus cardiac problems, for example. How is this affecting lung function? Some of these things that we’re gonna have to follow for long periods of time, for example, with the SARS coronavirus classic outbreak, they did a follow up of some patients 15 years later, and many of them had impaired lung function, impaired pulmonary function. So we to some degree will have to continue following this for years to come to really understand how long this long haul truly is.
[10:06] Andy Slavitt: Got it. Craig, anything you’d add to that?
[10:09] Craig Spencer: Yeah. You know, we’re still learning a lot every single day about the acute manifestations of this disease. Very early on in March and April, we had these discussions every day. Should we be putting these patients on anticoagulation? Is this a thrombotic disease? We didn’t really know we were getting a lot of that data every day that’s really changing how we deal with these patients, how we treat these patients. And we’re seeing the impact on decreased mortality. We’re learning up about proning and different types of vent settings. I think we’re going to have to do the same thing with the long-haul community. We’re already quite delayed. We don’t have nearly the same amount of research that’s being done for acute infection of COVID, as we do for those that are continuing to have chronic or longer symptoms. What we’re seeing is that a lot of this research is already being done, but it’s patient or community led. So you have the body politic group, you have you have a lot of others in the community that are trying to lead this research themselves and trying to convince others to do this.
[11:05] Andy Slavitt: How about at the micro level? You’re in New York, there are folks who presented with this as early as late February, early March. We’re now in August. What’s the longest you’ve seen people having symptoms? What kind of symptoms are you seeing on the ground when people come into the hospital?
[11:22] Craig Spencer: Yeah, I’m seeing this nearly every time I go into work. I had a friend and a colleague who early on in March was talking to me before this all started about his ability to go out and run. He got up to six miles. He was doing some nine-minute miles. He was really excited. We talked about running. A couple of weeks after that, so this is the end of March, I saw him extremely ill lying in a hospital bed, worried about whether I was going to have to intubate him. He had COVID, he got better over the span of a couple of weeks, but I just talked with him a couple of days ago. He doesn’t really confide this in a lot of other people, but he said, hey, look, I’m not able to run a mile. The hill that I was, you know, running back and forth up over the span of an hour, I can hardly even walk up once. If you were to see him, if you were to look at him, or talk with him, you might not know that he’s having these chronic symptoms. This is a young guy the same age as me who had no underlying comorbidities before this, who got sick and continues to have these symptoms. I got a bunch of colleagues, I see patients that are coming in with chronic or with long term respiratory issues. They’re saying they can’t breathe, that are fatigued, that are complaining of joint pain, muscle pain, confusion or this brain fog. A lot of people I’m seeing that are coming in just looking to be believed. I had one woman a couple of weeks ago who said, can you please just believe me? The last place I went, they referred me to a psychiatrist. And this was a woman who is a professional, who is really well educated, who was, you know, like had super good insight into what had happened to her, and the fact that she had never been like this before, and was just trying to convince me to take her seriously. And thankfully, as someone that had dealt with this myself and recognized how hard it is to get people to understand what you’re going through, I did and recognized that she is just like so many others who are interfacing with a medical community that either hasn’t seen a lot of these COVID patients with complications or just doesn’t know how to how to manage them.
[13:18] Andy Slavitt: So far, we’re not proving great as a country to understand things we can’t physically see with their own eyes.
[16:45] Andy Slavitt: Question from Carrie Huggins: “Do the long haulers have antibodies or are they fading even as the damage continues to their bodies? Does the virus go dormant and hide in people’s bodies and then have flare ups like people with herpes? Or are they having their lungs tested the way long distance marathoners get hooked up and tested for lung capacity and function?” Craig, you wanna start with that one?
[17:10] Craig Spencer: Yeah, I mean, in a sense I think this episode is probably the easiest and the hardest to do. It’s easiest because it’s easy for us to say we just don’t know. Like, is this gonna be a post-polio thing where people’s 15, 20 years down the line end up having these recrudescence and this emergence of symptoms? Is it going to be similar to other viruses that can have long term impacts on the immune system or can stay in immunologically protected sites like Ebola did in CSF and in the genital urinary tract or in the testes in semen? We just don’t know a lot of these things. It’s also potentially hard, one of the harder episodes, because there are so many protean manifestations of this. And there’s a possibility that it’s going to be all of those things. It may be that virus continues to live in certain protected sites. It may be that we have long term impacts because of ongoing inflammation. It may be one or all of these things we just at this point don’t know.
