Still Here, February 14: Links and transcript

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The words Still Here are in a white slightly serif font highlighted in yellow to the left of a Caladrius bird, The Sick Times' mascot, wearing yellow headphones. The bird is perched on a black box accented by a white circle. In the upper left hand of the cover image is The Sick Times' purple logo. The background is black.
The cover image for Still Here: A Podcast From The Sick Times. Art by Sophie Dimitriou.

Summary

Laying the blame for pandemics at humans’ feet prohibits us from thinking more critically about how to prepare for them. Based on a new paper published in Nature Reviews Biodiversity, reporter Max Levy looks at the case for reframing pandemics as inevitable so we can better accept and get ready for what’s to come. 

In this episode of Still Here: Levy speaks with co-hosts Betsy Ladyzhets and Miles Griffis, along with producer James Salanga, about their reporting for The Sick Times and writer-owned science magazine and newsletter Sequencer Magazine. (You can read more about Sequencer Mag, which co-published Max’s story, via their website.)

Also in this episode: Long COVID resources for accessing accommodations taken off an U.S. government site, a sterilizing nasal vaccine for COVID-19 looks to head to clinical trials in humans, and the latest COVID-19 trends. 

Find our Long COVID news and commentary podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.

Jump to a specific part of the transcript:

Still Here overlaps with The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

Additional audio in this episode: 

Transcript

Intro (0:00) 

[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]

James Salanga: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.

Miles Griffis: Hi. I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. 

[Instrumental ends]

Betsy: We’re the co-founders of The Sick Times. 

James: I’m James Salanga and I’m Still Here’s producer.

Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.

Betsy: But here at The Sick Times, we’re not. So we continue to bring you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting.

James: And we’ll do that on our website, social media platforms, newsletter, and, of course, this podcast.

Betsy: Here, we share the latest on COVID-19 trends.

James: And we talk about one or two of the stories we’ve recently published on The Sick Times’ website. In this episode, we’ll talk with Max Levy, who co-founded writer-owned science magazine and newsletter Sequencer Mag about how we might prepare for the next inevitable pandemic.

And Betsy will also share more about other Long COVID resources that have been taken down from government websites.

Miles: We’ll also share some of what’s happening in Long COVID research with some updates.

In today’s update, we’ll include something a little more hopeful.

A new COVID-19 nasal vaccine funded by Project NextGen is entering clinical trials this spring, following approval for the trial from the Food and Drug Administration.

James: Next, let’s get to our COVID forecast.

[Sound of thunderclap and light rain]

Betsy: So our most recent COVID data, which is from the end of January and early February, are showing that we are still in the middle of winter COVID-19 surge.

It’s a bit later than usual for this kind of pattern. And also this winter surge has kind of been going on longer than usual — typically, we’re seeing lower numbers by this time in the year.

But this February, it looks like the surge is going to kind of continue into early spring.

And that’s a product of, really, disease spread kind of increasing in some regions and decreasing in others, particularly in the Midwest — we’re continuing to see higher levels that are kind of coming down. Whereas in the West and South, which are regions that didn’t have as much COVID spread earlier in the winter, they’re now kind of seeing increases.

And in other regions, we’re seeing plateaus.

It was interesting to see — for example, one of the sources that I regularly check for my COVID updates is a map put out from the CDC’s forecasting center, where using emergency department data, they calculate whether COVID trends are going up, down, or staying about the same, state by state.

This week, it was the first time I’ve seen that most states were actually at a — it’s about the same. It’s kind of at a plateau, at least for that metric, emergency department visits, which just indicates that [there’s] still a lot of COVID going around, it’s not really going down in a significant way, as we would want to see right now.

James: Yeah, that’s unfortunate to hear about protracted high levels of COVID.

I mean, obviously, the virus has been in the air and continues to be in the air. But it is unfortunate for folks who are hoping for a little bit of a dip as we head into the spring.

We’ll continue to follow how those numbers pan out. And as we’ve mentioned in previous episodes, you can find out more about how we put together these trends on our website.

