Transcript: Long Covid: Where Things Stand -

MS. WATFORD: Hello and welcome. I’m Suzi Watford, the chief strategy officer here at The Washington Post.

It's been four years since the global pandemic began to upend the lives of so many people across the world, and today there are still tens of millions living the lasting impacts and consequences of the deadly virus, people who are having difficulty breathing, have trouble remembering, have had to quit their jobs, or move out of their homes. And while the conditions, definition, prevalence, cause, and cure are still being studied, long covid is turning into a public health challenge that could be enduring and expensive.

Today we will hear from Ziyad Al-Aly, the chief of Research at the VA St. Louis Healthcare System, and Jaime Seltzer, the scientific director at the MEAction Network, as they discuss the latest studies about long covid and the path forward.

Then we have Linda Sprague Martinez, the director of the Health Disparities Institute at UConn Health, and Chimére Sweeney, founder and director of The Black Long Covid Experience. They'll detail the patient's perspective and how it's disproportionately impacting communities of color.

And finally, we'll end with the New York City Department of Health and Mental Hygiene Commissioner, Ashwin Vasan, as he addresses the looming public health challenge for governments as more data is collected about the condition.

Our special thanks to Moderna for sponsoring today's event and for all of you supporting The Post, and with that, my colleague, Akilah Johnson, will be up here after the video to kick off today's conversations. Thanks again for joining us.

[Applause]

[Video plays]

MS. JOHNSON: Good morning. I'm Akilah Johnson, a national reporter here at The Washington Post who focuses on health disparities.

Today we are joined by Dr. Ziyad Al-Aly--he is clinical epidemiologist at Washington University School of Medicine in St. Louis and the chief of research at the Veterans Affairs St. Louis Healthcare System--and Jaime Seltzer, the scientific director at the MEAction Network, an advocacy group focused on ME/CFS and long covid. Thank you both for joining us.

DR. AL-ALY: Delighted to be with you.

MS. SELTZER: Thank you for having us.

MS. JOHNSON: And so I want to start off immediately by noting that you two are still practicing some covid hygiene that we see less and less of nowadays. Can you tell us why you're wearing masks in this room?

MS. SELTZER: Yes, absolutely. So we are in the middle of another wave, particularly in Maryland right now, and I also want to stand in solidarity with the many immunocompromised people who really need to wear masks, even in wider spaces like this, because it's very important to normalize the behaviors that are going to keep people safe.

MS. JOHNSON: Absolutely.

And so let's go big picture, because we're here to talk about long covid, right? So you're normalizing behaviors that keep people safe, and one of the things that is a result of having covid is long covid. And so there are more than 200 symptoms of long covid and no single diagnostic test or cure.

Dr. Al-Aly, you've been studying this for years at this point. Start by telling us what you've learned about the illness and what remains to be done.

DR. AL-ALY: Sure. Well, thank you. Well, we've learned that long covid can affect nearly everyone. We have kids who have long covid, and we have really people who are 101 years old with long covid. Long covid is not only brain fog and fatigue. I know we've sort of talked about it in the public discourse as sort of a manifestation of brain fog and fatigue, but it can literally affect nearly every organ system. It can lead to brain problems, strokes, heart failure, new onset diabetes, even high cholesterol, have really wide manifestations across almost every organ system.

We also know that, you know, the burden of long covid when you measure it, you know, the burden of disease and disability from long covid is actually quite substantial. It can affect people so severely, that they're, you know, so profoundly disabled, they cannot really work. It upends marriages, friendships, relationships. It can be severe in some cases.

The risk of long covid after reinfection is not zero. You know, people sort of think, "Oh, reinfection is not consequential. I've had covid before, and I've been vaccinated. I'm a superman. I have super immunity"--or a superwoman--"I have super immunity because I've got vaccinated before, and I've also been exposed before to covid-19, so I'm immune." That's really a myth. That's really not true.

Reinfection contributes to additional risk of long covid, and we know that primary prevention, you know, like wearing a mask reduces the risk of covid and long covid. We know vaccines to some extent also work in reducing the risk of long covid. We know antivirals also reduce the risk of long covid.

MS. JOHNSON: So it sounds like you're talking about viral persistence, and so Jaime, there are recent studies suggesting long covid is caused by viral persistence, ongoing inflammation in organs that could help explain brain fog and other systems, right? I've spoken to long covid sufferers who talk about the way the air in their home has become toxic to them in addition to, like, the brain fog that you've mentioned. Can you talk about similarities between long covid and ME/CFS? And I am going to ask you to tell us what ME/CFS actually stands for because that's an acronym, correct? And it's a condition that people call--previously was known as chronic fatigue system, but it is a constellation of more than that. So can you talk to us about the similarities between the two?

MS. SELTZER: Absolutely. We'll take those one at a time. So ME/CFS is myalgic encephalomyelitis/chronic fatigue syndrome, and it is characterized by this set of symptoms or kind of pathology called "post-exertional malaise," in which when a person overdoes their activity physically or cognitively, they experience disproportionate flare of symptoms, often, but not always, with a characteristic 24-hour delay between the trigger and the symptoms. So it can be very hard for patients to understand why they went for a simple walk that they could have tolerated when they were well, and then the next day, they can't turn over in bed, for example. So that is what I call the "pathognomonic symptom," the symptom that identifies the disease.

There are other symptoms required to diagnose ME/CFS, including cognitive impairment, orthostatic intolerance, fatigue that dramatically decreases somebody's capacity to live their everyday life and carry out their everyday activities, and about half of cases of long covid have been identified as fitting the diagnostic criteria of ME/CFS.

Now, as far as viral persistence and what's the similarity, the way that I think of these diseases is actually that the pathology often fits into three separate buckets. One of those might be viral persistence or fragments of the virus lingering. It could also be co-infections that arise after covid. Another bucket is the damage that the virus initially did in the system. So a patient might have liver damage or pulmonary fibrosis, and that's what we're talking about there. And then the third bucket is immune, endocrine, and metabolic shifts, and that's sort of what I think of as ME/CFS. And those may or may not require the pathogen or fragments of the pathogen to linger for patients to experience those symptoms.

MS. JOHNSON: So when you said shift--unpack that last one just a little bit more, kind of for the common person who may not quite get what you're saying.

MS. SELTZER: Absolutely. So for example, the metabolism changes in ME/CFS. You'll notice that glucose metabolism, in particular, alters a great deal, and this is at the cellular level, but patients also observe it at the macro level in their own bodies, where they can't tolerate having sugar or carbohydrates without having a flare of their symptoms. And that's often in acute and early disease, where you see increased inflammation and maybe sugar-feeding immune activity and things like that.

MS. JOHNSON: Got you.

So we're going to go to a question from the audience. Studies show that the prevalence of ME/CFS has been growing as a result of the pandemic and long covid. Whitney Fox of Maryland asks, “Dr. Al-Aly, how can policymakers and public health officials learn from ME/CFS to respond rapidly to long covid?”

DR. AL-ALY: Well, thank you for this. This is a very important question. So a lot of people sort of think about long covid is really new, but in a way, it's really not. It's really an infection-associated chronic disease like ME/CFS and understanding long covid and understanding ME/CFS is really sort of--will help us more broadly understand how infections, how acute infections can lead to chronic disease. There are a lot of similarities between ME/CFS and long covid.

I was actually talking to Jaime, like, right before coming here, and I said we actually look at the ME/CFS literature and what they have done over decades and learn what they have done to sort of help us better understand what long covid is.

