The Promise and Perils of Wastewater Data w/ Betsy Ladyzhets (08/29/24)

Death Panel podcast host Beatrice Adler-Bolton, speaks with Betsy Ladyzhets of The Sick Times about what wastewater surveillance does—and doesn’t—tell us about the level of covid spread and how the rise of covid wastewater monitoring fits inside the larger picture of the privatization of both covid risk and covid data.

Find Betsy’s report, “Wastewater surveillance for Covid-19 keeps evolving. Here’s what you need to know” here: https://thesicktimes.org/2024/07/23/wastewater-surveillance-for-covid-19-keeps-evolving-heres-what-you-need-to-know/

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Transcript by Kendra Kline. (Kendra is currently accepting freelance transcript work — email her if you need transcripts or visit her website)

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Death Panel 0:00
[intro music]

Beatrice Adler-Bolton 0:32
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I'm Beatrice Adler-Bolton, and today I'm joined by our guest, Betsy Ladyzhets.

Betsy is an independent data journalist and writer with an extensive history of reporting on pandemic data. She is the co-founder and managing editor of The Sick Times, which is focused on the Long COVID crisis. Before Sick Times, Betsy ran the weekly COVID-19 Data Dispatch newsletter, which ran from July 2020 through November 2023, and provided resources and analysis and original reporting on COVID-19 data.

I asked Betsy on today to talk about her recent reporting for Sick Times on wastewater surveillance data in the United States, which she has been closely covering for years now. Betsy, welcome to the Death Panel. It's so great to finally get the chance to talk, and I so appreciate you coming on the show today.

Betsy Ladyzhets 1:48
Yeah. Thank you so much for having me. I mean, like I was saying when we were talking before the recording started, I have been an avid listener of Death Panel. Literally, I'm wearing my Medicare for All now solidarity forever hat, as we're recording.

Beatrice Adler-Bolton 2:01
Hell yeah.

Betsy Ladyzhets 2:02
So it's a huge honor for me, and I just have really appreciated your consistent attention and coverage to the pandemic.

Beatrice Adler-Bolton 2:10
Well, and likewise. And thank you so much for taking the time to talk to me today, Betsy, about your reporting. We're gonna be touching on this reporting that you published in late July, in a piece that you wrote for The Sick Times called "Wastewater surveillance for COVID-19 keeps evolving. Here's what you need to know." That piece breaks down recent changes to the scope and function of the National Wastewater Surveillance System in the US, known as the NWSS.

But first, before we just dive into some of the details of the NWSS, recent updates on the COVID data landscape and some of your reporting, I just want to set up context here to make sure that folks who are less well versed on COVID data have some common ground to start with. So the quick backstory on wastewater data is that wastewater monitoring involves passively analyzing sewage to detect and quantify the presence of pathogens, including viruses like SARS-CoV-2, which causes COVID. It offers a way to gauge a very rough idea of possible community level infection rates, but it doesn't measure individual infections.

The system to track COVID in wastewater was initially set up here around November of 2020, and used to just be one of many types of information about COVID cases and spread that were available to the public. So wastewater data was initially meant to be read in tandem with other data, like nationally reported testing data, hospitalizations and deaths. Early on in the pandemic, the picture of how COVID moved around the United States was informed by all of these overlapping types of data, each of which offered different ways of looking at how COVID moved through and impacted the population. But unfortunately, things are very different now.

While testing data is still somewhat collected, it is no longer the central metric that we use to measure COVID at all. With the end of the federal public health emergency in May 2023, we saw changes to mandatory hospitalization reporting and intake testing, which as testing data waned, had taken over as our new central focus. And then after that, the primary metrics became deaths and wastewater. However, as we discussed in an episode of Death Panel from December, called Economic Endemicity Blue, last year the CDC also changed how it was publicly reporting deaths on its dashboard, changing things from raw numbers to a week to week percentage change, making formerly simple metrics into something very abstract and confusing.

And now wastewater data is one of the only remaining things that we are left with. As we discussed on that episode from December, and we'll discuss at much more length today, there are several limitations that are pretty hard that we're up against here. And the bottom line is that while wastewater data can provide early warnings about outbreaks, track the spread of diseases, and particularly help in last mile resource allocation among public health departments or critical care infrastructure, there are several limitations to what wastewater data can tell us. And the troubling thing right now is that this is one of the only and the main pictures of the pandemic that we have been left with.

So with all that said, we're going to get into what the National Wastewater Surveillance System is, what its shortcomings are, how it's recently changed, as well as how it fits into broader logics of privatization and the sociological production of a premature "end" to the COVID pandemic, of course, even as COVID continues to spread at levels like previous years, when much more robust and layered data infrastructure and layered protections were in place. So to start us off, before we dive deeper on wastewater data itself, for listeners who aren't familiar, Betsy, can you just briefly introduce your work and also introduce your new reporting project on Long COVID called The Sick Times.

Betsy Ladyzhets 5:41
Absolutely. Yeah. Thank you for setting up the context as well. So I have been -- I've called it sort of the COVID data beat for a few years now. Early in the pandemic, you know, spring of 2020, I was living in New York City, working at a data journalism startup, and just really dove head first into COVID coverage. I also started volunteering for the COVID Tracking Project, which was -- it now feels very short-lived because it only lasted from early 2020 to early 2021, but a sort of volunteer focused data project that was trying to fill in gaps left by the CDC. So I was a volunteer there, and learned a lot about COVID data very quickly.

And in order to really track both my own evolving knowledge of the situation and follow the changes as they were at that point pretty quickly happening, I started the COVID Data Dispatch, which was a newsletter that ran from summer of 2020 through fall of 2023, just keeping track of all the changes to COVID data. I also ended up leaving my staff job and freelancing a lot, so writing about different areas of COVID data, from the testing infrastructure, to vaccinations, breakthrough cases, and then eventually wastewater, as it became more of a main source, was really my main area of reporting for a long time.

And then last fall, I and Miles Griffiths, my colleague at The Sick Times, started that new site. We really wanted to fill what we saw as a gap in Long COVID coverage and be almost like a community news source for the Long COVID community, for people with Long COVID, advocates, caregivers, family members, researchers, healthcare workers, like everybody in this ecosystem. Our goal is to be providing dedicated coverage of the research as well as policy updates.

Like last week, for example, I wrote an article about the moonshot bill that Bernie Sanders just introduced that aims to provide a new significant influx of Long COVID research funding. And we're also, in addition to news coverage, we're publishing essays by people with Long COVID and related diseases. We're going to have our own podcast starting soon, so we're really trying to kind of deliver news and analysis and commentary in different formats.

Beatrice Adler-Bolton 8:00
So can you describe maybe the kind of topline points that you think are really most important to know in terms of the coverage that you've been doing on wastewater surveillance. For someone who's new to this, how would you describe these systems and how they work in brief, and also to your point, as you set up there in talking about your background, this is something that -- I talked about it as a National Wastewater Surveillance System, but this has always been a very in progress --

Betsy Ladyzhets 8:29
It's very patchy, yeah.

Beatrice Adler-Bolton 8:30
Yeah, patchwork, public-private collaboration. There is a kind of homogeny that's applied to wastewater data, which we're going to get into the problems of forcing standardization among these things a little bit later. But just kind of set up maybe just the fractured landscape, and exactly what we're materially talking about in terms of how comprehensive or not, how public or not, some of these different systems are that layer on top of each other to create what falls under the umbrella of a National Wastewater Surveillance System in the US.

Betsy Ladyzhets 9:05
So one thing that I think is important to start off with as context is that wastewater surveillance is not a new technology that was invented in 2020. Scientists have been doing this for a long time. The most primary historical example is polio, which scientists and health officials have been using wastewater to track polio and really try to keep an eye on whether any new cases or outbreaks emerge, for several decades now.

Also prior to 2020, there was a lot of research going on around tracking chemicals through wastewater. One researcher who I've talked to a few times at Columbia University, Kartik Chandran, was doing this with microbial ecology, looking at microbes and water systems. So that is to say that this area of research had been going on for decades, but in early 2020 with the initial outbreaks of COVID, some researchers kind of discovered, oh, we can track the coronavirus through wastewater.

And this was kind of a breakthrough for a couple of reasons. One, of course, being that this was a public health crisis. At that time in 2020, there was more universal agreement [laughing], I think, in the science and health fields, that this was a public health crisis. And so a lot of researchers whose fields were, in some cases, maybe kind of tangential, but everyone from like chemical engineers to virologists kind of dropped their prior projects and started setting up these wastewater systems for tracking COVID.

