Long Covid Three Years Later
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Melissa Harris-Perry: This is The Takeaway. I'm Melissa Harris-Perry.
We may be ready to move beyond the COVID-19 pandemic, but COVID isn't done with us yet. Some of you told us about how Long COVID is affecting your lives.
Laura: This is Laura. I have Long COVID, and have not been able to fill my lungs. I am exhausted all the time. My hair is falling out. I am sleeping one full day out of every week, and my doctors are no help at all.
Maryanne: Hi, my name is Maryanne. I got COVID, I was hospitalized, I went into kidney failure. I ache all over, in every joint. I have rheumatoid arthritis, and it just aggravated it beyond belief.
Teresa: Hi, my name is Teresa. I'm from Minneapolis, Minnesota. I'm in constant pain. I'm finally over the headaches and the brain fog, but the body aches are tremendous.
Melissa Harris-Perry: The CDC reported that over 100 million people in the US contracted COVID-19 since the start of the pandemic. 11% who survived now find themselves managing the sometimes debilitating symptoms of Long COVID.
Dr. Zayid Al-Aly: My name is Zayid Al-Aly. I'm the director of the Clinical Epidemiology Center at Washington University in St. Louis, and also the chief of research and development at the VA St. Louis healthcare system.
Melissa Harris-Perry: Dr. Al-Aly Lee took some time to talk with us, here on The Takeaway. Let's just begin with a definition so that folks will be clear. What is Long COVID?
Dr. Zayid Al-Aly: Long COVID is a patient coin term. The patient community came up with it in May of 2020. What it really encompasses, it describes the post-acute and long-term health consequences of having COVID-19. That is, people who had COVID-19, and then, weeks, or months after having the infection, still have lingering problems. It could be shortness of breath, could be brain fog, could be, in some instances, fatigue, and some patients develop heart problems, strokes, problems with diabetes.
It can nearly affect every organ system. You can think of Long COVID as the umbrella term that encompasses all these post-acute, meaning really shortly after the infection, 30 days or more after the infection, or long-term, meaning it could be months or years after the infection, that are attributable to SARS-CoV-2 infection, to COVID-19.
Melissa Harris-Perry: Is there a threshold of symptoms that actually put one in the category of Long COVID, where physicians would say this constitutes Long COVID?
Dr. Zayid Al-Aly: Usually, by most definitions, if the symptoms last for more than 90 days after the initial infection, the patient then starts entering the territory of Long COVID. Again, symptoms that linger beyond the first 90 days of infection. Now, some people can have it, maybe, for a few months, and then they can improve. Unfortunately, now we know, that even three years into it-- There are some patients who had COVID-19 in the early phase of the pandemic, in March and April, 2020, they're still having problems up to this day.
Melissa Harris-Perry: As a researcher, how do you go about studying the effects of Long COVID, given what a diverse class of patients it affects?
Dr. Zayid Al-Aly: We do what we call big data analysis. We rely on very large data. We assemble a group of patients who have COVID-19, and then we compare their outcomes to groups of people who did not have COVID-19. We follow, generally, patients for either six months or a year, or now, actually, two years, to study their health outcomes, to characterize what did the COVID group have, in terms of new-onset health outcomes, that the people who did not get infected with COVID-19 don't have.
This is how we can tease out the new complications that can arise from COVID-19 weeks, months, and even years after the initial infection.
Melissa Harris-Perry: I understand that big data analysis as giving us insight into the dependent variables, what Long COVID does, how these symptoms are experienced. What do we know about the independent variable? What do we know about why some physiological systems, some bodies, some persons, end up developing Long COVID?
Dr. Zayid Al-Aly: We don't really fully understand why some people go on to develop Long COVID and some people seem to bounce back really quickly, no problems. They have, maybe, fever, cough, or short breath for a day, two, or three, and then bounce back as if nothing has happened. There are multiple hypotheses around this. One of it could be some genetic determinants. Some people may be predisposed to having long-term consequences after infection.
Some theories revolve around the virus itself, and when attacks the body, the immune system, in some patients, their immune system rev up so much, and they have this intense inflammation, that then subsequently result in organ damage and long-term consequences. There are multiple hypotheses or theories as to why some people develop these complications, and then, luckily, a lot of people do not, that's actually also good news.
We're trying to understand the differences between the people who get Long COVID and people who don't get Long COVID, to try to understand why this happens, and not only as an intellectual curiosity, because that actually may give us clues as to how to potentially treat Long COVID.
Melissa Harris-Perry: Have we seen this in other similar kinds of infections? COVID is a class of disease. Does this happen with the flu? Did we see this in other SARS infections?
Dr. Zayid Al-Aly: I feel we woke up to it, we woke up to the reality that viruses, or infections in general, in some instances, can lead to long-term manifestations, or long-term health consequences. I think, unfortunately, in the medical field and in research, this field of research, we haven't invested sufficiently in it to really try to understand or characterize the full spectrum of long-term health consequences after infection.