Again, we're all in the same boat. These are all conditions, that we call them "infection-associated chronic illnesses," the idea that viral infections, in some instances, can lead to chronic disease or acute viral infections can lead to chronic disease. Long covid is new because, you know, there's SARS-CoV-2. SARS-CoV-2 is itself new, but viruses existed for millennia. And ME/CFS has existed for a long, long, long time. So again, understanding one will help us understand the other, and more importantly, in my view, also help us prepare for the next pandemic, better prepare for the next pandemic, because we're going to be hit with another pandemic. We just don't know when we are going to be hit with the next pandemic. And they're going to be long virus 2030 or long virus 2040. We're going to have another wave of chronic illness after future pandemics, and we'd be better positioned to address that if we now, you know, better understand long covid and ME/CFS.

MS. JOHNSON: So, Jaime, how has long covid impacted ME/CFS in terms of visibility, in terms of advocacy, in terms of understanding?

MS. SELTZER: That's a great question. Thank you. So when the pandemic became well known in the United States, February, March of 2020, my organization, MEAction, knew that if we were going to have the spread of a virus, we were going to see millions of people with chronic illness. So right away, we started creating materials for those people who were going to become ill. We developed the pacing guide, which is an activity management strategy for people with these diseases, in March of 2020. And so for a lot of people with long covid, their first experience of learning what was happening to them was from the disability community, the ME community and MEAction, in particular.

So that allowed us to forge alliances with new organizations and ensure that everyone who needed to know how to look after themselves, if they were going to become ill, and how to protect themselves from becoming ill, had a place to go and people to turn to. And I think that that had a big impact on our reach was that we were--I used to say business is booming in the worst possible way. But it enabled us to be there because we were the first boots on the ground.

I think more people know what ME/CFS is today. I engaged in a partnership with Mayo Clinic physicians. We developed a diagnostic and treatment guideline and a concise clinical review about ME/CFS for those with long covid who are going to meet the criteria and for whom treatments and interventions and management strategies for ME/CFS would be useful.

[Applause]

MS. SELTZER: Thank you.

MS. JOHNSON: Absolutely.

So let's talk about NIH RECOVER Project, and so, Jaime, more than three years ago, NIH launched a $1 billion-plus initiative to find the root causes and potential treatments for long covid. What are your takeaways from what they're--from kind of where the project is at this point?

MS. SELTZER: This, unfortunately, probably won't be a sound bite because it's complicated.

So first of all, I was thrilled that NIH stepped up early in the pandemic to provide $1 billion in order to research this disease. What was dismaying was that NIH really didn't reach out to people who had any experience in infection-associated chronic illness, and especially early on, it showed in their study design, in the way that they were recruiting, even. And that was that was extremely disappointing. I thought of it as one of the most colossal missed opportunities in science of all time.

I think now that there are people within RECOVER who are brilliant, and they're doing incredible work. I hope that if and when we get some more money for long covid research, we have more people involved who have had the four decades of experience that we needed. So many of the long covid researchers have caught up at a run and are incredible, and it's very laudatory. And it would have been easier on them if they had involved people who had been here.

MS. JOHNSON: I see you shaking your head, Doctor. Tell me, what do you think about the RECOVER project and kind of its status and where it should go from here?

MS. SELTZER: I should say before we launch into it also that a lot of RECOVER has been observational.

MS. JOHNSON: Mm-hmm.

MS. SELTZER: So it's just collecting data. It's not actually testing treatments, and some of the treatments that are being tested are not really appropriate to the disease.

DR. AL-ALY: So that's exactly right. So I really think that the RECOVER could do a better job really trialing or understanding how drugs--or what drugs really work for long covid and what drugs don't work for long covid. They currently have about eight trials--or actually exactly eight trials. They should have about 80, you know, to really address sort of the scale of long covid, and so prioritizing trials, the things that actually matter to patients, discovering drugs that really work for patients is really important, because for those people who are suffering, for those people who are suffering and been suffering since March 2020, some of them are so profoundly disabled that they've lost their jobs. They've lost their marriages. They've lost a lot of friendships. They're bedridden at home. Those people need treatment yesterday, and eight trials that are ongoing right now are also too small to really yield conclusive and definite answers. And we really need answers yesterday. So prioritizing trials to help us understand what drugs work for our patients with long covid, what drugs don't work, so we can effectively treat our patients as soon as possible is really going to be very important.

MS. JOHNSON: You know, Jaime, historically, ME/CFS has been underfunded relative to its disease burden. Is the same thing happening with long covid?

MS. SELTZER: That's a great question, and I think a lot of people would say, well, a billion dollars is plenty. But of course, it's not. We have an enormous number of people who are affected. We have spent most of that billion dollars on observational things, and one of the trials is actually on an exercise therapy when we know that people respond with worsened function to exercise.

So I do think that we need more funding for long covid, and I also think that we absolutely need to include the people who have other infection-associated chronic illnesses, including people who had ME/CFS before covid.

And also, as Ziyad was saying, this is not going to be the last time we have a pandemic, and if we orient all of our research towards this one virus, what's going to happen next time? Are we going to have to go through the process of reapproving every single drug because that was a drug for long covid and now it's post-bird flu syndrome?

MS. JOHNSON: You know, you've mentioned something a couple of times, and I think I just kind of want to unpack it for anybody who's watching at home or here who may not quite understand when you're talking about kind of post-exertion malaise or why exercise treatment won't work. I think we quite often hear, you know, “Maybe if you go for a walk, you'll feel refreshed,” or "I'm a little rundown." Everybody feels a little sore, a little tired after they kind of work out or try to get back in shape. What does it mean to kind of push yourself too far or to exert yourself to the point of exhaustion with someone who has long covid or ME/CFS?

MS. SELTZER: It's a great question, and I think that it's going to be very hard for our able-bodied audience to fully take in because it's so shocking. I myself have ME/CFS. I come from a family of women with ME/CFS. Susceptibility appears to be hereditary even when it's kicked off by infection.

So the first time I experienced PEM and I knew I had, I had already had to stop work because I was so sick, and I thought, like you would, you need to be sure you stay fit, right? That's one of the first things that would occur to you. So I got an exercise bike, and I biked for five minutes, and that was fine. And so I biked for seven minutes, and that was fine. When I hit about ten minutes, I started to shake. My core body temperature dropped. I had trouble thinking clearly. I couldn't walk. That's a little unusual for the onset to be that acute, but I was pushing myself, and I didn't know what I was doing. I couldn't warm up. I fell asleep/passed out and woke up 18 hours later. So it's pretty intense.

And I probably had it for a while. That was really just the first time I recognized I had it. For somebody who has more minor-presenting long covid or ME/CFS, which is a deceptive way to put it because even minor can be really limiting, they might work all week, get through, push through, and then spend pretty much all of Saturday and Sunday in bed getting up to use the restroom or maybe eat something. And then they get up and they do it all again. The problem with that is that if you do that over and over, you can make your setback permanent. You can lose functional capacity for good, and that's what we've seen where graded exercise therapy was actually recommended for patients in the UK, for example. People went from being able to walk to being reliant on a wheelchair or being able to use a wheelchair to being bedbound, and part of the reason is that metabolic shift that we discussed.

At the cellular level, there's evidence that people with ME/CFS and people with long covid don't really produce energy molecules like they used to.

MS. JOHNSON: So, Doctor, let me ask you, for clinical folks, right, if someone comes in and they're like, "Ah, I'm feeling a little tired," or they describe what Jaime just did, right, like, "I tried to push myself on this bike, and then I passed out for 18 hours," what is your recommendation or what would you say the doctors or clinicians need to know as they are talking with folks with long covid or ME/CFS or kind of in these clinical spaces?