The other thing that was a bit of a breakthrough from this moment in 2020 was that COVID is considered to be a respiratory virus. I would argue that it's not, but that's a topic for another episode. COVID is considered to be a respiratory virus. It spreads through the air. And so researchers were kind of surprised that you could track it through poop, essentially.

And so I think that has really led to an outpouring of, what else can we use this surveillance method for, that has now led to systems tracking for flu in wastewater and a wide variety of other diseases and also chemical indicators of health. So as I said, we had this moment in 2020, 2021, when all these different research groups, most -- many of them academic, some public health, some companies were just like setting up their own kind of COVID tracking systems in a very grassroots manner. And so that really formed the basis of the surveillance system that we have today, in that there were some cities or some local public health departments where these systems were set up, and others where it just -- there weren't researchers in that particular city or in that particular county who were interested in it.

So one example of this is the Wastewater Scan Project, which started from research at Stanford University. And these scientists who became interested in this in 2020, started tracking for COVID at sites across the Bay Area, and that led to the Bay Area having robust surveillance, because there were scientists there interested in it, right? And so now today, we have this kind of patchwork system where a lot of this is based on who kind of started doing this a couple of years ago. Obviously, that's not a complete blanket statement. The CDC's National Wastewater Surveillance System, or NWSS, as they call it, has put in effort. They've made a lot of funding available to state and local public health departments, and they have really tried to get more equity in this surveillance, have tried to incentivize more state and local health departments to get involved with this work.

However, the CDC does not have the authority to actually require this work, right? So it's still a very opt in system, which is why, when you look at the map of where wastewater testing is happening, you have some states like New York, where I live, where every county has wastewater testing.

And then you have other states where, like some states in the Midwest or South, although this is uneven across the country, some states where there's maybe one or two sites or zero sites in an entire state. So it's really that kind of mismatched level of investment coming out of that grassroots moment in 2020, 2021, combined with a lack of authority on the part of the CDC, and a lack of authority to not only incentivize public health departments to do this, but also to get the wastewater treatment plants involved in the process.

So typically, with this type of surveillance, it's done through a public sewer system, and it involves scientists or health officials collecting samples from treatment plants, public treatment plants. And the staff of these treatment plants are not part of the public health system, they're part of like a different department. Depends on where you are, but it might be like a water management authority, or in New York City, it's the Environmental Protection Department.

Depends on where you are, but they're a different agency. They're not public health workers. And so similarly, there is not necessarily authority on the part of the public health system to require these treatment plants to be collecting samples. That is also an optional process. And in most cases, the treatment plants are not being paid for what is essentially extra work they're doing. So it's the patchwork kind of from this combination of uneven interest, uneven resources, lack of authority, to really require on a broad basis, in the same way that the CDC can require testing companies to report their PCR tests, or can require hospitals to report their COVID patient numbers and other things of that nature.

Beatrice Adler-Bolton 14:40
Thank you so much for such a great breakdown of also the many ways that this is also functionally limited right now, by whether it's opt in, locale, decentralization, or even just the way that we disconnect public health from environmental mitigation, from health care, right, as these three separate categories where there's supposed to be no overlap, right? And yet, it's hard to imagine being able to do healthcare without the public health or the sewage treatment portion, right?

These kinds of false siloing and separations between these things is part of how they're made into markets, right, and part of how they're regulated in the US. And I really appreciated the way you brought in that longer history of wastewater surveillance. This is something that, as you said, is not a new technology. It goes back to the very foundational story, the foundational myth of public health, of John Snow and the Broad Street pump in the 1850s in the UK.

There are more recent instances, like during typhoid outbreaks in Canada in the '50s, or in the context of polio, where we saw researchers really getting creative with this stuff, doing some kind of heinous things in a lot of cases too, getting really invasive in terms of people's privacy, and being able to get these systems set up so completely that they could, for example, figure out which block someone sick with typhoid lived on.

Betsy Ladyzhets 16:05
Yeah. I mean, that work has been done with COVID too actually. Not really in the United States so much because it would cause a privacy issue. But for a story I wrote for Nature this spring, I talked to a couple of researchers who are doing this in Hong Kong, and they were -- in 2020, 2021, they were really doing that work of tracking outbreaks to specific buildings. And then the government had the authority to require everyone in a given building to do a PCR test, and then that really helped them to identify and quarantine people.

Beatrice Adler-Bolton 16:39
Yeah, no. I mean, it can get really quite complex, and we've seen a lot of really interesting experimentation happen. We've also seen, again, encroaches on privacy and consent, like in the '60s at Yale, there was an epidemiologist who was studying incarcerated girls without their consent, without their knowledge, studying the waste of youth incarceration facilities to measure the efficacy of the polio vaccine. So some of the data that we have about how polio vaccines work in the population comes from wastewater surveillance data, actually. So this is sort of just how how robust these things could be, right?

It's also been used in the context, though, of transforming public health towards this race to the bottom in order to be able to facilitate the reproduction of capital, like in a historical sense, beyond COVID. For example, in the 1970s, gold mining companies teamed up with the government in South Africa to set up a cholera surveillance system in the residential facilities that the gold mining companies were running for their employees. So you have a company town with a waste monitoring system, and the point is to keep an eye on the cheap pool of labor without an overhead investment in health infrastructure to support the health of the laborers themselves, right?

And I think what's really important to think about is how, right now, we are seeing a little bit of a look of this as wastewater data surveillance beginning to be pitched and discussed within the United States almost as this silver bullet solution, one size fits all, really easy way to watch for COVID without having to set up the kind of infrastructure that people don't like, because people are "sick and tired" of the pandemic, and they're tired of testing, and they're tired of this. So this is pitched as a kind of non-intrusive way to get everyone's "pandemic data" without them really having to do a lot to participate in it.

And there are a lot of downstream problems with relying on a picture that, for example, separates a disease that is spread from person to person through the air from the knowledge that that individual is sick, right? When we're taking a test, we get the results. We don't get the results of our individual wastewater data. So there is a kind of remove there that is a problem in terms of potentially producing more community spread, because it's creating a knowledge gap in the individual who is sick, in the shift from relying on primarily testing data to wastewater.

But really, I think the real point for how these systems were designed and used was to be this extra tool on top of other systems. And what we're seeing now is this is really kind of all or nothing in the US. And as you said, this is also extremely limited to only certain places. This is one of the biggest examples of spatial and geographical inequity in the United States when it comes to health. Folks who are on septic systems, who live in rural systems, who didn't have a state university interested in investing in this project, or a project that didn't get funded, that wanted to invest in it, for example. You saw the lack of access that these communities had was directly proportional to the financial interest in terms of knowledge production within the research system itself.

Betsy Ladyzhets 19:55
Yeah, and I think it's such an important point that wastewater surveillance really if, it's working well, is intended to be a complement to the other types of public health surveillance, not a replacement. Any modeler or public health official who I've talked to about this really says that the data are very hard to interpret, which we can get into more later -- the data are very hard to interpret if you don't have those actual case numbers to compare them to, and so now we're sort of left with this current moment, like now this summer, where it's like, okay, we could tell we're in a huge surge. We don't really have a great idea of how many people are actually sick, because the population level data is so in specific. And there are certain advantages to having an entire community in one sample, in that it catches everybody, even if they're asymptomatic, even if they don't have access to go get tested, like --

Beatrice Adler-Bolton 20:48
Often before it would be picked up on a PCR.

Betsy Ladyzhets 20:51
Yeah, right. So there are advantages to that, but it also can't really stand on its own in the way that many people now want it to stand on its own.

Beatrice Adler-Bolton 21:00
Absolutely. Now maybe what would be helpful is to walk through again what our data picture of COVID used to be, because we've talked about this as a layered strategy, as ideally complementary. Right now, we are seeing the Bridge Access program come to an end, but running out of funding before it's even over. That was supposed to help cover vaccines and treatments for folks who are without insurance in the United States, so folks are going to not be able to access the updated vaccine for free in the fall.

We have seen mask bans rise in multiple states, and we are seeing the second fall of commercialization and the privatization of COVID care and vaccines and treatments. Folks who are getting sick are having a much harder time finding testing, having a much harder time finding testing that their insurance will cover, that doesn't cost $350. The copays for paxlovid are out of control in the United States. There's a whole network of group texts I'm involved in where it's just a bunch of people texting each other, like, "do you have any extra Paxlovid at home, right? Do you have an expired Paxlovid in your cabinet that I could use, right, because I'm getting quoted $1,300 from GoodRx."

