I spent a lot of time this weekend talking about the U.S.’s lack of Long COVID data, particularly our inability to answer such questions as, “How many Americans have Long COVID?” and, “What is the condition’s demographic breakdown?”
In comparison, I pointed other journalists to reports from the U.K.’s Office for National Statistics. This office regularly surveys Brits on their Long COVID experiences, asking a representative sample of the population whether they are experiencing any long-term COVID-19 symptoms.
The most recent report, published in early April, found that about 1.7 million people—or 2.7% of the U.K.—was “experiencing self-reported long COVID” (defined as symptoms persisting for four weeks or more after an initial infection). Imagine what the scale of Long COVID might be in the U.S.
Hospitalizations of young children during Omicron: A major study released in the CDC’s Morbidity and Mortality Weekly Report (MMWR) this week describes hospitalization rates among children ages five to 11, focusing on the Omicron wave in December through February. Findings include: about nine in ten of the children hospitalized during this period were unvaccinated, and hospitalization rates were twice in high in unvaccinated children compared to vaccinated children, demonstrating the importance of vaccination in the five to 11 age group.
COVID-19 death rates by race and ethnicity: Another notable study published in MMWR this week: CDC researchers used provisional mortality data (based on death certificates) to study COVID-19 death rates among different racial and ethnic groups, comparing 2020 and 2021. Death rates for Hispanic, Black, and Native Americans were closer to the rates for white Americans in 2021 than they had been in 2020, the report found; this is likely tied to lower vaccination rates and, consequently, higher death rates in conservative and rural areas. For any reporters seeking to investigate these patterns in their regions, the Documenting COVID-19 project’s CDC mortality data repository includes county-level death data from the same source as this MMWR report.
New CMS data on hospital and nursing home ownership: Nursing homes and other long-term care facilities have been under increased scrutiny during the pandemic, as COVID-19 revealed major flaws in facilities’ ability to care for vulnerable seniors, A series of new datasets from the Centers of Medicare & Medicaid Services (CMS) aims to enable more scrutiny: the datasets include changes of ownership for skilled nursing facilitiesand for hospitals. CMS plans to update these datasets on a quarterly basis, according to a press release about the new data.
New funding for patient-led Long COVID research: The Patient-Led Research Collaborative (PLRC), a group of Long COVID patients that have produced leading research on their condition, announced this week that they’ve received $3 million in funding. This funding comes from Balvi, a fund for high-impact COVID-19 projects established by Ethereum co-creator Vitalik Buterin. PLRC announced that $2 million will go to start a pool of Long COVID research grants—to be awarded directly by patients—while the remaining $1 million will fund a series of PLRC-led studies. I look forward to reporting on the results of this research! (Also, related: this week, I updated the source list of Long COVID patients and experts willing to talk to reporters, which I compiled with Fiona Lowenstein.)
FDA authorizes breathalyzer for COVID-19: The latest new COVID-19 test is a breathalyzer: this machine, developed by Texas-based diagnostics company InspectIR, analyzes chemicals in a person’s breath to quickly detect compounds signifying a coronavirus infection. This test can deliver results in just three minutes—even faster than an antigen test—but it needs to be performed in a medical setting; InspectIR is working on a version that could be hand-held, like breathalyzers for alcohol. Impressive as the technology is, this data reporter is asking: how will those test results get reported to public health agencies?
Lessons learned from the non-superspreader Anime NYC convention: Last fall, one of the first Omicron cases detected in the U.S. was linked to the Anime NYC convention, a gathering of more than 50,000 fans. Many worried that the event had been a superspreader for this highly contagious variant, but an investigation from the CDC later found that, in fact, Omicron spread at the convention was minimal. My latest feature story for Science News unpacks what we can learn from this event about preventing infectious disease spread—not just COVID-19—at future large events. I am a big anime fan (and have actually attended previous iterations of Anime NYC!), so this was a very fun story for me; I hope you give it a read!
my latest @ScienceNews feature: despite Omicron's presence at the Anime NYC convention last fall, it turned out not to be a COVID-19 superspreader. what can we learn from Anime NYC about preventing disease spread at future large events? (1/5) https://t.co/MMzlyInTiypic.twitter.com/ZMOJ7EEvt9
States keep reducing their data reporting frequency: Last Sunday, I noted that Florida—one of the first states to shift from daily to weekly COVID-19 data updates—has now gone down to updating its data every other week. This is part of an increasing trend, writes Beth Blauer from the Johns Hopkins COVID-19 data team in a recent blog post. “As of March 30, only eight states and territories (AR, DE, MD, NJ, NY, PA, PR, and TX) report case data every day of the week,” Blauer says. And it seems unlikely that states will increase reporting frequencies again without a major change in public health funding or the state of the pandemic.
Biden administration announces Long COVID task force: This week, the Biden administration issued a memo addressing the millions of Americans living with Long COVID. The administration is creating a new, interagency task force, with the goal of developing a “national research action plan” on Long COVID, as well as a report laying out services and resources that can be directed to people experiencing this condition. It’s worth noting that recent estimates from the U.K. indicate 1.7 million people in that country (or one in every 37 residents) are living with Long COVID; current numbers in the U.S. are unknown due to data gaps, but are likely on a similar scale, if not higher.
Long COVID data just out from the ONS TL;DR -1.7 million people now living with long COVID (28 day definition) – that's 1 in 37 people in the commiunity -780,000 have had this for *more than a yr* -at least 334000 got this during the omicron wave (impact since Feb not felt yet)🧵
Study indicates continued utility for COVID-19 testing in schools: During the Omicron surge, testing programs in a lot of schools collapsed, simply because institutions didn’t have enough resources to handle all of the students and staff getting sick. The surge led some schools to consider whether school testing programs are worth continuing at all. But a new study, released last week in The Lancet, suggests that yes, surveillance testing can still reduce transmission—even when schools are dealing with highly contagious variants. (Note that this was a modeling study, not a real-world trial.)
Preprint shows interest in self-reporting antigen test results: Another interesting study released recently: researchers at the University of Massachusetts distributed three million free rapid, at-home antigen tests between April and October 2021, then studied how test recipients interacted with a digital app for ordering tests and logging results. About 8% of test recipients used the app, the researchers found; but more than 75% of those who used it did report their antigen test results to their state health agency. The results (which haven’t yet been peer-reviewed) suggest that, if institutions make it easy and accessible for people to self-report their test results, the reporting will happen.