DR. AL-ALY: First of all, educate yourself about the disease. You know, we get a lot of sort of questions from providers, and they haven't really even read the literature. They haven't really even read the research. So it is the responsibility of providers and also medical societies to teach and train their health care professionals on long covid. And also medical schools and training programs in the United States have not done a good job training people about long covid and actually training people about ME/CFS.

Second, listen to the patient. You know, there's no biomarker out there. There's no blood work out there that can specifically pinpoint long covid. But there's also no biomarker for a headache. If somebody comes to you and says, I have a headache, you don't say, "Oh, prove it to me in a test." I have a headache, you know. So listen to the patient. And there are quite a bit of telltale signs of long covid, or post-exertional malaise, or brain fog, and various other manifestations of long covid that are actually easily to discern. So there is a category of disorders called POTS, or postural orthostatic tachycardia syndrome. That's a form of autonomic dysfunction. That's actually quite easy to diagnose in the clinic. So listening, educating yourself, and educating, you know, the providers in the U.S. and elsewhere in the world about long covid, about ME/CFS is going to be key.

A lot of providers actually mean to do well, but they're not trained. They went to medical school. They've never heard about ME/CFS. They've never heard about long covid. You know, so we need to do a better job educating the health care providers in the United States so they can actually recognize those symptoms and approach patients with empathy and understanding and be able to treat them accordingly.

MS. SELTZER: May I add something?

MS. JOHNSON: Very briefly, yes.

MS. SELTZER: Very briefly, there is the Mayo Clinic Proceeding CME that we wrote for ME/CFS. I hope clinicians who are listening will take a look at it.

[Applause]

MS. JOHNSON: And we are just about out of time. That was a great place to end. We already have applause before we say our outro. So we'll have to leave you there, Jaime, Dr. Al-Aly. Thank you so much for joining us today.

DR. AL-ALY: Well, thank you for having us.

MS. SELTZER: Thank you. Everybody take care of yourselves.

MS. JOHNSON: And don't go anywhere. Our next guest will be up after this short video to talk more about the patient experience.

[Applause]

[Video plays]

MS. JOHNSON: Welcome back. For those just joining, I'm Akilah Johnson, a health reporter here at The Washington Post focused on health disparities.

Here with us now is Linda Sprague Martinez--she is a professor and health equity researcher who has studied the impact of long covid on Black and Latino communities in Massachusetts--and Chimére Sweeney, a long covid patient advocate and founder of The Black Long Covid Experience. Thank you both for joining us.

MS. SWEENEY: Thank you.

DR. SPRAGUE MARTINEZ: Thank you.

MS. SWEENEY: Appreciate you.

MS. JOHNSON: So, Chimére, I want to start with you. You left teaching in March of 2022, and you haven't returned. Talk us through--well, before I get to that, how are you feeling today?

MS. SWEENEY: I feel okay today. However, I had to get up at about 4:30, five o'clock, because usually mornings, I move pretty slow, trying to recover from packing and traveling and the fatigue that comes with that, a little foggy in the brain, but I'm going to do my best. Mm-hmm.

MS. JOHNSON: Okay, good.

MS. SWEENEY: Thank you for asking.

MS. JOHNSON: Of course. So talk us through the time when it hit you that you would never return to the classroom.

MS. SWEENEY: Well, actually, I stopped working March 2020.

MS. JOHNSON: Okay.

MS. SWEENEY: Okay. So I have officially been out of the classroom for about four years. As you saw in the video, I was devastated at the thought of never returning to the classroom because I taught in the inner city of Baltimore City. As many people may know, when you are a Black female teacher in an urban school district, your presence for the kids becomes paramount to their growth and their development. I was a champion of my students. There was nothing that we couldn't do. As a matter of fact, when I left teaching, the last school year that I taught, my eighth grade students had the highest standardized testing scores in the city. So imagine being on that high and realizing how much I could do with my students and realizing that as time went by, I would never be able to return to that.

And so I still suffer severe depression and--about that. There's nothing like being a teacher doing exactly what you're supposed to do, and it's just all ripped from you in just two weeks.

MS. JOHNSON: Dr. Sprague Martinez, I'm sure you've heard these stories before in some of your research that you've done, because you've been researching long covid and the impacts on communities of color. Can you share what your focus groups--what you've learned in the focus groups that you have done? What are some of the things that people have said?

DR. SPRAGUE MARTINEZ: Sure, yes. So we did 11 focus groups across the state of Massachusetts in four different languages, and of the 11 focus groups, in nine of them--and this is with individuals who had experienced prolonged covid symptoms over time. But nine of the focus groups--in nine of the focus groups, folks hadn't heard of the term "long covid."

MS. JOHNSON: So they'd never heard the term "long covid."

DR. SPRAGUE MARTINEZ: No. And those were in the nine--non-English language focus groups.

In the English language focus groups, they had heard the term "long covid," but it wasn't everyday language. People weren't talking about it in their circles.

But some of the things that we heard really echo what you're saying, Chimére, in terms of people--the impacts on people's mental health and, in many cases, not knowing what was going on with their body.

So most people we had spoken with in the groups had not had a formal diagnosis of long covid. They had gone to the doctor's numerous times, been turned back home saying, you know, if there's nothing wrong with you, we can't identify it.

There were a couple of cases in which folks had gone and had had a diagnosis, and they had--but they had missed--like, it required many appointments. They had missed work. We heard a lot of social and economic impacts from folks with long covid or the long-term symptoms. Many of them had had to leave work. Many of them had either lost a car, struggled with economic security, paying rent. That was a common one.

But the mental health came in two different ways. One, it was the social impacts and the economic security and how that was taking a toll on them in terms of feeling like they couldn't do what they once could do, loss of control, loss of sense of autonomy over their everyday lives, and then also for folks not knowing what was going on with their body and knowing that something was happening, but not being able to engage a provider in a way that kind of validated what was going on with their body.

MS. JOHNSON: I mean, and how do you--how do you address this? Right? Like, what do you think are some of the ways to bridge that gap and address what you've just outlined?

DR. SPRAGUE MARTINEZ: Yeah. I think, well, information. People need information, and for us in Massachusetts, when we first did the focus groups, that was our--one of our big pushes. But at the time, there wasn't a consensus definition. So to get the state to put something on the website about long covid, there were challenges.

We recently did a legislative briefing where we said the same thing: We need more information. People need to know what long covid is. Providers need to know what long covid is. They need to understand the symptoms. They need to recognize. They need to be able--you can't validate your patient. It's hard if you're not sure what's happening.

And then not only patients and providers, but other areas like schools, you know, school districts need to have a sense because long covid can impact young people as well as adults. And so we need to be thinking about just getting the word out, getting education about long covid, and helping people understand what the process they'll have to go through.

MS. JOHNSON: You know, Chimére, one of the things that--I mean, not just Dr. Sprague Martinez, but the previous panel has mentioned is providers and this lack of education of providers. But we also know that quite often folks are dismissed by their providers when they show up with long covid symptoms or they're having these experiences. Tell us a little--

MS. SWEENEY: Don't I know it. Don't I know it.

MS. JOHNSON: I was getting ready to say, talk to us a little bit about your experience.

MS. SWEENEY: Don't I know it. Well, as Linda mentioned, you know, not knowing--the interesting thing is, is that with long covid or with the initial covid infection, you don't know what's happening with your body. That is a true statement, but you do know that something is wrong with your body.

