Everything We Know about Long COVID
While COVID caseloads are decreasing in many parts of the United States, many people who have been afflicted throughout the past two years of the pandemic are still suffering with what is commonly called “Long COVID.” COVID-19 isn’t the first virus to cause long-term illness, but Andy digs into what we know — and don’t know — about these lingering symptoms. In Andy’s conversation with two experts — Yale’s Akiko Iswasaki and Mount Sinai’s David Putrino — we’ll learn more about hypotheses for why certain people don’t recover fully from the virus, how Long COVID differs from a lingering infection, and what rehabilitation techniques seem to be working best.
Joining Lemonada Premium is a great way to support our show and get bonus content. Subscribe today at bit.ly/lemonadapremium.
Support the show by checking out our sponsors!
- Click this link for a list of current sponsors and discount codes for this show and all Lemonada shows: http://lemonadamedia.com/sponsors/
- Throughout the pandemic, CVS Health has been there, bringing quality, affordable health care closer to home—so it’s never out of reach for anyone. Because at CVS Health, healthier happens together. Learn more at cvshealth.com.
Check out these resources from today’s episode:
- In the Bubble is nominated for two Webby Awards! Vote for Andy in the Best Host category here: bit.ly/VoteBestHost
- Vote for the show in the Health & Wellness category here: bit.ly/InTheBubble
- Read the White House’s memorandum on Long COVID: https://www.whitehouse.gov/briefing-room/statements-releases/2022/04/05/fact-sheet-the-biden-administration-accelerates-whole-of-government-effort-to-prevent-detect-and-treat-long-covid/
- Find a Long COVID center near you here: https://www.beckershospitalreview.com/patient-safety-outcomes/13-hospitals-health-systems-that-have-launched-post-covid-19-clinics.html
- Find the full stories of the Long COVID patients heard in this episode here: https://www.npr.org/2021/11/18/1056987438/for-some-patients-long-covid-is-their-new-reality and https://www.kcrw.com/news/shows/greater-la/coronavirus/long-covid
- Order free at-home COVID-19 tests through the USPS: https://special.usps.com/testkits
- Find a COVID-19 vaccine site near you: https://www.vaccines.gov/
- Order Andy’s book, Preventable: The Inside Story of How Leadership Failures, Politics, and Selfishness Doomed the U.S. Coronavirus Response: https://us.macmillan.com/books/9781250770165
Stay up to date with us on Twitter, Facebook, and Instagram at @LemonadaMedia.
For additional resources, information, and a transcript of the episode, visit lemonadamedia.com/show/inthebubble.
Mandy Cohen, Andy Slavitt, Akiko Iwasaki, David Putrino, Speaker 3, Speaker 4, Speaker 5, Tim Kaine
Tim Kaine 00:00
It’s not painful and it’s not even like when your leg falls asleep that’s like really annoying. It’s not that bad. It’s about halfway to that. But it just never goes away.
Andy Slavitt 00:09
So it was a pins and needles kind of sensation.
Tim Kaine 00:11
Yeah, pin pins and needles tingling. The other thing is that I was getting rashes that would pop up and disappear. And instead of that, that all went away. But instead of the rash is what I get. It’s I call it like a heating pad phenomenon where I’ll just feel like somebody’s put a heating pad on my lower back or in my arm, turns it on for 20 minutes, and then it fades away. And that is not unpleasant at all, but I have sometimes like what’s going on?
Andy Slavitt 00:53
Welcome IN THE BUBBLE, this is your host, Andy Slavitt. It’s Wednesday, April 13. Caleb’s birthday, Caleb would be Zach’s brother, my oldest son. Today’s episode, as I promised is on loan COVID. We had an announcement from President Biden last week about a major initiative that the country is going to undertake unlock COVID We really wanted to understand what’s happening because not only are those announcements important, but actually our knowledge of what’s happening with long COVID has advanced quite a bit over the last few months. And we have two great guests on today, which who I’ll introduce in a moment. But first, I wanted to introduce my very good friend that recently retired, secretary of health from the state of North Carolina, my wonderful friend Mandy Cohen, who’s a doctor, nice to have you here, Mandy.
Mandy Cohen 01:40
Great to be here. Andy, thanks for having me.
Andy Slavitt 01:42
You’re literally in the bubble.
Mandy Cohen 01:44
I am literally in the bubble, everyone. It’s exciting.
Andy Slavitt 01:47
I think this is the first time we’ve had someone like in studio, since we’ve launched the show because you know, the pandemic, right?
Mandy Cohen 01:54
Well, I’m happy to be here, out in California. And it’s nice to actually be able to see people together. It’s great that we’re getting to the other side of things with COVID. I’m vaccinated and boosted. I’m tested. Good to be here.
Andy Slavitt 02:08
Excellent. Now, you and I used to work together, didn’t we?
Mandy Cohen 02:10
We did work together at the Centers for Medicare and Medicaid Services; I was your chief of staff and Chief Operating Officer and learned a ton about navigating large organizations and leading through crisis.
Andy Slavitt 02:24
And then you went on to bigger, better things. And you just got through running the entire pandemic response for the state of North Carolina. Not that it’s over. But what was that like?