Biden administration is reportedly shifting hospital reporting on COVID-19 patients: During the Omicron surge, there’s been a push among some COVID-19 experts (and in the media) to separately report patients who are admitted to hospitals because of their COVID-19 symptoms from patients who are admitted to hospitals for some other reason, but then test positive later. This push, also called the “with” versus “for” issue, has reached the White House, according to a recent report from POLITICO. The Biden administration now wants all hospitals to separate out their COVID-19 numbers in this way, to get a better picture of severe disease caused by the virus. Such a shift may be tricky for hospitals to follow, however, in part because a lot of people who appear to be incidental, “with COVID-19” patients actually had rare symptoms or chronic conditions exacerbated by the virus. “You need a panel of experts to review the cases” and judge this issue, expert Eric Topol told POLITICO.
Long-term cardiovascular outcomes of COVID-19: A new paper from researchers at the Department of Veterans Affairs (VA), published this week in Nature Medicine, sheds light on potential long-term COVID-19 impacts for the heart. The researchers used national health records databases from the VA to study over 150,000 COVID-19 patients—a much larger study size than most Long COVID research in the U.S. The paper found that, after their first month of infection, COVID-19 patients are at increased risk for a variety of cardiovascular issues, including heart inflammation and heart failure. Outside scientists commenting on the paper in Sciencemagazinesaid that the findings clearly demonstrate that COVID-19 has grave long-term risks for heart health.
Two House Democrats called on the CDC to release more Long COVID data. This week, Rep. Ayanna Pressley (from Massachusetts) and Rep. Don Beyer (from Virginia) sent the CDC a letter insisting that the agency report estimates of Long COVID infection numbers, including demographic breakdowns by race, gender, and age. “Collecting and publishing robust, disaggregated demographic data will help us better understand this illness and ensure that we are targeting lifesaving resources to those who need them most,” said Rep. Pressley in a statement tothe Washington Post. While studies that may, theoretically, help provide such data are in the works via the National Institutes of Health’s RECOVER consortium, the consortium has yet to release any results. Long COVID continues to represent one of the biggest COVID-19 data gaps in the U.S.
We don’t know yet whether cannabis can treat COVID-19, despite promising early studies. Recent studies have shown that CBD, along with other products containing marijuana and hemp, has some capacity to block coronavirus spread in the body in lab-grown cells and in mice. The studies were quickly turned into sensationalist headlines, even though it’s too early to say whether these products could actually be used to treat COVID-19. An excellent STAT News article by Nicholas Florko and Andrew Joseph describes the studies and their limitations, as well as how these early reports of COVID-19 treatment potential are “adding to the FDA’s existing CBD headache” when it comes to regulating these products.
Have you received your free at-home rapid tests from the USPS yet? Last week, I described the federal government’s effort to distribute at-home rapid tests to Americans free of charge, along with the equity issues that have come with this initiative so far. This week, I saw some reports on social media indicating that people have started receiving their tests! Have you gotten your tests yet? If you have, I would love to hear from you—in absence of formal data from the USPS, maybe we can do some informal data collection on test shipping times within the COVID-19 Data Dispatch community.
Post-Acute Sequelae of SARS-CoV-2 infections estimates and insights: Continuing with the Long COVID theme of this issue: I recently learned about this dashboard from the American Academy of Physical Medicine and Rehabilitation. It provides estimates of Long COVID cases in the U.S. based on case numbers from Johns Hopkins University and a model assuming that 30% of surviving COVID-19 cases will lead to long-term symptoms. The dashboard includes estimates of total Long COVID cases, cases over time, and cases by state.
Disease severity among hospitalized patients (CDC): The CDC added a new page to its COVID-19 dashboard this week, providing data on the shares of COVID-19 patients in U.S. hospitals who require intensive care and ventilation, and who die while at the hospital. The data come from the CDC’s hospitalization surveillance network and other federal hospital sources.
Vaccination dashboard annotations: This weekend, I updated my annotations page detailing how every U.S. state and several national sources track vaccinations. 39 states are now reporting some data on booster shots or third doses, I found, though most of them still aren’t providing demographic data reflecting the recipients of these additional doses.
This week, a new resource that I’ve been working on for the past few months went live: a comprehensive source list including Long COVID patients and experts who are willing to talk to reporters. This source list project was a collaboration with Fiona Lowenstein, who’s a journalist, speaker, consultant, and founder of the Body Politic support group for Long COVID patients.
Here’s some info about the source list:
It includes over 300 Long COVID sources from the U.S. and other countries, spanning all ages, race and ethnicity groups, and other demographics.
It’s sorted into four categories: patients who identify as Long COVID experts and/or advocates; patients who aren’t experts but can speak to their own lived experience; other experts (scientists, clinicians, advocates, etc.); and related conditions and experiences.
Patients and experts have identified topics about which they’d like to talk to journalists, including Long COVID research, patient care, policy, mental health, relationships, financial insecurity, and related conditions (such as ME/CFS and dysautonomia).
The list is hosted on Notion, allowing users to search and filter for specific source needs.
This project is ongoing, and we will be adding more sources on an ongoing basis. If you would like to be added or have other feedback, please email LongCovidSourceList@gmail.com!
are you a journalist covering #LongCovid? then I have a resource for you! @fi_lowenstein and I worked on this database of Long COVID patients and experts who are interested in talking to reporters about their experiences: (1/5) pic.twitter.com/WL2hM0MHH1
To further explain the motivations for this project and provide some advice on how to use the source list, I did a Q&A with Fiona. Our conversation included the gaps in Long COVID news coverage, connecting the dots between Long COVID and other chronic conditions, recommendations for interviewing Long COVID patients, suggestions for covering this condition in year three of the pandemic, and much more. This interview has been lightly edited and condensed for clarity.
Betsy Ladyzhets: Why did you want to do this project? Why was it worth putting the time and effort into making this source list?
Fiona Lowenstein: I think there were two things. One was almost like a personal desire to have fewer media inquiries in my own inbox. I was receiving a lot of emails from journalists who were looking for very specific types of Long COVID sources. Part of that was because I started the support group Body Politic, and people were reaching out, asking me to post stuff in the group. Also, I have written a lot of stories on Long COVID and interviewed a lot of patients, and so people wanted help reaching more patients.
I knew that a lot of the support group leaders were very burnt out and kind-of exhausted, and that media requests are one of the biggest sources of, like, email stress. And I wanted to think about, is there a way to just ease this process for everyone? I was also noticing that journalists were getting frustrated with how long it was taking to get in touch with [Long COVID] sources, because so many of these groups are run by chronically ill people, and a lot of them are volunteers. They’re not always able to respond to an email in twelve hours.
Part of [the motivation] was also feeling like the news coverage of Long COVID, a lot of it focuses on the same people and the same stories. I’m someone that has been included in a lot of those articles, and at a certain point in time, I stopped doing press on my own experience, because I was like, this story is already out there. And I’m not sure it’s even reflective of the average experience of Long COVID, just because I had a lot of privilege that helped me get care and rest through my recovery.