So when I go--when we--when I went to Johns Hopkins and St. Agnes in Baltimore, Union Memorial, I went to those places a total of about 13 times, because every time I stepped in those places, I was left in a cold room for hours and hours after I would let them know about 50 to 60 symptoms I was having.

Now, I had never gone to Johns Hopkins as much as I went in the first two to three months of my symptoms, and I had everything from--I had lost 30 pounds in a month. I lost vision in my left eye. Now, how do you tell somebody that their eye is just--it's just foggy and let them walk out of your hospital with something that had never happened prior to me visiting there? I reported joint pain. I could hardly walk. I was nauseous. I was falling. I was fainting. I had a phone full of symptoms each and every time, because as a Black woman, I had to be very clear because I knew that my symptoms could possibly be challenged. So I made myself physically and mentally as astute as I could be, because I had to do that.

And talking to other Black women, I heard the same stories. They were drug tested. They were told that they were anxious. They were told that--just go home and wait it out. And I just--it took me becoming my best advocate for myself for people to start taking my symptoms seriously.

MS. JOHNSON: Why do you think doctors are so skeptical?

MS. SWEENEY: I'm a woman, and I'm Black. And that's first--first off, that's plain and simple. And unfortunately, because of all of the dismissal that happens in my community alone, as it relates to medical diagnoses and other things, I can understand why so many Black people don't like to advocate, why it's so difficult, because I had to gird myself up each and every time. I had to talk to myself in the mirror. I had to remind myself, you are going in there, and they can't tell you what's not happening because you know what's happening.

I ended up losing vision in both of my eyes due to dense cataracts, and even if people--even if doctors didn't know that now covid does cause eye issues to that extent, you do know that this is not right. It's not normal for a person at 39 years old to lose vision in both of her eyes. It's not normal for a teacher who's pretty healthy to complain of--to automatically with an MRI have spinal misalignment. It's not normal that I was an English teacher teaching students how to read and write and comprehend what they're saying and I couldn't even piece two words together.

So what's happening--what happened to me is the reason why I developed The Black Long Covid Experience, because I wanted to be able to educate and share with other Black people what this looks like in real time. And because I was so upset with the fact that in 2020 through 2021, the media, people who were responsible for telling the covid story kept missing people of color. And I was like, hold up, hold up. I might not--my ears might not work as well. My eyes may not work as well, but I do know that if it's happening to me as this one person, it's happening to others of us. And I couldn't take that chance, and that's why I became an advocate.

[Applause]

MS. SWEENEY: Thank you.

MS. JOHNSON: Dr. Sprague Martinez, what does the literature say about some of the things that Chimére just broke down? Right?

DR. SPRAGUE MARTINEZ: Yeah, yeah. Yep.

MS. JOHNSON: In terms of the way women, Black women, patients of color historically are treated by providers when they go to seek care.

DR. SPRAGUE MARTINEZ: Yeah. I mean, it's pretty consistent with the literature, your experience.

And actually, I think about a year ago there was--well, about 20-some-odd years ago, there was a report on unequal treatment, right? It was groundbreaking. I remember it was like 2003. At the time I worked for the Office of Minority Health, and, you know, the headlines were bias in the medical community, racial bias, racial stereotyping in the medical community. And the report that came out a couple of--maybe about a year ago was kind of revisiting 20 years later, and not by--no surprise that we haven't made much progress in terms of medical care and the experiences of Black people, people of color, women, in terms of their medical care experiences.

And as you were talking, I was also thinking about just the mental and emotional stress that needs to be put into preparing to go to a doctor visit and the toll that that takes on one's body, right? If you're having to really--like, at a time when you have fatigue, right?

MS. SWEENEY: Yeah. Severe.

DR. SPRAGUE MARTINEZ: At a time when you're not at your best but to have to really fight for quality medical care, and that in and of itself takes a toll on the body over time, that constantly having to be up, prepared, “I need to go to the doctor.”

I mean, when I go to the doctor, I should be able to go to the doctor and say, "You know what? I'm not feeling well today. I'm not feeling my best," but that can't happen if you're a woman of color, but you have to get dressed up. I remember when my kids were little, one of them had asthma, and we would end up in the emergency room. And I would always get dressed before we went, and my husband was like, "What are you doing? It's an emergency," but you have to--if you're not, the assumption is that, you know, you're not doing your job or you're not--something is wrong or they're going to drug test you or you're a parent--like, why are you here in the middle of the night? And the same thing when you're going in for long covid as when you're going in for any kind of treatment, really, so--

MS. SWEENEY: And I'd like to add to that, if I may.

MS. JOHNSON: Mm-hmm.

MS. SWEENEY: I became a professional patient, and what that means is, is that after the first and second time, I wasn't believing. I was just sent home basically to die. That's what I felt like was happening to me. I used to--I started taking my teacher bag, taking two showers, putting on a clean bra, clean underwear, making sure all of my clothing was clean, and the first thing I would say to those doctors when I walked--when they would walk in the triage room is, "Hey, I'm a teacher. Hey," because I needed them to know that I was somebody and that they could not continue to take advantage of my illness that they saw to use it against me. You weren't going to use--well, you don't know, or you're anxious, or this just happens. No, you weren't going to use--

MS. JOHNSON: So you went with credentials and not symptoms.

MS. SWEENEY: Yes, yes. So that's what I meant when I said I had to gird myself up.

And like Linda said, nobody should have to ever get dressed up and walk with their back straight to go to the hospital when I felt like I was dying. I should have just been free to be the sick patient that I was.

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MS. JOHNSON: So we have a question from the audience.

MS. SWEENEY: Mm-hmm.

MS. JOHNSON: Linda, Elizabeth Slanta from Virginia asks, what can you--and you can jump in too, Chimére.

MS. SWEENEY: Mm-hmm.

MS. JOHNSON: But “What can you do if your doctor doesn't believe you?” Right? This is what we're talking about. And particularly “after four years.”

DR. SPRAGUE MARTINEZ: Yeah. I think, I mean, what you're saying, what can you do, you can go back in. You can file reports. You can file a report with the hospital. You can file a report with the state. You can contact your insurance company as well and say, "I've been going to the doctor. I'm having these symptoms. They won't see me, and I'm concerned." But you have to, you know--and you can tell your doctor, "You know what? I've come in here four times. I've had these symptoms, and you're ignoring me. You're not doing your job. Either you can refer me to someone who understands my condition or"--as a patient, you have to continue. It's hard, because you have to continue to educate yourself. And in some ways, you know, it's a burden, because you're doing the job of the medical community. That's not your job. Your job is to be a patient. But I think holding that community accountable.

But don't--I think--and the hardest thing is not to internalize it. Because of the power differential between the patient and the provider, it's really easy to leave and say, "Well, maybe there's something. Maybe I'm overreacting. Maybe there's not something," but to keep talking about it.

We heard a lot from folks, from people in the focus groups, that their families sometimes didn't believe them, because they would come back from the doctor, "Well, the doctor told you there was nothing wrong. You need to pull yourself up and, you know, keep going." And so it caused family distress in some ways as well or discord in terms of stress within the family, and then people began to internalize it.

But the reality is it's--you have to keep on letting folks know and holding them accountable. You know, with a doctor, there's a medical director. There's a head of the hospital. There's your insurance company that pays the bill.

MS. SWEENEY: Absolutely.

MS. JOHNSON: You know, there's still--there is still no kind of standardized way to diagnose long covid, right? There's no, like, definitive treatment. There's no diagnostic, kind of standardized treatment of care. How does that impact patients? Like, if you're going in, you already have this kind of system that you all have just described that can be difficult to navigate at the best of times and then you were showing up with something, with a condition where there is no kind of standard diagnostic protocol, how does that impact patients?