And what we're seeing is that ultimately, as we've talked about for a long time on this show, while it was discussed over and over, throughout the early years of COVID, when we were seeing things changed or shifted towards "normal," there was this discussion of off ramps, right? We need these off ramps from "lockdowns." We need these off ramps from mask mandates. And what we're going to do is we're going to look at the data, and as Ashish Jha used to famously say all the time, masks are like an umbrella. You put it in the closet when you don't need it, and you take it out when you need it. And so we've seen this idea, right, of there being a way to, like a weather report, check your risk level every single day, and make a day-to-day, personalized decision based on essentially a race to the bottom of how bare minimum can you make your protections, which is always what it's implied.

And what we're seeing now is that also then the only remaining picture is wastewater data. And so as we've said, this doesn't necessarily offer the kind of picture that folks were sold, that they were able to do these daily risk calculations, that they were able to selectively care about COVID only when COVID was bad, right? Not to take a preventative, precautionary approach to COVID that could ultimately reduce the overall amount of infections.

So I think it would just be really good to talk through, when we saw this wastewater data system set up, what the other COVID data pictures were that complemented it, because I think in some ways, it can be very painful -- I don't know how you feel about it, as someone who's covered this closely for almost five years now as well -- sometimes it could be really difficult to look back at, for example, how comprehensive testing availability was in November of 2020, in January of 2021, and then to look at it in July of 2021, and start to see already the kind of dynamics that for some didn't even become apparent or evident until 2023, right?

We had these progressive beat and drum beat of off ramp, off ramp, off ramp. And gradually, we have seen all of these different complementary data pictures of COVID fade away, become less important, become less robust as a result. But I think it's just helpful to get a general sense of what we used to have.

Betsy Ladyzhets 24:28
Yeah, no, that's such a good question. Yes, I do get bummed out by it sometimes. Like just a personal example, I live in New York City. We used to have literally hundreds of free PCR testing sites, including hospital facilities, including the mobile vans that were going around. Also a lot of handouts for free rapid tests. All of that is almost completely dismantled. There's now one free PCR testing site left in the city besides the hospitals themselves. It happens to be a close walk from my apartment, so I still go there all the time, and I enjoy, in sort of a morbid way, enjoy talking to the people who work there, because I'm one of their regulars. I go there every couple of weeks, whenever I feel a need to get a PCR test or think it might be helpful for me. And it's -- yeah, it's just disappointing, even in a city like New York. Anyway, to answer your actual question, yeah.

So one thing that I think is also maybe hard to recognize with COVID is that this disease was tracked more comprehensively than any other disease, like ever in the history of the United States Public Health System, right? For no disease prior to this were we actually tracking individual cases on such a scale. Prior systems to track things like flu or other seasonal viruses or outbreaks of foodborne illnesses, things of that nature. usually, if you're tracking individual cases from the part -- on the part of the CDC or a local public health agency, it's in the context of a specific outbreak, and then sort of the outbreak is closed, and that tracking system is completed for its point.

But with COVID, public health systems were really counting every case, which I think led to a sort of mistaken overconfidence in the data, or a sense that we actually knew where every case was, and even could track things like recovery rates, which was one thing that popped up on some of the early state dashboards that I remember we looked at with the COVID Tracking Project, that would sort of assign a value of cases that didn't lead to a hospitalization or death were marked as recovered after a certain period of time. We now know with Long COVID that that was a completely false thing to do.

But there was just this false sense of certainty, I think, with a lot of -- a lot of the early data. And also this kind of attempt to get every PCR test result, contact trace everybody in certain places, and understand exactly who was sick and how they were doing. And so we had that case information, testing information, hospitalizations. Hospitalization data didn't actually fully come online until later in 2020, because, as I was saying with the CDC authority challenge, the federal government does not, under normal non-public health emergency situation, have authority to require hospitals to count up every case of a particular disease.

And so that was a new authority that the federal government was granted during the public health emergency, and then was kind of taken away. Although a bit of -- a bit of good news for COVID data is that the CDC -- we are going to have more robust hospitalization and data again, starting this fall, because of the CMS requirement. But I guess my point is that we used to have testing, cases, hospitalizations, and really this very robust public health tracking system that was based in part on a lot of free and easy access to testing and also a lot of contact tracing, in really letting people know they had been exposed to COVID and trying to actively go out there and find cases. Obviously, this was very different in different places, depending on how many resources your local public health system had, but much more of it was going on than now.

Beatrice Adler-Bolton 28:35
Well, and I think one thing that is worth just noting really quickly about the hospitalization data, this is one of the critiques that we had about the exact way that the end of the Federal Public Health Emergency went down. A lot of the data that we were getting was based on the pandemic state of emergency. The Federal Public Health Emergency was allowing all these additional powers. And so there was a little bit of confusion about this, and we've talked about this a lot on the show, but when the hospital data was ended, right, this was a decision that resulted from ending the Federal Public Health Emergency.

And what has happened over the last couple of months is that we've seen the rules change so that they can get this data outside of that declaration of an emergency now, but what we have had is a gap where, in the interim, right, there hasn't been mandatory reporting, and so it's been voluntary. It's been more patchy. And as many folks may remember, oh gosh, back in -- back in, what was it, February, 21st or 22nd, 2022, that was when we saw the change in the transmission map, where we saw the community transmission level map, which was based primarily on case data, and it had these controls built in, right, for what happened if a county, for example, was not reporting any cases. It had metrics built on top of that where it was looking at cases and hospitalizations. And what we saw in February of 2022, in late February, is the switch to the new community level system.

Betsy Ladyzhets 30:08
Yep.

Beatrice Adler-Bolton 30:08
They dropped transmission.

Betsy Ladyzhets 30:10
Oh so silly, yeah.

Beatrice Adler-Bolton 30:11
And this was the classic switch from the full saturation red, yellow, green, orange map to the pastel colors, right? And eventually, in the fall of this year, we saw the wastewater dashboard and map replace that, and what we got was a transition to a very calming blue, right. So part of the big story of pandemic data, and I really appreciated, Betsy, the way that you set up the fact that the amount of surveillance for COVID was actually in some ways unique to the status quo of disease surveillance for respiratory, or seasonal, or vascular -- especially for vascular diseases in the United States.

So throughout the last five years, we have seen a very vocal demand to return to that status quo, instead of a demand to raise our systems of surveillance to that which is possible, which is that we could look at RSV, at flu, the exact same way that we look at COVID, right? That these things could be made available, and that we do not have to accept the COVID deaths that we accept and the COVID infections that we are asked to accept, but we also don't have to accept the flu deaths and infections the way we are asked to accept them.

There are tens of thousands of people that die a year in the United States of flu, on the worst years, right, we have 30,000 to 50,000 deaths. And that is something that we had the capacity to do something about, but we didn't have the norm to do something about. And so what we've seen, in a lot of ways, is both the literal comparison of COVID being like the flu, which is inaccurate, but then also the data picture, of making the data picture of COVID like the data picture of the flu, has been something that has been enforced on the data, and that almost reinforces the lie that COVID as a biological disease is mild or not a big deal.

Betsy Ladyzhets 32:04
Yeah, yeah. That is exactly what has been happening. In terms of both the hospital tracking, for example, the CDC has this network of, I believe it's around 500 hospitals that report, or have historically reported things like flu and RSV hospitalizations, and now, in our current gap between COVID hospitalization reporting requirements, that is where we've also been getting our COVID hospitalization information. It's a much smaller network than all the hospitals in the country. And you see the same thing happening for testing, like we still have a bit of PCR testing data, but it's from this limited number of labs that have the resources to participate more permanently in CDC reporting and all other things of this nature, in addition to the way that the CDC has framed their wastewater data, which I know we'll talk about more later.

Beatrice Adler-Bolton 32:55
Actually, let's maybe get into some of these specifics on what's been going on recently just within wastewater data. So as we talked about, this is now the primary metric. Most of the time when you see people in a reported story, like in a mainstream news outlet, you'll see wastewater data frequently referenced as the kind of baseline, bog standard, here's where COVID is at in the US right now. Now, that can come from a number of different places. There are a number of different ways of looking at it. And there have also been some recent controversies around some of the players involved that I think it would just be good to get into all the details of.

And this is something that your piece, again, for folks who want to check it out, is called "Wastewater surveillance for COVID-19 keeps evolving. Here's what you need to know," and that's on The Sick Times. And one of the great things about this piece is it really breaks down some of these recent changes that have been really confusing for people. So can you set up what are the top line points of your reporting? And also, what do you think is most important to set up for folks in terms of disambiguating the current landscape of really what we're talking about, about wastewater data collection, especially when it's being cited, and some of the problems that we're seeing in the way that it's being used.

