Still Here, February 1: Links and transcript

Summary

Access to COVID-19 data during the federal health communication pause. And a breakdown about why the Affordable Care Act might be at risk, from a freelance writer with Long COVID. 

In this episode of Still Here: Co-host Betsy Ladyzhets speaks with co-host Miles Griffis and producer James Salanga about her reporting on the U.S. COVID-19 data landscape. And freelancer Bobbi Dempsey shares why the ACA is so important, along with how to prepare for its potential targeting under the Trump administration.

Also in this episode: another RECOVER survey with over 12,000 participants, a promising peptide development, and the latest COVID-19 trends. 

(Of note: Since the episode’s recording, the Household Pulse Survey — a key source of vital Long COVID data — was taken down following a Trump order on Jan. 31 about removing any references to “gender ideology” on the CDC website.)

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:

• Intro
• COVID-19 trends
• U.S. COVID data landscape amid communications pause
• Preparing for potential changes to Affordable Care Act
• Research
• Outro

Still Here is an abridged version of The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

• The Sick Times: National COVID-19 trends, January 28
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• The Sick Times: Wastewater surveillance for COVID-19 keeps evolving. Here’s what you need to know.
• The Sick Times: Some U.S. COVID-19 data are down amid “pause” to federal health communications
• The Sick Times: RECOVER hasn’t been impacted by Trump freezes so far, sources say. But the program’s future is still uncertain. 
• The Sick Times: As someone with Long COVID, I’m terrified of what could happen to the Affordable Care Act
• USA.gov: Find your elected officials
• Healthcare.gov
• Healthcare.gov: Find local help
• The Sick Times: Research updates, January 28

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 
• Pixabay: Thunder and the beginning of rainfall

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: This podcast is an abridged version of our newsletter, which we publish every Tuesday.

Betsy: We share the latest on COVID-19 trends.

James: And we talk about one or two of the stories that we’ve published on The Sick Times’ website recently. In this episode, Betsy will talk about how U.S. COVID data may be impacted by the pause ordered on federal health communications. And freelance writer Bobbi Dempsey will talk about her essay outlining ways the Affordable Care Act is at risk from the new administration, along with how to prepare.

Miles: And alongside that, we’ll also share some other Long COVID research updates.

This week: Today’s research updates include a new [NIH] RECOVER survey looking at over 12,000 adults that found that “females had a significantly higher risk of long COVID compared with males.” Participants self-reported sex at birth.

Also, there’s a hopeful announcement of some preliminary research from Japanese researchers.

They say that they’ve developed a peptide to prevent COVID-19 infections.

Of note, it still needs to go through a physician-led clinical trial.

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

[Sound of thunderclap and light rain]

COVID-19 forecast (1:40)

Betsy: So the good news this week is that we do still actually have COVID data.

I was pretty worried for a bit there last week that we would lose a lot of our updates on the COVID and other infectious disease picture in the United States, thanks to the Trump administration’s pause on federal health communications.

Luckily, that did not happen. We still have some data, and we’ll talk about that more later in this episode.

So what those data tell us is that COVID-19 continues to be on the decline in the U.S., but is still spreading at high levels, as is expected for this time of year.

And we also have high levels of more traditionally seasonal pathogens, like the flu and norovirus, common colds, all of those pathogens are going around a lot right now.

Also, as we’ve been talking about for a few weeks now, this winter’s COVID-19 wave in the United States was lower this winter than we’ve seen in the last couple of winters.

So that basically means fewer cases, fewer hospitalizations than in previous years, but still, of course, a significant number of cases. Some experts are now kind of watching out for perhaps since a lot in a lot of places there, especially kind of state by state, this looks a bit different.

So in some places, there, like, wasn’t really a winter COVID wave.

And so now there’s a bit of a concern that those states or those communities might be more at risk for new outbreaks kind of as we start to head into the spring. And indeed, indicators are showing increases in some states, particularly in the West and South, which are regions that did not see as much of an increase in COVID levels in the winter so far.

So some states like Florida, Texas, California are reporting, you know, potential increases in coronavirus levels in wastewater emergency department visits, that sort of thing. So that will be something to keep watching out for in the next few weeks.

And of course, it’s important to remember that when we talk about wastewater data, that is a proxy measurement for assessing community trends, not actually a perfect measure of cases.

Miles: You can find more explainers on wastewater and how we interpret it in today’s transcript or on our website.

Betsy: And as we’re seeing these sort of maybe potential COVID increases in some states, disease indicators for the flu also went back up this week after declining earlier in January.