DR. SPRAGUE MARTINEZ: Yeah. One of the challenges that we heard from folks is that there's the--it leads to a lot of referrals, and so if you're--depending--and a lot of the people that we talked to were folks who were in service industry. They're in jobs that don't really allow for a lot of time off, and so they're already missing work. They're not getting paid, and they're in a financially precarious situation. And so then they'll have to be referred and go to the referral. Then they'll have to go to another referral. So medical debt was an issue.

We also heard from folks that they just didn't go sometimes. They just went back to work because they couldn't miss work, didn't have paid time off. That was a challenge, but then just having to go for different appointments, so I think that was some of the things we heard from people in focus groups.

MS. SWEENEY: And I'd like to add to that. Patients--and I want--you know, this is patients overall. But as I speak for Black patients, it is very important that we remember that we can hire and fire doctors just like we get hired and fired from jobs. If you are not meeting my standard of care based upon the information that I have, then I need you to note that in my medical notes. And I need to--I'm going to take that. I'm either going to talk to your boss, or I'm just going to fire you and move on to someone else, because time is of the essence with long covid. The symptoms wax and wane. One minute, I might be able to remember a conversation we had five minutes ago, and ten minutes later, I might not be able to. So it's essential that patients remember their autonomy, how much power they truly hold.

I had to talk to my--I loved my doctor. I had to talk to her boss at Johns Hopkins and say she said she believed I had long covid, would say you--but she won't put that in my medical notes. So what's going to happen? And then next thing I know, after waiting four months, they said we do believe you, and we are going to place this diagnosis in your chart.

The other thing that we can do is we can encourage our government to--as President Biden, as he said--as he said before, to finish the job, right? Because Senator Sanders was talking about creating a package where we would get a certain--I think it was maybe--it was $1 million a year or $1 billion--I'm sorry. My mind can't recall. But he was talking about doing that for our community. We need that desperately. We haven't heard from him about that in a couple of months, right?

Also, Health and Human Services was supposed to start a long covid advisory council and board, and it's for people to have information. What happened?

MS. JOHNSON: You know, Linda, I know that you have been very involved when it comes to the definitions of long covid and kind of the RECOVER project and what could be done kind of at the federal level to help folks get the help that they need. Talk to us a little bit about, do we have a definition of long covid--first of all, is there a standardized definition of long covid?

DR. SPRAGUE MARTINEZ: There's a consensus. There's a consensus definition--

MS. JOHNSON: Okay.

DR. SPRAGUE MARTINEZ: --the extent to which it's been adopted by our government. I think we need to continue to push for, but there is a consensus definition.

We just did a legislative briefing in Massachusetts recently to talk about, well, what does that mean for us as a state? Now we have a definition. What are we going to do with it in terms of public awareness campaigns and really thinking about what people need?

But I think that's an important piece with long covid, because there was a time when we had different benefits in place during the pandemic itself, and then those went away. So people had guaranteed paid time off, right? They could take a day off from work. There are things that we could do around that in terms of putting services in place for people, making sure people have time off, making sure people can access benefits.

There was recently a report also around guidance for Social Security Administration, because that is another challenge for people with long covid if they're on disability or if they need to go on disability or short-term disability. There's a lot of pieces that we can begin--social supports that we can begin to put in place for people so that they can continue to live in their lives.

MS. JOHNSON: Absolutely. And we are just--we're going to have to end there. We're just about out of time. I feel like I could continue asking the two of you and engaging in conversation for many, many more minutes.

MS. SWEENEY: May I say this, though, real quick?

MS. JOHNSON: Yes.

MS. SWEENEY: I just want to let people know that I am in the process of developing a film called "Black and Unbelieved: Finding Long Covid Care Through an Ancestral Connection." So I'm still looking for funding for that, because I want to help Black people tell their stories of long covid and also educate and empower Black people on how to advocate for themselves medically without reinventing the wheel.

MS. JOHNSON: That is a great punctuation to this--

DR. SPRAGUE MARTINEZ: Yeah.

MS. JOHNSON: --end of this program. But we're not done yet, so stay with us. New York City's Health Commissioner will be on stage soon, ready to discuss the agency's efforts in dealing with long covid.

Thank you both so much.

MS. SWEENEY: Thank you. Appreciate you.

DR. SPRAGUE MARTINEZ: Thank you.

MS. SWEENEY: It's so good to see you. Can I hug you?

MS. JOHNSON: Yes.

MS. SWEENEY: I'm going to hug you.

[Applause]

[Video plays]

MS. WONG: Great. Welcome. Good morning. Thank you all for joining us both here in person and online. My name is Lana Wong, and I'm a founding member of the diverse women moderators bureau, Moderate the Panel.

So in this session, we'll be discussing long covid's impact on the workforce. So many people--for many people, the devastation of the pandemic seems like a distant memory, but as we've heard this morning and as we'll hear right now, that devastation is continuing. And unfortunately, it's having a persistent impact on both public health and the economy as millions of working-age Americans are affected by long covid and many have had to leave their jobs.

So around 20 percent of adults, 30 to 49 years old, the heart of the workforce, have been affected by long covid, and many have debilitating symptoms, which have caused roughly one in five not to return to work.

So the virus keeps evolving, transmission continues, and we're really faced with the question, how can business leaders support the unique needs of employees with long covid and manage its impact on their organizations?

So thankfully, we have two experts here to help us unpack that issue. Please help us welcome Rachel Beale. She is a long covid patient and advocate. She's a mother of three from Virginia, who recently testified before Congress about her struggle with long covid's debilitating symptoms, which eventually forced her to step down from her role as an HR director at a community college. So thank you for being here, Rachel.

MS. BEALE: Thank you.

MS. WONG: We also have Dr. Ian Simon, who is the director of the Office of Long Covid Research and Practice with the U.S. Department of Health and Human Services, where he leads the federal government's response to long covid. He's a virologist by training, and he's worked at the federal government for over a decade, where he also had a previous role at the White House, leading pandemic prevention and biosecurity policy. Welcome, Ian. Thank you.

DR. SIMON: Good to be with you.

MS. WONG: So let's start off with you, Rachel. Could you tell us a little bit about your personal experience with long covid?

MS. BEALE: Yes, of course. So for me, I've had long covid for over three years now, and, you know, I have all of the symptoms, you know, that are listed, that everybody lists out. But the ones that affect me the most right now is the fatigue. It just never goes away. I have chronic pain, and I have brain fog too.

One of the things--one of the things that has changed with me is I make plans, and then I have to cancel them. My family has to adapt to this new lifestyle of everything revolving around how much energy I have. So yes, long covid has had a big impact on us.

MS. WONG: And on your professional life as well?

MS. BEALE: Professionally, my career just stopped. You know, after I'd been sick for a couple months, the doctor released me to work about 20 hours a week, and I was able to telework, and I could plan my workday as needed. But I couldn't even--I couldn't do that. I think it only lasted about a week. I would get really sick. About an hour or two in, I'd get really sick, and I just couldn't do it.

So as a former HR director, I know how this plays out, and I knew that I would eventually be terminated. And it's like being on a runaway train. It's difficult.

MS. WONG: Sorry. But thank you for being here to share your story.

So, Ian, let's turn to you. Some of the previous discussions have touched on this kind of need and new kind of working definition of the disease that was just launched in a report a month ago by the National Academies of Sciences, Engineering, and Medicine. So why do you think this is such an important step, and what are some of the common symptoms that do cause people to step back from work?