Mandy Cohen 02:34
So after being able to work with you I left in was in North Carolina for the last five years as Secretary of Health and Human Services last, obviously, to were of COVID. It was intense. It was an intense time for everyone. Everyone’s life was turned upside down. But what a privilege to be able to lead during that time and frankly, learned a lot from you, Andy about how we led through the healthcare.gov crisis and some other big challenges we faced at the federal level brought all of that learning to the state of North Carolina, I felt grateful. You know, being a doctor, I had a public health background, I’d lead through crisis, it was like the universe put me there. And I was so lucky to have an amazing team and particularly a fantastic governor to work for in Governor Roy Cooper. And I think the two of us made a great team and particularly proud of our work related to the equity. And the way we lead with equity through the COVID crisis, and really figuring out how we can help every single person in North Carolina get through that crisis.
Andy Slavitt 03:37
So just Google Mandy Cohen, if you want to know how incredible she is, I think she was Tar Heel of the year that you could tell from that voice. She wasn’t born in North Carolina. I want to ask you one thing. And I want to before we play some clips and get into the topic of long COVID. Would you say that states coming out of the last couple of years, now we’ll have some of the muscles necessary to flex for future public health crises. And I asked this in the context of, you know, the part of the country that probably did the best in terms of the quickest and most aligned response around long COVID was San Francisco not I don’t think just because it’s a liberal Bastion, and people are have all kinds of liberal values, but also because they had real infrastructure leftover from the HIV AIDS crisis. And people there really kind of knew how to happen to gear and deal with infectious diseases. And I think one of the key questions is, does the experience that we’ve had as a country better prepare us so the next time something happens, you think states will be able to swing into action?
Mandy Cohen 04:39
Well, Andy, I think is a really important topic and probably one you should spend a whole show on. But what I would say is that states did a really tough job, but they put a lot of infrastructure together in place with duct tape. And the question is, is that duct tape going to form into real infrastructure and lasting infrastructure? Or is it going to fall apart and wither on the vine and I think it could go either way. And I think it both depends on are there resources there? And is there talent and commitment from leadership to make sure that what we have learned stays in place and we can build upon it, but it is going to take intentional effort to make sure that that duct tape doesn’t fall away?
Andy Slavitt 05:16
Yes. And by the way, you could do pretty much frickin anything with duct tape. It’s pretty incredible thing. So maybe we have an episode where opportunities to amazing guests talk about long COVID. And I think people have been hoping for this episode for a long time, because I think there’s been so little attention paid. And we had a really memorable week in that there are some big initiatives and announcements made by President Biden. But before we move to their guests, our production team went out and talked to some folks and also gathered some tape from other conversations. So we could play for you. What some people with long COVID are saying it’s you get a sense of what that experience is like, let’s listen to them. And let’s talk about it.
Speaker 3 05:56
I was really active and social and to go from that to basically being homebound and having to calculate the energy that I have for just the basic activities that I took for granted before. How do you wrap your mind around that?
Speaker 4 06:15
I was acting like somebody who was getting better. About three or four weeks later, I had a very strange episode when I was doing some work in our garden digging up some weeds and suddenly I can’t breathe, my chest is so tight. I feel like I’m having a heart attack.
Speaker 5 06:33
I still have significant fatigue. Brain fog, which actually presents itself often is in in stuttering and difficulty finding words. So I apologize if that happens. Shortness of breath and heart palpitations upon exertion, chest pain, I started having seizures, temperature dysregulation, body aches, menstrual irregularities, disturbed sleep, those are the main ones.
Andy Slavitt 07:01
So Mandy, maybe just as a clinician, and as a policymaker, just help us interpret what we just heard.
Mandy Cohen 07:09
Well, first, it’s devastating to hear that things we know, which is unfortunately for some COVID is not a short experience. I will say personally, I have a very close friend in North Carolina that is also experiencing symptoms of long COVID. So you know, we both have to understand this from a clinical perspective, what are the ways that we can intervene to make sure folks are getting better, but also what are the policies we need to put in place around insurance coverage and other things that can help folks make sure that they can get the care that they need.
Andy Slavitt 07:45
What’s great about our two guests today is one of them is doing leading research at Yale University, which is a place that Mandy happens to know well, and her name is Akiko Iwasaki. She’s an immunologist, Professor of immuno biology and Molecular Cellular and Developmental Biology, Yale University. In other words, someone who is pretty smart. She’s really been at the forefront of understanding what’s going in our bodies when we get plunk COVID symptoms. And then our other guests today is David Putrino. And he’s the director of rehabilitation innovation for the Mount Sinai Health System. And he is really doing something quite fascinating Mandy, he has been, they’ve gave essentially an app to people who came in with COVID symptoms. So they continue to report on their symptoms. And as you’ll hear, when he kept on the show, there was a lot of people who didn’t give the app back because they kept reporting symptoms. And so he actually established quite a database and a knowledge center of the symptoms people are having was able to draw some conclusions about what those symptoms pointed to, and even better, has been able to start treatments that address those symptoms. And he’s absolutely amazing. And I think if you know somebody like your friend, Mandy, and as people on the show may know, I’ve talked a little bit about our son, Zach, who have been experiencing these symptoms, the show I think will hopefully give you a great understanding, but also, more importantly, kind of the state of the art in what we know and what we’re seeing in symptoms and what works to help and there is there is some hope there. So maybe before we get to our guests, I have to do something really ridiculously embarrassing, which is beg people to vote for the show for the Webby Awards. As people may know the Webby Awards are the award show without Will Smith. I am going to tell you that we’ve been nominated in two categories for these Webby Awards. Now we need people’s help to kind of vote for them. Vote for us if you want to and if you think we’re okay and if you’re willing to I gotta put like all those things that I feel ridiculous. I’m gonna tell you how to vote for a second. But I also want to update you that in these two categories, the show IN THE BUBBLE is dominated in the health and wellness category. We’re currently in second place, with 21% of the vote, being beaten out by somebody named Jay Shetty. On purpose. He’s got 55% of the vote, so he doesn’t really need your votes. And then we were honored to be nominated for the best host. And there we are trailing Seth Rogen by three points.