Basically, a lot of flu going around right now, too — a lot of reasons to continue wearing masks in public spaces, staying home if you don’t feel well, doing things outside, and all the other precautions that folks have been taking.

James: After a quick musical break, we’ll talk a little bit more about what the U.S. COVID data situation looks like given the federal health agency communications pause.

Plus, Bobbi Dempsey will talk a little bit more about her Affordable Care Act essay.

[instrumental segment of theme song plays]

The Sick Times: Some U.S. COVID-19 data are down amid “pause” to federal health communications (4:44)

James: The Trump administration has already impacted public health, with officials ordering federal health agencies to pause all public communications until February 1st.

Among the major things The Sick Times is keeping an eye on as things unfold is access to COVID-19 data. Last Friday, the Centers for Disease Control and Prevention missed some scheduled updates to some of its infectious disease dashboards.

While the agency’s wastewater surveillance dashboard was updated, other missing updates still represent a huge blow to anyone wanting to track COVID-19 and other infectious diseases, even though the pause is slated to end tomorrow.

For The Sick Times, Betsy spoke with some outside experts and a CDC spokesperson to get a fuller picture of what’s going on.

I guess we can start with what did and didn’t get updated this past Friday, if you want to share a little bit more about that.

Betsy: Yeah, so as I said earlier, I was glad to see that some data pages did get updated and their usual schedule on Friday, so that was January 24th.

That includes the wastewater surveillance dashboard, which currently includes data for COVID-19 as well as flu, RSV, and Mpox, and all of the national and regional trends and the state-by-state trends got updated there. The CDC also updated a page that it calls “Respiratory Virus Activity Levels.”

So similarly, that has COVID-19, flu, and RSV data — mostly national data, emergency department visits, test positivity, and some state-by-state estimates just indicating where there’s more disease activity in the U.S. right now.

The CDC updated some COVID-19 hospitalization data, but not all COVID-19 hospitalization data, and they also updated their epidemic trends, which is modeling estimates for state-by-state what the COVID-19 and flu picture looks like, and that’s also based on emergency department visits.

And they updated a page about the current situation with the H5N1 bird flu.

So that has case counts so far and other updates about what the CDC and other agencies are doing to track this outbreak.

So meanwhile, there were a bunch of pages that normally would have been updated on a weekly basis by Friday that were not. So that includes many pages on the CDC’s COVID-19 dashboard.

So pages that report like death data, some hospitalization data, test positivity data, date-by-state trends.

The CDC also didn’t update a dashboard that includes statistics reported directly by most hospitals across the country, which was an area of data that we also lost last year and then it came back in November.

A lot of stuff going on.

And the CDC did not post their weekly flu surveillance report or updates to their flu dashboard by their usual timeframe on Friday, although it’s worth noting that the flu surveillance report for last week did actually get updated on Monday.

So to kind of take a step back a bit from this list, it was good to see that some of these pages, you know, did still get updated despite this kind of federal order to stop any public communications from the health agencies.

When I reached out to the CDC’s press office, they sent me back a statement which didn’t really actually answer the questions that I sent them, but seemed like more of a general statement that they were perhaps also sending to other news outlets, just saying that [the] federal Department of Health and Human Services has issued a pause on mass communications and public appearances that are not directly related to emergencies or critical to preserving health.

They said this is a short pause and that there are exceptions for announcements that are “mission critical.”

And so it’s kind of unclear what “mission critical” means, but it seems like, at least from what happened last week, that some of these COVID-19 and infectious disease data pages are considered critical, which is helpful to see that we’re not, like, totally losing all information.

But of course, you know, it would be better if we didn’t have to worry about any of this at all. It would be better if we still had all of the data that we’ve had for the last couple of years. It would be better if we had some of the data that were still available early in the pandemic.

I think it’s also worth always reminding folks that we lost a ton of information when the federal public health emergency ended in spring of 2023, and that was something that Biden did, that was not something that Trump did.

So, you know, there really has been kind of a slow decline in the availability of COVID-19 data for the last four years now.

And this is, you know, a more dramatic step, but it is kind of a step building on what has already happened.

Miles: Yeah, Betsy, I’m curious how this lack of data is impacting public health authorities around the U.S.

Betsy: Yeah, so, you know, I spoke with Maryn McKenna, who is a longtime public health journalist and somebody who tracks infectious disease outbreaks very closely, and she expressed a lot of concern that people who work for, like, state and local health departments or people who are frontline doctors, primary care physicians, people working in outpatient clinics, that they would be without information at kind of a crucial time when we’re at the peak of disease spread for COVID and other diseases.

