Still Here, April 19: Links and transcript

Summary

The Trump administration’s order to eliminate $11 billion in Centers for Disease Control and Prevention grants has already impacted some state health departments’ work monitoring and researching Long COVID — even with those cuts in limbo.

And in her collection “Days of Grace and Silence: A Chronicle of COVID’s Long Haul,” Ann E. Wallace chronicles her and her daughters’ ongoing journey through Long COVID through poetry.

In this episode of Still Here: How $11 billion CDC cuts are impacting state health departments’ efforts to monitor and research Long COVID. Also, Jersey City poet emeritus Ann E. Wallace reads three poems about living with the virus.

Also in this episode: Three studies showing the impact of SARS-CoV-2 infection on children. 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:

• Intro
• COVID-19 trends
• CDC cuts
• Poetry on Long COVID
• Research
• Outro

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

Mentioned in this episode (in order of appearance):

• The Sick Times: National COVID-19 trends, April 15
• CDC wastewater dashboard
• Biobot wastewater risk reports
• WastewaterSCAN dashboard
• The Sick Times: $11 billion CDC funding cuts may decimate Long COVID response in several states
• The Sick Times: UPDATE: RECOVER Long COVID pathobiology grants restored
• The Sick Times: A timely book of poetry chronicles a mother — and her daughters’ — experience
• The Sick Times: Research updates, April 15

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.

[Instrumental ends]

Miles Griffis: Hi, I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times. 

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

Miles: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.

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

Miles: Without pandemic denial, minimizing, or gaslighting.

James: On our website, social media platforms, our newsletter and, of course, this podcast.

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

James: And we’ll talk about one or two of the stories we’ve published on The Sick Times’ website recently.

In this episode, we have a scoop and we have some poetry. So Betsy will talk about the impact of the $11 billion Centers for Disease Control and Prevention cuts on state-level Long COVID responses.

And Jersey City poet Emeritus Ann Wallace will read and briefly talk about a few of her poems from her book, Days of Grace and Silence: A Chronicle of COVID’s Long Haul.

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

Today’s research update includes three studies highlighting the long-term effects of COVID-19 on children’s brains, kidneys, and cardiovascular systems.

James: Keep an eye and your ear out next week for a special episode compiling your reflections on five years since the public health emergency around COVID-19 was declared.

Thanks to everyone who contributed.

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

[Sound of thunderclap and light rain]

COVID-19 forecast (1:47)

Betsy: So this week’s COVID forecast — honestly, it’s feeling a little boring to give these in the last few weeks, which is good. I like when it’s boring.

It’s been basically a similar picture with most COVID-19 metrics in the United States showing either slight declines or levels staying about the same for much of the country.

There are some areas of the US where we’re seeing potential increases, but the wastewater data as well as major healthcare systems metrics like test positivity and emergency department visits have shown relatively little change nationally over the last month or so.

The CDC’s forecasting center, which is the Center for Forecasting and Outbreak Analytics, which predicts COVID-19 trends based on emergency department data, their most recent estimates are that cases are declining or likely declining in 33 states and not changing in 12 states as of early April.

Unfortunately, the center did report cases are potentially going up in California.

And there are also some indicators from wastewater data, particularly from sites reporting to WastewaterSCAN that similarly show some potential increases in sites in California as well as some sites in the Northeast, some in New Jersey, New York state.

It’s a bit soon to say whether this is maybe vestiges of a longer winter wave that we had this year or the start of a broader spring or summer surge.

So that’s something I’ll be keeping an eye on in the coming weeks.

Miles: And how is the hopeful end of flu season and what’s going on with measles?

Betsy: So we are now officially at the end of flu season. The CDC determines this with a metric based on doctor’s visits. So the share of all of those visits that are for flu-like symptoms, cough, runny nose, sore throat is now under 3%.

And so 3% is kind of the metric that means we’re in flu season. We went under 3% in the last, like the most recent week of data for early April.

And so that kind of means we’re out of it.

And other more traditionally seasonal diseases also have been on the decline in the last few weeks.

Unfortunately, measles continues to spread across the United States. It’s been detected across the country. I think we’re up to 24 states now with measles cases, with the majority of those being in Texas and states around Texas, and hundreds of cases. The United States for a long time was one of the countries that had eradicated measles, and we cannot say that anymore thanks to under-vaccination and general lack of collective public health measures that have contributed to this outbreak.