COVID reminded us of this, it's really a vivid reminder that viruses and other infectious agents can result on long-term consequences. It is my hope that one of the silver linings of this pandemic, one of the things that we can learn from this is learning that SARS-CoV-2 is not unique, some people, unfortunately, even with the flu, they can go on to experience long-term consequences. We know some people with Ebola have health consequences many, many years down the road.
We know that Epstein-Barr virus can cause multiple sclerosis even 10, 20 years down the road. Viruses can lead to long-term consequences, or long-term health consequences. SARS-CoV-2 is not unique. The two couple things that make SARS-CoV-2 a little bit different, at this point, is really the sheer scale of it, the fact that we are in a pandemic that, literally, billions of people around the world got infected with COVID-19, the sheer scale of it, and two--
What appears to be a bit different about SARS-CoV-2, that it has a predilection or the ability to attack nearly every organ system. In Long COVID, we see patients having brain problems, we see people having kidney problems, we see people having new-onset diabetes, heart problems. Again, it's not really limited to one organ system. These are two differentiating factors, but the broader idea of infection-associated chronic illnesses has actually existed for 100 years.
We just, as a society, as a medical community, and actually, as a human civilization altogether, we decided to ignore it and not study it enough. We got caught unprepared in this pandemic and all of a sudden, we had to rediscover Long COVID, rediscover the idea that infections can, in some instances, that's not in everyone, lead to long-term consequences.
Melissa Harris-Perry: You're with The Takeaway, and we're talking about Long COVID with the director of clinical epidemiology at the Washington University School of Medicine in St. Louis, Dr. Zayid Al-Aly. Do we know what categories of people are more likely to develop Long COVID? Is it also connected to so many of those pre-existing vulnerabilities that we heard about early on in the pandemic?
Dr. Zayid Al-Aly: One of the major criteria for developing Long COVID, the people who have the highest risk, are the people who had a really severe acute infection in the first place. People whose infection necessitated hospitalization, or even worse, an ICU stay. Those people who have really, really severe disease to start with, have the highest risk. It's not to say, Melissa, that the lion's share of people with Long COVID in the world are people who had very mild infections.
Even with mild infection, you can still get Long COVID, but on a relative scale, the risk is highest in people who had severe disease to start with. In terms of demographic groups, we know that Long COVID can affect nearly everyone. There are children with long COVID, there are people in their 80s, 90s, and 100-year-old people, who have Long COVID, it can affect people across the age spectrum, it can affect people across racial groups, and it can affect both males and females.
We've seen studies suggesting that the prevalence may be higher in women than in men, in some instances. We've seen studies that-- Again, some patients, especially people who have severe disease to start with, have the highest risk of long-term health consequences after SARS-CoV-2 infection.
Melissa Harris-Perry: More on this point, we know something about those who were infected with COVID and then developed Long COVID prior to the availability of a vaccine. We know that, of course, being vaccinated has very important protective effects, but that one can still be infected with COVID-19, even after vaccination. Do we know whether or not it reduces the likelihood of developing Long COVID?
Dr. Zayid Al-Aly: Yes, and this is very, very, very important. We know that vaccines reduce the risk of Long COVID, multiple studies have been done on this, including some in our lab here at the VA, and Washington University in St. Louis, suggesting that vaccines reduce, but do not eliminate the risk of Long COVID. Vaccines are not going to be the panacea, it's not going to eliminate or wipe out Long COVID, but they certainly reduce significantly the risk of Long COVID, absolutely correct.
Melissa Harris-Perry: Talk to me about treatment. Again, you've named so many different body systems that can be affected, everything from menstrual cycles to respiratory tract, to brain fog and fatigue, how is Long COVID treated?
Dr. Zayid Al-Aly: Unfortunately, this is where we're-- Actually I think, as a community of scientists, overall response to this have been sluggish in discovering treatments. If you ask me what is the number of FDA-approved medications to treat Long COVID, I'll tell you it's zero today, in April, 2023, the number is absolutely zero. That's really need to change, and it needs to change urgently. Now, when we talk about the complications of Long COVID, all these different sequelae, we call them sequelae of SARS-CoV-2 infection.
People are being treated now symptomatically. I'd say people with fatigue, people that have problems sleeping, people with depression, or people with fast heart rate, are being treated symptomatically. There's really no radical treatment now that aims toward a cure. We're only treating people symptomatically now, and that really places, in my mind, really, a significant emphasis on trying to accelerate trials to help us arrive at treatment earlier than later.
For the people who are suffering from Long COVID, and some of them have been suffering for two years, or three years, they need treatment yesterday, not today, not tomorrow, they need treatment yesterday.
Melissa Harris-Perry: Stay with us more in a moment on the continuing realities of long COVID. It's The Takeaway.
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Even as the World Health Organization has acknowledged that the COVID-19 pandemic isn't quite over, they've been laying the groundwork to begin transitioning out of the declaration of global emergency. Here in the US, the Biden administration isn't waiting for the WHO.
President Biden: While the virus is not gone, thanks the resilience of the American people and the ingenuity of medicine, we've broken the COVID grip on us. COVID deaths are down by 90%. We've saved millions of lives and opened our country back up, and soon, we'll end the public health emergency.
