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New York Public Health Now
s3e05 Unraveling the Mysteries and Empowering Patients in the Long COVID Journey
Dr. Geeta Sood joins Department of Health Commissioner Dr. James McDonald and Executive Deputy Commissioner Johanne Morne to discuss the growing public health concern of Long COVID, highlighting the need for comprehensive care and ongoing research.
They explore the diverse range of symptoms associated with Long COVID, from brain fog to POTS, and the need for a comprehensive, multidisciplinary approach to management and care. The conversation also covers the effects of vaccination and antiviral therapies, such as Paxlovid, in helping to reduce the risk of developing Long COVID after a COVID-19 infection.
The Department of Health will also be holding a Commissioner's Medical Grand Rounds on Long COVID on October 13, 2024 at noon - you must register to attend: https://forms.office.com/g/Eus28gsTfk
If you have an idea for topics we should discuss, please let us know: PublicHealthNowPodcast@health.ny.gov
Welcome back to New York Public Health Now Podcast, where we explore the why so you can decide what to do. Greetings again, I'm Dr Jim McDonald, New York State's Commissioner of Health, and joining me today is the Executive Deputy Commissioner here at the Department of Health, Johanne Morne. Johanne, how are you doing today?
Johanne Morne:I'm doing great. Thanks so much. Glad to be here.
Jim McDonald:So, a very interesting topic today: Long COVID. Thrilled to dive into this timely topic, I think, a very important public health topic in particular. And our guest today is our very own Dr. Geeta Sood, joining through the magic of Zoom. So, Dr. Sood, thanks for joining us and for what promises, I think, to be a fascinating dialog.
Geeta Sood:Thanks you so much for having me. I am honored to be here and look forward to talking more about long COVID.
Johanne Morne:That's right, there absolutely is. And you
Jim McDonald:Yeah, Dr. Sood isn't just a physician at the New York State Department of Health, a well, well know, in fact, Dr. Sood is going to be leading us on an important accomplished infectious disease expert as well, but one of your areas of interest is long COVID, and to me, it's a topic that's capturing everyone's attention these days, it's very much top of mind for us here at the New York State Department of Health. You know the lingering symptoms to mysterious complications. There's so much to unravel.
upcoming live event:The Commissioner's Medical Grand Rounds, and that's happening on November 13. There, Dr. Sood is going to be joined by other national experts, and they're going to take a deeper dive into the long COVID complex landscape.
Jim McDonald:Yeah, I'm really looking forward to our Commissioner's Medical Grand Rounds coming up in a short period of time. We're going to get into more detail that we can cover here today, but if you'd like to attend and catch those expert insights, you'll need to pre-register using the link in our podcast description.
Johanne Morne:Yeah, we're really excited. This is an opportunity to get a head start on that discussion.
Jim McDonald:So Dr. Sood, let's start with a little background about yourself. Could you tell us a little bit about your journey and how you became involved in studying long COVID?
Geeta Sood:As many of us, we started with COVID in 2020 when it completely upended our landscape of infectious diseases. I'm an ID-trained physician. I've been in clinical practice since far too long than I want to admit on this podcast, and then started getting involved with COVID in 2020 when the whole world changed. At that time, I started doing some consulting work with you, Dr McDonald, at the Rhode Island Department of Health in COVID infections in long term care settings and in other settings. And I was so impressed and thought so much of your leadership and your mission-driven work that I followed to you to New York State. At New York State, I think one of the first meetings that I had with you, you started talking about how important you think long COVID is, and how much of a public health emergency this is, and how we need to make sure that we are prepared to take care of these many, patients who are suffering from such debilitating diseases. So since then, you and Ms. Morne have been so incredibly supportive in making sure that we can really help our patients that have been suffering with long COVID.
Johanne Morne:Thanks so much, Dr. Sood, and absolutely long COVID, you know, it's been a topic of conversation for quite some time, and continues to to actually grow as far as being a major focus. So can you talk about, how is the condition first described, and then how does the medical community have agreed upon definition along COVID?
Geeta Sood:Thank you. Ms. Morne, such important questions, and I think such a wonderful story. A wonderful story, because like with many diseases that we've seen, it's actually the patients that started noticing what long COVID was, and they started doing that very early in the pandemic, back in April of 2020. Patients started seeing and explaining and even starting their own research on long COVID. So like many diseases, the voice of the patient has just been incredibly important for us to understand what this disease is and where we want to advocate and go further with this. Since then, there's been a lot more national interest and a lot more funding that's gone towards helping patients and also researching this disease. Like you suggested, there wasn't even a definition in the beginning, and it's only recently where we've actually come up with a definition. And it's a difficult definition clinically It's really it's was created by the National Academies of Science, Engineering and Medicine in this year, and it basically states it's any infection associated chronic condition that occurs after SARS-CoV-2 infection and persists for at least three months and can affect many different organ systems. So you can see that this definition is very broad. It includes a lot of different symptoms and it includes a lot of different disorders. So while we're very fortunate to have a definition, it's still a difficult definition to apply in clinical practice.