So, I wanted to see more types of patients talked about, more patients who aren’t necessarily young and super healthy and fit before they got sick. Because that was very much the narrative for a long time. And that is sort-of an ableist narrative, to be emphasizing so strongly that so many of us were young and healthy, and we should care about our chronic illnesses because of that.
Also, I know that Long COVID coverage is going to have to go deeper and is already starting to go deeper in the coming year. Most news outlets have had at least one story explaining what Long COVID is. But we’re now at a point where we’re going to have to delve deeper into, like, what are the financial risks? What toll does [Long COVID] take on relationships? How are people navigating workplace accommodations? What about these specific symptom clusters that might morph over time? What about people who have additional diagnoses [of other chronic conditions] on top of having Long COVID?
And the last thing was, I want to connect the dots between Long COVID and other post-viral or infection-initiated chronic illnesses, like ME/CFS, dysautonomia, and other diagnoses that people with Long COVID have received. These are also diseases that have a lot in common, both in terms of symptoms and the way that they present but also in terms of social and political issues with regards to getting care, getting funded research, etc.
I think those of us who have had Long COVID and been involved or even been a fly on the wall in this advocacy work have seen how people with related chronic illnesses are not getting as much media attention. Even though they are really helping the Long COVID advocacy movement in a huge way, and helping patients on a day-to-day basis. So, that was why I wanted to include people with related conditions and experiences [on the source list], ideally, as well.
BL: Yeah, that makes sense. When we were starting to put together the Google forms [used to collect source’s information] and thinking about who we wanted to send them to, what were some of the things that you were considering?
FL: I was thinking a lot about the patient side of things. I wanted to connect with the leaders of the big [Long COVID] support groups, especially the private support groups, because the private support groups are a little more insular and more highly moderated. They’re the places where we can assume that a larger majority of the members actually have Long COVID. But the private support groups also have no way for journalists to kind-of see into those ecosystems. So, I wanted to connect with those support group leaders and have them share [the project within their groups]. I also did a lot of sharing on social media, because I’m followed by a lot of Long COVID patients and people living with the illness. And I messaged past sources, other people that I’ve talked to.
That being said, I was a little surprised—we got a lot of patient responses, but I think we could have gotten more. (Editor’s note: The list includes over 250 patients and 80 non-patient experts.) I know that there are more [Long COVID] people out there who want to tell their stories. But I think that, among the population of people with Long COVID who want to talk to the press, there are a lot of people who are just burnt out and tired of filling out forms. And there’s also a lot of distrust of the media. There was at least one support group that basically said, “We don’t want to participate in this because we don’t want our members’ information out there for reporters to access, we’ve had so many bad experiences with journalists.”
That was a tricky thing to navigate. To that end, something I’m hoping to do at some point is organize another media training with some of these support groups, to talk through, like, what are some of the issues that are coming up in the journalist-patient relationship? What are your rights as a source when you’re being interviewed? That sort of thing.
BL: Was there anything else that surprised you, when you were looking at the form responses? I know one thing that struck me when I was looking at them was, how many patients checked the box for experience with financial instability. I knew that was an issue, but it’s not something that a lot of articles have focused on so far.
FL: Yeah, that’s a really good point. I filled out the form, because I’ve had Long COVID, and I checked that off, too. I think that, in the Long COVID communities, [financial instability] is such a huge issue, and it’s being talked about constantly. Even for people like myself—I had a relative amount of financial privilege, I had savings that I could rely on after I got sick and couldn’t work. And I had my parents and my partner’s parents, they were able to contribute a little bit to our rent and our groceries and that sort of thing. But it’s still massively set back my finances. So, I think almost everyone has had that experience on some level.
I think one thing that surprised me was how many people had a diagnosis of another condition on top of Long COVID. It’s good, it’s heartening to see that people are getting diagnosed with things like dysautonomia, myalgic encephalomyelitis, and mast cell activation syndrome. I know that [these diagnoses are] happening a lot with the patient advocates that I know, but those are people who often have the highest levels of access to a clinician or a Long COVID clinic. But [the form responses] made me wonder if maybe also, there’s been so much information-sharing online and between patient groups that people are now able to diagnose themselves with this stuff—which is very common in chronic health communities because it can be so hard to get a diagnosis.
So, it was interesting seeing that so many people have checked off dysautonomia and these other things, because it made me feel like, okay, there actually is a pretty large group of people that are very aware of these other illnesses. I could not have told you what dysautonomia was, prior to getting COVID—even though I technically had a form of it, it turns out, before getting COVID. It seems indicative of the extent to which community information sharing has spread, and actually helps people figure out what they’re dealing with.
And those diagnoses are also really helpful for figuring out your symptom management techniques. Like, I learned rest and pacing from people in the ME community. So that’s a huge part of it, too: it’s having that community that you can look to, in addition to Long COVID. People who have been sicker for longer, and research has been going on for longer, and you can learn from [these other chronic illness patients].
BL: What recommendations do you have for people who are using the source list?
FL: There are a couple of kind-of broad stroke recommendations that we tried to account for in some of the questions we included on the list.
For example, one thing that I have said to colleagues and also publicly throughout the pandemic is: if you are a journalist reporting on Long COVID, you unfortunately have to have a pretty flexible schedule with your interviews, because this is an unpredictable illness. Someone could tell you, “Yeah, I’m available tomorrow at 2pm.” And then they could end up being really sick at that time. So, in the questions for patients, there’s a space where they can indicate how quickly they think, on average, they’ll respond to reporters. Hopefully that will help with this issue of, the urgency of tight deadlines, while trying to report on an issue in which people can’t always get back to you in a short timeframe.
Just be aware that these are people who, even though a lot of them may not be working, are dealing with a full schedule of managing their own health. It’s also important to know that there is distrust amongst this population, in terms of interacting with journalists and reporters. I’m not saying that exists with every single one COVID patient, and lots of people have had really good experiences talking to journalists.
But still, for that reason, it’s sometimes helpful, when you’re interviewing someone with Long COVID, to explain why you’re asking the questions you’re asking. For example, on the source list, we’ve included both people who have tested positive for COVID-19—via a PCR test or other diagnostic test—and people who have not tested positive. Some of those people who have not tested positive have a clinical diagnosis of COVID or Long COVID, while others do not. It’s important to understand the difference between those testing statuses and those diagnosis statuses. These statuses may have something to do with how intense the person’s acute symptoms were, but it has more to do with where the person was at the time that they sought the test, what time in the pandemic it was, and what sorts of privilege they might have or not have within the healthcare system in terms of accessing a test. Like, do they have a car and can they drive themselves to get a test?