Melissa Harris-Perry: The Biden administration plans to end the Coronavirus national and public health emergencies on May 11th of this year, but it may happen even sooner, now that a Republican-led bill to end the declaration of emergency is headed to the President's desk, and he continues to indicate he's got no intention of vetoing the bill. As we await these policy changes, here at The Takeaway, we're checking back in on the continuing effects of COVID.
Still with us is the Director of Clinical Epidemiology at the Washington University School of Medicine in St. Louis, and Chief of Research and Development at the Department of Veteran Affairs Health Care System in St. Louis, Zayid Al-Aly. Are antivirals part of risk reduction?
Dr. Zayid Al-Aly: This is wonderful. This is also, again, an addition to the vaccines. We just talked about vaccines as important tools in reducing the risk of developing Long COVID. Antivirals, and people who are eligible for them under the FDA emergency use authorization, FDA EUA, that means people who are 60 years of age or older, or people who have at least one risk factor for progression to severe COVID-19 illness.
That subset of patients, we now know, from our studies, that taking antivirals, specifically paxlovid, in the acute phase, actually has the potential to reduce the risk of Long COVID, that actually can prevent the development of Long COVID. Both vaccines and antivirals are promising tools to help us prevent Long COVID. What this doesn't do, Melissa, is that it really doesn't help people who already have it.
People already suffering with Long COVID, we cannot talk about prevention, prevention is a moot point for them, because they already have it. For the people who already have Long COVID, we certainly, certainly, certainly need to accelerate trials to discover what treatment work, and what treatments don't work, to be able to help these patients as soon as possible.
Melissa Harris-Perry: Of course, one of the things we all became intimately familiar with, in the context of this pandemic, has been both the effects of infection on individual persons, households, families, so help us to understand the system-level effects with Long COVID. How is the treatment of those with Long COVID affecting our overall system?
Dr. Zayid Al-Aly: I think Long COVID affect millions of lives. Estimates are upwards of 20 million people in the US, at least, have Long COVID, some of them impacted severely, that actually takes them away from the workforce, that has an impact on the economy itself, on labor participation. It has a profound impact on the health system, because all these patients need care and need access to care. I can tell you that most of Long COVID clinics throughout the United States have really, really long wait lines.
In some instances, they're not able to accommodate new patients at all, thus affecting access to care, affecting people's lives and livelihood. Some of these patients will be impacted for a lifetime, and that's really the scar that remains after the pandemic is over.
Melissa Harris-Perry: I want to end on this really critical point that you made, and I want to be sure that I've got it very clear. When you talk about preventing Long COVID is initially, and at its core, about preventing COVID. In my community, on my campus, and my family, those who, for a long time, were mask wearers in public, primarily, are now going without masks in public spaces.
Have we come to a time when we can pretty safely engage the world thinking of the possibility of getting COVID as fairly low, or are we letting up too soon on some of these public health measures to prevent COVID?
Dr. Zayid Al-Aly: The larger picture is that we, as a society, and actually, not only in the US, in the world, we have this pandemic fatigue. We're all sick and tired of COVID, sick and tired of hearing about COVID, sick and tired of masking and limiting our movement here and there. We really have this itch to move beyond the pandemic and put the pandemic behind us. However, the reality is that SARS-CoV-2 is still around, and the pandemic is still a pandemic.
The virus is still evolving every day, mutating every day, new variants and subvariants are emerging, and might emerge, and there may be ones that could be even more consequential down the road. What we've learned in our research is that even for the people who got infected once, upon re-infection, they incur additional risks, meaning that re-infection with COVID-19, even for the people who had it, and even in cases where these people were vaccinated and boosted, re-infection contribute additional risk.
Continue to protect yourself to the extent possible. Be pragmatic about it. If you're going out to dinner tonight, if you're given the choice of dining inside or outside, well, make the intelligent choice, I would argue, to dine outside, because that's less risk. If you're boarding the metro today in New York City, or anywhere else, or boarding a plane, wear that mask. It protects you. Equally importantly, also, think of it as an act of kindness to the people around you.
You never really know. You're in the aisle of the grocery store, shopping, that one person next to you could be an immunocompromised person with cancer, who has to shop for their family and has literally no immune defenses in their body, so wearing that mask, is it inconvenient? Absolutely, yes. Are we all sick and tired of masks? I am sick and tired of mask, but to the extent possible, try to do those pragmatic things, whenever it's possible for you, to try to reduce your risk and risks of people around you.
Of course, it goes without saying that for the people who haven't been vaccinated, boosted, or updated on their booster shots, certainly, that should also be the foundation of our public health response. We still need to be vigilant and be careful about our surroundings, and try to lessen or reduce our risk to the extent possible.
Melissa Harris-Perry: Zayid Al-Aly is Director of Epidemiology at the Washington University School of Medicine in St. Louis and the Chief of Research and Development at the Department of Veterans Affairs Health Care System in Saint Louis. Thank you so much.
Dr. Zayid Al-Aly: Thank you for having me.
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