Jim McDonald:Yeah, it is a challenging definition. I do have to say, though I appreciate how thoughtful it was to put this definition together, because it does, I think, put everybody in the same perspective about how widespread and complex this is. But one of the things I think, I just want to, you know, understand a little better, is, does someone have to have a positive COVID test to be diagnosed with long COVID?
Geeta Sood:So that's such an important issue and question too, and and the answer is no. And part of the reason for that is because we know that many, if not most of us, have already had a COVID infection and may or may not know it. So we know that from sero-prevalence studies that about 70% of people back in 2022 had serologic evidence of COVID-19 infection. With modeling studies, that's been estimated to be about 95-97% so we think that most people have had a COVID-19 infection. So it doesn't really... we don't need to prove that with a positive test, particularly as testing strategies have changed over time.
Johanne Morne:One of the things that I'm wondering, is this unique to our nation? You know, to to the US. Are we seeing long COVID cases and diagnoses in in other countries as well? And is it to the degree that we're reporting it here?
Geeta Sood:Thank you, Ms Morne, also an important issue. Unfortunately, it is something that we're seeing all over the world. The prevalence of long COVID is difficult to be able to estimate accurately, because there are so many caveats to how you define it, what patients you ask if they have long COVID, and many patients don't even know that they have long COVID. So the estimates of how prevalent it is varies dramatically from country to country, from even sometimes location to location within the US. So yes, it is highly prevalent, and it does occur throughout the world. The exact numbers and the estimates are just epidemiologically challenging to very clearly define.
Jim McDonald:Yeah, I'm hoping that it gets a little bit more clear over time. It's great to be talking with Dr. Sood, an infectious disease expert from New York State Department of Health, about long COVID. Dr. Sood, who seems to be most at risk for developing long COVID. Are there certain groups or conditions that increase someone's likelihood of experiencing it?
Geeta Sood:There are some conditions that we do know increase your risk of long COVID, and like you and Ms. Morne pointed out earlier in the podcast, there's a lot that we know about long COVID, and there's also a lot that we don't know yet about long COVID. So many of the risk factors are still being defined, but there are some that we can collectively agree upon that seem to increase your risk of long COVID. One of the most important risk factors is lack of vaccination against COVID 19. So vaccination reduces your risk of long COVID, and there are other characteristics of patients who are more likely to develop long COVID. For example, women are more likely to develop long COVID. People from socio-economically disadvantaged areas are more likely to develop long COVID, as are patients with medical conditions like asthma or diabetes or other types of diseases. If you have had severe, acute infection, you are also more likely to have long COVID. But that doesn't mean people that have mild infection or asymptomatic infection even can not develop long COVID. There's a significant percentage that do.
Jim McDonald:You referenced earlier, the National Academies of Sciences, Engineering and Medicine, they came up with a really, I think, important document about this in the last year, not just defining what long COVID is, but really explaining it. Because it really is still one of those things where, although we're studying it, we're much more... it's not easy to have a conversation about long COVID now with the standard definition. But why don't we get into a little bit about the symptoms? What are the usual signs people should look for if they suspect they have long COVID?
Geeta Sood:This is such a important area, and we are learning more and more about it. And I'm very excited about our Grand Rounds, because we have experts from all over the country who take care of patients with long COVID, who will be talking to us in more detail about what they are seeing in terms of symptoms, managing patients and really helping us learn more about this disease from the front end, including the research that they've been doing. The symptoms are so incredibly varied, which is partly what makes it so challenging to be able to know who has long COVID. And to know how to treat long COVID. So it can be symptoms that range from brain fog to something known as post exertional malaise, which seems to be a very common symptom that seems to be associated with long COVI. As well as POTS disease. When you and I learned about POTS disease, Dr. McDonald, I think we learned very little about it. It was kind of just a small syndrome related to orthostatic hypotension, but we've learned so much more about the complexity of what POTS disease and dysautonomia is that is really informing how we take care of these patients. And we have experts that will be coming on November 13 to tell us even more about that. As infectious disease doctors, and you as a
Jim McDonald:You really bring me back when you talk about POTS disease. POTS disease stands for Postural Orthostatic Tachycardia Syndrome, and it's one of those conditions where it is complex. I mean, when you think about Orthostatic Tachycardia Syndrome, some people notice that a little bit, where you're going from laying down to standing up when you might have been sick and you get really dizzy, but POTS disease really gets into how that becomes much more of a chronic condition and more complicated, and certainly not just associated with dehydration. But I think you're right, there's a lot we're learning about other diseases that will help us someday, I hope, in management of long COVID. One of the points you made earlier, I think to get back to this a little bit, is a big question for a lot of people, if I get vaccinated, am I less likely to develop long COVID? I got my COVID vaccine last month. Hope everybody else is doing that as well. But what are your thoughts on that? Dr. Sood? pediatrician, we, of course, love vaccinations and think that it's such an important intervention to prevent diseases. For COVID 19, there are data showing that getting COVID 19, vaccination and boosters does reduce your risk of long COVID up to about 50% based on observational studies. So that's not a small reduction for a very disabling disease. So yes, vaccination is definitely something that we would recommend, and I recommend that to my family members and friends to reduce the risk of long COVID as well as complications from acute infection.