Mandy Cohen 10:34
Seth Rogan’s, you know, big time. So the fact that you’re number two to that, that’s, that’s awesome.
Andy Slavitt 10:39
Well, I wish I was number two, but we’re also buying Conan O’Brien.
Mandy Cohen 10:42
Oh, Coco, tough, tough competition.
Andy Slavitt 10:45
Yeah, yeah. But we’re ahead of some other people. Anyway, if you want to vote for us, there’ll be a link, you can click on the show notes, or go to vote that webby awards.com anytime between now and April 21. And we know that with the help of you and your many, many friends, we can kick Seth Rogen behind. Okay, that’s out of the way that was embarrassing. Now the part that people actually listen to the show for, let me introduce our great guests.
Andy Slavitt 11:21
Akiko would you like to be referred to on the call is Dr. Iwasaki or is it Akiko?
Akiko Iwasaki 11:27
Akiko’s totally fine. Thank you.
Andy Slavitt 11:29
Okay. And how about you? You David, or are you sir Putrino.
David Putrino 11:34
I was gonna say Lord Putrino, David is fine.
Andy Slavitt 11:39
So I guess we’ll know we have a very casual show with very impressive and prominent guests. And they’ve agreed to go by their first name today. And they’ve agreed to call me sir. And that’s the way it works here. Now, it’s really great to welcome you both Akiko and David. You know, this is a, I guess this is an important week, maybe even a pivotal week in the what will be interesting history of long COVID. In the President Biden announced some initiatives that will, really are intended to address some of the major issues. And I know for a lot of people, it is just really important to hear those words coming out of leaders. You two are experts. And I’m wondering if maybe before we get started, you can even just tell me in the beginning with you, Akiko kind of what your, what your exposure has been to long covid patients, long Covid research, so people could get a sense of the perch from which you speak.
Akiko Iwasaki 12:40
Yeah, thank you for having me, Andy. So I’m an immunologist. I’ve been studying infection with viruses and how our host immune responses respond to different types of infection and protective immune responses and vaccine development. So when COVID hit in early 2020, we pivoted to doing research on COVID patients and then developing animal models to study the mechanisms. And it wasn’t until the summer of 2020, that I started hearing about long term consequences of people who had even mild COVID. And in fact, one of the first articles I read was by Ed Yong, and he was interviewing me also for this article on long COVID. And that’s where I saw David’s name. And I and I read about David since then, and I thought, wow, I’d love to be able to work with this person to do research on long COVID. And that’s how it all started. So yeah, I’m really happy that David and I are on the same panel here.
Andy Slavitt 13:48
In the bubble is really about making dreams come true like that, Akiko. It’s an honor also to talk to you, tell us a little bit about your role and your exposure to long COVID. How you’ve been approaching the issue of Mount Sinai?
David Putrino 14:02
And yeah, thank you so much for having me. Similar to Akiko, when COVID hit myself and my team were really concerned with acute response. We took a different path to Akiko because Akiko’s brilliant and gets to do all of these amazing basic science animal model projects. We were focusing on acute clinical response, and we launched an app called precision recovery, which was just providing anyone who needed it. Remote Monitoring of symptoms for acute COVID. And that initiative launched in March 15th of 2020. We had an app already set up for acute monitoring, except a different style of patients, stroke patients and so it really didn’t take us too much time to change that around for acute COVID patients and sure enough, pretty soon we had a few 1000 patients using the app and we were checking in daily and monitoring patients. And toward the end of April, we started to notice that certain patients weren’t signing off, the majority of patients are signing off after a month. But there was this cohort on our app, it was around 10% of the people we on boarded, who just stuck around and said, I’m not still feeling myself, I’m feeling fatigued, short of breath, my heart feels like it’s beating in my chest. And so I pulled together a team of clinicians and individuals with lung COVID, although we didn’t have the name or the vocabulary for it at that point. And we just started talking about what this might be. And that formed the beginning of our program that has now gone on to treat around 2000 people with long COVID. And in addition to allowing us to do a lot of different clinical research and basic science research to try and understand the struggle, and Akiko has been an incredible collaborator and leader throughout all of this.
Andy Slavitt 16:10
Well, so Akiko maybe you can ground us a little bit in the science, you know, viruses do. Even before SARS-CoV-2 there are people who have a viral symptoms that do linger, and that have lingered in past viruses. Can you tell us a little bit about how that happens? And what’s it work? Sort of what we think is going on, or at least some of the leading theories?