One particular impact of the communications pause that I didn’t mention earlier was that the CDC didn’t publish new studies in its “Morbidity and Mortality Weekly Report,” or MMWR, which is a scientific journal run by the CDC.

They have published new studies every week for decades and decades, and so this was a real interruption to that.

And indeed, the Washington Post reported that last week MMWR was supposed to publish new information about the H5N1 bird flu, and as we’re recording this on Tuesday the 28th, you know, those studies still haven’t been published.

So, that’s pretty concerning, and that’s information that could be potentially helping doctors identify new flu cases or better track, you know, emerging outbreaks both among animals and watching for science that cases that people have been infected, and that doesn’t just apply to diseases that we know about already.

You know, MMWR historically has been the first to report on new outbreaks that hit the United States, and so any pause in the work of that journal could potentially be a real hindrance to crucial information getting out to the health community.

James: One other thing that is happening right now is leadership at the CDC is currently in flux.

So, why is that the case, and when is that expected to change?

Betsy: Yeah, so we’re in, like, a new situation for the CDC this year.

Historically, the CDC director has just been appointed by the president, but as of 2022, the Senate now has to confirm the CDC director as they do other high-level executive positions, like the head of the defense department or the head of HHS. As we all know, RFK Jr.’s Senate hearing is supposed to happen this week, right?

So now there will also have to be hearings for the new CDC director.

There was some reporting last week from different political outlets that Trump is expected to tap an official named Susan Coller Monarez as acting head of the CDC, but that could potentially be, you know, a short appointment as the Senate confirmation process has to happen.

Obviously, this happens for a lot of other agencies, but it is new for it to happen at the CDC.

And I think it just adds to the overall climate of uncertainty and lack of information.

Miles: What do you want listeners to know about this data change, anything that didn’t make the story that you’d like to talk about?

Betsy: I mean, I just want to emphasize that we still do have a lot of information about COVID and about other diseases. You know, even if the CDC hadn’t published the data that they had last week, we still would have gotten new information from non-government data providers like WastewaterScan or Biobot Analytics.

There are other companies that share data as well.

For example, the pharmacy chain Walgreens has an infectious disease dashboard where they post information from COVID and flu tests that are done at Walgreens pharmacies across the United States.

So I think those sources are not as comprehensive as what the CDC offers, but, you know, we do still have information. And I think there are other science communicators, health communicators who are really stepping up to try and make sure that information still gets out there.

We’re going to continue following all of this at The Sick Times.

We’re also planning to do more reporting about the impacts of interruptions to federal research programs. I know there’s been a lot of reporting about pauses to things like grant review committees, meetings, travel.

And so most immediately, I’m working on a story about what’s going on right now with the RECOVER program from the NIH. [Producer’s note: That story published Friday and is in the transcript links.]

But I think as this situation continues to evolve, we will keep trying to bring folks the news that is relevant to the Long COVID community.

So if you have questions or if you want to share information with us about this, you can reach us at editors@thesicktimes.org. And you can also reach out and ask for more secure communications — like, I’m on Signal, for example, and happy to chat with folks there.

James: You can read Betsy’s reporting on this on our website, along with the full list of non-CDC data sources that we’ll continue to look at. And you can find the link to that in our podcast transcript.

The Sick Times: As someone with Long COVID, I’m terrified of what could happen to the Affordable Care Act (14:20)

James: And we’ll move on to our other top story this week: freelance writer Bobbi Dempsey, who lives with Long COVID, shares a little bit about why she’s terrified about potential changes to the Affordable Care Act under Trump.

Bobbi Dempsey: My name is Bobbi Dempsey, and I’m a freelance writer and investigative journalist.

I specialize in writing about poverty, food and housing insecurity, healthcare access, and other issues that affect especially the working class, middle class, and vulnerable communities across the country. And I’ve had a long history, both me personally and my family, with healthcare access or the lack thereof.

Our healthcare, our health in general, has definitely been impacted for many years on the ability to access insurance and pay for healthcare.

So this was very important to me, especially in the last few years when I, like many other people, have experienced Long COVID and other health issues related to COVID.

So this is especially timely and a big concern for me and many other people right now.

James: Yeah, absolutely.

And so to give people some perspective, you write a little bit about these experiences in the essay, but for folks who haven’t read it, can you share a little bit more about what you and your loved ones’ experiences navigating healthcare before the Affordable Care Act became law were like?