Aside from COVID, how are flu and other disease numbers looking right now?

Betsy: Yeah, so it’s a real bad flu season. Several experts that I follow have been calling this a record flu season.

Doctors’ visits for flu-like symptoms, which is a common surveillance metric that’s been used to track the flu for a long time, are at the highest they’ve been since 2002.

So it’s quite bad out there. Flu also is causing more emergency department visits and hospitalizations than COVID-19, like several times more, which is kind of odd.

In earlier years of the pandemic, COVID was causing more of a disease burden on the health care system than flu, so it’s kind of unique to now see that somewhat reversed this winter.

To answer what I think is a common question, it does seem like this is seasonal flu and not the bird flu, H5N1, that is suddenly spreading person-to-person.

We know this based on wastewater surveillance because there are labs, groups like WastewaterSCAN, that are looking at specific flu variants that are able to see this. Then, also, the CDC and public health labs that work with the CDC do testing of flu samples.

So people go to the doctor’s offices, they take a test.

It’s testing perhaps for flu, COVID, and RSV. And the samples that are positive for flu will get tested in a more detailed way to see what strain they are.

And so I just pulled up the numbers — out of 33,000 influenza A samples that have been tested over the course of this flu season, so the end of September onward, only 0.2% of those were H5, which is the strain that’s coming from bird flu.

That’s less than 1% of a decent amount of samples.

And this past week, for example, there were no H5 samples, even though we’re in this period of extremely high spread.

However, that’s not to say, “Oh, don’t worry about it at all”, because I think one of the big concerns right now is that there could be an instance of someone who’s infected both with seasonal flu and with the H5 strain.

And if that happens, that creates a very nice environment for the flu virus to mutate and then start spreading person to person.

So still many, many reasons to take precautions, keep wearing the high quality mask in public settings, ventilation, everything else. Just want to be clear about what’s going on right now.

Miles: What are the other updates for H5N1? I know there’s some other sort of timely stories that have been published.

Betsy: Yeah, so a couple this week. One is that we’ve had a second instance of bird flu jumping from birds to cows.

So a different strain than the one that’s been circulating for the last few months in dairy cows has now also made that jump. So that’s concerning because it just means more of those opportunities for the virus to keep mutating.

And also that second strain that was recently identified is one that seems to be more likely to cause severe illness than the one that’s been circulating for a while now,so that is worrying.

And then the other news that came out this past week was documentation that house cats can pass the bird flu virus, basically, from birds through an outdoor cat to a human.

There were a couple of studies that were supposed to be published in the CDC’s public health journal a couple of weeks ago about bird flu.

And one of those apparently included some documentation of — I believe it was just two or three of these cases, and that study still hasn’t been released yet thanks to the Trump administration’s meddling in public health communications.

But there was a table that was inadvertently posted on the CDC website that was from this study. And then also more reporting from journalists has uncovered more details about what was in this study.

So if you’re somebody who has a house cat or a cat that spends time outdoors, it’s a good time to maybe keep them inside a bit more or keep a closer eye on what they’re doing.

My partner and I have a dog, and we’re definitely keeping a close eye on him.

We don’t want him eating any bird poop or anything like that.

James: Yeah, so I guess with all the news about flu, that’s all the more reason to stay vigilant and prepared.

And speaking of preparedness — after a quick musical break, reporter and co-founder of writer-owned science magazine Sequencer, Max Levy, will share some of his reporting about preparing for the next inevitable pandemic.

Plus, Betsy will talk a little bit more about additional Long COVID resources that were taken down from government websites.

[instrumental segment of theme song plays]

The Sick Times: We won’t avoid the next pandemic. But we can still prepare. (8:04)

James: Usually when we talk about pandemics, there’s often this narrative that comes around that outbreaks are typically humans’ fault.

Roll the dice enough times with wildlife, and eventually you land on a plague.

But taking that narrative and running with it can cause a lot of problems.

And today on the podcast, we have Max Levy here to talk about some of his reporting for The Sick Times and for writer-owned newsletter and science magazine Sequencer about the importance of switching that narrative and thinking about pandemics in a different light.