[18:06] Andy Slavitt: So, Angie, do people at least get antibodies?
[18:09] Angela Rasmussen: Most people do according to the studies that have been done so far. What we don’t really know is what level of those antibodies are protective, if those antibodies can have any sort of harmful effect. We do know that for some other viruses, antibodies themselves that bind but don’t neutralize the virus can actually cause a more severe disease presentation called antibody-dependent enhancement. But the vast majority of people do develop some level of antibodies. Another key question is how long those last, or antibody durability. For the most part, though, it does look like the immune system works like it’s supposed to, at least in terms of generating antibodies to the acute infection.
[18:50] Andy Slavitt: Got it. So while we’re doing these studies, it would be helpful to have you reflect on pattern recognition that we may see so far. We have a question like that from Audrey. She says, “the long-term complications are what scares me the most about the virus. Has any pattern emerged in regard to a profile type that is most likely to get afflicted with long-term complications? Are there pronounced commonalities between the specific types of long-term side effects and who they may be most likely to impact?
[19:26] Angela Rasmussen: So basically, no, not from anything I’ve read. Part of the problem is that there hasn’t really been a really rigorous epidemiological investigation of COVID long-haulers. But the reports, like the anecdotal reports that we’ve been hearing about, are really kind of all over the map. There doesn’t seem to be a pattern other than people who have mild disease certainly can become long-haulers. There are people who’ve reported having these long-term effects, even though their initial bout with COVID was not very severe. So maybe that’s a pattern. Maybe it’s not. But there are certainly also people that have had severe disease that are also reporting these continuous effects. There’s also no pattern in terms of the types of things that are being reported. Certainly there’s a large group of people that are reporting ME/CFS-like symptoms. That’s myalgic encephalomyelitis, or chronic fatigue syndrome, as it’s better known. And the real key thing that draws those patients together is that they have post-exertional malaise. So they exercise and it just completely wipes them out physically. So that is something that’s been reported. But the cause of that, whether it’s similar to ME/CFS, is still really unknown.
[20:40] Andy Slavitt: So that feels like a common symptom. So, you know, our philosophy here at In the Bubble is if you want certainty, go to Twitter. If you want the truth, come In the Bubble at will. We will not give you false certainty, will tell you what we know when we know it. Craig, you’ve seen people coming into the E.R. Recognizing that we don’t have sufficient studies or even observational studies, are you seeing any common patterns that would help answer some of these questions?
[21:13] Craig Spencer: I think that the common pattern is that we know what this can affect basically every organ in the body. So it’s not surprising that it can have longer term impacts on nearly every organ in the body. I see people coming in with neurologic complaints, cardiac complaints, respiratory complaints, hematologic problems as a complication from COVID. Yeah, we don’t have, you know, a big meta-analysis of a bunch of studies of long-haulers. We do have a lot of patient led research that has been informative. There’s a lot more research that’s getting started in the U.K., in France, here in the U.S. as well, at Mount Sinai, there’s a post-COVID care clinic in New York City at UCSF, at Columbia. There’s a lot of work that’s getting started. And even though we don’t have a bunch of studies, what we do have is precedent from SARS and MERS. And we also have a, you know, a handful of studies for really each one of these organ systems to let us really extrapolate that there will likely be some long-term disability for a subset of the population that gets infected.
[22:12] Andy Slavitt: I have another voicemail both to play for you guys.
[22:17] Caller: Hey, Andy Slavitt and the In the Bubble Crew. I have been sick since March 13th. I have been seeing a number of specialists and physicians for the last six months, or almost six months, and still dealing with shortness of breath and chest tightness. I’m just wondering if there are any papers or hypotheses or feeling as to why so many of us are experiencing symptoms for so long? I’ve heard mass cell activation syndrome. I’ve heard ME/post-spiral syndrome. A bunch of other ideas as to why so many people are still sick so long after the initial infection. So looking forward to hearing a little bit more about that. Thank you.”