Johanne Morne:So one of the things that's coming to mind, of course, if anyone has seen on the media, it's sort of catchy, right? Where it says COVID, paxlovid. So what about paxlovid? Right? Does taking paxlovid impact the chances of developing long COVID after infection? Are there other medications that possibly are able to lessen the chance of acquiring long COVID?
Geeta Sood:Ms. Morne, that's such a important and great point, and you're absolutely right. Hopefully, when we think of COVID-19, we also think reflexively of paxlovid. And yes, you're absolutely right. There are data to show that antiviral therapy does reduce the incidence of long COVID If you take it during the acute infection. That's not to be confused with the fact that paxlovid has been studied specifically for long COVID. And in those studies, paxlovid did not seem to directly reduce the symptoms of long COVID for patients that already had it, but for those patients that are suffering with acute COVID, taking paxlovid and even other newer antivirals that are being studied reduces the risk of long COVID up to about 25% so it certainly does reduce your risk of long COVID, and there is a significant impact that antiviral treatment will reduce viral persistence, which is thought to be an important mechanism for long COVID. So all of these antivirals are very important and helpful in preventing long COVID, as is actually Metformin. Metformin seems to have antiviral activity and in patients that are already taking Metformin, or even those patients who are prescribed Metformin that also can reduce your risk of long COVID. So prevention is always a better strategy than treatment, and certainly using antivirals and other medications to reduce your risk and preventing COVID 19 infection from the beginning will be very important in helping us to reduce our risk of long COVID.
Jim McDonald:Yeah, and Dr. Sood, I wonder if we could talk a little bit about the Metformin angle for just a little bit more, because that... it's funny. I read that literature as well. It kind of surprised me a little bit because Metformin, people who have pre diabetes take Metformin. People with diabetes take Metformin. And you know, when you look at how the medicine works, it wasn't immediately obvious to me why that would help. And then I started reading the literature. So can you give me a little bit of understanding of why is Metformin something that people are still studying right now? What's the angle there? If you don't mind?
Geeta Sood:Of course, Metformin seems to have independent antiviral activity, at which is not like you said, something that it's usually prescribed for, or the reason for giving Metformin, but having said that, in robust clinical trials, Metformin does seem to reduce the risk of long COVID And to some extent, ameliorate the acute infection as well. So I think it happens to be a lucky happenstance, particularly for patients who are already taking Metformin, and that's been studied as well, that in people who are already taking Metformin, there is a advantage in reducing the risk of long COVID.
Jim McDonald:Thanks, Dr. Sood. So let's just get into another question here, which is, if someone's had COVID In the past, does that affect their risk for long COVID if they get infected again?
Geeta Sood:That is also something that many investigators have been studying, and something that, of course, will influence how we think about risk of infection. Certainly, the incidence of long COVID has decreased over time, so people who had earlier infection tend to have higher rates of long COVID than people who had infections later, which tends to be associated with lower rates of long COVID. Having said that, for an individual patient, if you've had COVID infection, you have an additive risk of having long COVID with your next COVID infection. So certainly, the cumulative risk seems to increase if you've had COVID more than once.
Johanne Morne:So when it comes to treatment, then, Dr. Sood, what currently is the best approach to managing those, those long COVID symptoms?
Geeta Sood:For long COVID, the symptoms are so varied, and the approaches are still being studied and developed, and I think that's actually been a source of frustration for many patients who suffer with long COVID, and understandably so. I mean, these patients tend to suffer a great deal there isn't immediate curative treatment that's available, and their symptoms are so debilitating and different among patients that understandably, it's incredibly frustrating that there isn't an easy treatment. Having said that, it is a relatively new disease, we only learned about this four years ago, and we're still learning how to manage the many different symptoms that are associated with this. In fact, one of our panelists who will be on the Commissioners Grand Rounds is somebody who's actually written guidelines in the physical medicine and rehabilitation journals on how to manage some of the symptoms in ways that both experts in long COVID but also providers who are in primary care might be able to start to manage some of these symptoms, because, as as you can imagine, there's a large percentage of patients who have had long COVID and are currently suffering with long COVID in New York State, so being able to have many different people help address these symptoms will be very important, and that's one of the things that we're hoping to do in New York state, is to help our providers learn more about long COVID so that they can start the management of these complex patients.