That [testing status] question comes up a lot. And I think that journalists, when asking about just testing status, a helpful thing to do is explain why you’re asking. You could say, “I’m going to include people of all testing statuses in this article, because I understand that not everyone who has Long COVID was able to get a positive test for an acute COVID infection. But just for the purposes of accuracy, I need to ask, are you someone who had a positive COVID test or did you not have a COVID test? Because I need to include those details.”
Also, some people on the list have specified different methods of interview that they are comfortable with. But it never hurts to ask and double check [about interview method]. There are people who have really intense screen sensitivity and light sensitivity, and so emailing is going to be more difficult for them. Then, there are other people for whom a Zoom call or phone call is actually going to be more difficult, and they’d prefer texting, or emailing, or audio messages. I know a lot of times there is sort-of a reticence with journalists to use methods other than a Zoom call. But a lot of Long COVID patients have been communicating super effectively using nontraditional means for the entire pandemic. So, have a bit of trust in their ability to do that.
BL: Are there any other things that you want journalists to know about talking to Long COVID patients?
FL: There are a lot of things! One other thing to keep in mind is that everybody has a different level of expertise on Long COVID. A lot of times, I’ll seen articles—or I’ve even been in this position—there are people on our list who have identified themselves as experts on Long COVID, or patient advocates, outside of just their lived experience. Those are people who can, yeah, they might be able to speak to their lived experience, but they’re also going to be able to speak to, like, what they’re seeing in their support group or their experience, trying to advocate for policy change.
And I think it’s a shame when the stories about those advocates focus only on their own health issues. That happens a lot, just because I think journalists have a hard time finding people who are willing to talk about their own health issues. But be aware that there are a lot of people who have really a higher level of expertise than just, “This is what happened to me in my body,” people who have taken a lot of care and a lot of time to read the latest research on Long COVID and are in touch with doctors and scientists and policymakers. I think treating those people as experts on the subject is important.
On the flip side, not every Long COVID patient is going to be able to speak to those macro issues, and not every Long COVID patient has the same understanding of what’s happening in their body. There are also a ton of people—and these people probably are not on our list, unfortunately—people who have Long COVID and don’t know what it is, or don’t know that it’s called Long COVID. So, knowing that people’s understandings will vary from individual to individual is important as well, I think.
And don’t be afraid to interview people with related illnesses! Again, dysautonomia is an incredibly common diagnosis, it seems, for people with Long COVID. But I haven’t really seen many articles that are interviewing other people who have lived with dysautonomia for ten years, or scientists who are studying it, or that sort of thing.
BL: Yeah. How would you like to see the source get used?
FL: We had a media inquiry today [via LongCovidSourceList@gmail.com] that excited me because it was about a really hyper-specific local story. I would love to see more of that. Because I think Long COVID is an illness that does radicalize a lot of people, through getting sick and seeing like, “Oh, no one’s there to take care of me, and the government doesn’t care.” And a lot of people who are angry are organizing in their communities, or they’re even advocating on behalf of themselves.
I think, in the coming decade, we’re going to learn about more and more of these people who have been doing this [organizing] on the local level. Like, I know of many people who have organized really small support groups in their town or in their city. So, I’d love to see more hyperlocal coverage of how Long COVID is impacting individual communities. I’d also love to see more coverage of caregivers and people with loved ones who have Long COVID, and how folks are navigating those relationships. Because I think there are so many lessons we can learn about disability and chronic illness and relationships in general from those stories.
And obviously, I’d love to see more diverse sources. Near the beginning of the pandemic, there was a period of time where there were a lot of stories about health disparities. And we were talking a lot more about the impact of COVID on undocumented populations, or Black and Latinx and Indigenous populations in the US, or the people in rural areas or inner city areas.
We haven’t really seen a lot of that coverage for Long COVID. Part of that is because no one’s tracking it on a nationwide level, like we don’t have the case counts for Long COVID that we have for COVID infections. But there’s still stories to be done [on this issue]. You can go into a community and all you really need is one person, one source that has Long COVID in that community, to understand: How is that community grappling with this condition? Does that person know anybody else who knows what Long COVID is? Is that person educating everyone in their community on what Long COVID is? How did that person find care? Is there a hospital near them? Those are the stories I’d really like to see more.
Those stories, with an emphasis on those populations that were hit hardest at the beginning of the pandemic, and are still hard-hit. Like, I saw the other day that in Los Angeles, where I am, homeless populations have some of the highest rates of COVID infections. That would be a really interesting story and a really important story to look at, what does long-term care look like for those populations?
BL: You mentioned the fact that Long COVID cases are not tracked the way so many other COVID metrics are—which, as a data journalist, I definitely consider to be one of the biggest data gaps of the pandemic. Are there any other stories that you would want to see in that vein, or any other coverage areas you would like to see around Long COVID?
FL: Yeah. I think this idea would take kind of the right type of journalist, probably someone with a deep knowledge of chronic illness communities; it would be interesting to delve into what I was talking about before, in terms of these additional diagnoses that [Long COVID patients] have received and/or self-diagnosed themselves with.
I’m also very curious about how people get diagnosed with Long COVID, because it seems to be happening in a different way with everyone. There are the people like me, where I don’t have a clinical diagnosis of Long COVID—I don’t think I do, maybe my doctor put something on my chart—but like, I just have a COVID PCR test, and then I have records of going for care for these other related problems. And then I have an additional diagnosis of this kind-of dysautonomia-related thing.
We do now have an ICD code for Long COVID. But I’m not exactly sure that it’s being used in all situations. And like, if someone gets diagnosed with ME/CFS, are they getting diagnosed with both those ICD codes, or does one diagnosis overrule the other one? So, I think there’s a lot of interesting stuff there. You could also delve into how common it is to self-diagnose and what that looks like when you end up going to the doctor at some point later on. This [story] can be done in a variety of ways. People could also write guides on, “How do you get an accurate diagnosis?” And, “What does a diagnosis mean in terms of your insurance coverage, or your eligibility for disability benefits?”
I think [disability benefits are] another thing that is going to be huge. I get a lot of emails from people with Long COVID who have been denied long-term disability. One person I was speaking to was from a Republican state, and she was saying, like, “I’m from a state where the government shut down all the COVID-related social programs earlier than in other states. Why would I believe the caseworker in my state is going to take my Long COVID disability case seriously?”