So while our focus at The Sick Times continues to be COVID and Long COVID, it is important to keep an eye on this situation with measles, because I think it forebodes a poor attitude towards public health right now, to put it mildly.

Miles: Yeah. Well said. For more understanding about COVID in your community and how we come up with our COVID-19 trends, we have more information in the transcript and on our website.

James: After a quick musical break, Betsy will break down how canceled CDC grants will impact states’ Long COVID programs.

And poet Ann E. Wallace reads three of her poems from her collection chronicling her and her daughter’s experiences with Long COVID.

[instrumental segment of theme song plays]

The Sick Times: $11 billion CDC funding cuts may decimate Long COVID response in several states (5:27)

James: Late last month, the Centers for Disease Control and Prevention abruptly canceled $11 billion in grants for COVID-19 and public health infrastructure efforts. Thanks to a temporary restraining order granted in early April, the cuts are currently on hold for now as a lawsuit filed against the Department of Health and Human Services plays out.

But the fate of Long COVID research and communications projects across several states is still uncertain.

The Sick Times identified specific programs impacted in Colorado, Minnesota, and Washington that have, and sources involved with this work say other state public health agencies are also likely impacted.

So Betsy, can you walk us through how you learned about the impact of these cuts, what you’ve been hearing and why these cuts came down the line in the first place?

Betsy: Yeah. So these cuts, which were announced in late March, are part of the overall Trump administration effort to not only deny that COVID-19 is still a problem, but also take away funding and resources to address it.

So these cuts were announced the same week as NIH grants to fund COVID-19 research were cut and also the Long COVID pathobiology grants that we reported on.

So all of this is part of the same overall package and plan. And in a few states, I learned that these grants have been supporting Long COVID research and communications.

So in these states, the cancellation of those grants has contributed to canceled contracts. In the state of Colorado, the CDC grants were supporting a contract from the state health department to the Colorado School of Public Health to do long COVID research specifically in Colorado.

And so without the CDC grant, the state agency would no longer be able to fund this research from the university.

So that’s one kind of example.

And I also learned about, you know, people who were laid off due to these grants, some who were working specifically on Long COVID research, other COVID-19 and other public health and infectious disease research. Those positions in particular seem to be kind of a target of these canceled grants.

So yeah, it’s really just a lot of disappointing news.

And other news outlets had reported on these funding cuts already, but I think with our story, I really wanted to specifically highlight the implications for these Long COVID programs.

Miles: Betsy, I’m curious to hear more about the lawsuit and how the temporary restraining order stemmed these cuts.

Betsy: So there have been a lot of lawsuits against the Trump administration, many of them from state agencies.

And in this case, it is a coalition of 23 states and also Washington, D.C., where state attorney generals and governor’s offices and state public health departments are all involved with essentially suing the federal health department and saying, “Hey, it’s unlawful for you to abruptly end this funding. This funding was doing really important work. And you need to give it back, basically.”

So that lawsuit was filed pretty quickly after the grant cuts were announced.

It was filed in early April. And then in sort of the first legal move of the lawsuit after that filing, a district court judge based in Rhode Island essentially said, “Yes, this lawsuit has merit. HHS, you need to pause cutting the funding. And all of the programs that are being impacted should be able to continue while the lawsuit progresses.”

That happened through a legal process called a temporary restraining order. I am not a legal scholar or legal journalist, so I was kind of learning with this story.

But my understanding is that, basically, it means like the situation has to go on hold. So the cuts are supposed to be paused, at least for the states that are involved in the lawsuit. It’s a little unclear to me whether this is going to apply to all 50 states because every state was impacted by the funding cuts.

But the lawsuit was specifically like half of the states.

And then there’s another court hearing this week. So we’re recording this on Tuesday. The hearing, I believe, is set for Thursday, April 17th. But there will likely be more court proceedings in the coming weeks. And it will be a little bit before there is a final decision on this.

James: Yeah, that makes sense. I guess we’ll see how that shakes out.

Betsy: There’s also a lot of questions about the authority of the courts right now, which — I put a couple links about this in the story, you know, there’s up to almost 200 lawsuits that have been filed against the Trump administration.