Bobbi: Sure. I often say that the Affordable Care Act literally saved my life, and I don’t think I’m exaggerating when I say that.

My kids and I and many other members of my family often couldn’t get insurance at all before the Affordable Care Act was passed, because we had pre-existing conditions and other issues that would allow insurance companies at that time to deny us coverage completely or charge us much higher rates.

One moment that stands out in my mind was a time when I actually broke down crying in a surgeon’s office and begged the staff to let us schedule an appointment for a surgery my son needed because we had no insurance.

They refused to even schedule a consultation unless we could prove that we could pay for the whole surgery out of pocket. And then we also needed to put a 50% deposit down before we could make the appointment.

Since we obviously didn’t have that much cash available on hand, we actually eventually ended up taking out a loan to pay for his surgery.

I have a sister who needs a double lung transplant partly because she went years without any medical treatment at all before the Affordable Care Act was passed.

And my other sister has advanced MS [multiple sclerosis] and she also went years with no medical care at all, which of course allowed her disease to progress pretty much unchecked for years.

So needless to say, the Affordable Care Act has made a big difference for my family in many ways.

James: Absolutely. And I mean, I think those stories just speak to the ways that healthcare in America has been so inaccessible for so many years.

Like you said, the impact that the Affordable Care Act has made is life-changing and lifesaving.

What components of the Affordable Care Act are you particularly worried about changing or being targeted during this administration?

Bobbi: The protections for pre-existing conditions are major. And I think that would be the obvious starting point for any cuts or changes.

Just changing that aspect alone would prevent many people from getting insurance at all, as I’ve experienced personally in the past, the Affordable Care Act was passed.

I also worry about the possibility that the Medicaid expansion may be rolled back, at least in some states. Several members of my family have been able to get insurance as a result of that expansion. So that would definitely hurt them directly.

The required coverage of certain preventive care helped save lives. So I would hate to see that go.

And then another thing is the ability for parents to keep their young adult children on their insurance until age 26. And that’s especially beneficial for recent graduates or young people who are just starting out in the workplace and who don’t have a way to get insurance on their own.

That takes a burden and anxiety off their shoulders.

James: Laid out like that, it really feels like a lot is at stake because a lot is.

And I think it can be really easy for people to get bogged down in the panic of fixating on the fact that these changes could happen, especially after seeing everything that has already started happening around, for example, the federal pause on public health communications and not to mention all these executive orders that are being signed.

So I guess for you, what has been helpful to think about in terms of preparation and trying to weather what might come in the future?

Bobbi: Yes, you’re right. It can be overwhelming. It’s a lot. And that certainly doesn’t do anything to help your mental and physical health, so it’s only creating more issues for people who are already experiencing health issues.

So I think definitely focusing on action steps, even if they’re small things that you can do to at least make yourself feel like you are doing something and being proactive.

Reaching out to your lawmakers is an important first step to let them know how important the Affordable Care Act is to you and your family. Obviously, some lawmakers will be more receptive to hearing about you on this topic than others.

But I think it’s especially important to look at lawmakers who may be up for reelection in 2026. It’s not too early to start thinking about that. So you want to voice your concerns and the issues that are important to you.

USA.gov has a tool that’s really helpful to help you identify and contact your representatives if you don’t know who they are or if you don’t know how to get in touch with them.

From a more practical standpoint, I think this is a time when you really want to be proactive and diligent about your health care, which is always a good thing, but especially now.

My kids and I have been scheduling any appointments and procedures that we can get taken care of right now to make sure that they’re done and taken care of before any potential changes might happen.

So you don’t want to put off anything related to your health care or any kind of medical treatment right now.

James: I could stand to be a little more proactive about all these things, especially given that everything is really uncertain right now. It feels very much like we don’t know what could happen even in the next few hours.

So I think that’s hopefully helpful advice for folks. But another thing that you include in the story is a number of resources that have been helpful for you in terms of preparing, in terms of thinking through everything that might happen.

What are some of the resources you included and why?

Bobbi: As I mentioned, USA.gov is helpful to find your lawmakers, find out how to contact them. There’s other resources there as well, related to local, state, and federal government offices and agencies.

Healthcare.gov is the central resource for exploring your options through the healthcare marketplace.

Open enrollment has ended now until fall, but you can still use the marketplace if you have a qualifying life event or if you qualify by income.