I think that’s an interesting thing, too. COVID was highly politicized. Long COVID isn’t highly political in the exact same way simply because it’s not something that everybody knows about and is talking about. But there’s that question: if we know that COVID infections and COVID care can sometimes differ state to state based on the political leadership and what sort of funding has been put into healthcare systems, how does that look for Long COVID? What does that mean for people applying for disability benefits? Are people in blue states having an easier time getting approved for long-term disability? Does it not matter? That sort of thing.
BL: Yeah, that’s a good point. Those were all of my questions—is there anything else that you think is important for people to know about this project or about using the list?
FL: Well, I’m curious—I know that you were writing about Long COVID and looking for sources, but I’m kind of curious why you wanted to participate in this project and why it felt important to you?
BL: I think that, as I said a bit ago, I feel like this is a really important data gap. There’s this feedback loop where, we don’t have really solid numbers about Long COVID, and so people don’t know about it, and so that contributes to the lack of numbers, and then it sort-of spirals in that way. And this [project] seemed like a way to combat that situation, at least a little bit. And also, I like making resources for other journalists, it’s part of the reason why [the COVID-19 Data Dispatch] exists, basically. This project felt like an extension of that goal.
FL: Yeah, that makes a lot of sense. I think there is an enormous desire for those of us who followed Long COVID from the beginning to see it get its due in the media. And I think, now that we’re entering year three, and we’re hearing that Omicron is potentially more mild—it just feels like, when is it going to be the time that we fully turn our attention to this? In terms of gathering the data and, and writing about it.
Did you know that diarrhea, nausea, and vomiting are all common COVID-19 symptoms? I knew they were included on the CDC’s list of symptoms, but I didn’t realize how often these symptoms occur—or how nasty they can get—until I reported this story for Gothamist, a news site run by New York City’s public radio station.
The story focuses on a recent paper from Northwell Health, a hospital system in NYC. Northwell clinicians investigated rates of gastrointestinal symptoms (or, symptoms in the digestive system) among their COVID-19 patients. Out of 17,500 patients, over 3,200 had gastrointestinal symptoms—almost 20% of the group. These symptoms included diarrhea caused by intestinal infection, bleeding in the GI tract, and malnutrition.
For several hundred patients, the researchers were able to track their GI symptoms for six months after they left the hospital. This led to another concerning discovery: at the six-month mark, more than half of the patients who’d suffered malnutrition in the hospital were still experiencing this symptom. Same thing for the patients who’d suffered chronic weight loss.
In reporting this story, I also talked to Lauren Nichols—a Long COVID patient and advocate with Body Politic. She’s been facing COVID-related GI symptoms for eighteen months, ranging from intensive diarrhea in spring 2020 to an inability to gain weight and, now, potential autoimmune issues. Many other Long COVID patients have experienced these symptoms, according to a large survey of patients.
As I wrote a couple of weeks ago, Long COVID provides a great argument in favor of getting vaccinated. This disease isn’t just a run-of-the-mill cough, or flu—it can truly mess up people’s lives in the long term.
Last week, one of the reader questions I answered addressed Long COVID, the condition in which people have COVID-related symptoms for weeks or months after their initial coronavirus infection. One reader had asked about monitoring for Long COVID patients (also called long-haulers); I later received another question about the risks of Long COVID after vaccination.
These questions made me realize that I’ve devoted very little space to Long COVID in the COVID-19 Data Dispatch—even though I consider it one of the biggest COVID-19 data gaps in the U.S. Though it’s now been well over a year since the first Long COVID patients were infected, there is still so much we don’t know about the condition.
For example, we don’t know a very rudimentary number: how many people in the U.S. are struggling with Long COVID. We also don’t have a clear, detailed picture of Long COVID symptoms, or how these symptoms arise from a coronavirus infection, or how they impact the daily lives of Long COVID patients.
Why does this massive data gap exist? Long COVID studies are challenged by the lack of standardized patient data in the U.S., making it difficult to identify symptom patterns across large groups of people. We face a similar problem in tracking breakthrough cases, demographic information, and other COVID-19 trends.
Plus, thanks to limited COVID-19 testing in the U.S. throughout the pandemic (and restrictions on who could get tested, back in spring 2020), a lot of Long COVID patients never had a positive test result—making it difficult for them to get a formal diagnosis. And many of the Long COVID studies that have been conducted focus on patients who had a positive COVID-19 test or were hospitalized for the disease, thus narrowing much of our clinical data to a small subset of the actual Long COVID population.
As I noted last week, the National Institutes of Health (NIH) has set up a major research initiative to study Long COVID. This initiative, called RECOVER, is poised to become our best source for Long COVID data in the future. But it’s in early stages right now, beginning to distribute funding to different research groups and recruit Long COVID patients for study. It could be years before we get results.
All of that said, there are still a few things we know about Long COVID based on research thus far. Here’s a roundup of twelve key statistics.
Between 10% and 30% of coronavirus infections lead to Long COVID. This statistic comes from the NIH’s RECOVER Initiative website; it summarizes findings from past studies. Consider: 30% of the 44.2 million Americans with a documented COVID-19 case amounts to 13.3 million people with Long COVID. Even 10% of those 44.2 million would amount to 4.4 million people.
Some studies suggest that as many as one-third of COVID-19 patients may have persistent or returning symptoms. A recent study of electronic health records in the U.S. and U.K., run by scientists at the University of Oxford, suggests that the true share of COVID-19 patients who contract Long COVID is on the higher end of that 10%-30% estimate that the NIH provides. This new study found that 36% of COVID-19 patients (among a sample size of 270,000) had symptoms three and six months after their diagnosis.
Long COVID may manifest with over 100 different potential symptoms. There is a Long COVID paper that I personally come back to, whenever I want to see a clear picture of the many ways that this condition can impact patients. The paper, published in The Lancet in July, reports results from a survey of over 3,000 Long COVID patients conducted by the Patient-Led Research Collaborative. According to this survey, Long COVID patients may suffer from about 100 possible symptoms, including systemic, reproductive, cardiovascular, musculoskeletal, immunologic/autoimmune, head/eyes/ears/nose/throat, pulmonary, gastrointestinal, and dermatologic symptoms.
Long COVID symptoms may change over time. The Patient-Led Research Collaborative survey found that some patients may have changing symptoms, or relapses brought on by different activities. One very common Long COVID symptom is Post-Exertional Malaise, a condition in which patients experience a relapse after physical or mental exertion, even if that exertion is relatively minor.
Some Long COVID patients have been sick for over 18 months. The Patient-Led Research Collaborative survey covers symptoms over a course of seven months, but some Long COVID patients have been suffering for far longer. Some patients who initially contracted the coronavirus in spring 2020, during the first wave in the U.S., have now been sick for 18 months or more.