Akiko Iwasaki 16:34
Absolutely. So it COVID is not the only virus that causes long term symptoms. And, in fact, there have been many other viruses and sometimes even bacteria, and parasites that can lead to similar kinds of very long-term symptoms where people are fatigued and cannot recover. And for instance, Ebola virus and influenza virus, EBV. There are many examples of this. And currently, we don’t know how these infections lead to long term symptoms, there are four hypotheses that we are working around, the first one has to do with virus that cannot be cleared. And it could be the whole virus or parts of the virus, that may be hiding in tissues, that somehow not accessible by the immune system to clear the virus, okay, so that type of persistent virus could trigger non-COVID. The second hypothesis is if the immune cells that are reacting against your own posters, cells are antigens, that can be activated as a result of inflammation caused by the infection. So this is like the, you know, inappropriate immune response against your own self, that could be happening. And the third hypothesis is a we have, you know, trillions of bacteria in the gut. And those things are maintained through health, you know, diet and lifestyle. However, with COVID, it’s known that some of these bacteria, sort of the composition of the bacteria changes. And when that happens, there’s a lot of impact on the host. So that’s called dysbiosis. And that could be happening in long COVID patients. And finally, it could be the tissue damage that people suffer from during the acute phase that when it’s repaired inappropriately, can lead to long COVID. And that may be happening more so within the patients that are had severe COVID, who had not been intubated or have had, you know, severe injury from the infection or the treatment. So we’re considering these four possibilities altogether.
Andy Slavitt 19:18
David, you’ve got the appears like the app that almost a lens from the other side, a lens from what people talk about as real-world evidence, you know, what you’re actually experiencing and seeing in people’s symptomatology? Can you describe in the data that you’ve been collecting, what you’re seeing in terms of the symptoms and when, and what they tend to taper off and what symptoms tend to linger and what kind of commonalities you’re seeing?
David Putrino 19:46
Yeah, you know, I wouldn’t necessarily say that we’re working on opposing processes. But I would say that there’s two ways to look at an unknown condition and how to manage it and one is to try and understand the pathophysiology, the underlying thing that is going on with the body’s physiology that’s causing the symptoms that we’re seeing, which is what Akiko is doing brilliantly and what other scientists are doing. And in fact, you know, our team is collaborating with many scientists on this. But the other way of thinking about things is really person facing. What are you presenting to me with? And in the short term, even without understanding, underlying pathology, even without understanding what’s causing these symptoms? What can we do to ease the symptoms, so you’re not waiting, two, three years for any measure of relief. We can start to really attack the problem head on. And the first thing that our collective decided upon when we started to address the patients that were coming to us was the symptoms that we were seeing really mirrored a condition that we call dysautonomia. So dysautonomia is this very blanket umbrella term that we use to describe a dysfunction of the autonomic nervous system, the autonomic nervous system is this part of your nervous system that is under complete, that controls things that we usually think about as under complete autonomous control. You know, things like food digestion, how fast your heart should be, how fast you should be breathing, when you should feel cold, what you should do when you feel cold, like shiver or start to sweat if you feel hot. All of these things that we don’t usually think about our body’s control in a very nuanced way. And if that gets knocked out of balance, and lots of things can knock it out of balance, a viral infection can do that. Trauma can do that. We see a lot of dysautonomia following concussion, or mild traumatic brain injury, for instance. All of a sudden, things start to go haywire. And you start to see incredibly debilitating symptoms like if you move from sitting to standing, all of a sudden you become dizzy, you start having heart palpitations, and that is because ordinarily, prior to the insult to our physiology, our body knew that if you go from sitting to standing, you need to pump blood harder to your brain because now you’re fighting more gravity you’ve changed your center of mass. And so you know, your heart will increase its stroke volume and it will slightly increase your heart rate. Whereas if you have dysautonomia, you go from sitting to standing and suddenly your heart goes, Oh, I know I need to do something here. But maybe I’m going to overcorrect. And so suddenly your heart rate increases by 40 beats per minute and you start to feel dizzy lightheaded, your blood pressure goes haywire. This is you know, a core symptom of dysautonomia. It also causes sleep disturbance, it causes feelings that approximate panic attacks, which is why so many people are getting misdiagnosed.
Andy Slavitt 23:04
Can I ask you the dysautonomia? Is that something that occurs in the brain in a specific part of the body? Or does it not work that way it works with works throughout the body?
David Putrino 23:16
Yes, so the autonomic nervous system runs throughout the entire body, it affects every single organ, every inch of your skin, you know, your ability to make your hair stand up on end, or raise goose pimples that’s all controlled by your autonomic nervous system. So it runs through every cell, every organ, every part of your body, which to me speaks, you know very strongly to why so many of the long COVID symptoms are so diverse across the entire body. And so there is one nerve that we typically think about as controlling a lot of the autonomic nervous system that’s called the vagus nerve. And I think that there is a strong case to be made for the fact that many of the dysautonomia symptoms we see could be as a result of vagus nerve dysfunction. But broadly speaking, because, again, we’ve been really treating the symptoms and not necessarily the underlying cause. We’ve just said, we don’t want to narrow our focus too much. We’re going to talk about dysautonomia in general and we’re going to address dysautonomia with behavioral changes. So there’s a lot of things that you can do to ease dysautonomia symptoms, such as a solid hydration protocol, sodium supplementation, wearing tights around the lower half of your body in order to stabilize blood pressure when you change positions, lots of little lifestyle changes and lifestyle tips that we provide to our patients, as well as autonomic rehabilitation protocols that need to be specially trained with physical therapists because this is dysautonomia is very often misunderstood. As simple deconditioning, long COVID And dysautonomia is not deconditioning, nothing could be further from the truth. And so if you try to treat it with the same old, no pain, no gain, just push through, you know, mindset, you’re going to hike up the sympathetic nervous system, which is that fight flight part of our body that that tells us what to do when we when we get excited. And that’s going to worsen symptoms significantly. And it’s going to cause much, you know, a very strong flare in symptoms. Autonomic rehabilitation needs to be provided, slowly, very patiently, and very piecemeal. It’s frustrating both for the person with long COVID as well as the provider, because we need to move in very small incremental steps. But it does appear to be making a significant difference with a large proportion of our patients.