DR. SIMON: Thanks so much. First, let me thank Rachel for sharing her story. Thank you so much. It's one thing to have to go through this every day and another to put the energy out to really educating the public about what long covid means and what impact it has, so thank you.

The definition that we've heard about already this morning is one that our office really saw the need for years ago. We often talk with partners in the government, outside the government, researchers, doctors, patients, caregivers, and what was clear was that they needed a common set of terms, a common definition to all, kind of describe this very complex disease, but describe it in a common way.

So the Department of Health and Human Services sponsored the National Academies, independent group of experts, of doctors, researchers, people with long covid, to really examine the state of the science, to engage external stakeholders, to understand what long covid means to a whole diverse set of people, and come up with a consensus definition that they published last month. What's really great about this now and why it's important is that now a diverse set of folks can talk about long covid in the same way, can understand that it is multi-systemic. It attacks many different organ systems. It's very complex, but understand that if you have one set of symptoms versus another, it's all under sort of the same constellation of long covid. And then in terms of common symptoms that keep folks from really engaging in their normal lives, it is the things like Rachel said, like the fatigue, the brain fog, the "post-exertional malaise," which is a term we've heard already today, where light to moderate amounts of exertion can lead to a crash later on. And that really keeps folks from returning to work, returning to their normal lives.

MS. WONG: Okay. And now let's take a shift to the economy. So long covid is obviously having a big impact on the economy. If you've seen some of the factoids out there, there's a Harvard economist that's put out the figure of $3.7 trillion of impact. Do you foresee this continuing, and what are your recommendations for businesses and policymakers to really try and mitigate this impact?

DR. SIMON: Yeah. You know, those studies, like the ones you mentioned and others, really have brought into focus the connection between long covid, its impact on employment and, thus, the impact on the wider economy. But it's not just the economists. It's also through the public health figures. We know that one in five folks that have covid-19 develop long covid symptoms, and of those with long covid, adults--one in four adults cite and they report having significant activity limitations. So we really do see that there's an impact with the working-age population being able to stay at work, return to work.

What we've heard from employers is what works for them--and not every case, but in many cases, bring in things like accommodations, bringing things like flexible work schedules, allowing folks who might have energy in the morning, but tend to crash in the afternoon, allowing them to have the ability to put in a full day but just maybe not in the same eight-hour block, allowing for continued breaks.

But employers and employees are not alone in this. So our office, what we do is that we work across the different federal agencies, whether they're public health agencies or otherwise, to support their work. They're all working on long covid.

So one example is the Department of Labor. Department of Labor has what's called the Jobs Accommodation Network, or JAN. And it's this organization and that work where they've actually developed guidance documents for employers and employees and people seeking employment to educate them about accommodations, identifying appropriate accommodations, and really helping them get smart about what it will take to get back to work.

MS. WONG: That's great.

So I want to hear from Rachel and your perspective. You've really brought a very unique perspective to this conversation, because of course, you were an HR director before you were diagnosed with long covid. So can you tell us how was your situation handled by your own organization, and what do you think organizations and business leaders can do to support employees with long covid, and how can they prevent it?

MS. BEALE: Sure. So for me, I was working at a community college, and they were very accommodating. You know, we have policies in place, and they followed along with those. But also, they were trying to do whatever they could to support me so that I could return to work, and that just wasn't--that just wasn't meant for me, because I had to step down.

But one thing I think organizations need to realize is that long covid is covered under the Americans with Disabilities Act, and so employers need to think about providing reasonable accommodations for them, their employees with long covid that are able to work. There's 18 million of us with long covid, and we're all suffering differently. We all have our own version of long covid, and what works for one of us doesn't work for the other. So, you know, some of us are bedbound. Some of us are homebound. Some of us have a little bit of energy, and some of us are able to work.

You know, as a HR professional, when you have a sick employee go out, you really hope that they're able to recover and that they're back to work within 12 weeks, and the ones that are able to do that, they do need--they probably will need some basic accommodations, like Ian said, with the flexible scheduling and the telework and even things like making sure your workspace is ergonomically correct for those that have, you know, the joint pain. And I think that's a conversation that HR should have with their employees, and maybe they should start that conversation to help make sure that their employees are comfortable while they're at work.

I think it would be wise for organizations to consider offering covid-19 vaccinations to their employees, and I think that they could very easily do this by just adding the covid-19 vaccines to their wellness programs. You know, a lot of organizations offer flu shots. So I'm sure this covid--the covid-19 vaccine could be handled just the same way. And, you know, they would see less absenteeism. Workers would feel safer being in the office, and it would be less likely to spread in the office as well.

For me, when I got sick, the vaccine wasn't available. So I wasn't able to get that. So when I got sick, you know, I had already registered with the Department of Health. I was waiting. I was one of the ones waiting to get the vaccine, but I wasn't in the right category. So that's just something that I want to share with everybody, that you don't want your life to be put on hold, like mine has been, you know. If there's anything you can do to not get long covid, please do that. I wouldn't wish this on anyone.

MS. WONG: Thank you, Rachel. So, Ian, over to you. In your role, you are really playing a key role in coordinating the federal response to long covid. So from where you sit, what do you think are the priorities for business leaders to really support those with long covid, and also, looking forward towards the fall, what preventative measures do you think should be taken to prevent covid as well as long covid?

DR. SIMON: Yeah. So really key to our work is to take what we hear from people living with long covid and turn that into the best efforts across the federal space, forging partnerships both within the government and then partnerships outside with patient organizations and others. And central to that is to organize folks around things like I mentioned, around making sure the guidance from Department of Labor gets out there or working to hone surveillance so that we really understand long covid is real and it's a burden on society and on our economy.

For employers going into this fall season, you know, we really would love for them to encourage the same type of preventative measures that we've seen work before, encouraging vaccination, encouraging wearing masks when folks are ill and when it's appropriate, encouraging and providing some ventilation and clean indoor air, allowing for flexibility. If folks are sick, to stay home so that they stop the transmission disease and don't pass it on to the coworkers.

MS. WONG: Okay, great. And then if we can also discuss something that has also been mentioned earlier today, the RECOVER initiative that NIH launched in 2021. What are your views about the program and the progress and what lies ahead?

DR. SIMON: Yeah. So the RECOVER initiative, as we heard, it's a massive investment, the--sort of very unique in its scope and scale, orienting this massive research engine at a complex multifaceted chronic condition where really, we don't have a ton that's known in terms of diagnostics or treatments.

We heard about the clinical trials that are going on. They've got eight clinical trials going on right now. They're testing 13 different potential treatments, but the work is not done. The work does not stop there, and pretty soon, we'll hear about NIH thinking through the next wave of clinical trials, not just observational trials but getting to clinical trials. I don't have a ton of details now, but what we do know is that it will be informed by doctors. It will be informed by people who are living with long covid. It will be informed by people whose experience of long covid either as a researcher in the clinic or as a patient, they're going to be used to inform this next wave of clinical trials.

MS. WONG: Okay, great. Well, I might throw in one more question, because I know you're a virologist by training. Are you hopeful? What is your kind of long-term forecast? I know that's probably an impossible question. Sorry. I'm going off script here.

[Laughter]

DR. SIMON: No, no, no. It's interesting. So being trained as a scientist, right, you're trained to think about the evidence of what do you see in front of you and how does that inform any kind of conclusions you might draw?