Many Long COVID patients are unable to work. According to the Patient-Led Research Collaborative survey, almost half of the Long COVID patients who responded (45%) “required a reduced work schedule, compared to pre-illness.” Another 22% were not working at the time of the survey because of Long COVID. Other studies have backed up the findings from this survey. At this point in the pandemic, some Long COVID patients are struggling to receive accommodations from their employers, even though the condition is recognized as a disability at the federal level.
Long COVID can occur at all age ranges, but is documented most in younger and middle-age adults. Among respondents to the Patient-Led Research Collaborative survey, about 24% were in their thirties, 31% in their forties, and 25% in their fifties—though patients ranged in ages from 18 to over 80. This survey and others have also found that Long COVID seems to be more common for women; this pattern aligns with other post-infectious conditions, like chronic fatigue syndrome and chronic Lyme disease.
Long COVID may lead to long-term neurological issues. This past summer at the Alzheimer’s Association International Conference, a few researchers presented findings on Long COVID and Alzheimer’s. Brain scans of COVID-19 patients, along with observations of patients’ prolonged symptoms, suggest that adults who suffer from Long COVID may have an increased risk of Alzheimer’s later in life. Severe COVID-19 patients in their sixties and seventies are already starting to see symptoms matching early-onset Alzheimer’s, one researcher told NPR.
Autoimmune response may be one cause for Long COVID symptoms. While scientists are still working to determine exactly how a coronavirus infection may lead to numerous symptoms, research thus far suggests that overreaction of the immune system could be a major player. Some clinicians who work with Long COVID patients have developed treatments based on dysautonomia, medical conditions caused by immune and autonomic nervous system issues.
About 5,200 children in the U.S. have been diagnosed with MIS-C, and 46 have died. MIS-C stands for Multisystem Inflammatory Syndrome in Children. The condition follows a COVID-19 infection in rare cases, leading to inflammation of different parts of the body. While this condition is not directly comparable to Long COVID, scientists think it may have similar causes. The condition has disproportionately impacted children of color in the U.S.: out of 5,200 cases, 61% are Black or Hispanic/Latino.
The risk of Long COVID is dramatically lower after a breakthrough infection, even if you contract the coronavirus. A recent study published in The Lancet found that vaccinated patients who later had a breakthrough COVID-19 case were about half as likely to report symptoms after four weeks, compared to unvaccinated patients who had a non-breakthrough COVID-19 case. Plus, vaccinated people are already far less likely to contract the coronavirus in the first place, because vaccination reduces risk of infection. Commenting on the study, NIH Director Dr. Francis Collins called it “encouraging news,” though he cautioned that more research is needed on this topic.
Vaccination may help alleviate COVID-19 symptoms for Long COVID patients. In addition to reducing one’s risk of developing Long COVID, vaccination can alleviate symptoms for Long COVID patients. A recent preprint, posted online at the end of September, found that Long COVID patients who got vaccinated were about twice as likely to completely recover, compared to unvaccinated patients. “Overall, this study adds to growing evidence that vaccines can improve symptoms and lessen the disease impact in Long COVID,” wrote Long COVID researcher Dr. Akiko Iwasaki, sharing the study on Twitter.
To me, these Long COVID statistics—along with everything we still don’t know about the condition—provide a strong argument for vaccination. Long COVID can impact people who were young and healthy before they were infected, completely messing up their lives for months or even years. It surprises me that public health and political leaders don’t discuss this condition more when they tell people to get vaccinated.
As for continued research: the NIH’s RECOVER Initiative has received over $1 billion in funding from Congress, and it’s just getting started on setting up studies. If you’re interested in learning more about the research—or signing up to participate in a RECOVER study—you can sign up for email alerts on the NIH website.
The Delta surge is waning. Will this be the last big surge in the U.S., or will we see more? This question and more, answered below; chart from the CDC.
Last week, I asked readers to fill out a survey designed to help me reflect on the COVID-19 Data Dispatch’s future. Though the Delta surge—and the pandemic as a whole—is far from over, I’m considering how this publication may evolve in a “post-COVID” era. Specifically, I’m thinking about how to continue serving readers and other journalists as we prepare for future public health crises.
Thank you to everyone who’s filled out the survey so far! I really appreciate all of your feedback. If you haven’t filled it out yet, you can do so here.
Besides some broader questions about the CDD’s format and topics we may explore in the future, the survey asked readers to submit questions that they have about COVID-19 in the U.S. right now. In the absence of other major headlines this week, I’m devoting this week’s issue to answering a few of those questions.
Should I get a booster shot? If so, should it be a different one from the first vaccine I got? When will my kids (5-11) likely be eligible?
I am not a doctor, and I’m definitely not qualified to give medical advice. So, the main thing I will say here is: identify a doctor that you trust, and talk to them about booster shots. I understand that a lot of Americans don’t have a primary care provider or other ways to easily access medical advice, though, so I will offer some more thoughts here.
As I wrote last week, we do not have a lot of data on who’s most vulnerable to breakthrough COVID-19 cases. We do know that seniors are more vulnerable—this is one point where most experts agree. We know that adults with the same health conditions that make them more likely to have a severe COVID-19 case without a vaccine (autoimmune conditions, diabetes, kidney disease, etc.) are also more vulnerable to breakthrough cases, though we don’t have as much data here. And we know that vaccinated adults working in higher-risk locations like hospitals, nursing homes, and prisons are more likely to encounter the coronavirus, even if they may not necessarily be more likely to have a severe breakthrough case.
The FDA and CDC’s booster shot guidance is intentionally broad, allowing many Americans to receive a booster even if it is not necessarily needed. So, consider: what benefits would a booster shot bring you? Are you a senior or someone with a health condition that makes you more likely to have a severe COVID-19 case? Do you want to protect the people you work or live with from potentially encountering the coronavirus?
If you answered “yes” to one of those questions, a booster shot may make sense for you. And, while you may be angry about global vaccine inequity, one individual refusal of a booster shot would not have a significant impact on the situation. Rather, many vaccine doses in the U.S. may go to waste if not used for boosters. But again: talk to your doctor, if you’re able to, about this decision.
Currently, Pfizer booster shots are available for people who previously got vaccinated with Pfizer. The FDA’s vaccine advisory committee is meeting soon to discuss Moderna and Johnson & Johnson boosters: they’ll discuss Moderna on October 14 and J&J on October 15. Vaccine approval in the U.S. depends upon data submission from vaccine manufacturers—and vaccine manufacturers have not been studying mix-and-match booster regimens—so coming approvals will likely require Americans to get a booster of the same vaccine that they received initially. We will likely see more discussion of mix-and-match vaccinations in the future, though, as more outside studies are completed.