Most of them are in progress, but a couple have actually been decided, and it’s unclear to what extent those decisions are really helping to stem all of the ripping of infrastructure that’s happening with this administration.

Like on the day that we’re recording this, the news just came out about the Trump administration basically laughing at a Supreme Court decision.

So it feels very hard to say what the impacts of this will be, but certainly the legal process is proceeding.

James: You mentioned that there are these 23 states and D.C. that are listed on this lawsuit. I think there’s a lot of questions about what happens to those other states[‘ health departments] that are not listed on that lawsuit. 

But speaking of state health departments in general, what have they typically used the CDC funding for?

Betsy: Yeah, so I think it’s important to talk about this because a lot of the state health department work I feel has sort of flown under the radar.

One of the main functions is surveillance or research. So states were plugged into a CDC survey called the behavioral risk factor surveillance system.

This is like a long-running survey that looks at chronic health conditions and health behaviors.

And in the last couple of years, the survey has included some Long COVID questions.

So states which administered the survey could ask their residents about Long COVID through phone interviews and ask them about common symptoms, experiences, what challenges they were facing, things like that.

However, those Long COVID questions were optional.

So states would have to opt in and devote resources to asking those questions on top of all the other many questions that are part of this giant survey.

So that’s one thing some state health departments were using this funding for.

And also some states were doing their own surveys or adding Long COVID to other like state specific surveys or research projects that they had going on.

In addition to that, some state health departments were doing communications with the public, also communications with targeted groups like healthcare providers or helping to kind of peer to peer educate other health experts about Long COVID.

And in some cases also there were collaborations with community groups.

So for example, Minnesota is one state that’s had more of a robust Long COVID program.

And they’re unique in that they actually got funding from the state government.

So they were using some CDC funding, but they were also using some state government funding, which essentially means that they’re not like entirely decimated by these cuts.

But some of the aspects of their work that were funded by CDC grants have been curtailed.

one example of that was a program called COVID-19 Community Coordinators.

So this was a program run by the state health department giving grants to local organizations in Minnesota to help connect people in the community to COVID testing, vaccines, information, telling them about Long COVID.

And that program was essentially ended because of these grant cuts.

So the grants themselves and also staff who were helping manage the program were funded by a CDC grant.

And as James mentioned, in my reporting I’ve identified a couple of states specifically that we know were impacted by this.

But there are a lot of states that had some kind of Long COVID programming going on.

And not all of the ones that I reached out to responded to my request for comment.

So it’s very likely that there are others that are not directly mentioned in the story, but still had similar work going on that was impacted by these funding cuts.

Miles: And so what happens now if these cuts do go through? How will it alter the landscape of Long COVID research and data collection on a state level?

Betsy: So we’re potentially losing a lot of data collection, especially as the loss of surveillance loss of data collection is following also the end of the Household Pulse Survey questions on Long COVID, which we’ve talked about previously.

So the Household Pulse Survey and the BRFSS both were really important sources of Long COVID data.

And both of those are now either ended or under a serious threat.

Because even if the lawsuit is successful and funding comes back, still a lot of time and effort has potentially been lost or has potentially been stalled to work on these projects.

In some states that maybe have more robust budgets or that have more funding from the state government as opposed to only relying on the CDC, they might have some room to find funding to move to Long COVID work.

But that is not guaranteed by any means.

A lot of public health departments are just chronically underfunded and can’t do all that they want anyway.

And CDC grants just aren’t consistently a really important source of funding for these agencies.

So to lose that or even to have it paused or to have it be in an uncertain status, I think is really hard for the researchers who are working on these projects.

James: Is there anything else that you want to just emphasize about what things might look like as this situation continues to unfold?

Betsy: Another thing that I kind of wanted folks to know with this story is — for Long COVID advocates or community members who are trying to figure out how to respond to this moment right now, state health agencies could be one organization to think about.

NIH obviously is important, the CDC is important, the FDA is important.

But some of these state agencies have people working for them who really care about Long COVID.

We know some of them are readers of The Sick Times and have reached out to us. For folks listening to this, you potentially have some allies there.

And so trying to find that work, support that work.

In some cases, these state agencies also have worked with Long COVID advocates in some places, there are a couple that have had things like community advisory groups.