Andy Slavitt 26:09
Thank you for that explanation. In between the two of you, it’s probably the most cogent five or seven minutes we’ve gotten on this topic, in terms of just understanding what’s happening, we just ask you a few pieces, how universally would you say accepted that understanding that you just gave is David and how recent is the conclusion that this is, in fact, what’s going on? That’s all of this, you know, coming off from this one specific nervous system.
David Putrino 26:49
So I would say two things, I would say that the majority of our patients experience dysautonomia, but I firmly believe dysautonomia to be a symptom and not the underlying cause of COVID. So what I will say is, when we treat dysautonomia, the majority of our patients who make it through the program will experience significant relief, what we’ve seen in our data is, you know, a 60% reduction in fatigue, an 80% reduction in the number of symptoms being reported, increases in activity tolerance, increases in physical endurance. So we see improvements in function. However, I really want to point out very strongly that, honestly, that there’s only a small percentage, I would say, 10% to 15% of our patients who have said, I feel fully recovered. After going through our protocol, the majority of patients say, I feel good now, I feel like I can function. And they always button it with so long as I’m careful. You know, that’s the caveat is, I still need to do everything right. And I express extreme caution, whenever I’m speaking to, you know, whether it be professional societies or government agencies, we can’t mark these people as recovered long, COVID patients, we’ve rehabilitated them from being non-functional to being functional. But that doesn’t mean that they’re recovered. That means that we’ve given them a management plan for some of their most debilitating symptoms. But the underlying cause, still needs to be discovered and still needs to be addressed. And that’s where a keycodes work really kicks into gear. And I also want to point out that there’s about 25% to 30% of patients who enroll in our program, who either drop out of the program, or engage in the program and don’t experience benefit, I don’t want to take away from their experience either. Because we need to understand what’s happening in that 25 to 30% of patients who cannot even tolerate the protocol that we’re starting, and don’t derive benefit from it.
Andy Slavitt 29:06
Got it. Got it, if you’re able to come back and understand that in that experience a little bit more. But to your point, I want to go back to Akiko. And I think one of the things that we’re really pressed to try to understand is this question of I get COVID, how likely is it that I will end up with long term symptoms? How likely is it that whichever one of the four causes, you describe that’s going to be me? And I think probably but the sub part of that question is how does being vaccinated and recently boosted affect that? Do we have a good feel Akiko? We you know, we hear numbers, anywhere from 7 million to 23 million people. 10% of people who get COVID to 50% of people get over. Where do you how do you describe it?
Akiko Iwasaki 29:56
Yeah, so because we don’t have a universal definition of long COVID, it’s very difficult to even count on COVID. CDC has a definition, but it’s not globally used. And so that’s number one is that we don’t really have a great way to define these people. And second, given that there is a variation in the percentages that I’ve seen, anywhere between like five to 30%, of people who’ve got COVID, still have lingering symptoms. And so I think that the truth is somewhere probably in the middle. And so with David’s experience, it’s about 10%. But that’s probably what it is. And it also depends on the kind of population we’re talking about. If we’re talking about people who were hospitalized with severe COVID, who was in the ICU, and were released from the hospital, these are the people that are most likely to suffer along COVID For various reasons, people have been hospitalized, and they tend to be older, and with comorbidities and male dominated, but the younger people who are female, also can get COVID. And these are the people who are more represented in the group of people who have gotten mild COVID or sometimes even asymptomatic COVID. And that turns into long COVID. And that tends to be, you know, women between ages of 20 to 60 or so. So there are different demographics, depending on how you get long COVID. And I think that that really is indicating that there are distinct underlying causes or paths to get long COVID
Andy Slavitt 31:46
Sure. […] David?
David Putrino 31:49
Oh, yeah. I mean, I love what Akiko has been saying, because I think it really puts the need for nuance out here, because the CDC made unnecessarily broad statement about Pasc or long COVID. And they’ve completed the two terms, they’ve said pasq, you know, post-acute […] of COVID is the same as long COVID. And I think that that’s important right now, because we don’t have a biomarker, it’s a clinical diagnosis that we need. And we need to make sure that everybody is taken care of if they’re experiencing lingering symptoms. But I think that we do need to eventually make a differentiation between people who have this progressive syndromic, long COVID, which I think that a keyguard, myself, much more engaged in studying, versus people who are experiencing a long tail recovery from COVID as a result of extremely severe disease, or post ICU syndrome. Where, you know, in many cases, these individuals will spontaneously recover, or will respond well to traditional rehabilitation approaches, where whereby, on the other long COVID side, you will see individuals who do not spontaneously recover. So the dogma that you will spontaneously recover is actually harmful. As well as they will not respond to traditional rehab techniques. In fact, they will be worsened by traditional rehab techniques. And so we need to be as we progress, very, very careful about how we pass out these different phenotypes of long COVID.