Betsy Ladyzhets 34:11
Yeah, very complicated stuff, so I'll do my best to explain it clearly, but feel free to stop me or ask more questions or anything. So I'll start with the two more privatized organizations, because I think this has been a lot of the source of confusion. So we have Biobot Analytics and WastewaterSCAN. Biobot Analytics is a startup company. They're based in Massachusetts. And they, prior to 2020, were working on wastewater surveillance for opioids. That was kind of their research area. And then when COVID hit, they were among those scientists who discovered, hey, we can use this technology to track COVID, and they really rapidly expanded.

I think their company went from five people to 100 people within the span of like a year or two, just as an indication of the sudden interest in this area of science. And one of the main sources of funding for Biobot was they had a contract with the CDC, with the CDC National Wastewater Surveillance System to be testing a bunch of sites across the country for COVID -- wastewater treatment plant sites, I should say. And this was kind of an add on to the existing CDC program, because the CDC was trying to solve this problem that we talked about earlier, of not every state health department or local health department was doing this testing, but the CDC really wanted to try to encourage more kind of geographic equity across the country. And so their way of addressing that was setting up this -- these contract -- this kind of string of contracts with private companies to supplement the CDC system.

Beatrice Adler-Bolton 35:52
Classic US public-private partnerships.

Betsy Ladyzhets 35:55
Literally classic, yes. Like the CDC cannot require state health departments to do it. So they -- well they actually also were offering grants to state public health departments, which some of them have taken. But, so it's kind of two part. They offered grants, and they offered this program of like, hey, this company will come in and do your testing for you. You just have to send us the results. So that's what Biobot was doing.

Biobot, also somewhat confusingly, has their own network of testing sites that was separate from the CDC program. Because in 2020 when Biobot started doing COVID work, they really wanted to demonstrate the potential of wastewater surveillance, and so they basically recruited a bunch of wastewater treatment plants and local health departments, local county officials and so forth, to say, hey, we'll test your samples for free, and we'll put it on this public dashboard.

So the Biobot COVID dashboard (that no longer exists, but that existed for a couple of years), for a while, it was a combination of these sites that Biobot was testing, either part of its free public network or through individual contracts with certain counties or certain local health departments, plus these -- at its peak, it was around 400, 500 I think -- a few hundred sites that Biobot was testing with the CDC.

And so Biobot was taking all of this data, processing it in the same way, and putting it on this dashboard, and that was where we got the national and regional trends that people were really relying on for a long time. Then last fall what happened is the CDC took away Biobot's contract to do that supplemental testing work, gave it to a different company. And so suddenly, Biobot both is no longer testing for these 500 or so sites and also, it took away huge source of funding for the company, because Biobot had had this contract with the CDC for a year and a half, I believe, at that time.

And I think was -- my understanding from some of the reporting that's been done around this, from me and other journalists, like Politico had a great story that I can send you -- but it seemed like Biobot was expecting kind of a further extension of the contract, and when that didn't happen, it was kind of a shock to the company. They had to lay off a lot of people and really reallocate their resources. So Biobot is still doing COVID testing for the sites that are in their own kind of free network, and also they have these individual contracts with some different local, state government kind of places. But it's a much smaller number, right?

I have in my story somewhere, like the approximate number of sites they're testing at now. I think it's around 150 to 200 was what their CEO, Mariana Matus told me. But it's a smaller number than when they also were testing all of these sites for the CDC. And so Biobot ended its really popular COVID dashboard I would say most likely as a consequence from losing that CDC contract, because the whole kind of resource situation for the company changed, and also they were no longer testing at so many sites. They're still reporting some national and regional COVID trends. They're doing now like a weekly respiratory virus report, which includes COVID, flu and RSV. So they're still doing some of that reporting, but it's different from the dashboard. You can't see all the historical data anymore, and it's a much smaller group of sites than it was when they were incorporating the CDC contract in their reporting.

Beatrice Adler-Bolton 39:36
Now re: the Biobot decision, I'm not sure if you were talking about the reporting in Politico from Ben Leonard in like October of 2023, about --

Betsy Ladyzhets 39:45
Yes. Yeah, yeah, yeah.

Beatrice Adler-Bolton 39:45
…the contract dispute, which is such an interesting piece, because ultimately the contract that was going to Biobot, which was I think something like $30M, $31M for 18 months, for an 18 month contract with the CDC. The CDC did not provide a reason why they were ending the contract. They switched to a different vendor. They switched to Verily, which is a subsidiary of the Google parent company, Alphabet. And ultimately, Biobot appealed the decision with the GAO, and still we don't have an official reason why that switch happens.

But as Ben's reporting in Politico from October 2023 notes, what we do know is that Verily got a contract for $38M over five years. So this is a huge price difference, right? It's a huge change in the level and focus of investment from one company to the other. Now you could argue, oh, well, maybe this is just economy of scale, right, and Verily can do it cheaper. But what I think we can really look at here is that ultimately, the cost value argument and the cost-benefit analysis of tracking for COVID at all, and what the value of these various data metrics actually is to the federal government has changed since the contract was awarded to Biobot.

Their priorities change when the contract changes. And I think it's kind of evident in this moment, both how confusing it is to also then have the data and the way that it's being analyzed and the way that it's being aggregated in some way standardized, just by the fact that it's one team doing it all, to have that then translated, right, to another company, we have issues, I think, so many issues when it comes to data continuity with wastewater data, both in terms of the selective geographical coverage, but also in terms of the fact that when we say wastewater data, it's really difficult to compare Biobot numbers to WasteSCAN numbers to the CDC numbers, because they're not all the same.

Betsy Ladyzhets 41:49
Yes. Yeah, that is the reporting I was referencing from Politico. So thank you for pulling that up. Yeah, just to clarify, the CDC was always planning to end that year, year and a half contract, and then have a new five year contract. But the question of whether the new five year contract would go to Biobot or a different vendor, I think, was what kind of surprised people and what Biobot was disputing.

Beatrice Adler-Bolton 42:12
Yeah, absolutely,

Betsy Ladyzhets 42:13
Yeah. But yeah, the continuity issue is huge. Standardization is a huge issue. When I talked earlier about wastewater surveillance coming out of this grassroots moment of research in 2020, I think that's really important to remember now, because all these different research teams at different universities, companies, public health departments, were all doing things in slightly different ways, because they're all kind of figuring this out at -- in a early pandemic, public health emergency moment. And now, a few years later, there are some ongoing efforts at standardization. I know the CDC is working on this, there's a National Institute of Federal Standards -- oh, I forget, whatever NIST stands for -- but it's a national -- like another national US agency that's working on standards for wastewater data, and there's some international projects too, but it's still an ongoing thing. We don't have that set up yet. And so many of these teams, whether you look at state to state, or company to company, are doing things in slightly different ways. And so it does get kind of hard to interpret.

Beatrice Adler-Bolton 43:19
Yeah, a listener of ours who's involved in one of these projects recently described it as jumping out of the airplane before you finished sewing the parachute.

Betsy Ladyzhets 43:28
Yeah [laughing], that seems like a good analogy.

Beatrice Adler-Bolton 43:31
Yeah. And when you spoke to folks who worked at Biobot, part of the reason why they had to shut down and change their system, as you mentioned, and they're very upfront about this, is the fact that without that funding, these projects are not possible, right?

Betsy Ladyzhets 43:48
Yes.

Beatrice Adler-Bolton 43:48
And not possible to continue at the scale that they were operating at. Would you want to talk about WastewaterSCAN? You've mentioned a little bit, Wastewater -- this is another one of the companies. They're based in California. This is the Stanford project. And again, this is another picture of how interest and funding and the knowledge economy of public health and research in this country is also shaping the data picture that we have.

Betsy Ladyzhets 44:13
Yeah, so WastewaterSCAN is the other big, non-governmental player in the current wastewater data landscape. So I mentioned them earlier. They were started out of Stanford researchers, and they're still formally based at Stanford University, so they're a bit more academically focused, but also have received nonprofit funding to expand their testing program. And so similarly to Biobot, they've had this network of sites where they're testing for COVID in sewage. It's around 200 -- well, it was around 200 and then was recently cut down to more like 150 sites. And the thing that is unique about WastewaterSCAN, compared to some of the other big wastewater programs, is that from fairly early on, they have been very focused on expanding beyond SARS-CoV-2 and looking at different viruses or different pathogens.

So they are currently testing for -- I think it's about a dozen different pathogens at all of their sites. And so it's COVID, flu, two different strains of flu, RSV, mpox, norovirus, a couple others, and they also have been kind of leading the way on some H5N1 work, which researchers are looking for that in wastewater too. And so, a couple months ago, WastewaterSCAN cut down the number of sites where they were testing. It's a little unclear exactly why.