[23:07] Angela Rasmussen: Yes. So there’s different hypotheses depending on which organ system is primarily affected. So let’s go with shortness of breath that this person’s reporting, and talk about the respiratory sequelae first. One of the things that we do know very well from both human patients and from animal studies is that SARS coronaviruses, both classic and SARS-2 cause fibrosis and scarring in the lungs. And also, we know that respiratory viral infections can essentially reprogram your inflammatory responses, and that’s how asthma is thought to occur. Basically, the viral infection itself changes the way that your body responds to these types of infections. And it can rewire that signaling to basically cause these inflammatory reactions. Mass cell activation syndrome is thought to be involved in that, for example. So it may be that for people who are experiencing these types of long haul respiratory syndrome, it could be a combination of permanent damage that’s done to the lungs by the scar tissue formation. It could also be a reprogramming of sort of the inflammatory responses in the airway. For the post-viral ME syndrome, that’s chronic fatigue syndrome, essentially, and that’s thought to be caused by much of the same type of phenomenon just in a different tissue. So sort of a reprogramming of the way your body would normally respond to an inflammatory stimulus — in this case, a viral infection — it might keep some of those inflammatory signaling molecules expressed in ways that they shouldn’t be. It also might mean that you respond to an irritant or a stimulus in a way that’s not helpful or that’s aberrant. So that’s really kind of thought to be the basis for some of these long-term inflammatory conditions, regardless of which organ system is affected.
[25:03] Andy Slavitt: Are they treatable? I mean, if you have chronic fatigue syndrome, is there a medication or some other treatment therapy you can take?
[25:11] Angela Rasmussen: So for chronic fatigue syndrome specifically, there are numerous treatment regimens, but there’s really not that much still known about chronic fatigue syndrome. And there are really only like 10 or 15, there’s a handful of different specialists who actually specialize in treating chronic fatigue syndrome. So that’s very much a moving target. But diseases like asthma, certainly there are many known treatments for that. And the more we learn about how this programming works, the more you can target specific molecules within those pathways governing it, treat them and fix the symptoms. I myself am asthmatic and I take, you know, inhaled steroids, and that works very effectively for me. Other people with more severe asthma might need a different medication, but we do have treatments for some of these types of chronic inflammatory disorders.
[26:04] Andy Slavitt: We have a similar question from somebody about sense of smell. This is Laura Bond, she asks, “can you shed any light recommendations, anything for those of us who are still experiencing loss of smell months later?” She’s at 10 weeks. She’s done two rounds of steroids and she still can’t her doctor to refer her to an ENT. The answer of there’s nothing we can do, so why try is really frustrating. I’m trying smell training. But what hope is there? Is there anything else to do?
[26:34] Angela Rasmussen: So that’s a really tough one because we still don’t know the mechanism by which anosmia is being caused. If it’s being caused by actual killing of the neurons that regulate the sense of smell. there’s probably nothing that you can do. If it’s being caused by an inflammatory condition that somehow altering their function, then there might be something that you can do. But unfortunately, because we don’t really know what’s causing that, actually, whether it’s because the neurons are being killed by either the virus infecting them and killing them, or by the immune system targeting those cells and killing them if they get infected, or if it’s because of some type of weird, you know, immune system thing that is affecting the function of those cells. Until we can figure that out. We don’t really know how how we could treat it or if it’s treatable.
[27:24] Craig Spencer: So it was interesting because early on in April, mid-April, we started having a bunch of people come to us talking about losing their sense of smell and losing their sense of taste. And we recognized pretty early on that this was related to COVID. It’s something that we hadn’t been on the lookout for. We talked about fever, cough, shortness of breath. But so many people saying I lost my sense of smell. It was always pretty profound. What we saw is that the overwhelming majority of those people had resolution of their symptoms usually within two to three weeks. And that’s, you know, 80, 90 percent of people. It’s unfortunate to hear that she’s continuing to have symptoms 10 weeks out. But thankfully, the overwhelming majority of people who get this have some resolution, you know, almost complete or near resolution within the span of three to four weeks.
[28:14] Andy Slavitt: We’re pulling for you, Laura. Another question from Laura Buckley. She really wants to know is, is her long-hauler status contagious, like it could be like tuberculosis? What do you think?