Thanks for coming on the podcast, Max.

Max Levy: Thanks so much for having me. You all do such good work, so it’s an honor.

James: Thank you! 

So the story starts by talking about this paper that really troubles this idea of pandemics and outbreaks as human-caused.

What did one of the lead authors tell you about why this narrative is actually misleading and potentially deeply harmful?

Max: Yeah, so he told me that this narrative has been around for a long time.

But what makes it a little bit problematic is that it overstates this really compelling idea of spillovers and accidents that kind of give humans a little bit more agency than we should have in terms of one-off events, spillover events.

But at the same time, it kind of distracts from the global drivers of pandemics, of outbreaks, of climate change as there’s a lot of parallels in those cases. And so in distracting from these global drivers, it distracts from the root causes of what contributes to disease outbreaks around the world.

But it also creates an ecosystem where we’re maybe not putting attention in the right places when it comes to saving people’s lives ultimately.

Betsy: That makes sense. Yeah, definitely with COVID-19, I think it’s sometimes frustrating to see the continued discourse about, like, “Oh, is it a lab leak?”, when actually perhaps more attention, more resources should be going to what can we actually do to prepare and also to respond to COVID and to other diseases that are still circulating.

And I know to that end, the paper also hopes to change how we think about pandemics by framing them as inevitable.

What do you want people to know about that shift?

Max: Yeah, I think that labeling pandemics as inevitable and in looking at this work as an evidence base of why they’re inevitable and why they might be increasing in frequency as we look ahead to the next 50, 100 years, it’s important because it allows us to — it allows us a chance to accept these pandemics can just happen, because we have a human society that is just really embedded with the natural world.

We’re brushing up against pathogens and wild animals and livestock with these systems that are really integral to how, for better or worse, our society is organized.

And in accepting that, we can maybe think about the fact that pandemics aren’t really accidents. Pandemics are a natural consequence of how we’ve organized our society.

And so the next logical step is to say, “OK, how do we prepare for them?” as opposed to “How do we stop these accidents from happening? How do we prevent this thing that we have total control over?”

We don’t have total control over it.

The more we can pay attention to preparedness and response, the more we can come up with ideas to strengthen these defenses that protect people.

Miles: One part I really liked about this story was how you framed [that] this pandemic preparedness can come from other places that aren’t the government.Because a lot of it is so dire, but there is so much that can be done.

And we’ve learned so much through mask blocs, clean air clubs, other advocacy groups. So yeah, I’m curious of what lessons have been learned from COVID-19 so far and what can be done outside of the government.

Max: I would say the biggest lesson that we’ve learned from COVID-19 is that we’re not prepared for pandemics.

This country is really bad at handling pandemics, especially federally. We’re not set up for pandemics, and that goes double under this current administration.

We saw so much undermining of health institutions. And we’ve seen with COVID why that’s so bad — we’re still seeing it.

So I think that absent a good federal response, local efforts, more decentralized efforts can pick up some slack.

I wish this would happen more at state levels and happen better. But on whatever scale that we’ve seen it, we have seen some things.

I mean, when it comes to — I didn’t write too much about surveillance, but when you think about the innovations and the work with sewage surveillance, this is not something that has to happen from top down from the federal government. Paid sick leave, that’s not a federal law.

But these are concrete steps that are within reach.

If you convince the right people that don’t have to come from the federal government that can really protect people, having enough paid sick time.

Obviously, scientifically, scientists stepping up with vaccines, innovations to have better testing, these sorts of things can really make a difference.

And we saw with COVID — we’ve seen with COVID still — how having these innovations and getting them in people’s hands, having PPE available for people and accessible makes a difference.

There’s so much that we can learn from even for a different outbreak that might be looming.

James: Yeah, going back to what you were saying about decentralized responses, one thing that you mentioned in your story is the early union response to when COVID first began spreading.

Now that bird flu is on the rise, what role might unions play in building on the precedents that were set in that early union response to COVID-19?