As for when your kids will likely be eligible: FDA’s advisory committee is meeting to discuss Pfizer shots for kids ages 5 through 11 on October 26. If that meeting—and a subsequent CDC meeting—goes well, kids may be able to get vaccinated within a week of that meeting. (Potentially even on Halloween!)
Why don’t people get vaccinated and how can we make them?
I got a couple of questions along these lines, asking about vaccination motivations. To answer, I’m turning to KFF’s COVID-19 Vaccine Monitor, a source of survey data on vaccination that I (and many other journalists) have relied on since early 2021.
KFF released the latest round of data from its vaccine monitor this week. Here are a few key takeaways:
The racial gap in vaccinations appears to be closing. KFF found that 71% of white adults have been vaccinated, compared to 70% of Black adults and 73% of Hispanic adults. Data from the CDC and Bloomberg (compiling data from states) similarly show this gap closing, though some parts of the country are more equitably vaccinated than others.
A massive partisan gap in vaccinations remains. According to KFF, 90% of Democrats are vaccinated compared to just 58% of Republicans. This demonstrates the pervasiveness of anti-vaccine misinformation and political rhetoric among conservatives.
Rural and younger uninsured Americans also have low vaccination rates (62% and 54%, respectively). Both rural and uninsured people have been neglected by the U.S. healthcare system and face access barriers; for more on this topic, I recommend this Undark article by Timothy Delizza.
Delta was a big vaccination motivator. KFF specifically asked people who had gotten their shots after June 1 why they chose to get vaccinated. The most popular reasons were, in order: the increase in cases due to Delta (39%), concern about reports of local hospitals and ICUs filling with COVID-19 patients (38%), and knowing someone who got seriously ill or died from COVID-19 (36%).
Mandates and social pressures were also vaccination motivators. 35% of KFF’s recently vaccinated survey respondents said that a big reason for their choice was a desire to participate in activities that require vaccination, like going to the gym, a big event, or traveling. 19% cited an employer requirement and 19% cited social pressure from family and friends.
The second part of this question, “how can we make them?”, reflects a dangerous attitude that has permeated vaccine conversations in recent months. Yes, it’s understandable to be frustrated with the Americans who have refused vaccination. But we can’t “make” the unvaccinated do anything, and such a forceful attitude may put off people who still have questions about the vaccines or who have faced discrimination in the healthcare system. To increase vaccinations among people who are still hesitant, it’s important to remain open-minded, not condescending. For more: read Ed Yong’s interview with Dr. Rhea Boyd.
That said, we’re now getting a sense of which strategies can increase vaccination: employer mandates, vaccination requirements for public life, and personal experience with the coronavirus. As the Delta surge wanes, it will take more vaccination requirements and careful, open-minded conversations to continue motivating people to get their shots.
What are some things I might say to convince people of Delta’s severity and the need to not relax on masking, distancing, etc?
To answer this, I’ll refer you to the article I wrote about Delta on August 1, as the findings that I discuss there have been backed up by further research.
Personally, there are two statistics that I use to express Delta’s dangers to people:
Delta causes a viral load 1,000 times higher than the original coronavirus strain. This number comes from a study in Guangzhou, China, posted as a preprint in late July. While viral load does not correspond precisely to infectiousness (there are other viral and immune system factors at play), I find that this “1,000 times higher” statistic is a good way to convey just how contagious Delta is, compared to past variants.
An interaction of one second is enough time for Delta to spread from one person to another. Remember the 15-minute rule? In spring 2020, being indoors with someone, unmasked, for 15 minutes or more was considered “close contact.” Delta’s increased transmissibility means that an interaction of one second is now enough to be a “close contact.” The risk is lower if you’re vaccinated, but still—Delta is capable of spreading very quickly in enclosed spaces.
You may also find it helpful to discuss rising numbers of breakthrough cases in the U.S. While vaccinated people continue to be incredibly well protected against severe disease and death caused by Delta, the vaccines are not as protective against coronavirus infection and transmission. (They are protective to some degree, though! Notably, coronavirus infections in vaccinated people tend to be significantly shorter than they are in the unvaccinated, since immune systems can quickly respond to the threat.)
It’s true that rising breakthrough case numbers are, in a way, expected—as more people get vaccinated, breakthrough cases will naturally become more common, because the virus has fewer and fewer unvaccinated people to infect. But considering the risks of spreading the coronavirus to others, plus the risks of Long COVID from a breakthrough case… I personally don’t want a breakthrough case, and so I continue masking up and following other safety protocols.
What monitoring do we have in place for COVID “longhaulers” and their symptoms/health implications?
This is a great question, and one I wish I could answer in more detail. Unlike COVID-19 cases, hospitalizations, and other major metrics, we do not have a comprehensive national monitoring system to tell us how many people are facing long-term symptoms from a coronavirus infection, much less how they’re faring. I consider this one of the country’s biggest COVID-19 data gaps, leaving us relatively unprepared to help the thousands, if not millions, of people left newly disabled by the pandemic.
In February, the National Institutes of Health (NIH) announced a major research initiative to study Long COVID. Congress has provided over $1 billion in funding for the research. This initiative will likely be our best source for Long COVID information in the future, but it’s still in early stages right now. Just two weeks ago, the NIH awarded a large share of its funding to New York University’s Langone Medical Center; NYU is now setting up long-term studies and distributing funding to other research institutions.
As I wrote in the September 19 issue, the NIH’s RECOVER website currently reports that between 10% and 30% of people infected with the coronavirus will go on to develop Long COVID; hopefully research at NYU and elsewhere will lead to some more precise numbers.
While we wait for the NIH research to progress, I personally find the Patient-Led Research Collaborative (PLRC) to be a great source for Long COVID research and data. The PLRC consists of Long COVID patients who research their own condition; it was founded out of Body Politic’s Long COVID support group. This group produced one of the most comprehensive papers on Long COVID to date, based on an international survey including thousands of patients, and has more research currently ongoing.
If you have the means to support Long COVID patients—many of whom are unable to work and facing homelessness—please see the responses to this tweet by PLRC researcher Hannah Davis:
As others have mentioned, people with Long COVID are unable to work & are becoming homeless.
If you have #LongCovid & are struggling, drop your venmo/cashapp/paypal/etc in this thread & I'll retweet.
If you have $ to spare, please support patients in this thread.
Why is the CDC not doing comprehensive high volumes of sequencing on all breakthrough cases at the very least?
I wish I knew! As I wrote last week (and in several other past issues), the lack of comprehensive breakthrough case data in the U.S. has contributed to a lack of clarity on booster shots, as well as a lack of preparedness for the next variants that may become threats after Delta. The CDC’s inability to track and sequence all breakthrough cases—not just the severe ones—is dangerous.