And so there are areas to get involved and areas to advocate for funding, perhaps at the state level or at the local level in some places like big cities.

I just think it’s important to keep that in mind at this time when the federal government landscape is so terrible.

James: Yeah, absolutely. Thanks so much for covering this, Betsy. You can find the story in our transcript and on our website. And if you want to submit a tip, we also have Betsy and Miles’ Signals linked in the piece.

We’ll also include that in the transcript.

The Sick Times: A timely book of poetry chronicles a mother — and her daughters’ — experience (16:30)

James: Up next, we’ll hear from Ann E. Wallace, who is the poet emeritus of Jersey City.

Ann’s book, Days of Grace and Silence: A Chronicle of COVID’s Long Haul is a chronological poetic retelling of her and her daughter’s experience with Long COVID.

The Sick Times excerpted three poems from Ann’s book, which she’ll read now.

She’ll also share a little about what the poems mean to her.

Ann Wallace: Hi, I’m Ann Wallace and I’m going to share a few poems from my collection, Days of Grace and Silence, a Chronicle of COVID’s Long Hall, which came out in 2024 from Kelsey Books.

This collection begins in March 2020 when my daughter, Molly — my older daughter, who was 16 at the time — and I became sick with COVID, and then it chronicles several years of illness when we didn’t get better and then also my younger daughter became sick as well in December 2022.

this poem I’m going to read first is called Synesthesia and it’s from spring 2021 when Molly and I had both been sick for a little more than a year.

Synesthesia.

I was thinking about hungry birds
and spring and the returned fever
of my daughter but these things
do not inspire hope 

so her sister suggests music
and plays a song she says
is orange and pink
and sounds like a painting 

and now I know
we both hear color
and texture
when others are stuck
listening for the words.

The next poem I’ll share is from that summer 2021 when Molly was about to turn 18, and I’ll preface it by saying that both due to the pandemic and her illness, Molly got her license a little later than most teenagers. So she got her license that summer and I wrote this poem, called New Driver.

Walking, like breathing,
is not yet easy.

Last year the tick tock of teenage
progress came to an unwelcome stop,
and the world closed up
as my daughter, then I, fought for air.

But as spring gave way
to the steady warmth of June,
we reemerged together
to make our way, halting,
up and down our mile-
long street, counting
our breath, in and out,
checking oxygen,
and speaking
of times ahead,
waiting on our return.

Our long illnesses
relapse and persist,
and I am trying,
with my small energy, each day
walking up and down our street.

My daughter though,
she drives now, away,
away, from Ogden Avenue
and reminders of our long virus.

And in the car, it is easy
to forget that walking
still holds the power
to take her breath away.

And I’ll end with a poem from spring 2023, which is near the end of this collection, which is arranged in chronological order because I wanted you really to feel the movement of this illness as we made our way through it.

But by spring 2023, as I mentioned before, my youngest was also facing Long COVID and she was very, very ill with it.

And this poem is called Passages.

It’s been decades since
my body held a narrative
clear and simple. It turned
to poetry long ago, when
a refrain emerged, was
repeated with life
interrupted once, then
again, and again.

A poem always begins
in the middle, or someplace
nearby, because truly, have you
ever tried telling a poet
to begin at the beginning?

When doctors ask me,
or my daughters, how
our illnesses began, oh,
the poems we compose
on paper-lined examination
tables, each one of us a stanza
braided to the other to the other,
with no beginning and no end.

The poet in me dares not ask,
if we are always muddling
around in the endless looping
middle of this story, how
might we ever write our way out?

That poem has a lot of layers to it — not only does it mention my daughters and our illnesses together, but it also gives you a sense of how I use poetry as a way to write my way through and out of illness.

And I had ovarian cancer when I was in college. I was diagnosed in my final semester of college.I also have MS, and of course I have Long COVID.

So I have been living with and writing about illness for decades.

And when COVID hit in spring 2020, when I became sick with it, I decided I needed to write about my experience. I needed to document it. I needed to have a record. And my first instinct when Molly fell ill was to write essays, and I wrote one for HuffPost about her illness, but when I became sick I could no longer write prose.