Some reporting has suggested it's also a funding issue, and also kind of a -- I would say a continuation of their prioritizing not necessarily the ongoing COVID surveillance, but rather this more academic demonstration of what can this technology do, what other viruses can we look at. Like I mentioned, they are doing some work now on looking for H5N1 and trying to track that in wastewater, and trying to do things like isolate viral sequences associated with human waste from animal waste. This is a kind of hot area of wastewater research right now. So more focus on that, as compared to the kind of ongoing surveillance, like COVID surveillance work, which I know has been a real disappointment to people who have followed their dashboard and followed their data, especially folks who live in California or in the Bay Area specifically, because WastewaterSCAN has always had a lot of testing sites in California.

They're based out of Stanford, and that's kind of their -- where they've been testing for the longest period of time. And so losing continuity at some of those sites, I think, for the people living in that area, in the counties and sewer sheds covered by this testing that has suddenly stopped, I think that is a real blow, even though WastewaterSCAN kind of says, we're still testing in a lot of our California sites, and the information is still relevant. Like, if your neighboring county is doing testing, that's still pretty -- you still can get some indication, but it's not as specific, and the continuity is kind of lost there.

Beatrice Adler-Bolton 47:15
Yeah, I've heard from folks who, for example, work at a university that partners with WastewaterSCAN, for example, like the systems that are set up for specifically tracking infections in dorms, for example, like if you're a university professor at a university where they've got a contract with WastewaterSCAN, then it's helpful because you get a picture of exactly how many kids in the dorms are estimated to be sick with a whole host of things. I mean, I think as a kind of broad perspective, it's inspired a lot of people to think through how to try and have conversations with the administrations that they're in, about just general masking as a need and a norm for the university community. But obviously, the amount of universities that have this set up are very few and far between, right. Like not everybody's University of Pennsylvania.

Betsy Ladyzhets 48:07
Like all the other kinds of COVID surveillance too, this used to be much more common in 2021, 2022 when universities were "reopening" and bringing students back on campus, a lot more places were doing this sort of thing. Many of them have stopped. Yeah.

Beatrice Adler-Bolton 48:21
Yeah, absolutely. These two systems, right, how much was the overlap in terms of geographical coverage, do you know, between Biobot and WasteSCAN?

Betsy Ladyzhets 48:30
That's a good question. I don't know off the top of my head, although there have definitely been some efforts to look at this. I think part of the challenge also with these kinds of projects, when they are like private projects, is that there's not always the highest level of transparency. Like Biobot's dashboard, for example, was national, regional and then county level for all of the sites that were part of Biobot's network, not the CDC sites, but they were only providing that county level data, they weren't actually sharing where the exact sewer sheds were. So that makes it a bit harder to compare and contrast really specifically.

Beatrice Adler-Bolton 49:09
Yeah, no. I mean, that makes sense. Maybe this is a good moment for us to talk about the sort of official CDC dashboard that you also cover in your piece. This recently has taken over as the kind of primary tool. I mentioned earlier, when it was -- when the wastewater map was launched, it was also tied to the becoming ascendant, as the new transmission map that was being circulated by the CDC and by the US government. And what we've seen is we've talked about issues with standardization, breaking continuity, right, and this is kind of where a lot of those issues become most visible.

Betsy Ladyzhets 49:44
Yes, that is exactly it. So the CDC's dashboard, the way it works is that the CDC National Wastewater Surveillance System, or NWSS, is pulling and compiling data from a bunch of other -- like a bunch of smaller wastewater testing projects. So state level projects, local level projects at public health departments, and then also the testing sites that are part of the CDC's private contract with previously Biobot, now it's Verily, and then also WastewaterSCAN actually also reports to the CDC. They're just sharing their data with the CDC.

So you have all of these different data sources coming in, and all the projects have slightly different ways of testing, ways of processing the data, ways of normalizing it based on population. And they're all representing different communities at the geographic level, which is a whole other area of challenge with wastewater data. Because different sized communities, like a sewer shed in New York City is going to look very different from a sewer shed in a more rural part of California or something. And so you have all of these kind of differences coming in.

And the CDC team had to figure out, how do we present all of this in a unified way? I was actually really surprised when their dashboard came out in December, just based on my reporting and my understanding of all of the standardization issues, I didn't think they would ever have a national trend line from the CDC dashboard. I was just not expecting it. And I have had the opportunity to interview Amy Kirby, who is the director of NWSS, a couple of times, and I asked her about this, and she was like, yeah, it was really, really difficult.

So I do want to kind of preface the criticism with that, just say like, it is a huge challenge. The question is, did they respond to that challenge in an appropriate way, or with an appropriate level of transparency, you know?

Beatrice Adler-Bolton 51:42
Well, and I think it's also important to emphasize all the critiques that we're making are structural, right? We're talking about --

Betsy Ladyzhets 51:48
Exactly. Yeah.

Beatrice Adler-Bolton 51:49
…the resources and the priorities and the authority and budgetary allocations and the interest in funding and supporting and having multiple, layered data pictures of COVID, right? This is kind of what we're looking at. I think it's not -- it's important whenever we're talking about COVID, where it's so easily dragged into a narrative of XYZ bad actor, right, in XYZ position, to always be emphasizing, part of what we're talking about and why we're leveling these critiques is not to come for any one person, but it's to say that ultimately, what we're seeing in the actions that sometimes people are forced to do, and sometimes they're enthusiastically doing on other hands, show us something about the political economy of COVID, show us something about the COVID landscape that we're working with, and actually, most importantly at this point, the lack of support, the organized abandonment of COVID is just so evident in the very fact that, for you, you were surprised that this was even possible for that team.

Betsy Ladyzhets 52:46
Yes, yeah. I think that is a great way of laying it out. So thank you. So the way that the CDC responded to this huge challenge is they kind of invented a new metric for visualizing wastewater data. And speaking of the flu comparison, it was drawn from the way the CDC visualizes certain types of flu data, in that the agency has kind of a baseline of what they consider to be low flu activity based on healthcare system visits, like people who present to a doctor's office with cough, runny nose, sore throat, whatever, those kinds of flu like symptoms, there's a baseline for that based on a certain number of health system organizations that are reporting to the CDC. And then when there's more of it, more doctors' visits for flu like symptoms, the CDC can say, okay, we're X above the baseline. And then when you get a certain amount above the baseline, it's like, okay, we're in flu season.

So they came up with kind of a similar process for wastewater data, called the wastewater viral activity level. And so it's a similar kind of thing where for every testing site that's reporting to the CDC, the agency's analysis process is to calculate this kind of baseline of "low COVID levels," and then compare any new value that comes in to that baseline. And so at its face, this is like -- it kind of makes sense, but where this gets complicated is the timeframe of the baselines, right?

So first of all, the CDC National Wastewater Surveillance System did not really exist in its current form until like 2022, just because a lot of the particularly like state and local surveillance programs, took them a while to get started up, and there was a lot of back and forth on methods and all of the data continuity issues, I think were starting to get kind of solved more by 2022 which is when the first kind of iteration of the CDC's National Wastewater dashboard came online. So when you look at the CDC's trend lines, they start with the peak of the Omicron wave in early 2022. That's like the furthest back you can go. So that kind of -- that's one part of the baseline challenge, because we're starting with this -- the highest peak we ever had in the US.

Beatrice Adler-Bolton 55:16
Right. Normalizing that in a literal, literal way.

Betsy Ladyzhets 55:19
Literally normalizing --

Beatrice Adler-Bolton 55:21
In a mathematical way, not an ideological normalization.

Betsy Ladyzhets 55:25
Yeah. Yes. And we literally don't have the data -- for a lot of these sites, we literally don't have the data for the periods in 2020 and 2021 when in many parts of the US, there was actually low COVID spread, you know? Like I would say, spring of 2021, when everyone was getting vaccinated and Delta hadn't hit yet, if you look at the wastewater data from places like Boston or the Bay Area sites in California, where we actually did have wastewater testing going on that whole time, you can see, those were some real lows. But for many sites across the US, we just don't have data from that period, and so the baseline is biased in that temporal way.

The CDC also is only using six months worth of data for their baseline calculation, and sort of recalculating it every six months. So we have this kind of process where every six months, there's a new baseline, and it continues to be a high baseline. So when you look at the CDC dashboard and it says low, you really, really have to take that with a grain of salt, because what the CDC's baseline calculation process calls low, is not what I would call low. It's not what a lot of the other wastewater or health experts would call low.

And I think an illustrative example of this is to look at New York state actually, which I'm partially biased because I live here and I look at the New York state dashboard all the time, but the researchers who run the New York state surveillance program, they're based at Syracuse University, have similarly been tracking counties across New York state for a long time, and their dashboard is much more kind of conservative in what they call a low value. So if you look at New York City, for example, like we have never hit low in the last three years, not since that period in kind of spring 2021 did we actually hit what the New York state dashboard calls low in New York City and in other parts of New York state. But if you look at New York state on the CDC map, you will frequently see it marked as low, when the New York state map, which is run by a different group of researchers, and calculating things in a different way, says high. So it's really just like -- it's confusing.