Max: I would say it’d be nice for unions to play a bigger role than what we’ve seen.

The person who I spoke with told me about some wins that they had in negotiating paid sick time in 2020 or 2021 with Tyson Foods and these big employers in the meat processing [industry]. 

They weren’t able to get very much paid sick time.

It’s better than nothing, but there’s a lot of ground to cover, apparently, to convince employers that this is good for public health and also good for business.

And [an]other thing that the people I spoke with in farm worker industries and meat processing [mentioned] is having PPE available, that’s obviously really important.

Whistleblower protections are something that are — I believe they can come pretty inherently with union contracts, but something like that is important if there’s any sort of mismanagement.

As avian influenza, bird flu, looms more and is more and more threatening, it’d be nice to see more paid sick leave, not just for these frontline industries, but beyond, because we’ve seen with COVID that those sorts of worker protections are really effective public health measures.

And when executed well, a good pandemic preparedness plan looks a lot like disease prevention. Taking these things into consideration can prevent a situation from going from bad to worse.

Betsy: Yeah, I think the story also talks about communication as part of the response and the role — I guess this is another thing that unions can do or that advocacy groups can do.

And that we do see these kinds of groups doing, like with the story that we did a few weeks ago about mask blocs and COVID advocacy groups in Los Angeles and Southern California responding to wildfires.

Groups also can be disseminating information about how to keep yourself safe as they’re disseminating masks and other PPE. And then also collecting information back from people in the interest of surveillance [like contact tracing], I feel like there’s a lot more that could be done there.

Obviously, a bunch of unions or mask blocs do not have the resources of the CDC, but there’s still a lot that can be done there and a lot of ways to kind of plug in and fill gaps, I guess.

Max: Mmhm. And there are a lot of gaps.

Even with a really strong supported CDC or state or a local public health system, there is absolutely some truth that people who are working in some of these industries would be more likely to trust someone from their community, fellow employee, maybe someone from their union, when it comes to public health, whether it’s vaccination or PPE or any sort of messaging like that.

It is useful to have what they [public health agencies] call these trusted community messengers to encourage behavior that’s protective for them.

The challenge, even when you do have these trusted community messengers or even when you do have paid sick leave — say you have a generous and adequate amount of paid sick leave — there’s also a problem in some of these industries. Like in farm work, dairy workers, I believe, specifically, there’s a report saying that they don’t feel empowered to actually assert these rights and take advantage of these protections that are in place, because maybe that’s not an environment that’s been encouraged by their employer or for whatever reason.

So it’s tricky, but possible, even without a really responsible federal administration that’s at the helm.

Miles: Yeah, I mean, I think — I really love this story. I love, also, how it shows how we’re still so unprepared for a next pandemic, because we still don’t really understand the long-term effects of this one.

And that’s something that we’re kind of overlooking so often. I was hoping that this pandemic would — and maybe it still will, I think, with research and time — but I thought there would be more of an interest in the general public to respond to what happens to people who become disabled from in these pandemics.

We’ve seen it in Spanish flu to myalgic encephalomyelitis after different outbreaks.

So I really appreciated that this story touched on that.

And I’m curious if there’s anything else that you would like our listeners to know, anything else you came up in reporting that or anything else you want to say.

Max: A lot of the story is about how, despite a completely irresponsible federal administration, how there is still stuff that we can do.

Just to assert that point a little bit more, CDC communications came back, I believe it was last week.

And these were really important weekly reports about what’s going on in public health.

And of course, no mention of anything with COVID, and no mention of anything with bird flu, even though we know that it’s bouncing around.

Betsy: They were literally supposed to have two bird flu studies that were not published, except for that chart that was mistakenly briefly published in the other MMWR [Morbidity and Mortality Weekly Report]. Ugh. Wild stuff.

James: Yeah, those were two MMWR studies [as well], right? They never got published? 

Betsy: Mhm. Well. Maybe they will, hard to say. 

[James and Betsy laugh, despairing]

Max: So that’s worrisome, right?

