Jun 14, 2021
"Long COVID" is the name for the phenomenon experienced by people who have "recovered" from COVID-19 but are still suffering from symptoms months after the virus invaded their bodies. In this episode, listen to highlights from a 7 hour hearing in Congress about Long COVID so that you can recognize the disease and know where to turn for treatment. Even if you didn't catch the rona yourself, Long COVID is far more common that you probably think and is almost certainly going to affect someone you know.
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CD145: The Price of Health Care
1:01:34 Francis Collins: We've heard troubling stories all of us have people who are still suffering months after they first came down with COVID-19, some of whom initially had very few symptoms or even none at all. And yet today these folks are coping with a long list of persistent problems affecting many different parts of the body, fatigue, brain fog, disturbed sleep, shortness of breath, palpitations, persistent loss of taste and smell, muscle and joint pain, depression and many more
1:02:35 Francis Collins: I would like to speak directly to the patient community. Some of you have been suffering for more than a year with no answers, no treatment options, not even a forecast of what your future may hold. Some of you have even faced skepticism about whether your symptoms are real. I want to assure you that we at NIH hear you and believe you. If you hear nothing else today here that we are working to get answers that will lead to ways to relieve your suffering.
1:03:13 Francis Collins: New data arrived every day. But preliminary reports suggested somewhere between 10 to 30% of people infected with SARS COVID2 to may develop longer term health issues. To get a solid measure of the prevalence, severity and persistence of Long COVID we really need to study 10s of 1000s of patients. These folks should be diverse, not just in terms of the severity of their symptoms and type of treatment received, but in age, sex, race and ethnicity. To do this rapidly, we are launching an unprecedented metacohort. What is that? Well, an important part of this can be built on existing longitudinal community based cohorts are also the electronic health records of large healthcare systems. These resources already include 10s of 1000s of participants who've already contributed years worth of medical data, many of them will by now suffer from long COVID. This approach will enable us to hit the ground running, giving researchers access to existing data that can quickly provide valuable insights on who might be most at risk, how frequently individual symptoms occur, and how long they last.
1:04:24 Francis Collins: Individuals suffering with long COVID including those from patient led collaborative groups will be invited to take part in intensive investigation of different organ systems to understand the biology of those symptoms. Our goal is to identify promising therapies and then test them in these volunteers.
1:05:07 Francis Collins: Finally we need a cohort for children in adolescence. That's because kids can also suffer from long COVID and we need to learn more about how that affects their development.
1:05:35 Francis Collins: As we recruit volunteers, we will ask them to share their health information in real time with mobile health apps and wearable devices.
1:08:09 John Brooks: Although standardized case definitions are still being developed, CDC uses the umbrella term Post COVID conditions to describe health issues that persist for more than four weeks after a person is first infected with SARS-CoV-2 to the virus that causes COVID-19. Based on our studies to date, CDC has distinguished three general types or categories of post COVID conditions, although I want to caution that the names and classifications may change as we learn more. The first called Long COVID involves a range of symptoms that can last for months. The second comprises long term damage to one or more body systems or an organ and the third consists of complications from prolonged treatment or hospitalization.
1:09:45 John Brooks: Among these efforts are prospective studies that will follow cohorts of patients for up to two years to provide information on the proportion of people who develop post COVID conditions and assess risk factors for their development.
1:10:00 John Brooks: CDC is also working with multiple partners to conduct online surveys about long term symptoms and using multiple de-identified electronic health record databases to examine healthcare utilization of patient populations after initial infection.
1:20:21 John Brooks: Not only are there persons who develop post COVID symptoms, who we later through serology or testing recognizes having had COVID. But there's also there also were people who develop these post COVID conditions who have no record of testing, and we can't determine that they had COVID. So we've got to think carefully about what that how to manage that when we're coming up with a definition for what a post COVID condition is.
1:20:55 John Brooks: One of the most important things is to make sure that this condition is recognized. We need to make sure that folks know what they're looking at, as you've heard it's sort of protean. There are all sorts of different ways. Maybe we'll talk about this later. But the symptoms and ways that people present are very varied. And people need to be thinking, could this be post COVID and also taking patients at their word. You know, we've heard many times of patients have been ignored or their symptoms minimized, possibly because they didn't recognize that and COVID previously.