My brain fog was too severe, I was struggling to maintain consciousness. And so writing paragraphs was utterly exhausting, but poetry, I could do. I could write a poem. And I wrote a poem a day through the worst of my illness. Some of those poems are very, very short because that’s all I had in me at the time, but I am so glad I wrote these poems and documented and I never dreamed I would be sick for years with Long COVID. 

I didn’t know Long COVID would be a thing at the time, and I thought I’d be sick for maybe a month and get better, but that didn’t happen, and the poems helped me tap into what I was feeling in my body — what breathlessness felt like. What feeling myself losing consciousness felt like. What the pain was. What my fears were. What I was observing in the world around me — the rising death count, the various things that were happening. 

And again as Long COVID settled in, I wrote about the time walking up and down the street with my daughter I couldn’t walk for a few months after I got COVID, and so walking was a big deal, and I did that very deliberately as I could and carefully, I’ll say that too. 

But the other thing about it is it was time with my daughter and it was something I could write about then and I have that record of that time we spent together.

So there’s a lot of pain in this collection, but there’s also a lot of love and a lot of hope and I hope that readers can feel that. And again it ends in spring 2023 — not because we were better, no, my youngest was very, very sick at that time — but the the collection kind of needed to come to an end.

So we’re still dealing with Long COVID in my family. I am very, very much doing better thankfully but it has been a long haul and I’m not a hundred percent. I’m not exactly in the shape I was health-wise before the pandemic. I certainly still feel some of my symptoms — I don’t think those perhaps will ever go away, but the collection needed to end, so I’m taking you through three years of this journey and if you’re interested in getting a signed copy of this book you can find me at annwallacephd.com I’d be delighted to send you a copy. Thank you. 

James: You can read engagement editor Heather Hogan’s review of the entire collection on our website. And the direct link to that is in our transcript.

Next we’ll go to a research update.

Research (24:22)

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

Miles: This week in research, we are looking at three studies that are highlighting the long term effects of COVID-19 on children’s brains, kidneys, and cardiovascular systems.

I usually don’t put three studies in one post, but as I was compiling this this week, I was confusing these studies because I thought, “Surely there can’t be three studies showing these long-term effects.”

And as I was writing it, I was realizing that, yes, in fact, there are three different studies.

So I wanted to combine them and put them together for conciseness for our readers.

So the first is a small imaging study that was in scientific reports. It showed potential brain alterations in children following mild COVID-19. We’ve seen lots of research on this in adults.

But yeah, just the idea that a very “mild” infection can lead to long term alterations.

The second study in JAMA Network Open evaluated the electronic health records of 1.9 million children and found that those infected with SARS-CoV-2 were more likely to have new onset chronic kidney disease and worsening kidney function.

Finally, a third study in Nature Communications — these are all peer reviewed journals, by the way — which was also used electronic health records of over 1.3 million participants found that children infected with SARS-CoV-2 are at a higher risk for adverse cardiovascular outcomes, including heart failure, cardiomyopathy, cardiac arrest, and thromboembolism, a.k.a.more likely to have blood clots.

So yeah, I just thought this was really important to put all together.

Earlier in the pandemic, there was this narrative from pundits and others who were saying, that COVID-19 and SARS-CoV-2 infections do not harm children and that children are fine after.

We’ve known that to not be true for years and years and years.

Here we have three studies in the same week showing very concerning long-term damage across multiple organs and how they’re affecting children.

So  it’s very clear that it is having a large impact on children.

It’s quite frustrating writing these every week and looking at all this research and seeing very little action taken by institutions, public health leaders, media.

This is very intense.

Betsy: It’s helpful to see the results verified by multiple scientific publications.

But yeah, frustrating that we keep seeing study after study and still it seems like the implications don’t really get through to policymakers.

Miles: Yeah.

And then to quote Betsy’s story on the CDC funding cuts: “Advocates and researchers are concerned the US is losing crucial resources at a time when the country’s Long COVID response should be fortified, not neglected.”

And I think that really speaks to just every week when we do these research updates and find out more and more on COVID-19’s long-term impacts on the body.

Outro (27:16)

James: 90% of the time, unfortunately, we are ending with this sobering information, but we will continue to share it with you all.

And if you want to keep up with our coverage, we are, as always, our website at thesicktimes.org, our social media platforms, and of course, this podcast.

[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 and Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.