Betsy: Yeah. 

Max: It’s worrisome. The writing is on the walls. Honest communication about what’s going on, much less preparedness and any action over it — even that’s unreliable at this point from the federal government.

So it’s tough times. And I don’t want to be too gloomy about it, but I hope that we can find at least a little bit of hope and agency.

Betsy: Yeah. I mean, I do think there is some hope in saying, “OK, we can’t rely on the federal government. We, as individuals, or as smaller community organizations, really need to step up and do what we can right now.”

Max: And in a way, it sort of mirrors the story, or the headline that we chose, right?

I mean, it’s “Accept that things are bad, and prepare [Betsy: Yeah. [chuckles]] and work around a completely useless federal response.”

James: I think there is some measure of hope in that. Yeah, I mean, it is bad.

It’s all kind of dire. And at the same time, when you devote more energy to figuring out how you can make things more livable in the spaces that you have influence in, which is probably not the federal government, you can still accomplish some measure of preparedness.

You can still use the agency that you have.

And I feel like there is some hope in that, even as it is not necessarily a hopeful sounding story [chuckles] on its head.

Thanks so much again, Max.

Max: No, thank you guys so much. This was fun. And I’m happy to write with you guys.

Miles: Thanks so much, Max. This is great.

The Sick Times: Now offline: Government resources about Long COVID as a disability (20:50)

James: With that, we’ll move on to our other top story for the podcast this week.

And we’ll be looking at resources about Long COVID as a disability that have been removed off government sites.

In 2021, the federal government recognized Long COVID can be a disability under the Americans with Disabilities Act.

So one of the big implications of that is people are able to request accommodations, request their access needs at their jobs, their schools, other parts of their life. And JAN, which is a website by the U.S. Department of Labor’s Job Accommodation Network, explained what that process might look like for people who — maybe this is their first time requesting that their access needs get met.

Those pages really showed what that looks like.

But as of Tuesday, February 11, Long COVID is no longer listed in AskJAN’s Directory of Disabilities. [Producer’s note: As of Feb. 14, this remains true.]

Betsy wrote a story about it that published on the morning of the 11th. How did you find out about this and what else is missing?

Betsy: Yeah. So first, I wanted to give a shoutout to a reader of ours.

Her name is Dana Barnett. And she is a master’s of social work student at a Long COVID clinic. And that was the person who alerted us to these pages going down.

Dana explained in an email to us that her and her colleagues used these pages at the long COVID clinic. They used them to give recommendations to people trying to go through this process.

And it just was an immediate flag for them that these pages had gone down.

So I was able to confirm that just by going through the AskJAN website, both in the kind of overall landing page that they used to have about Long COVID and specific articles about the disease going over things like Long COVID and how it kind of works with the ADA — those are all no longer available.

They turn up 404 pages when you try to go to those links. Luckily, these pages are archived on the WayBack machine. So you’re still able to read them there.

And we have a couple of links in the story where you can check those out.

But it’s a pretty big deal to see these come down off of this public website.

It’s notable as well because it seems to be specifically Long COVID.

There are plenty of other pages on other diseases.

For example, the AskJAN site has pages about myalgic encephalomyelitis. It has pages about POTS. It has pages about plenty of other chronic diseases and conditions.

Those all seem OK, at least as of our reporting today, February 11.

But Long COVID specifically, those pages are no longer available.

Miles: Betsy, what you were saying about how many sources have talked about this as an intentional targeting is really interesting.

I mean, I think a lot of people with Long COVID would agree that Long COVID has been swept under the rug for the past five years overall.

I mean, this is a very obvious way of literally removing it. It has not been easy for people to apply for disability anyway.

People have been rejected. We’ve reported on that a lot. I’ve shared a lot of people’s experiences with that. And this is just another step that makes it harder. 

What resources might you recommend to people involved with people in the accommodations process right now?

Betsy: Yeah.

So I think it’s important to state clearly that we are talking about public websites, but the law itself hasn’t changed.

The Americans with Disabilities Act remains in place. People are still eligible to request accommodations from their employers or their schools or wherever else.