That said, it is very difficult to track breakthrough cases in a country like the U.S. Consider: the U.S. does not have a comprehensive, national electronic records system for patients admitted to hospitals, much less those who receive COVID-19 tests and other care at outpatient clinics. This lack of comprehensive records makes it difficult to match people who’ve been vaccinated with those who have received a positive COVID-19 test. Thousands, if not millions of Americans are now relying on rapid tests for their personal COVID-19 information—and most rapid tests don’t get entered into the public health records system at all.
Plus, local public health departments are chronically underfunded, understaffed, and burned out after almost two years of working in a pandemic; they have little bandwidth to track breakthrough cases. Many Americans refuse to participate in contact tracing, which hinders the public health system’s ability to collect key information about their cases. And there are other logistical challenges around genomic sequencing; despite new investments in this area, many parts of the country don’t have sequencing capacity, or the information infrastructure needed to send sequencing results to the CDC.
So, if the CDC were tracking non-severe breakthrough cases, they’d likely miss a lot of the cases. But that doesn’t mean they shouldn’t be trying, in my opinion.
How safe is it to visit my family for the holidays?
This is another place where I don’t feel qualified to give advice, but I can offer some thoughts. If I were you, I would think about the different ways in which holiday travel might pose risk to me and to the people at the other end of my trip. I would consider:
Quarantining beforehand. Do your occupation and living circumstances allow you to quarantine for a week, or at least limit your exposure to settings where you might be at risk of catching the coronavirus, before you travel? Can you get a test before traveling?
Types of travel. Can you make the trip in a car or on public transportation, or do you need to fly? If you need to fly, can you select an airline that has stricter COVID-19 safety requirements? (United recently reported that over 96% of its employees are now vaccinated, for example.) Can you wear a high-quality mask for the flight?
Quarantining and/or testing upon arrival. Can you spend a couple of days in quarantine once you get to your destination? Would you have access to testing (with results in under 24 hours) upon your arrival, or would you be able to bring rapid tests with you?
Who you’re spending time with. Among the family you’d be visiting, is everyone vaccinated (besides young children)? If anyone is not vaccinated, could your potential travel be a motivator to help convince them to get vaccinated? Does the group include seniors or people with health conditions that put them at high risk for COVID-19, and if so, can they get booster shots?
Activities that you do at your destination. Would you be able to have large gatherings outside, or in a well-ventilated space? What else can you do to reduce the risk of these activities?
Like other activities, travel can be relatively safe or fairly dangerous depending on the precautions that you’re able to take, and depending on COVID-19 case rates where you live and at your destination. And, like other activities, your choice to travel or not travel depends a lot on your personal risk tolerance. Nothing is zero-risk right now; each person has a threshold that determines what level of COVID-19 risk they are and are not comfortable taking. Through some self-reflection, you can determine if travel is above or below your risk threshold.
Why are policies so different now than they were at this time last year?
Public health tends to go through cycles of “panic” and “neglect.” Ed Yong’s latest feature goes into the history of this phenomenon:
Almost 20 years ago, the historians of medicine Elizabeth Fee and Theodore Brown lamented that the U.S. had “failed to sustain progress in any coherent manner” in its capacity to handle infectious diseases. With every new pathogen—cholera in the 1830s, HIV in the 1980s—Americans rediscover the weaknesses in the country’s health system, briefly attempt to address the problem, and then “let our interest lapse when the immediate crisis seems to be over,” Fee and Brown wrote. The result is a Sisyphean cycle of panic and neglect that is now spinning in its third century. Progress is always undone; promise, always unfulfilled. Fee died in 2018, two years before SARS-CoV-2 arose. But in documenting America’s past, she foresaw its pandemic present—and its likely future.
During the COVID-19 pandemic, the U.S. took a nosedive into the “neglect” cycle before we were even finished with the “panic” cycle. Congress has already slashed its funding for future pandemic preparedness, while state and local governments across the country restrict the powers of public health officials. As a result, we’re seeing an “everyone for themselves” attitude at a time when we should be seeing new mask mandates, restrictions on public activities, and other safety measures.
Basically, America decided the pandemic was over and acted accordingly—and if you get COVID-19 now, it’s “your fault for not being vaccinated.” This phenomenon has been especially pronounced in rural areas, which struggled a lot (but saw few cases) during spring 2020 lockdowns and are extremely hesitant to do anything approaching a “lockdown” again.
We need an attitude shift—and more investment in public health—to actually end this pandemic and prepare for the next health crisis. Yong’s feature goes into this in more detail; definitely give that a read if you haven’t yet.
When is this going to be over?!?
Unfortunately, this is very hard to predict—even for the expert epidemiologists and computational biologists who make the models. Check out the CDC’s compilation of COVID-19 case models: most of them agree that cases will keep going down in the coming weeks, but they’re kind of all over the place.
Last week, I summarized two stories—from The Atlantic and STAT News—that discuss the coming winter, and kind of get at this question. It’s possible that cases keep declining from their present numbers, and that the Delta surge we just faced is the last major surge in the U.S. It’s also possible that a new variant arises out of Delta and sends us into yet another new surge. If that happens, more people will be protected by vaccination and prior infection, but healthcare systems could come under strain once again.
As long as the coronavirus continues spreading somewhere in the world, it will continue to pose risk to everyone—able to cause new outbreaks and mutate into new variants. This will continue until the vast majority of the world is vaccinated. And then, at some point, the coronavirus will probably become endemic, meaning it persists in the population at some kind of “acceptable” threshold. Just like the flu.
Dr. Ellie Murray, epidemiologist at Boston University’s School of Public Health, explained how a pandemic becomes endemic in a recent Twitter thread:
Everyone keeps talking about covid becoming endemic, but as I listen to the conversation, it’s becoming more & more clear to me that very few of you know what “endemic” means.
Dr. Murray points out that, even when a disease reaches endemic status, tons of scientists and public health workers will still continue to monitor it. This is the case for the flu—think about all of the effort that goes into a given year’s flu shot!—and it will likely be the case for COVID-19.
In short, public health leaders need to figure out what level of COVID-19 transmission is “acceptable” and how we will continue to monitor it. This needs to happen at both U.S. and global levels. And, thanks to our vaccine-rich status, it’ll likely happen in the U.S. long before it happens globally.
So, yes, our only viable choice left is covid becoming endemic. It didn’t have to be this way, but our leaders MADE a choice.
And now they need to make another choice: They need to choose an “acceptable” level of COVID death & disease.
COVID-19 Data Dispatch 