I mean, what I see is a lot of energy, a lot of dedication, a lot of really smart people who understand how important it is, what the urgency is, to make sure that people that are living with long covid, struggling with long covid, the caregivers have the tools they need, have the relief they need, have the treatments they need to go back to normal life.

So one of the things I see is a tremendous amount of goodwill, and I am hopeful that with a little goodwill and a little bit of funding from our government, we can really crack this case.

MS. WONG: Great, great.

And, Rachel, any last words before we wrap it up?

MS. BEALE: You know, I am excited to be here because this is--this is an opportunity for me to speak out about my experience with long covid and to bring more awareness to long covid. I think it's important that there's more general education for people to even know what this illness is, and we definitely need more funding for the research, for the medicine. Right now, we don't have any kind of medication that's specifically for long covid. So yeah, it's over three years for me, and I'm still just taking--you know, treating the symptoms, whatever the doctors prescribe, but nothing is actually curing the long covid. So that's our goal.

MS. WONG: Okay. Well, on that note, let's hope that this awareness and the advocacy can help get us to some good solutions for the millions of people who are affected because this problem is not going away. And so I thank you both, Ian and Rachel, for being here, for the work that you're doing, and for shining a light on this issue that really is a trillion-dollar issue.

So thank you all, and if those of you online want to add your voice or have your own experiences to add to this conversation, please do so using the #PostLive.

My name is Lana Wong, and now I'm happy to pass it back over to our colleagues at The Washington Post. Thank you so much.

[Applause]

[Video plays]

MS. CASEY: Good morning. I'm Libby Casey, senior news anchor here at The Washington Post, and I'm so grateful to be joined by Ashwin Vasan, the commissioner of the New York City Department of Health and Mental Hygiene since 2022. Welcome to The Washington Post, Commissioner.

DR. VASAN: Thanks. It's great to be here.

MS. CASEY: So earlier this year, your agency announced a multiyear research study looking at the long-term outcomes among adults infected with covid. What do you hope to learn? What's the goal?

DR. VASAN: Well, we think we're coming from the government perspective and from the perspective of having real experience doing this in New York City. You'll recall after the tragedy of September 11th, we set up the World Trade Center Health Registry, and on the basis of following people for decades--we continue to follow them--billions of dollars of support, resources, disability payments to victims and their families have emerged because of the understanding generated by that cohort. And that's a core principle of public health.

Just look at cohort studies like the Framingham Heart Study, our nurses and physicians' health studies. These have all advanced our understanding of disease, and so what we're doing with this long covid cohort study is trying to define what are our obligations and our responsibilities to the people of New York and to do that on the basis of real evidence and understanding.

And so we will be following over 10,000 New Yorkers over the next several years using cross-sectional survey instruments to really assess not only the physical and clinical impacts of what is being termed long covid and that constellation of symptoms, but also the social, economic and other impacts, community impacts, family impacts, mental health impacts so that we can really understand what is the long-range effect and therefore design long-range responses as government.

MS. CASEY: So where are you at in this process? Have you secured those 10,000 individuals to participate?

DR. VASAN: Yes. So we--this cohort is a subset of a larger--around a 30-plus-thousand cohort that we use on a recurring basis. We call that our NYC health panel, and we can deploy that data quickly. So we've done our first cross-sectional survey, and just about every six months, we'll be doing follow-up surveys over the next couple of years. And we'll hope to extend that out in years to come with more funding.

We got our initial funding through some CDC money, and then we'll be extending that with the resources that we can put together to make this a permanent part of our public--long-term public health response to covid in New York City.

MS. CASEY: We've been hearing a little bit about the NIH's RECOVER initiative, the $1 billion national effort to understand long covid. How will this study be different?

DR. VASAN: I'm so glad that the NIH is doing this, and I'm really proud of our federal partners in putting this together. It's extremely comprehensive. It's extremely broad, and it really is trying to get to this fundamental understanding of what is--what are we dealing with? What are the biological mechanisms, the social mechanisms? What are the--what's the ideology of this, and how is it playing out over time? You know, as opposed to the World Trade Center tragedy, that was an event with an exposure at a particular point in time, and then it ended. And we had a fairly good sense of what that exposure was. With covid, you know, not only is that exposure continuing, but we're really learning to unpack, or we're starting to unpack what is the constellation of symptoms? What's the case definition? What's the inclusion criteria for long covid?

And I'm glad that NIH and participating hospitals in New York City as well are going to really stand up to broaden that understanding, and it will ultimately aid us as well in New York as we design policy, programs, and other supports for people living with the consequences of long covid.

MS. CASEY: For people who are hungry for information, how will the results be rolled out? You know, sometimes in the scientific community, it's like kept until everything can be really verified and documented, and then it's released. Will there be sort of piecemeal? Will there be an evolution to how we learn about what you're discovering and what you're finding out?

DR. VASAN: That's why I'm so glad that we're doing this through what we're calling the--what we've called the NYC Health Panel, because we use that panel to generate our health opinion polls, and those are much more routinely released. So while there will be plenty of peer-reviewed research, there will be plenty of scholarship around this cohort, that is not our principal aim. Our principal aim is not scholarship. Public health, the work of public health cannot be principally scholastic. We have to really put our data into action, and this is a part of a much wider effort to take our data and put it into the public domain much more quickly.

We established a Center for Population Health Data Science last year, which is not only looking at data integration across city between health care and public health and other actors, but how do we disseminate much more quickly? So you'll be seeing results from this much more regularly and in parcels that can advance understanding as it goes, because we know there isn't necessarily going to be a big frame shift in understanding, that our understanding is going to evolve over time as we learn more.

MS. CASEY: Not to be a greedy journalist, but how soon? What are you thinking? About next year? Are you thinking a couple of years on this?

DR. VASAN: Well, we just deployed the first survey, and we're collecting and analyzing that now. So I'll defer to my epidemiologists to decide when that first tranche of data could be ready, but I know they're working on it now.

MS. CASEY: Do you find that people are really hungry for knowledge about this and just--

DR. VASAN: Yeah. I mean, it's getting back to that point I made around what's our obligation--what are our obligations? What are our responsibilities to people?

New York City was the epicenter of covid in 2020. Over half of the people who died from covid in our city, 50,000 people died in the first three months. So we experienced enormous trauma, enormous strain in our city in 2020, in particular, and our obligation then was to save as many lives as we could, to prevent as much suffering as we could.

But our obligations don't end there, and in order to really define what those are as government, we need to really understand what we're dealing with in the long term. And as you've done in this wonderful day of panels, it's not just the health impacts. It's the social impacts, the economic impacts, the workforce impacts. So we need to use these data to help us advance that understanding and so that we can step up for our people. That ultimately is public service.

MS. CASEY: You know, when it comes to the workforce, there's really a question about just how disability claims may change, if there will be a wave of them, if there will be really a boost in them due to long covid, which could be a significant expense for a city, for a state. Is the government prepared for a wave of impairment that could come as more research is published and we learn more?

DR. VASAN: Well, I mean, the only way to get prepared is to know--to know the data. So, you know, we are going to get prepared once we know the data, but I think we're all kind of wrestling with the notion that we're not done with this. Not only are we not done with covid, it's around us--I see folks taking precautions now, so that's great. But we are not done with the long-range implications of covid. And so, you know, the--our civic infrastructure is ready to step up, but we need these data to better design those kinds of benefit structures, much as we did with the World Trade Center tragedy.

You know, we know how to do this once we have the data in hand, and we're also--you know, the World Trade Center work wouldn't have happened without strong advocacy, and so I'm so glad to see long covid advocates here today as well, because without that push, it really helps government to move and to start to put some of their resources into action as, as you say, this understanding evolves as we put out the research.