Beatrice Adler-Bolton 57:41
Mhm. It's confusing and it's frustrating, because this isn't the first time we've seen the temporality of the pandemic reframe what is an acceptable baseline for how many people are sick at any one time. Now we're in a position where we also have no idea how many people are sick at one time. We have estimates, right? We have guesses that can be made. But the idea that we could know everyone was sick who was sick, right, which is a fantasy of competency, which is a fantasy of surveillance, that was not entirely accurate.

So as you pointed out, we tried very hard and went above and beyond the kind of normal, bog standard disease surveillance, treating this like an outbreak, right? And ultimately, what we're seeing is the deprioritization of COVID outbreaks and no longer treating them like outbreaks, treating this like it's endemic, treating this like it is normalized, like it is the understood baseline of low level circulation that we should all be preparing for and expecting, right? Like the problem is that makes society incredibly inaccessible. It's putting the economic burden on folks, that instead of putting that burden on the state, it's put on individuals who are contracting COVID and missing work and on the hook for the cost of care, and on the hook for the cost of treatment, and on the hook for the cost of testing, and on the hook for the cost of vaccination.

And, of course, all of these things that we're being exposed to with COVID, right, in terms of the risks of Long COVID, the risks of an acute infection itself, these -- and the economic risks, these are all things that many people are doing because, again, the political landscape and the political and economic interest in doing anything about COVID so evaporated that this tradeoff that people are being forced to make, the false choice of "going back to work," or going back to normal, ultimately, is a mode of privatization. This is a pathway of privatization. When we see costs, and I'm talking both economic costs, but also the consequences of COVID, passed from the federal government and one unified entity, right, to many different entities, we're also seeing the costs passed on to the individual people who are getting sick.

And ultimately, I think what's really difficult is that we live in a context where these relationships between public health and government are really oversimplified. And this is something that we've touched on a lot, you know, the idea of, okay, well, the CDC doesn't technically have the legal authority to do XYZ, so they did ABC instead, right? Or their authority changes when one branch of government ends a federal public health emergency, and that shifts the kind of surveillance landscape as a result. But, I think people just think that -- not people who care about COVID, but the average person I think just sort of assumes that there is a kind of independence between government and science, right, and that scientists are doing everything they can to know everything that they can, and that we have this fantasy of competency, and that there is a perfect surveillance system, and we did know where all the COVID cases were, right, which again, was not -- folks in rural areas also did not have access to tests and care and treatment the way that folks in urban areas had. You're talking about all of the ways that it was so easy to access free testing in New York City.

It was something I experienced as well, and then moving cities, it was fascinating to just see the difference in testing access between New York City and Philadelphia, both are rich cities with enormous testing access, but with two completely different pictures of of state wealth, right? These inequities and uneven access to the visibility of COVID has always been a part of it, right? But I think people got really almost tricked by this idea that there is a kind of independent scientific panopticon, right, that's like watching all the COVID cases and knows where it is and is able to tell the government from this independent position, what they should do, right, and that there isn't this influence of politics and political economy and funding and sovereignty, right, and that these agencies are independent, or that these agencies have the capacity to do whatever they want, right?

But this is a much more complex relationship, where we see the feedback of the research being shaped by the political economic priorities, right, getting people back to work, getting through the economic COVID depression, right? That was a priority. And we began to see that mirrored and reflected in the ways that research is happening, not necessarily out of any conscious decision, but because of the very complex, interrelated nature of scientific knowledge production in the state.

Betsy Ladyzhets 57:41
Yes, I mean, that's all so well put, and it reminds me of something else I wanted to touch on with this, which is this challenge with actually still answering some of the basic questions that we have had since 2020 about how wastewater surveillance works for COVID. The first stories that I reported on this topic, scientists were saying, we don't really know how much an individual person sheds data, or deposits data into their sewer system, right? We don't know how that works. We don't know how that changes based on someone's symptoms, or how long they're sick, or whether they're asymptomatic or not, or any number of things. There are some hypotheses from people like Mark Johnson at the University of Missouri, that someone who's immunocompromised or has a really persistent COVID infection or viral persistent sort of situations, could be depositing COVID in their waste for months at a time.

Beatrice Adler-Bolton 1:03:29
I have so many problems with the hyperfocus on that.

Betsy Ladyzhets 1:03:32
Yeah. I mean, it's like -- I mean, yeah, definitely a lot of other stuff to get into there. But, my point is that we don't -- we still don't know how all this stuff works. We don't know how weather patterns can play a role. We don't know how animal populations can play a role, which is now becoming a more important question with attempts to use this tool for H5N1 surveillance. And the funding for the research, my understanding from my position as a reporter, is it's kind of hard to get these projects going, because instead, the focus is just like, well, let's get wastewater surveillance up and running for more pathogens so that we don't have to do other types of public health surveillance, when really it should be the opposite.

It should be more of this basic research and also more of the pairing of wastewater surveillance with other kinds of public health surveillance. Like, if we really wanted to answer that question of X COVID viral number in the wastewater corresponds to Y number of people sick, what we would have to do is we would have to survey people regularly, like call up a random sample of everybody who live in a given sewer shed and ask them, have you tested positive for COVID recently? Have you had symptoms? Have you had an exposure? And you would have to do that kind of direct going out there and finding the cases and pair those numbers with the wastewater data. And you'd have to do it like every couple months, because the virus keeps changing. It keeps mutating.

We don't know how that impacts wastewater numbers. So yeah, there are all these questions that are just completely not answered at this point, and it's really hard to answer them when the interest in the science is not kind of keeping that COVID surveillance focus or not keeping that priority on what we know is a really, really dangerous, multi-systemic pathogen that can lead to all kinds of long-term health problems.

Beatrice Adler-Bolton 1:05:28
Absolutely. Well, and I think that there was this false reassurance that came from the way that the picture of COVID, especially during 2020, was portrayed.

Betsy Ladyzhets 1:05:39
Yes.

Beatrice Adler-Bolton 1:05:40
As you're saying, a lot of what we're talking about today wasn't even up and running in 2020 nearly anywhere the way that we're talking about it now. This metric, which has come in to stand for so much, right, is part of that mythology of that comprehensive fantasy picture of knowing where all the infections are at all times. And I think that that was very comforting to people who are very unsettled by the uncertainty of COVID and the fear that I think a lot of people had about the consequences of an infection. And what I think we saw was an urge to reassure people, right, an urge to downplay the panic, right?

We know that there's an extensive history of literature around crisis management and public health and dealing with fear and what should be prioritized, whether it's fear or public safety and public health, whatever, blah, blah, blah. This is like a whole complicated dynamic, right? But ultimately, what we did see is that, for a number of reasons, there was a reassurance that was offered early on, that is a picture of COVID that persists to this day. COVID is not a big deal for children. COVID is fine to get four or five times a year. It is really not producing long-term disability at a mass scale. It is not producing death. It is not an equity issue, right?

And we're seeing a lot of people hold on to this picture of COVID really only because they say, look at the data from 2020 and look at the data now. This is something that I know listeners encounter all of the time. I'm sure you encounter it as well. When you encounter this kind of argument, how do you push back on that? Because I think it could be really helpful for folks to hear from you in particular, now that we're especially seeing the centrality of wastewater data, whether we like it or not, that is -- that is what is the baseline right now, right? And whether we agree with how these things are settled or not, I think it's important to both understand how to critique them, what's really in them.

But also I'm just kind of curious how you've dealt with that apples to orange argument from folks who have just really still bought into the original idea of COVID is just the flu and it's really no big deal, which is obviously so far from the truth. And I know that you, like us, have been working for years to push back on these narratives, and it's a very difficult thing, and nothing -- there's no one trick that works, but I'm just very curious to hear how you talk about how to deal with that dissonance of comparing 2020 to now and saying, look, things are better when they're not.

Betsy Ladyzhets 1:08:10
Oof. Yeah. What a great question.

Beatrice Adler-Bolton 1:08:11
When they're really not.

Betsy Ladyzhets 1:08:12
I mean, I think part of my response is like, the 2020 data wasn't that good either, you know? We did not have robust COVID testing in spring 2020 or really for the first year of the pandemic. Those robust -- the testing vans that were on every block of Manhattan, that didn't happen for a while. And so we really didn't know. I mean, especially back in spring 2020, there was the whole issue with the CDC had a faulty test, and I remember this because I was volunteering for the COVID Tracking Project at the time, but there was a period where the case numbers were just huge magnitudes lower than they really are. And so there's no good data really to make that kind of comparison, I think, is one part of the challenge.