[28:29] Angela Rasmussen: So far, we don’t have any evidence that people with long-hauler COVID are contagious. They don’t appear in many cases where they’ve been tested to have high viral loads or any detectable viral loads. It really does appear to be the result of being infected, not the result of having an ongoing infection. That doesn’t rule out the possibility that, as we were talking about earlier, that there might be, you know, a place that the virus is hiding out and persisting in an infection, but they don’t appear to be shedding virus. They’re probably not contagious.
[29:04] Andy Slavitt: That’s helpful to know. Hey, that’s good news. I mean, don’t let anybody tell you you don’t have good news.
[34:40] Andy Slavitt: What people really want to know is what percentage of people who are getting COVID are ending up with some sort of continuing symptoms? What does the evidence say, observational studies? Or even if you had to triangulate a bit? People pick these observational studies, and I’ve heard some people say, “80 percent of people have structural changes to their heart.” Right. And then you have other people that say, “well, it’s 80 percent of people who are a certain age.” And, of course, all of them are experts via Twitter. So since the two of you actually know something — and I want to try to pin you down to at least a ballpark range. What does it feel like?
[35:18] Craig Spencer: Well, I think even looking back at previous post-viral illnesses, you have a range of around five to 10 percent of people that, at least in the kind of subacute or even the chronic phase, continue to have some symptoms. What we saw with a CDC study that was put out on long-haulers a month ago was that 35 percent of people had not returned to their usual, their normal state of health in the span of two to three weeks after symptom onset. We’re seeing a lot of other studies, one from the U.K., one from France, some other indications from studies in the U.S. that around 10 percent of people are not coming back to their normal state of health within the span of three to four weeks. Now, likelihood is that many of these people will eventually have near resolution of their symptoms. But what we need to think about is that here in the U.S., we’ve already had over six million diagnosed cases. We’d likely have, you know, five to 10 times more than that. So if even, you know, 10 percent of 30 million cases have some longer-term symptoms lasting four weeks, eight weeks, 10 weeks or more, you’re talking about millions of people that are going to be impacted by this. And you have to assume that at least a small percentage of those will have chronic longer-term issues that will require longer term follow up and longer term medical care.
[36:39] Andy Slavitt: Angie, anything you want to add?
[36:41] Angela Rasmussen: Yeah, I would just completely agree with that. I think that whatever the percentage ends that being, and I’ve seen the same range as Craig, I’ve actually seen like five to almost 50 percent, depending on the definitions of what long-term severity is in the timeframe that people are talking about. Even if it’s a low number, even if it’s like, let’s say 10 percent, the scale with which this virus has infected people — I mean, not just in the U.S., but around the world — means that we might be looking at a really substantial portion of people who are partially or completely disabled compared to their physical state before they were infected. And that’s going to be a whole separate, huge public health problem on its own. And I am including people with potential psychiatric sequelae, as well as people who have maladies that are more physical. I think that it’s going to potentially be a huge thing that we need to deal with in terms of the number of people who will be needing long-term care or therapy as a result of them having COVID.
[37:50] Craig Spencer: Can I clarify one other thing here because I think it’s important. It’s important to know, as Angie pointed out, there is this big difference between, you know, some studies saying around 10 percent. There was a study that was done in Rome of hospitalized patients showing that, you know, 87 percent of people two months after they were discharged from the hospital were continuing to have symptoms, 55 percent of them had three or more symptoms. That is obviously a sicker population. They were hospitalized. But this isn’t just confined to people that were really sick and were in the hospital or put on a ventilator or on oxygen. That same CDC study showed that 20 percent of 18 to 34 year olds who got COVID that had no underlying comorbidities continue to have symptoms at two to three weeks out. Now, one of the issues that we’re having is that there is no consensus definition for COVID long-haulers, chronic COVID. You know, there have been some that have suggested if you continue to have symptoms more than two to three weeks after the onset of your initial illness, that you’re a long-hauler, you have this long COVID. There’s some researchers in the UK that have said after the span of around eight weeks, this is considered more like chronic COVID. We’re gonna have to come around and have some consensus about how we talk about this illness to really think about how we research it and approach it going forward.
[39:07] Andy Slavitt: OK, I’m going to finish up with a couple of questions. And I may ask each of you a slightly different question. Although feel free to answer the one I give to each other. Craig, the question for you. Let’s go very personal. Very micro. Very individual. We’re talking to a family member who has someone who had a bout with COVID and they’re just continuing to be sick and show symptoms in some form. And I know that it’s a very general question, but this is a situation that a lot of family members are facing. What advice do you have? Is there a one, two, three? Are there rules of thumb? That person’s listening to the show right now. What should they do?