MS. CASEY: We have a question from the audience. Jennifer Herrera from Virginia asks, “How do we work to protect people from getting long covid in the first place when all mitigation measures have been largely abandoned (and in some cases threatened like mask ban proposals)?”

DR. VASAN: You know, my job as the public health leader of our city is to continually advance and argue for and represent what works, and we know masks work. High-grade masks work. So we'll continue to push for the use of masks. We'll continue to push for vaccination. The data is very clear now that vaccination reduces your long-term risk of developing long covid, and so we'll continue to push these medical countermeasures.

You know, one of the lessons of the pandemic is that a lot of the responses around tradeoffs and where we are in a particular time really represents where those tradeoffs are. So my job is to continually be that public health advocate, that public health voice in the room saying this--these are the implications if you choose to do X, Y, or Z. But ultimately, those decisions need to be made with a broader view of social, economic, cultural, societal impacts, and public health needs to be indexed appropriately according to where we are.

At the height of the pandemic, public health had to be number one. Public health had to be top of mind because we had to save lives, and now the question is, where does it fit in that index of tradeoffs? I'll constantly say it should be number one because that's my job, but there are other decision-makers out there that need to really appropriately weigh those things. And I think it's important for us as public health officials to be those strong advocates but also to openly acknowledge that there are these tradeoffs, right, that people who disagree with us or that elected leaders who ultimately make decisions that don't put public health number one, they're not bad people. They're not horrible actors. They're actually weighing and wrestling with the tough choices in society, and we just continue to bat for

public health every single day.

MS. CASEY: Well, New York City's Mayor Eric Adams, New York Governor Kathy Hochul have both suggested that mask bans on subways could be a good idea. What's your message to officials who are considering that?

DR. VASAN: I will continue to say to them, as I have both publicly and privately, that masks work, and we want to ensure that everyone who wants to use a mask, that should use a mask when covid rates are rising, that feels comfortable wearing a mask should have that option on subways, in crowded settings, out in public, to their comfort, to their level of comfort and to their level of risk. And ultimately, that is a decision that needs to be made at the individual level. I empathize with and I understand the concerns that they have around safety and other issues. So, you know, I won't comment on kind of how they're making that decision, but every single time I'm in that room, I'm saying we need this tool and people need this tool. People at risk need this tool to remain an option for them, especially because we know covid will continue to ebb and flow. We're living with it. This is the new normal. So masks shouldn't go anywhere. And so I'll continue to bat for that.

MS. CASEY: And we are seeing a rise in covid cases in New York City right now. What do you attribute that to, and how are you encouraging New Yorkers to protect themselves?

DR. VASAN: I mean, the best way to protect yourself against covid and long covid is to not get it in the first place, and so, again, masks work, taking precautions work, staying home if you're sick, getting tested regularly and adapting your behavior, and of course, staying up to date on your vaccines.

These new FLiRT variants are, of course, outpacing old variants, but this is the natural level. You just had a virologist on stage. You know, that is the natural evolution of the Omicron variant and all of its members of its lineage. It's a fast-moving, highly adaptable, but thankfully less virulent form of the virus than we've seen in past years. And so I think this will continue to be how we manage this.

There will be new variants after new variant after new variant. Thus far, it hasn't shown signs. We can't totally rule it out, but it hasn't shown signs of transforming into something that could be more virulent or more deadly.

So for now, the best way to protect yourself is to stay up to date on those medical countermeasures, to use PPE as needed, and to continue to take those steps to keep yourself safe, as well as those around you safe, as well as the people in your life who might be at higher risk, older adults and people with disabilities and underlying chronic conditions and so forth.

MS. CASEY: When you stepped into this role of health commissioner, you faced protests over covid-related mandates and restrictions that were put in place under the previous leadership, ended up being a pretty hot-button job. What did you learn from that experience?

DR. VASAN: You know, yeah, it was an interesting experience to have covid protesters or just have protesters at my home every week for six months.

MS. CASEY: At your home.

DR. VASAN: You know, scaring my kids and requiring that I had a police detail for the better part of two years.

MS. CASEY: And to be clear, what were they protesting? Just they were anti--

DR. VASAN: It's unclear. Anti--I think--so what--

MS. CASEY: Anti-regulation, anti-enforcement.

DR. VASAN: Where I was getting at is I think that at a time when we pulled down--most of our covid restrictions or policies were pulled down before I started as commissioner, when I was an advisor. And what we saw with that pulling down of those restrictions--New Yorkers were very compliant, frankly, with the restrictions because they were traumatized, and they were scared. And when we said as a city that it's okay to come back out, to liberalize your behavior, to take off those restrictions, what we saw come with it was, I think, a lot of pain and a lot of trauma, a lot of pent-up anger and frustration. And they found--they found someone who could take that and someone where they could direct that anger and that protest. So yeah, it was definitely a shock, but I tried to view it with some empathy for what people have been through.

Now, there was a lot of other things mixed in, you know, political statements about the president and about other officials, and so there was a witch's brew of different things. And it evolved over time.

I'll never forget one of the most sort of salient times was when they finally approved the under-five vaccine in June of 2022. The same protesters who had been coming in front of my home decided to take chalk paint and paint "baby killer" in the vein of Black Lives Matter across my street in front of all my neighbors. They used chalk paint. So then it rained, and then it washed away. But it was quite a--you know, just a lot of pain, a lot of anger, a lot of frustration, a lot of anti-government sentiment, a lot of leanings, you know, political leanings that are of a particular type. But I choose to take away from that time, a spirit of empathy for my fellow human, who we all went through this incredible tragedy, this incredible pain, and everyone processed it differently, and sometimes you process it in ways that maybe aren't the healthiest or the clearest or based in--based in fact.

MS. CASEY: On a final note, what would you say is the biggest challenge that you're facing in public health right now?

DR. VASAN: Well, you know, we have come out of the worst pandemic in a century, and we're living longer--shorter and less healthy lives. Life expectancy has fallen in New York City. It's fallen across the country. We're so far behind our peer countries, our OECD peer countries, that that reflects a real design problem. It's not just covid that explains those rates, why we are five to six years behind our peer countries as a nation, and we need to start reinvigorating this conversation of why. What are we spending on? How can we get off this unsustainable path of spending on acute care and start to shift the gradient of our work and our spending into prevention, into communities, and into the activities that are really going to generate health and not just more care?

And so we launched an initiative called Healthy NYC in--last year in order to be our North Star for our population health system and our public health system to get us back to--get us back those years that we lost, but also put us on a trajectory for the highest-ever life expectancy in New York City by 2030, by addressing the leading causes of premature death, the leading causes of excess death, and really driving an equity-focused and risk factor-focused approach focused on prevention across New York City as our North Star.

Last thing I'll say is for three--the better part of three years, covid was that North Star for all of us, and I choose to be optimistic because despite that challenge, we saw public health, health care, civil society, nonprofits, philanthropy, the private sector pulled together, because we knew what the assignment was and we knew what the enemy was. I think our next assignment is how to get on track to live longer, healthier lives, and to pass that world on to our children and our children's children, because they're living longer than us, because they're healthier than us.

MS. CASEY: Commissioner Ashwin Vasan, thank you so much for joining us here today. Really appreciate it.

DR. VASAN: Thank you so much.

[Applause]

MS. CASEY: Well, that is all for today's event. Thanks to all of you for joining us here at The Washington Post and joining us online. Have a good day.

[End recorded session]

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