Andy Slavitt 33:30
Well, I was going to ask that, because I do know, people who have had a really tough time and a longer time kicking some of the symptoms, but do within you know, four or five, six months. And then there’s others we had Senator Tim Kaine on the program at a prior episode. And he’s, you know, he’s experiencing a set of symptoms, which are continual, and it’s all, you know, basically, he would describe it as his skin constantly crawling, and feeling pins and needles continuously throughout his body. Can you help distinguish David between, you know, how often of the 10% that have ongoing symptoms, or just some percentage of those fall off after a number of months? And look one way and what are those folks look alike versus the folks that that are, you know, Warren, Senator canes category that just have something that continues? Is there something else that you can notice about them all?
David Putrino 34:22
The main differentiating factor between the individuals who just have a tough time recovering and have these long tail symptoms, but then eventually do recover versus the individuals who have, you know, I would class to be long COVID Mainly is, in many cases, the individuals who recover eventually, spontaneously, their symptoms tend to match their acute COVID symptoms. So it’s kind of just a milder version of their COVID symptoms that slowly resolve over time, so, you know, they keep coughing for a couple of months on end. They’re feeling slightly tight in the chest and short of breath, they feel extreme fatigue. But they’re not having these syndromic symptoms of relapsing remitting, crashing hard and struggling for days on end to get out of bed. You know, sudden triggers that bring on complete inability to control body functions, they’re much less likely to experience those symptoms, they’re much more likely to just experience, you know, I can’t shake the last vestiges of this thing. And then, you know, over months, they tend to finally shake it and they spontaneously recover. And I’m not to say that that is pleasant by any stretch of the imagination. But we really do need to differentiate those two groups out so that we don’t just throw it out there that eventually you will get better from long COVID.
Andy Slavitt 36:01
As you just said they need to be treated differently. Do we notice Akiko first and then David, that people who are vaccinated or and also if people are more recently vaccinated or boosted? Are they still getting long COVID? Are there any differences? Is it less likely are the symptoms less severe?
Akiko Iwasaki 36:20
Yeah, there was about a dozen studies that looked at that issue. And I think the consensus is that if you’re vaccinated, your likelihood of getting long COVID is about half. It’s not zero, but it’s significantly reduced. There was also a preprint that was looking at the impact of vaccination after you catch the virus. And people who gotten vaccinated within four weeks of infection had reduced risk for developing long COVID. And this benefit lasted for about 12 weeks.
Andy Slavitt 36:56
So if you get vaccinated within the 12 weeks, and scientifically, what does that tell you? And does it help you pick between your four hypotheses?
Akiko Iwasaki 37:05
Yes, it does. So if it is true, that there is a viral reservoir or hiding virus somewhere, you know, vaccine will boost your antibodies and T-cell responses dramatically. So that would be able to eliminate the source of the problem, meaning that they can eliminate this reservoir of virus. And that could be leading to this reduced risk of developing long COVID. But by removing the virus, though, you’re also removing the likelihood of triggering autoimmune disease, because these things usually go hand in hand. So I think it’s telling us something.
Andy Slavitt 37:42
Interesting. David, do you have a perspective?
David Putrino 37:46
I agree entirely with Akiko his take on the literature there. And, you know, the one thing you know, I think is worth mentioning, as we start to talk about phenotyping long covid is that those four or some theories that Akiko has laid out, I think it’s entirely possible that, you know, there are people from each theory that are coming under the umbrella of long COVID because I think that the wide variety of symptoms that we’re seeing in our populations can all be explained by the different theories that Akiko is pointing out. So I think it’s highly probable that some people have viral persistence, other people have auto immunity, you know, other people have dysbiosis these are all possibilities and some unlucky folks have all four.
Andy Slavitt 38:39
Any difference in the type of mutation, does Omicron, do we know if it’s more or less likely to create long COVID symptoms?
David Putrino 38:50
So having seen many individuals who have been newly diagnosed with long COVID following and a more recent COVID infection, versus those who are infected with Delta and Alpha and the original COVID strain I can’t tell the difference symptomatically between the different groups you know, they seem very similar in terms of their presentation.
Andy Slavitt 39:40
So I guess I want to turn now to I’m guessing that we have a lot of people listening who either are in the midst of battling through lung COVID on that journey, or have family members who are and Akiko what can you tell them about the research and the progress and what you’re learning? How would you address somebody? Who’s going through this from your work?
Akiko Iwasaki 40:11
Yeah. First of all, you know, I want to acknowledge that we are very aware of people who are suffering from lung COVID. And we’re working around the clock, David, and I barely sleep, you know, trying to really get to the bottom of this. And it’s really our top mission right now, having said that, research does take time to do it, we’ll do it right. And we’re looking at, you know, every parameter we can imagine, from these patients and trying to figure out what the cause of disease are. So it is taking a long time, well, a long time if you’re a person that suffering from lung COVID. And so I do want to acknowledge that, you know, we are working very hard, but it probably appears very slow pace to someone who’s suffering.