Jim McDonald:Yeah, Dr. Sood, I'm glad we're doing a Commissioner's Medical Grand Rounds on long COVID. It's, you know, something to me that it's an important conversation, but I think as physicians in particular, of course, we get continuing medical education, and sometimes it's about refreshing what we know, but sometimes it's about learning something new. And to a lot of physicians, in particular, other healthcare providers, long COVID, it's new because it is new. So we're going to dive deeper into long COVID with a team of experts. What are some areas at that Medical Grand Rounds you're particularly excited to dialog about?
Geeta Sood:I have to tell you, I'm very excited about this Commissioner's Grand Rounds, because I think we have experts in many different areas, clinical care, research, education that will help lead us and teach us in what's new and what's evolving with long COVID. There are just so many pieces of information that are rapidly being developed that being able to hear from the experts, I think, will will teach us a lot. I think also, most importantly, all of this starts with the voice of the patient. So I'm also very excited that we're going to be starting our Medical Grand Rounds by hearing from a patient, because that's really, ultimately what it's all about and who we are here to serve.
Johanne Morne:who are going to tune into the Grand Rounds live next Wednesday at noon, can listeners expect to hear about the latest research developments or potential future treatments. What should people expect?
Geeta Sood:Hopefully, a little of all of that! So the Commissioners Grand Rounds will be talking a lot about the symptoms that patients present with and management of the symptoms that these patients with long COVID but also about emerging literature. We have Dr. Peluso and Dr. Putrino, who are mentioned at pretty much every academic conference for the bleeding edge academic work that they're doing on the pathogenesis and the treatment for long COVID. So I think this Grand Rounds will actually be a very lovely synthesis of the voice of the patient, clinical care of the patient, and also emerging research on where we need to go next.
Jim McDonald:Yeah, thanks, Dr. Sood. And you know, we're getting ready to bring our podcast to a close today. And is there anything else you think we should mention here? Any resources you'd like to recommend for those who maybe are suffering from long COVID?
Geeta Sood:Thank you for bringing that up. And yes, we Yeah, thanks Dr. Sood for joining us today and for sharing are, at New York State, working to make those resources available via the internet, because there are many, many resources. There are a few things that I do want to bring up for the public in the vein of patient initiated research. There is a website called CureID, which is a really wonderful patient-led resource where patients talk about treatments that they've tried and share their experience. I think there's probably about 500+ case reports on that website, and on that website researchers can go to learn more about the patient experience, like you said Ms. Morne, that certainly is the beginning of everything that we do, and it also allows patients to connect with what other patients have tried to help manage some of these symptoms and diseases. There are a lot of resources that are available and being developed. They just need to be synthesized in a way that we can make it more accessible for our citizens. your insights on the complexities of long COVID. We've learned a lot today, but still a lot in front of us on this. Thank you. I really enjoyed being on the podcast, and look forward to speaking with you again soon.
Jim McDonald:So, again, for our listeners who want to learn
more:We have a special opportunity coming up on November 13, 2024 the Commissioners Medical Grand Rounds. We'll take a deep dive into long COVID with Dr. Sood and other national experts covering the latest research, treatment, and approaches and emerging questions. It's a live event happening at noon, Eastern Time. So to join, you'll need to pre register using the link in our podcast description.
Johanne Morne:It's an incredible chance to hear directly from an individual with lived experience, as well as from experts who are leading the research on long COVID. Be sure to sign up and mark your calendars.
Jim McDonald:And with that, we'll wrap up this episode of New York Public Health now. As always, if there's a topic you'd like to hear more about, reach out by email at PublicHealthNowPodcast@health.ny.gov
Johanne Morne:And to find our latest episodes on Apple podcasts, Overcast, Spotify, YouTube and Google podcasts, just search for the New York Public Health now, or NYSDOH to subscribe and be notified when we release new episodes every other week.
Jim McDonald:And if you're enjoying the show, please leave us a review. For New York Public Health Now, I'm Dr. Jim McDonald,
Johanne Morne:I'm Johanne Morne.
Geeta Sood:I'm Geeta Sood.
Jim McDonald:Thank you for listening. We hope to see you at the Grand Rounds on November 13.
Monica Pomeroy:New York Public Health now is a production of New York State Department of Health's Public Affairs Group. Michael Wren is the executive producer and engineer, with additional production support provided by Sarah Snyder, Genine, Babakian, Barbara Stubblebine, Alicia Biggs, Monica Pomeroy and Kyle Kotary. Copyright 2024, All rights reserved. We welcome your feedback. Please email us at PublicHealthNow@health.ny.gov.