1:24:33 John Brooks: It's common, it could be as common as two out of every three patients. Study we recently published in our flagship journal, the Morbidity and Mortality weekly report suggested two out of three patients made a clinical visit within one to six months after their COVID diagnosis. So that is unprecedented, but people who've recovered from the flu or a cold don't typically make a scheduled visit a month later. It does seem that for some people, that condition gets better but there are definitely a substantial fraction of persons in whom this is going on for months.
1:25:37 Francis Collins: Basically what we did was to think of all of the ways in which we could try to get answers to this condition by studying people, both those who already have self identified as having long COVID, as well as people who just went through the experience of having the acute illness to see what's the frequency with which they ended up with these persistent symptoms. And if you look around sort of what would be the places where you'd find such large scale studies, one would be like we were just talking about a minute ago, with Mr. Guthrie, the idea of these long standing cohort studies, Framingham being another one where you have lots of people who have been followed for a long time, see if you can learn from them who got long COVID. And what might have been a predisposing factor that's part of the medical work. You could also look at people who have been in our treatment trials, because there are 1000s of them that have enrolled in these clinical trials. And they've got a particular treatment applied like a monoclonal antibody, for instance, it would be really interesting to see if that had an effect on how many people ended up with long COVID did you prevent it, if you treated somebody acutely with a monoclonal antibody, and then there are all these patient support groups, and you'll be hearing more for them in the second panel, were highly motivated, already have collected a lot of data themselves as citizen scientists, we want to tap into that experience and that wise advice about how to design and go through the appropriate testing of all this. So you put those all together, and that's a metacohort, where you have different kinds of populations that are all put together in a highly organized way with a shared database and a shared set of common data elements so we can learn as quickly as possible.
1:32:59 John Brooks: Extreme fatigue. I mean fatigue, as you probably heard, so bad, you can't get out of bed, it makes it impossible for you to work and limits your social life, anxiety and depression, lingering, chronic difficulty breathing with either cough or shortness of breath. That loss of smell persists for a very long time, which incidentally is particularly unique to this infection to the best I know.
1:37:10 Francis Collins: So the idea of trying to assemble such a large scale effort from multiple different kinds of populations of patients, is our idea about how to do this quickly and as vigorously and accurately as possible. But it won't work if we can't actually compare across studies and figure out what we're looking at. So part of this is the ability to define what we call common data elements, where the individuals who are going to be enrolled in these trials from various sources have the same data collected using the same formats so that you can actually say, if somebody had shortness of breath, how did you define that? If somebody had some abnormality in a lab test, what were the units of the lab test that everybody will agree so you can do apples to apples comparisons? That's already underway, a part of this metacohort is also to have three core facilities. One of those is a clinical sciences core, which will basically come up with what are the clinical measures that we want to be sure we do accurately on everybody who's available for those to be done. Another is the data sciences core, which will work intensively on these common data elements and how to build a data set that is both preserving the privacy and confidentiality of the participants, because these are people who are human subject participants in a trial, and also making sure that researchers have access to information that they can quickly learn from. And then there's a third core, which is a bio repository where we are going to be obtaining blood samples and other kinds of samples. And we want to be sure those are accurately and safely stored. So they can be utilized for follow up research. All of that has to fold into this. And so I'm glad you asked that question. That is the mechanism by which we aim to make the whole greater than the sum of the parts here even though the parts are pretty impressive. The whole is going to be pretty amazing.
1:41:03 Francis Collins: Tomorrow is the one year anniversary of the launch of RADX, Rapid Acceleration and Diagnostics. Another program made possible by the Congress by providing us with some additional funds to be able to build new platforms for technology to detect the presence of that SARS COVID-2 virus, increasingly being able to do those now as point of care instead of having to send your sample off to a central laboratory. And even now doing home testing, which is now just in the last month or so become a reality and that's RADX that developed those platforms.
1:41:30 Francis Collins: It was a pretty amazing experience actually.
1:41:40 Francis Collins: We basically built what we call the shark tank. And we became venture capitalists. And we invited all of those people who had really interesting technology ideas to bring them forward. And the ones that looked most promising, got into the shark tank and got checked out by business people, engineers, various other kinds of technology experts, people who knew about supply chains and manufacturing and all of that to make sure that we put the funds into the ones that were most promising. And right now, today, Congressman, there's about 2 million tests being done today, as a result of RADX that otherwise would not have been. 2 million a day, or 34 different technologies that we put through this innovation funnel. And that has opened up a lot of possibilities for things like getting people back to school where you have testing capacity that we didn't have before.