Andy Slavitt 41:04
Is there sufficient funding? Are there sufficient grants that there’s sufficient number of scientists working on this? Do you feel better? Do you feel good? How do you feel?
Akiko Iwasaki 41:11
I think there should be more research, you know, because the more people look at it from different angle, the more answers we can get. And I know there is a lot of investment that’s being made by the NIH. And I’m hoping that would also feel more understanding behind this.
Andy Slavitt 41:31
There’s, for what NIH tells me, there’s I don’t know if it’s dozens or hundreds of grants, and great research going on right now. Can you give us a sense, right now that that this is, that there are funds available. And we have great teams and other teams collaborating and how quickly are you? Are we gaining on answers to the starting with the issues around the cause, and other kinds of things that you’re looking at?
Akiko Iwasaki 42:01
Yeah, so I would say that there are many teams working on long COVID. But I think the national coordination can be much better. And that’s something that David and I, along with many others, you know, wrote a roadmap for the next normal. And that’s something that we argued is that, you know, we need to coordinate the effort, we need to make everything open science, so that, you know, as soon as we’re learning something, we can share that with the community. And people can learn from it and advance their research faster. For instance, if there was a website that we can go to and look at, you know, who’s doing what, then we can collaborate faster and learn faster.
Andy Slavitt 42:45
Got it. Now, if I were in New York, David, and I listened to you, I would say, okay, my question is, how do I get to be a part of this rehab center? But if I didn’t live in New York, I would say, Can you give me a sense of if there are comparable places around the country? And where they are, and we’re more than happy in our show notes to provide links to people for resources. But what can you tell us? David, if you had someone who was going through long COVID, and they live somewhere outside of New York, outside of the area, what would you tell him to do?
David Putrino 43:26
We can provide some resources on long COVID centers that are present around the country. There are long COVID centers that are opening and, and emerging all over, but to a keycodes point, we need much more coordination nationally, to make it a seamless process. We need much more, you know, advocacy, you know, in terms of what would I tell people living, you know, living with long COVID right now is, and families of those living with long COVID is reach out to your senators and say that we need more support. You know, there has been on a government level, there has been some really incredible steps forward in acknowledging long COVID. But I would point out that we still have, you know, insurers denying claims for long COVID Because although it’s been acknowledged as a diagnosis, there is no guidance on how to provide care. And so, so many patients are being told by their insurance. Oh, no, we won’t cover that because it’s not evidence based. And I think that especially for historically excluded groups across America in health care. What we need to focus on right now is how are we going to provide equitable health care for people with long COVID And we need government assistance for that we don’t want to repeat of history with what has happened with disabilities rights in the past.
Andy Slavitt 45:00
Was a really great point. And I would go back and read a little bit from what the White House has sent me on this topic. But how many centers are there around the country that are to do something similar to what you do in Mount Sinai.
David Putrino 45:17
At last count, I’ve been able to track about 20 to 30, reputable, long COVID centers. And, you know, there are states where there are multiple, great long COVID centers of excellence in one state. So when you do the math, you realize that there are many states where there is no Center of Excellence or no center for post COVID care when people with long COVID can get help.
Andy Slavitt 45:44
The centers, the good ones, are they roughly doing taking similar approaches to the ones you’re taking? And we would love to be able to provide people access to those locations?
David Putrino 45:58
Yeah, absolutely. We’ve been working with the American Association for physical medicine and rehabilitation to publish consensus guidelines on how to manage medically, long COVID. And this has been a multi-specialty initiative where we’ve also centered patient voices. So we’ve brought in individuals from body politic and the patient led research collaborative, to assist us in consulting on how to make sure that everyone’s voices heard so that we, you know, don’t create consensus guidelines that are harmful or damaging to patients. And we’ve been working to distribute those consensus guidelines nationwide, as quickly as possible so that we can have some level of consistency in these centers of excellence. And from those 25 to 30, long COVID centers that I was talking about, we have at least one representative from each of those centers joining these consensus meetings.
Andy Slavitt 46:59
Fantastic. And so let’s talk about some of the success I heard you say, I think maybe you said it was somewhere around 60% improvement in symptoms. Did I get that? By batching things?
David Putrino 47:11
Yeah, I throw a lot of percentages out there. But one of the most common symptoms that we have is highly debilitating fatigue. And what we see is that individuals who have been enrolled in our program for a median of 100 days will experience on average, a 60% improvement in their fatigue scores as a primary outcome measure.
Andy Slavitt 47:36
So there is hope. If we get to one of these treatment centers, there’s no guarantees. There’s work involved. But there’s hope. And Akiko I’ve got to believe you keep doing your work, that 60% become 70%, that 70% becomes 80%, that 80% becomes 90%. That’s the work you guys are doing together.
Akiko Iwasaki 48:00
Absolutely. Yeah. So without hope we really can’t push through. And so I do have hope that we will find a pathway that we can interfere so that these people can recover better, in conjunction with the therapy that David’s team is offering, as well as potentially medicines and, you know, biologics or whatever we need to use.