And I know that the marketplace can be tricky to navigate, but I actually recently helped a few family members enroll in healthcare through the marketplace using a broker that we found on the healthcare.gov marketplace.

And it didn’t cost us anything. And that was the first time we had used a broker.

And we were really impressed and satisfied because they made the process so easy and basically walked us through everything and handled everything for us. So for people who might be intimidated by the marketplace and the healthcare.gov website, I would definitely recommend looking into that.

There’s a button right on the website that lets you click through and find information about brokers and other assistance support that they have available to you.

James: For sure. That’s it for me, Bobbi. But is there anything else that you’d like to share with folks you didn’t touch on earlier?

Bobbi: I don’t think so.

Just to reiterate the importance of being proactive, staying up to date on any treatments or appointments.

As we said, with so much uncertainty right now, in addition to the insurance aspect, it’s possible, I think that you may find it increasingly difficult to find specialists, especially in certain areas. So if you don’t have one already, you know, this might be the time to try and line up any doctors, specialists, other medical care professionals that you might need while you can and just at least get on their patient rolls while you have the chance.

And then speaking up to your lawmakers, letting them know how you feel.

And also, I think now more than ever, it’s important to have a support system around you, people that you can lean on for moral support, for help, even practical things like getting back and forth to the doctor if you need that.

So definitely reach out and nurture your community and your safety net and support system that you might have around you.

James: That all makes sense. Yeah, thank you so much, Bobbi. I really appreciate you making time for this.

Bobbi: Thanks and thanks for having me.

James: You can read her full piece, which contains links to the resources and information she mentions at our website at thesicktimes.org.

And next, a research update.

Research (24:28)

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

Miles: Today in research, we are looking at the U.S. government funding, a new effort for a new COVID-19 prevention drug for immunocompromised people through Project NextGen.

For those out of the loop about it, Project NextGen is a $5 billion program led by the U.S.’s Biomedical Advanced Research and Development Authority and the National Institute of Allergy and Infectious Diseases — lots of acronyms, and lots of long names for these agencies — to help develop the next generation of COVID-19 vaccines and therapeutics.

So a lot of this, I feel like I haven’t really seen much reporting about this, but it just sort of goes to show that behind the scenes, there’s a lot of money being put into COVID-19 prevention and therapeutics.

So the U.S. is giving here $375 million to the company, Shionogi Inc.

The company will develop a long-acting pre-exposure prophylactic that’s called PrEP — you might have heard that before — called S892216.

[wryly] Not the best name.

It blocks the main protease of SARS-CoV-2.

So this is something that you would take as a preventative before to sort of lessen your chances of getting COVID to make it less worse.

From the press release, this technology, called Protease Inhibitor Technology, has been used successfully in treating hepatitis C and HIV.

This is an amazing investment that could really change the game on COVID-19.

Again, this is nothing that would be coming out relatively soon, but this is something that could be, you know, a couple years a year. It’s sort of unclear, but definitely something that’s good to see in the pipeline that this is being thought of and developed.

Betsy: And this is the same company that’s been working on one of the antivirals for COVID that’s available like in Japan, right?

Miles: Yeah, Ensitrelvir is also a protease inhibitor as well.

Betsy: This is a different, like, new product, but kind of helpful to know that this is a company that has a track record of working on COVID treatments.

So also this week in research, we were talking about a pre-print shared on Med Archive, which was a review and meta-analysis of 429 studies seeking to estimate the global prevalence of long COVID. So with this type of paper, researchers are basically taking a bunch of existing studies and trying to kind of combine them into, like, one analysis.

And they came out with 36% of people who had tested positive for COVID-19 as experiencing some form of Long COVID.

So this is obviously kind of a rough estimate because it’s going through this process of, like, estimating from other estimates, but it’s still really helpful to see just as this indicator of kind of where the research is at in terms of Long COVID prevalence.

Another interesting thing that this study did was coming up with estimates for different continents based on the kind of patient groups that the different studies in their analysis were focused on.

So for example, in Asia, 35% of people who tested positive for COVID were recording Long COVID. In Europe, the figure was 39%. In North America, the figure was 30%. And in South America, the figure was 51%.

Of course, you know, these papers are likely using, like, not exactly the same definitions of Long COVID and things like that.

Also, this is a pre-print that hasn’t yet been peer reviewed. But still, you know, these are really high numbers and sort of reflects what we’ve seen from other studies too in terms of just, like, huge populations of people globally impacted by Long COVID.

Outro (28:30) 

James:  On that note, 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.