[39:49] Craig Spencer: I think what you need to do is recognize that this recovery process is unlike a lot of other illnesses that we’ve seen or that we’ve heard. You know, there’ve been some survivors who describe it as almost like a dimmer switch. Some day you turn it up higher and then some days it gets lower and then it gets ramped back up again. Others describe waking up every day and putting their hand in a bag of symptoms and pulling one out. And that’s how they’re going to feel that day or for the next couple days. I think really understanding that just because you or your family member or someone you know is a few weeks post-COVID, when the majority of people have already recovered completely, that doesn’t mean that a lot of people still aren’t in that process of recovery. So checking in with people, asking them how their recovery is going as opposed to saying, hey, have you recovered is really important. And it’s, I think, an empathetic and just a really smart way to let people know that they’re being heard and that their illness is something that is continuing to impact them.
[40:47] Andy Slavitt: Is there a type of specialist or type in a treatment or type of clinic that they can look out for? We could put them in our show notes. Is it only in cities like New York and San Francisco? What’s your thought there?
[40:58] Craig Spencer: Well, this is one of the big problems right now is that, especially early on of cases, was in places like New York City there were a lot of people that smartly recognized early on that there was going to be this big cohort of people that were going to need longer-term care. But even here in New York, there’s the Mount Sinai post-COVID care clinic that has too many patients, more people that want to go there than they’re able to accommodate. This is going to be the same in many other places all throughout the country that may not have access to the same specialty care. So what you’re finding is a lot of people are sharing among their own support groups that aims at people that actually just believe them. And I think that’s the first thing that people want. But what we’re finding and what the recommendation, especially for primary care providers, is to have a whole-patient approach. It may be that you need to see a cardiologist, but you also need to see a pulmonary doctor. You may need to see a neurologist. Having someone to kind of quarterback that care that not only believes you, but is able to help recognize that it’s not just one or two symptoms. It may be that you need multiple providers involved from mental health to neurologists to cardiologists, and making sure they’re on the same page about how this disease can kind of relapse and remit and have this different presentation with different people.
[42:11] Andy Slavitt: OK. And Angie, the question I want to ask you is one that I got from Heather. “I’m a COVID long-hauler. I’ve been studying and working with other doctors, health professionals and reading a lot of the pre-prints to try to get a handle on what is going on in long COVID. My question is, if the host response is what COVID-19 is causing for long covered, why are we not investing in funding more studies and work on known strategies that work for an overactive immune response? Old drugs could be used for a new purpose?” So that is really the question for you, very well stated. How should we be studying this? How should we be funding this, etc.?
[42:56] Angela Rasmussen: Well, first of all, I completely agree with that. I’d like to know the answer, too, as to why we’re not funding more research into the host response. And that’s partly selfish, considering that’s exactly what I work on. But it absolutely does need to be funded more. We need to, as I think Heather said, we need to be focused more on looking at what we already know about immunomodulatory drugs, or drugs that have some type of effect on the immune system, so that we can see once we start to sort of clarify what these pathways are that are causing this disease, so that we can take things that we already have rather than creating new drugs from scratch and potentially applying those. And that would be something that would be relatively quick to do. We know how to measure host responses very well using omics technologies, and those technologies are cheaper and more accessible than they’ve ever been. There are more people capable of analyzing that data, and we have all of this data on these drugs that already exist. So this is something that needs to be done.
[43:59] Andy Slavitt: I have no idea what omics technology is.
[44:01] Angela Rasmussen: Omics technology is sequencing. And that’s where you basically look at every single gene that’s being expressed in a given type of tissue. So if you have a blood sample from a person, you can look at all of the genes that those blood cells are expressing. In the human genome, there’s about 22,000 coding genes. So going back to pattern recognition, you can find patterns and you can use machine learning and AI is one approach to find patterns that are associated with certain diseases. If you can reverse those patterns, or modulate them so that they’re more like a healthy person, you might have a way to treat some of these diseases by modulating the host response. Did that make sense?
[44:44] Andy Slavitt: See, every day I thank God for smart people.