1:42:32 Francis Collins: What did we learn about that that applies to long COVID? Well, one thing I learned was we can do things at NIH in really novel ways that move very quickly when we're faced with a crisis like COVID-19 pandemic, we're applying that same mentality to this effort on long COVID normally would have taken us more than a year to set up this kind of metacohort. We're doing it in a couple of months because we need to utilizing some of those same mechanisms that you gave us in the 21st Century CARES bill, which has been a critical part of our ability to move swiftly through something called Other Transactions Authority.
1:43:16 Francis Collins: You saw in the President's budget proposal for FY-22, something called ARPA H, which is basically bringing the DARPA attitude to health that also builds on these experiences and will give us, if approved by the Congress, the ability to do even more of these very rapid, very ambitious, yes, high risk, but high reward efforts as we have learned to do in the face of COVID and want to continue to do for other things like Alzheimer's disease, or cancer or diabetes, because there's lots of opportunities there, too.
2:02:53 John Brooks: The number of people seeking care after recovering from COVID is really unprecedented. And it's not just people who had severe COVID it may include people had very mild COVID and in fact, we know there's a number of people who never had symptomatic COVID who then get these long symptoms.
2:03:09 John Brooks: Just historically, the other disease I can think of that may have a little analogy to this is polio. It was a more devastating sequentially that people lived with the rest of their lives. But it was thanks to the enrollment of some early cohorts of these patients followed over the course of their life, that when post polio syndrome later came up in the population, we had the wherewithal to begin to understand it. And it happens with been a condition in many ways, sharing some characteristics of this post COVID condition.
2:16:33 Francis Collins: The virus has been evolving. So one question is, how long will you be immune to the same virus that infected you the first time. And we think that's probably quite a few months. But then are you immune to a variant of that virus that emerges like the one called B117, which now is almost 60% of the isolates we're seeing in the United States after it ran through the UK and then came to us, that degree of immunity will be somewhat lower. The good news here, though, is that, and this may surprise people, the vaccine actually provides you with better broad immunity, then the natural infection, and you don't quite expect that to be the case. Usually, you would think natural infection is going to be the way that revs your immune system to the max and the vaccine is like the second best, it's flipped around the other way in this case, and I think that's because the vaccine really gets your immune system completely awake. Whereas the natural infection might just be in your nose or your respiratory tree and didn't get to the rest of your body. With a vaccine. We think that immunity lasts at least six months. But is it longer than that? We don't know yet because this disease hasn't been around long enough to find that out. And so far, the vaccines, the Pfizer, the Moderna, do seem to be capable of protecting against the variants that are now emerging in the US like this B117.
2:26:09 John Brooks: Anosmia are the loss of smell or change and smell is an often overlooked, but surprisingly common problem among people. This disease really seems to target that and cause it. I can say this, you know, I've been I've had a particular interest in this topic, the reading that I've been doing seems to suggest that the virus isn't necessarily targeting the olfactory nerves, the nerves that transmit smell, but more of the nerves that are sort of around in supporting those nerve cells, and it's the swelling and the inflammation around those cells that seems to be leading to some kind of neurologic injury. I will say the good news is that many people will eventually recover their sense of smell or taste, but there are others in whom this is going to be a permanent change in terms of treatment, smell training, interesting therapy, but it really works. And it's I really want to raise people's awareness around that because the earlier you can begin smell training, the better the chances that you'll recover your sense of smell.
2:43:13 John Brooks: We hold regular webinars and calls for clinicians they can call into these often are attended by 1000s of providers. We use these as an opportunity to raise awareness because I think you made a really critical point that patients feel like their doctors don't recognize their problem or they don't accept that it's possible they have this condition. We use those calls and webinars to raise awareness that this is a real entity. We also then publish papers and put out guidelines that illustrate how to diagnose and begin to pull together what we know about management.
2:52:27 Francis Collins: But it certainly does seem that the risk of developing Long COVID goes up. It's fairly clear that the initial seriousness of the initial illness is somewhat of a predictor. Certainly people are in the hospital have a higher likelihood of long COVID than people who stayed out of the hospital but people who weren't hospitalized can still get it. It's just at a somewhat lower rate.