Another part of the challenge with the data today that I will point to is the widespread lack of testing that we talked about, in terms of, so many people these days are likely now walking around with COVID with no idea. I mean, you see this with social media, where people point out, oh, like the flu from Lollapalooza, or the cold from Lollapalooza. Probably a lot of those people have COVID, but they don't have access to testing, or they're only doing one rapid test, and they don't know that really, they should be doing two or three rapid tests, and all -- like the right way to use the rapid tests and all of these things. So it's really, really very hard to tell.

And it's -- when we think about things like Long COVID, which is my other -- these days, my main area of reporting, it's going to become very hard to identify, I think, to what extent people's long-term health issues are directly attributed to COVID. I actually had an interesting conversation about this with Ziyad Al-Aly, who is a prominent Long COVID researcher, whose research I've covered a lot, and he suggested this idea to me that I keep thinking about, that we're going to have to consider COVID almost as like an environmental hazard, and we're going to have to use things like wastewater data to approximate, like was someone exposed to COVID in a given time period, in the same way that we now calculate this with pollution exposure and try to tie that to long-term risks of cancer or other kinds of debilitating health issues later on.

And so it gets much less precise when you think about doing things this way, but when you don't have the actual public health infrastructure, it's really hard to do the more precise calculation of how many people actually died of COVID this year. I don't think we have good numbers for that either, because so many people are not tested, and our system of death certificates is so uncentralized and underresourced, like everything else.

Beatrice Adler-Bolton 1:10:53
See: Economic Endemicity Blue, which is actually not about wastewater, but about the National Vital Statistics System --

Betsy Ladyzhets 1:11:00
Exactly.

Beatrice Adler-Bolton 1:11:00
And how deaths are reported, yeah.

Betsy Ladyzhets 1:11:02
Yeah. And I think it creates this kind of cyclical bad situation where you have people who work in public health agencies or in media or whatever, saying, well, it doesn't look like COVID is a threat, so we're not going to focus on it and we're not going to look for it, but then it doesn't look like it's a threat because we're not looking for it. And that kind of stems -- I think that leads to these issues of lack of testing and the lack of research into the questions that would help us really robustly interpret the wastewater data and all of that stuff.

Beatrice Adler-Bolton 1:11:34
I mean, this issue of where the relationship between testing and the public understanding of the causal links between infections and persistent post-viral illnesses, like Long COVID, becomes really important. And something that for years, we've been really worried about on this show. And this comes from work that Artie and I were doing around disability, chronic illness, and something called biocertification, which is a term that comes from the Disability Studies scholar, Ellen Samuels, from their book Fantasies of Identification.

And this is really the idea that people with Long COVID don't really deserve legitimacy as a group from a biomedical perspective, until we can be really sure how to tell a real Long COVID case from a not real Long COVID case. And this is a false dilemma, right? The idea of sorting between legitimate and illegitimate claimants for SSDI is one of the foundations of where this idea comes from. And as we're seeing, a lot of folks with Long COVID are having a really hard time with SSDI, the same way that a lot of folks with chronic illnesses have a really hard time with SSDI.

And one of the things that I think is really important to understand when we're talking about regimes of biocertification, which this is not to say that getting a blood test that proves your disease is real is a bad thing you shouldn't want or demand, right? This is about the kind of system that sees your disease as invalid until such a point as you have a valid blood test to prove it, right, that you have the kind of documentation there.

And I think what we've seen in terms of how these pictures of COVID and how the data picture of COVID and the data narrative of COVID have really had the worst consequences, frankly I think is most evident in the minimization of Long COVID. Now that you're covering this pretty exclusively right now, I'm just curious if you have any thoughts at the meta level of how some of these limitations, mythologies and priorities of political economy that we've been talking about, and also these dynamics of privatization and individuation, have come to shape the landscape that folks with Long COVID are up against right now.

Betsy Ladyzhets 1:13:44
Yeah. I mean, I think this issue of certification has been a huge challenge with Long COVID, particularly the debate around definition of how do you define Long COVID and who "counts" as a person with Long COVID, has been just a huge area of focus, leading up to one recent example is the National Academies of Science, Engineering and Medicine, NASEM, put out a pair of reports a couple of months ago about Long COVID. One focused on attempting to provide a Long COVID, like a definition, and the other focused on Long COVID as a disability, specifically in response to challenges people are having with getting SSDI and other forms of disability benefits, and trying to lay out all the ways in which Long COVID can be disabling.

And these two reports, I think -- I wrote about them for The Sick Times and they similarly have led to a lot of debate, because there's all of this -- both among people with Long COVID and researchers and healthcare workers, this question of, how do we define it? What are the actual prevalence numbers? How do we identify who is "eligible" for which clinical trials or what kind of clinical care? And I don't know, I guess I find it challenging to cover sometimes because there are so many people who have chronic diseases that are similar to Long COVID, overlap a lot with Long COVID, and aren't getting the same kinds of attention. If you look at myalgic encephalomyelitis or dysautonomia or mast cell activation syndrome, like all of these things that have been around for a long time, and are now only kind of getting more research attention because of the link with Long COVID.

Like, I think all of these people for whom they might not have a positive COVID test, they might not have actually had their symptoms caused by COVID, but they have the same symptoms, and they have the same kinds of debilitating issues or impacts on their day-to-day lives. And the obsession with the definition and the diagnosis, I think, is -- I don't know, it creates a lot of complications when you have this huge group of people impacted by COVID and everything else. Obviously, if you look at the flu, COVID is much more likely, we know, to cause these sorts of long-term health issues than the flu, but also, people have had ME from the flu and other other viral infections. So you can't really discount any of this.

And so I think about that a lot in my reporting. I think about how to have a wide net of sources. I think about how to try to incorporate and learn from the experience of people who have lived with these diseases for a long time, or have been studying these diseases for a long time. I think that's something we really try to think about and we're really deliberate with when we set up The Sick Times, and try to just consider as much as possible in all the stories we do.

Beatrice Adler-Bolton 1:16:45
Yeah, no, absolutely. I think one of the things that as someone who has a rare disease, an autoimmune disease that's really not well understood, that's actually very different from Long COVID, and often mistaken for Long COVID by folks online, which I'm always trying to be like, no, no, like I'm here for you, but I actually have something very different. I know there's a worry that I have, right, in seeing the way that we saw a trendy investment and a lot of enthusiasm and creativity behind wastewater surveillance, for example, and then that attention waned, and that investment waned, right? And these projects are still existing, but they're not -- there's a version of the world that we could have lived in where you and I are having a conversation today about how we could be making wastewater surveillance really great, right? And that is absolutely not the conversation that we're having.

And I worry, as someone with a rare disease who has gone through multiple different diagnoses, who's been told years ago, oh, you've got to get sicker before we can even start to look at you clinically, who didn't even get treated as a legitimate patient until I went blind out of nowhere, and they were like, oh, fuck, a major organ system, I guess we have to do something about this. And that's actually what led me to finding doctors that would get creative and treat me, right? But I worry, I really worry about what happens to diseases in our political economy, right?

This is where the foundation of our research for the show comes from, and the work that I do for years, which is, how does the siloing of diagnosis and of medical billing codes, right, which define our identities, disabled people, right, especially chronically ill people. A lot of the times when we're dealing with denials of care, my own denials of care have been because my rare disease and the current understanding of my rare disease is not exact, one to one reflected in, for example, the documents that guide how Medicare pays for care, right?

I went through two separate, more than one year long drug denials on a drug that I had been getting since 2011, for IV immunoglobulin. And I know this is something that a lot of folks with Long COVID and ME are trying, or trying to access right now, to try. And it's a drug that, oh my God, I remember the first time my doctor told me about it, and he's like, listen, nobody really understands how this works. And it's been around a long time, and we've tried this on a lot of diseases, and the fact that you're getting access to this might mean 15-20 years, maybe you'll get your own drug because someone approving you getting IVIG might mean that there is some research interest and recognition for your symptoms down the line.

But I came from such a small disease population, and I always have come from such a small disease population, that we have never had the option of like -- I've never had the option as a patient of thinking that one day, there's going to be a team of people sitting down to develop a drug for me, right? The drug that I have now, because I still haven't gotten access to IVIG, that was still denied, they gave me something else instead, which is great and working. It has been a very difficult adjustment. It's an IL-6 inhibitor, which also has been used to treat acute COVID for folks who are hospitalized, particularly folks with HIV who are hospitalized. Usually it's tocilizumab that's used in that context, in conjunction with cortisol steroids. But I'm on a different one. I'm on a different IL-6 inhibitor, but it's basically the same.