[44:55] Angela Rasmussen: Yeah. Well, every day I’m thankful to be reminded that I need to to find better ways of communicating about it.
[45:02] Andy Slavitt: You guys are fantastic. I want everybody listening to just hear a couple of things that I’m taking away from this. One is very, very likely, vast majority of people, if you have covered, you’re going to get better. If you’re not getting better, that is OK, too. That is real. There are people that can help you. There will be more and more people that can help you. This will be increasingly studied. There are great groups online of other patients. As usual, patients will know before any of the rest of folks do what the right thing to do in the places that go. So please find those areas. There will be research done in this area. There will be great work done in this area. We’ve got wonderful people like the two of you who are very focused here, getting answers to these questions. We will keep them front and center. I am going to focus on — and I will probably follow up with you guys — on figuring out how to introduce a bill or some sort of legislation. I’m sure there are many that are taking shape already that will get funding for COVID long-haulers, that will keep people like Angie rolling in dough so she can do the work that she needs to do to help all of the rest of us, possibly at the NIH, possibly somewhere else, we’ll see where that belongs. And so we are not quitting. We’re not giving up on you and we believe you. How was that for summary? What would you guys add? First, we’ll go to Craig.
[46:25] Craig Spencer: Sure. I think that’s a perfect summary. I do want to point out that there has been legislation already introduced by Jamie Raskin in Maryland, legislation that would expand and coordinate NIH funding to basically address this issue. I do think this needs to be done at the higher health body level. So the CDC needs to be looking to this a lot more. I know that long-haulers had a call last week with the World Health Organization, who is also committed to looking into this. I think your summary is great. I think the most important thing for patients, for providers, for families, for everyone, is just to recognize that there is a big subset of this population who is continuing to have symptoms and may continue to have symptoms for quite some time. Yes, the majority of people, thankfully, who get COVID get better. But there’s going to be a lot of them, hundreds of thousands, if not more, who will likely be struggling with this long after the pandemic is over. So it’s important for us to really be sympathetic. Be open. Be thoughtful. Try to be caring and understand to that, because the biggest issue many are having right now is really just being believed.
[47:25] Angela Rasmussen: Yeah. I would second that and I would just say that beyond even believing patients, which, as Craig said, is really a major hurdle that can’t be understated, because we’ve already seen this happen with other chronic inflammatory disorders and chronic pain disorders, is that this is a really complex problem and it’s going to require complex solutions that don’t fall within a single scientific or medical discipline. So we’re going to not only need providers to believe patients, but we’re going to need providers and physicians and scientists across multiple areas of expertise, so virologists, immunologists, all the different medical specialties, to work with these patient communities to solve this problem. Because it’s really not going to just be experiments in a lab or a clinical observational study or a meta-analysis or let’s throw some A.I. at it. It’s really going to take a concerted effort from people with experience all across the board. So I would just encourage people to think of this as a problem that’s going to take a village, or really a whole country to solve, a whole world, an entire community of people from different areas. It’s not something that we’re going to fix overnight, but it is going to require working together.
[48:56] Andy Slavitt: I hope that was a helpful toolkit episode. Let me tell you what we have coming up. We have on Wednesday our deep dive into the Food and Drug Administration, and the very controversial things going on over there with two former FDA commissioners, Rob Caliph and Mark McClellan. Then next week, we have two really amazing episodes. The first is a toolkit episode on testing. We will be answering your questions about testing and where that’s going. And then Wednesday, former presidential candidate and new podcast host Julián Castro. And we are going to have a special Labor Day episode, and we are going to talk, I think, at some length about the working men and women in this country, but also about Julián in his career and how people are faring up in this pandemic. Thank you for listening. I so appreciate you.
[50:07] Andy Slavitt: Thanks for listening In the Bubble. Hope you rate us highly. We are a production of Lemonada Media. Kryssy Pease is our producer. Ivan Kuraev is our editor. Jessica Cordova Kramer and Stephanie Wittels Wachs executive produce the show and run our lives. Music is by Dan Molad and Oliver Hill. You can find out more about our show on social media @LemonadaMedia. And you can find me at a @ASlavitt on Twitter or @AndySlavitt on Instagram. If you liked what you heard today, please, please, please tell your friends to come listen, but from a distance. And for now, stay safe. Share some joy. And we will get through this together. And #StayHome.