2:53:07 Francis Collins: Risk factors. older age people higher likelihood, women have a slightly higher chance of developing long COVID than men. BMI, obesity also seems to be a risk for the likelihood of long COVID. Beyond that, we're not seeing a whole lot of things that are predictive. And there must be things we don't know about yet. That would give you a chance to understand who's most vulnerable, to not be able to just get this virus out of there and be completely better, but we don't know the answer is just yet.
3:29:30 Francis Collins: First of all, let me say anxiety and depression is a very common feature of long COVID. But there are instances of actual induction of new psychoses sees individuals who previously were normally functioning who actually fall really into a much more serious psychiatric illness. We assume there's must be some way in which this virus has interfered with the function of the brain maybe by affecting vascular systems or some other means of altering the the way in which the brain normally works. But we have so little information right now about what that actual anatomic mechanism might be. And that's something we have to study intensively.
3:33:13 Francis Collins: When you look at what is the likelihood that somebody who is just diagnosed with COVID-19 is going to go on too long COVID It looks as if it's a bit higher for older people, but on the other hand, they're more young people getting infected. So if you go through the mathematics, you can see why it is that long. COVID seems to be particularly prominent now. And younger people who may not have been very sick at all with the acute infection, some of them had minimal symptoms at all, but now are turning up with this.
3:34:10 Francis Collins: We have 32 million people who've been diagnosed with the acute infection. SARS-COVI-2 to COVID-19. Let's say 10% is right. That means there are 3 million people going to be affected with this are already are and whose long term course is uncertain and may very well be end up being people with chronic illnesses.
3:35:07 John Brooks: It's a great opportunity to remind young people they're not immune to this right? This is really the audience you want to reach. Vaccination is something you should strongly consider. This affects people like you.
3:44:06 John Brooks: Some of the symptoms are the ones you see in adults, as you would expect, particularly pulmonary conditions, persistent shortness of breath, maybe cough, as well as persistent fatigue. There is also some evidence that he experienced what is called a brain fog, but it's probably some issue or probably neurocognitive in nature. And this is important for kids when they're growing and developing that, that we understand what's happening there because we don't want that to impair their ability to learn and grow properly.
4:35:54 Lisa McCorkell: I'm testifying today as a long COVID patient and as a member at the leadership team of the patient led research collaborative, a group of long COVID patients with backgrounds in research, policy and data analysis, who were the first to conduct research on Long COVID. My symptoms began on March 14 2020. Like many of what we call first waivers, I was not afforded a COVID test, because at the time tests were limited to hospitalized patients and those with shortness of breath, cough and fever, the last of which I didn't have. I was told that I had to isolate and within two weeks I'd be recovered. A month later, I was in worse health than in that initial stage. I couldn't walk more than 20 seconds without having trouble breathing, my heart racing and being unable to get out of bed the rest of the day.
4:37:18 Lisa McCorkell: Our ost recent survey asked about 205 symptoms over seven months and received almost 7000 responses. In our recent paper, 92% of respondents were not hospitalized, but still experienced symptoms in nine out of 10 organ systems on average. We found that patients in their seventh month of illness still experienced 14 symptoms on average. Most commonly reported were fatigue, post exertional, malaise and cognitive dysfunction. In fact, 88% experienced cognitive dysfunction and memory loss impacting their ability to work, communicate and drive. We found that this was as likely an 18 to 29 year olds as those over 60. Lesser known symptoms include tremors, reproductive changes, months long fevers and vertigo. Over two thirds require a reduced work schedule or cannot work at all due to their health condition. 86% experienced relapses were exerting themselves physically or mentally can result in a host of symptoms returning.
4:38:14 Lisa McCorkell: Long COVID is complex, debilitating and terrifying. But patients aren't just dealing with their symptoms. They're dealing with barriers to care, financial stability and recovery. Due to the lack of a positive COVID test alone, patients are being denied access to post COVID clinics, referrals to specialists, health insurance coverage, COVID related paid leave, workers comp, disability benefits, workplace accommodations and participation in research. When we know that not everyone had access to COVID testing that PCR tests have false negative rates of 20 to 40%. That antibody tests are more accurate on men and people over 40 and that multiple studies have shown that there's no difference in symptoms between those with the positive test and those without. Why are we preventing people who are dealing with real symptoms from accessing what they need to survive?