Folks may be doing that. Legally, that is still the case.

And people with Long COVID also can continue to apply for disability benefits and claim other protections that apply to people with disabilities.

What specifically changed is really, like, [the access to] these websites that made it easier for people to enter that process.

And so if you’re looking for other resources about this, one of the sources I spoke with for this story is Karyn Bishof, who’s the founder and director of the COVID Long-Holler Advocacy Project.

And they recently put out a giant e-book that is called The Comprehensive Guide to Long COVID.

It’s like hundreds of pages. It’s got tons of resources.

There are a couple of chapters in that book that, specifically, we talk about requesting accommodations and other aspects of claiming your rights as a person with a disability.

So definitely that’s one place you can check out. And you can also look at the other organizations that are referenced in the story, as those are other groups that do advocacy for people with disabilities, like New Disabled South.

Miles: And then we also have a Q&A with an ME and Long COVID disability lawyer who also has some great tips.

James: Obviously, this is something The Sick Times will continue to follow.

This is just another concerning thing that has happened in the past few weeks.

We put out a call via email last week for folks to share anything that they want us to keep an eye on around the Trump administration, [about] things going down, which, again, is where we learned about this story.

As things are continuing to unfold, Betsy, is there anything in particular that you’re continuing to keep an eye on?

Betsy: Yeah, so definitely please keep sending us tips, questions, or letting us know what you are experiencing. We really appreciate that information.

A couple of specific areas that we’re going to be reporting on in the coming weeks: One is implications for research on Long COVID and other infection-associated chronic diseases.

So we’re going to be looking at how changes to NIH grants and other federal government agency grants are impacting research.

And then also people who work in the federal government and have Long COVID or related conditions. We really want to hear from those folks, particularly as we’re hearing about threats to force people to come back and work in person and other things of that nature.

James: Yeah, and you can read the full piece and view that archived copy of the Long COVID resources that are on the AskJAN website at thesicktimes.org.

And as always, the story will be linked in our transcript.

James: Next, we’ll have a research update.

Research (26:54)

[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]

Miles: Today in research, we’re talking about an update on the new COVID-19 nasal vaccine funded by Project NextGen.

It’s been a source of hope for many, especially as last year it was shown to stop transmission of SARS-CoV-2 in hamsters.

It will be entering clinical trials this spring following approval for the clinical trial from the Food and Drug Administration, the FDA.

It’s a phase 1 trial. It will enroll 80 participants in four different cohorts testing the vaccine in low and high doses, both in the nose and then also inhaled all the way into the lungs, and it’ll determine the safety and efficacy of the vaccine.

We’ve been following this. We reported on it in, I think, it was August of last year when the hamster study was put out.

So that was a good step. But yeah, it’s good news.

And it also could apply to more respiratory virus vaccines in the future if this kind of technology goes through — the vector technology, they call it.

So that could mean that other flu vaccines, these other things, could potentially use the same technology and stop more transmission of viruses.

So this would be really game-changing.

Betsy: Yeah, I think there’s a lot of optimism about this specifically because while it is, I think, a misnomer to call COVID-19 a respiratory virus, we know now that it impacts all parts of the body.

It does spread primarily through the air, through people inhaling it through their nose or mouth.

So having a vaccine that’s delivered directly through the nose, I think the understanding from research is that that would be more likely to actually stop transmission than vaccines that are delivered into your arm or through, like, another method.

So obviously a lot more research has to happen. This is only a phase one clinical trial, there would have to be more trials after this. But still, it’s exciting news.

James: We’ll have to keep waiting and seeing. But fingers crossed.

Outro (28:41) 

James: So that’s all we have for you this week. You can stay up to date with The Sick Times newsletter and our coverage at thesicktimes.org.

[Instrumental theme song excerpt plays underneath the rest of the podcast]

Miles: We’ll continue reporting the information you need to better practice care.

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.

Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. 

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed the cover art for our podcast, and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders. 

Thanks for listening and catch you next year.

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