And this drug, for example, was first developed and looked at, at a point where we had a completely different idea for how we were going to use it. And then it was repurposed one way and repurposed another way. And eventually, it returned back to the area of research where it originated, which was looking at inflammatory diseases that are B cell diseases. It's like many drugs, for example, AZT, which is a very famous drug in the history of HIV/AIDS, because it's kind of like the first drug, right, that we see being tested. There's a lot of talk around the way that the fight that ACT UP had with the NIH also changed research, and that was around AZT.

And AZT is a drug that, again, wasn't newly developed for HIV/AIDS, but was developed in the 60s and tested under this understanding around retroviruses in birds. And at the time, there weren't known retroviruses in humans and so that research got shelved, and then was put into part of the Wellcome Trust, as part of an open patent. And when HIV was discovered to be a human retrovirus, there were a generation of researchers who had worked on AZT, who had not been able to work on this for a decade, 15-20, years, right, who already had a knowledge base to work with and to go back to, to try this. Now, AZT didn't end up being the final drug for folks, right? We've come up with a lot of great things to begin with.

But the thing that I think is really important to understand is that there are all these drug options that could be trialed. We could see physicians getting really experimental with patients in a one on one way, we could see really interesting ways of studying and looking at these diseases which we've lived with for a long time, right? ME, we have really long -- decades, decades, decades, over 100 years of documentation of ME, right? We could be approaching these things with so completely a different attitude that respects what a patient says about themselves, that respects the autonomy and the need for treatment, and the need for care, that also respects scientific process, right? But none of this is possible under the constraints of our political economy.

And this is why, this is why we started Death Panel in 2018. This is why I became public about being sick, even though I used to hide it, because I was worried about losing my job and losing the health insurance that I needed, and how was I going to cover the out of pocket costs for IVIG, which is hundreds of thousands of dollars a year, over $300,000 a year. So I had really high stakes to being found out as sick for many years. But what I started to see was things like the Right to Try act being pushed.

And we're seeing this again as part of the plan for Project 2025, Republicans are all in on Right to Try, and we're seeing all these changes and pushes for innovation in pharmaceutical delivery and development, right, that really benefit the patent system and these kinds of existing dynamics. And at the end of the day, the legitimacy of group legitimacy and visibility of diagnosis and dedicated research, all of this shit is being denied to folks with Long COVID, has long been denied to folks with ME, or folks with MCAS or Lyme, right, or any of the autoimmune diseases that have been sidelined for lack of a diagnostic marker.

And what I'm worried about and maybe going to see is this kind of trendy engagement and then abandonment with the establishment again, of the idea that the burden of proof for COVID is tied to this pandemic data picture that we've also eliminated, and that deeply worries me. And a lot of the work that we do around the pandemic and the data picture of the pandemic has to do with these concerns around biocertification and the focus of research and knowledge production and how we approach sick people in the political economy.

Betsy Ladyzhets 1:24:17
I mean, I was reading Health Communism recently actually, and I -- the last chapter, and the discussion of like, everybody is going to be included in the surplus population, but also how do we prioritize people who most need to be prioritized? And how do we cast a wide net, but also understand what the very specific needs are, is something I think about a lot in reporting, in organizing, which I do a bit and like, yeah, how -- like the current economy that is so obsessed with really specific definitions or really specific data points, just makes all of this really hard.

Beatrice Adler-Bolton 1:24:57
Asbolutely. It also I think makes the experience of having Long COVID even harder, you know?

Betsy Ladyzhets 1:25:03
Yeah.

Beatrice Adler-Bolton 1:25:04
That's that's why I think it's important for folks like you to be taking the focus of your work and trying to direct it specifically towards knowledge production that supports the autonomy and self determination of folks with Long COVID, because so much of the knowledge production and reporting around Long COVID is done by people who are not accountable to folks with Long COVID. And I appreciate that at The Sick Times, you all are making a very intentional effort to be accountable to the people who matter.

Betsy Ladyzhets 1:25:35
Yeah. I do not have Long COVID myself, also just to -- sometimes people think I do, so I try to be clear about it. Although I have chronic anosmia, which I think of as kind of a related disability, although one that is much less debilitating than what a lot of people with Long COVID are dealing with.

Beatrice Adler-Bolton 1:25:51
Yeah. I mean, there are a lot of us who are on this kind of autoimmune spectrum, right? And those of us who have been part of the autoimmune spectrum for a long time understand the mushy ways that diagnosis is going to change, right, and shift, and how it changes.

But I think the important thing for chronically ill folks in general, like those of us who don't have Long COVID, right, but who understand the political economy that folks with Long COVID are being thrust into, it's so important to be taking the experience, the lived experience that we have about how these systems work, what the political economic priorities are, and really what the truth is at the bottom of things, like why we're even prioritizing the wastewater dashboard, why the wastewater has become the metric, right, and these narratives of progress and improvement. And I just really appreciate the work that you've done, not only to incorporate that in a way that, again, is also still just straight reporting, much more straightforward than the analysis that we've been getting into today, but also contains these critiques, because this is literally the kind of structural landscape that we're up against here.

Betsy Ladyzhets 1:27:01
Yeah. Thank you. I did want to say, I think, I don't want this to come across as too nihilist. There is still information. It's obviously very difficult and very sparse, but there is still information we can glean from wastewater data, particularly for people who live someplace where their sewer shed is being monitored, or an adjacent one is, or an adjacent county. It really is worthwhile to find and keep an eye on that. It's not useless. Also, some of our hospitalization data is going to come back in a little bit. So we -- obviously, we know so much less about how and where COVID is spreading now than we did a couple years ago, but we still know enough to say now, for example, we are in a huge surge across the United States. Wear masks, test frequently. Do everything you can. I think just because we don't have as much information is not an excuse to not do anything.

Beatrice Adler-Bolton 1:27:57
Absolutely, absolutely. Because I think that there's a lot of magical thinking when we point out, okay well, this is a structural problem and this information is not available, doesn't mean that you don't need to protect yourself from COVID, right? It just means that you actually are relieved from the burden of having to make a decision, because you just probably should. Because we don't -- we don't have the picture.

Betsy Ladyzhets 1:28:19
Yeah, yeah. I mean, when I was working on that wastewater story that we've been talking about, I thought Patrick Vaughn, who is a -- he's an engineer who also pays really close attention to wastewater data and makes videos about it on Tiktok and YouTube. And when I talked -- we were talking about the CDC system, and he said, you know, the CDC with their weird baseline calculation and the every six month thing, all this, only kind of marked COVID levels in the United States as high at the beginning of July. And it led to this rash of news articles saying, like, okay, COVID is high, we're in a surge now. When actually, we had been in high -- like high COVID spread for weeks prior to that. And he made this point of like, well, if you were looking at the CDC data to make your decisions, you're like a month late on protecting yourself.

Beatrice Adler-Bolton 1:29:06
Yeah. You can't just put it in your closet like an umbrella and take it out, because there is no weather report for COVID, sadly.

Betsy Ladyzhets 1:29:12
Yeah, yeah.

Beatrice Adler-Bolton 1:29:13
Well, Betsy, thank you so much for coming on the show. This has been so wonderful to just talk to you about your reporting, and also just talk through all of these recent points around wastewater data that have frankly been so confusing for people.

Betsy Ladyzhets 1:29:26
Yeah. Thank you for having me. I really appreciate it.

Beatrice Adler-Bolton 1:29:29
I think that's the perfect place to leave it for today. If you haven't heard our episode from December that we referenced a couple times, Economic Endemicity Blue, highly recommend going back and listening to that one. It's more about death data and how that's constructed and reported. And again, the piece that we've been talking about today Betsy wrote for The Sick Times, it's called "Wastewater surveillance for COVID-19 keeps evolving. Here's what you need to know." There's a link to that in the episode description, so check it out.

And to support the show and get access to our second weekly bonus episode and entire back catalog of bonus episodes, episodes, become a patron at Patreon.com/DeathPanelPod. To help us out a little bit more, sharehare the show with your friends, hold listening or discussion groups, post about your favorite episodes, pick up copies of Health Communism and A Short History of Trans Misogyny at your local bookstore, or request them at your local library, and follow us @DeathPanel_.

Patrons, we'll catch you Monday in the patron feed. For everyone else, we'll catch you later in the week in the main feed. As always, Medicare For all now, solidarity forever. Stay alive another week.

Death Panel 1:31:59
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Transcript by Kendra Kline. (Kendra is currently accepting freelance transcript work — email her if you need transcripts or visit her website)