4:39:00 Lisa McCorkell: Even with a positive test patients are still being denied benefits or have to wait months until they kick in. Medical bills are piling up. People are being forced to choose between providing for themselves and their family and doing what's best for their body.
4:39:58 Lisa McCorkell: The stimulus checks that you all provided us to get through the pandemic. I do really appreciate them. But every cent of mine was spent on urgent care and doctor's visits where I was repeatedly told that mycotic cardio my inability to exercise and brain fog was caused by anxiety and there was no way that I could have had COVID since I didn't have a positive test.
4:41:37 Jennifer Possick: I hope to share my perspective as a pulmonologist caring for people with post COVID disease including Long COVID. So in Connecticut, the surge initially arrived in March of 2020. And within weeks thereafter, people were reaching out to us about patients who remained profoundly short of breath after their acute illness had passed. My colleagues and I were struck by how difficult it was to tell the difference between people recovering from mild, acute COVID and those who had required ICU level care. Both groups had the physical, cognitive and psychological fallout we would expect from a critical illness or a prolonged intubation. And in addition to being short of breath, they reported a host of other symptoms. I saw a teacher who had recurrent bouts of crushing chest pain, mimicking a heart attack, a young mother, who would have racing heartbeat and dizziness every time she played with her toddler, a local business owner who couldn't remember the names of his long term customers or balance his books, and a home health aide who didn't have the stamina or strength to assist her elderly clients.
4:42:53 Jennifer Possick: We've spent this year learning alongside our patients, about half of whom are never hospitalized. They are mostly working age, previously high functioning. Many were frontline or essential workers. Many were initially disbelieved. Their quality of life has been seriously impacted. Some can't walk to the mailbox or remember a shopping list, much less resume their everyday lives and work.
4:43:16 Jennifer Possick: They've used up their paid sick leave. They've cut back their hours they have left or lost jobs. They have difficulty accessing workman's compensation benefits and FMLA or securing workplace accommodations. Some have even cut back on food, rent or utilities to pay for mounting medical expenses.
4:44:03 Jennifer Possick: Consensus practice supports many forms of rehabilitation services but insurance approval and coverage have been beyond challenging and demand outpaces availability in any case. For patients with ongoing oxygen needs, requests for portable oxygen concentrators can be delayed or even denied complicating physical recovery and mobility.
4:44:27 Jennifer Possick: We are a well resourced program at an academic medical center. But we are swamped by the need in our community. This year, we have seen more patients with post COVID-19 conditions in our clinic alone then we have new cases of asthma and COPD combined. Looking ahead, the magnitude of the challenge is daunting. There are over 31 million survivors of acute COVID-19 in the United States, and we don't know how many people will be affected, what kind of care they will need, or how long, or what kind of care that will entail or how long they'll need it. Research will ultimately help us to understand the origin of the symptoms and to identify effective treatment, but in the meantime, their care cannot wait.
4:49:37 Steven Deeks: First, we don't have a way of measuring this, right? Everyone everyone has got a cohort or a clinic measures it differently. They report stuff differently. As a consequence, the epidemiology is a mess, right? We don't really have a good sense of what's going on we need and this has been said before, a general consensus on how to define the syndrome, how to measure it and study so that we can all basically be saying the same thing.
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4:50:06 Steven Deeks: We don't really know the prevalence of either the minimally symptomatic stuff or the very symptomatic stuff.
4:50:27 Steven Deeks: Women in almost every cohort, women are more likely to get this than the men. And This to me is probably the strongest hint that we have in terms of the biology, because women in general are more susceptible to many autoimmune diseases and we know why. And so paying attention to that fact why it's more common in women I think is providing very important insights into the mechanism and is directing how we are going about our science to identify therapies.
4:51:09 Steven Deeks: The same time people are getting acute COVID. They're living in a society that's broken. There's lots of social isolation. There's lots of depression, there's lots of people struggling, who did not have COVID. And the way this social economic environment that we're living in, has interacted with this acute infection is likely contributing to what's happening in ways that are very important but I think ultimately going to be hard to untangle and something that has not been discussed.
6:00:36 Jennifer Possick: I don't think that we can broadly say that there is any treatment that is working for all patients. We don't have that answer yet. As Dr. Deeks had suggested, there are things we try empirically. Sometimes they work for some patients other times not, but we're not in a position yet to say that this is the regimen, this is the treatment that works.
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