Andy Slavitt 48:28
Yeah, well, look, I think this is an issue we’re gonna keep coming back to, I would love to keep coming back to the two of you. To be supportive, we’re going to attach some of the elements of what is in the President’s announcement last week, to the show notes. And there are several pieces, that all of which you both have addressed on the show. So far. One is more research. Another is supporting more places to for treatment. And, you know, the Centers of Excellence Program, which sounds like it’s a little bit of taking off from what you’d been saying, but they’re including the VA, the Department of Veterans Affairs. In this, they’re going to have some efforts to promote both education and payment to physicians to recognize long COVID, they have an effort through Medicare and Medicaid, as well as the Office of Personnel Management to pay for medical care where there’s COVID symptoms, it’d be interesting to know what you have to demonstrate to an insurance company that you had COVID I mean, I don’t think many people keep their positive tests. And then really importantly, you mentioned David very specifically around disability. You know, this can be a really massive blow to people’s ability to get up and go to work every day and to get up and support their families every day and we have a nice good history with recognizing the needs of the disability community. And, you know, my experience, maybe a little bit of my soapbox from this show is, you know, when the majority of people are ready to move on and say, Hey, I’m tired of focusing on the pandemic, there are so large numbers of people, millions of people that can’t move on and can’t be forgotten, can’t be forgotten by Congress, can’t be recruited by the administration can’t be forgotten by the medical community can’t be forgotten by journalists. And I think this is how a lot of people don’t COVID feel, I think they went through a period of time when they were told what they were feeling wasn’t real. And even as we hopefully get past that, you know, more and more people, I think, recognize that there is there’s real science behind what people are experiencing the resources necessary. So that on an ongoing basis, we have research, treatment, payment, and disability coverage, long term services and supports are fundamental, you know, they touched on all the right topics, and what they released. So they clearly were thinking holistically. But when you double click, and you look at the details, and I don’t know how much time you spent on the fine print, David, what do you see in there that you liked? What you see in there that you think they need to push harder at?
David Putrino 51:25
Yeah, I mean, I think that the main issue that needs to be addressed, and it needs to be addressed quickly, is what specifically does support for COVID care look like? And what will be covered by insurance and what won’t be covered by insurance? And, you know, again, my strong recommendation is that insurance coverage, just like the CDC definition of long COVID is necessarily broad. We don’t know what works right now. But that doesn’t mean that we shouldn’t provide it. And, you know, and we can start to fine tune what is provided later down the track when we have a more narrow diagnosis. Because, you know, when I spoke about history repeating itself, I need, you know, I think I feel the need to remind everybody that when section 504 of the Rehabilitation Act of 1973, was written into law, it took four years before regulation to enforce that act, was also written into law. So although I am incredibly encouraged that we now have a diagnosis code for long COVID and ICD 10 code for long COVID. And we have acceptance of long COVID as a recognized disability under the ADA. We still need extreme granularity on how to cover long COVID care, and what are the consequences for insurers and workplaces that do not support individuals with long COVID Because that is happening across the country. And it’s happening in an unacceptable manner. There are a lot of people being denied care, and denied employment as a result of their disability, which is illegal. But there is no accountability for that right now, because we haven’t written policy into law, about what will happen to enforce these new changes with long COVID.
Andy Slavitt 53:26
So it’s just at the moment when everyone starts to forget that it’s our job, it will be our job to keep people remembering. Really enjoyed this. Thanks for coming in the bubble.
Andy Slavitt 53:57
I’m really grateful to our guests today. I’m really grateful to Mandy Cohen, I’m glad you got a chance to hear from her amazing work that I got a chance to stay close to that she did in North Carolina, and really amazing what’s going on in some of the rehabilitation clinics around long COVID in some of the labs around the country. It’s just nice to know we’ve got smart people working on our big problems. And we do and that’s encouraging. upcoming show next you will hear from us on Monday we’re back with the CEO of Pfizer, Albert Bourla. He was on for a couple of episodes before we’re gonna get him to tell us what type of vaccine they’re going to have in the fall what the data looks like, around Democrats specific variant vaccines, the vaccine data for kids under five, I’m going to be ruthless in that interview. Okay, maybe I won’t be ruthless but I’m going to be I’m going to be tough. Also, Jeanette Khaldoon, who was the Chief Health Officer at the state of Michigan, talking about how inequitably the resources of the healthcare system serve people during the COVID response? You heard man He talks about that at the beginning of this episode. Janay is fantastic. And then we’re going to have an episode around the promise of cures that are going to come from the mRNA platform in other directions. And don’t forget to vote for in the bubble. Thanks, everybody enjoy the rest of your week.
Andy Slavitt 55:13
Thanks for listening to IN THE BUBBLE. Hope you rate us highly. We’re a production of Lemonada Media. Kryssy Pease and Alex McOwen produced the show. Our mix is by Ivan Kuraev and Veronica Rodriguez. Jessica Cordova Kramer and Stephanie Wittels Wachs are the executive producers of the show, we love them dearly. Our theme was composed by Dan Molad and Oliver Hill, and additional music by Ivan Kuraev. You can find out more about our show on social media at @LemonadaMedia. And you can find me at @ASlavitt on Twitter or at @AndySlavitt on Instagram. If you like what you heard today, please tell your friends and please stay safe, share some joy and we will definitely get through this together.