57. What the Shutdown Means for Long COVID

Is scientific research vulnerable to political instability? Dr. Zeest Khan explains how the current US government shutdown could disrupt the billion-dollar NIH RECOVER project, delay clinical trials, and jeopardize the chances of discovering effective treatment. Guests Michael Sieverts and Ezra Spier share insider perspectives on why transparency, stable funding, and patient collaboration are essential to saving Long COVID research and restoring trust in science.

Read more on this topic at Substack

Referenced Episodes:

Tylenol-COVID Connection

Takeaways from RECOVER-TLC 2025

Episode 18: Long COVID Advocacy

Chapters

• 0:00 Intro
• 1:10 What the Shutdown Means for Medical Research
• 2:30 Understanding RECOVER: The Largest Long COVID Research Program
• 3:50 Michael Sieverts on How RECOVER Funding Works
• 5:40 The Risk of Political Interference in Science
• 9:45 Ezra Spier on Politics and the RECOVER Program
• 11:45 The Firing of Dr. Jeanne Marrazzo
• 16:20 Join the Newsletter!
• 17:08 AHRQ's Role in Long COVID Care
• 18:22 Health Insurance Barriers
• 19:28 Why LC Needs Stable Federal Support
• 21:01 The Value of RECOVER-TLC's Approach
• 24:55 How Do We Keep Hopeful?

Transcript

Zeest Khan (00:00)
I'm an American doctor and I'm also an American patient with long COVID. As I record this, our federal government is shut down and that makes me scared. What does this mean for the future of medical research? What does this mean for our chances of finding effective treatments and possibly a cure for this condition? That's what we're gonna talk about on this episode of Long COVID MD.

Currently, thousands of staff at the NIH, CDC, FDA, and NIAID are furloughed. It sounds like thousands are at risk of losing their jobs altogether.

These are people leading medical research and public health endeavors that we urgently need right now and in the future.

While you may be aware that issues like medical insurance and healthcare coverage are being actively debated by the Congress,

There's also an issue of continuity of medical research, continuity of staff to keep that work going.

For Long COVID specifically, this means RECOVER RECOVER is the biggest project focused on Long COVID research. The US government has allocated over a billion dollars to this project, studying the causes, underlying mechanisms, and possible treatments for Long COVID. RECOVER is controversial. It's been a lot of money with not so many results yet.

Still, it's the biggest concerted effort we have and the best chance of finding effective treatments and a cure.

For now, it seems like RECOVER funding is safe. That's the good news. This is because most of this money has already been allocated, already been distributed, and because non-governmental agencies are also involved in keeping this research going. The most prominent is the foundation for the National Institutes of Health, the FNIH. The FNIH, unlike the NIH,

is a non-profit, non-government institution that partners with government agencies to make sure projects get done. In this case, it's played a huge role in determining what treatments are prioritized for study.

There is a catch, however. RECOVER funding is not part of the NIH's annual budget. The money has come from one-time allocations, and granted, those one-time allocations have been big, but the money's gonna run out at some point, and when that happens, the future is uncertain.

to learn more about this, I talked to Michael Sieverts. Michael is a retired government executive. He was the head of the budget office for the National Science Foundations. So he knows how to read a budget and explain a byline.

Michael is actively involved in long COVID advocacy, partnering with a patient led research

I met him through working with the Cure ID project run by the FDA. Michael explains how the RECOVER funding was allocated

and what happens when it's spent.

Michael Sieverts (03:53)
We really still don't know what the trajectory is for TLC. know, how many years are envisioned of it, how much money it has, what's its overall strategy.

None of that is ever visible to the community. I have great confidence in the people leading the effort, just not having any sense of.

how much money they have, what are they thinking about, how many trials can they afford, know, all those really fundamental questions we still have very little information about. And, you know, that's my single biggest concern is, yeah, I like the work they're doing. I wish I had a sense of what the longer term strategy is.

I don't know when they're going to get to this point, but at some point they're going to need more money. Up until now, all of the RECOVER funding has come from one time sources. There was a supplemental appropriation from Congress and then the second ⁓ set of second infusion of funds came from reprogram funds at HHS.

They've never submitted an annual budget request for RECOVER to Congress. And if that were to happen, if it were to become an ongoing part of the NIH budget and, and, you know, with annual requests, we would have a lot more transparency. The fact that they haven't needed an annual budget request until now has been good. You know, that's, that's a luxury for a federal program not to have to go to Congress every year and ask for money.

But they're getting to a point where I think that's going to become necessary.

Zeest Khan (05:40)
This is what makes RECOVER vulnerable. Without regular funding, we may have to depend on political will over scientific and medical necessity to determine whether or not long COVID research still has a future.

Zeest Khan (05:55)
In general, there is bipartisan support for long COVID research. Everyone's human. Everyone is vulnerable to this condition. when recover funding was first decided upon, there was a rallied effort from both sides of the aisle. Is that going to continue when the time comes for refunding? What is our social climate going to be? What are

our views about long COVID gonna be and our values in ⁓ committing to research for this condition.

Zeest Khan (06:26)
The funding decisions for scientific research, have to be long term. My concern is if these budgeting decisions are made on short term political gains, we're gonna be making the wrong decisions potentially.

Promising studies may be left incomplete.

So I participate as a patient advisor for the FDA's CURE ID project. I've talked about CURE ID. You can learn more about CURE ID and RECOVER on other episodes of this podcast. CURE is an amazing platform that helps track medications that can be used as treatments.

for off-label use. This might help us identify agents that already exist that are beneficial for people with long COVID.

We meet pretty regularly for the patient advisory committee and their most recent one was canceled. I got a ⁓ disappointing email response and auto reply from one of the staff saying that

because the government's budget isn't finalized, she can't work.

furloughed at home right now.

And CureID is not alone.

about 40 % of the Department of Health and Human Services staff is furloughed.

over 60 % of the staff at the CDC.

75 % of the NIH's staff is furloughed and close to 90 % of AHrQ staff is furloughed. And this is after AHrQ has already been cut dramatically in the first round of those DOGE cuts.

These are not just numbers, these represent people who actively are involved in making sure these studies get done,

who help design trials, and support patients.

With all of them gone, the system stalls.

and that potentially delays an already slow process.

In addition to that, these furloughs fracture the trust between government agencies, medical infrastructure, and the people it serves.

Americans are already distrustful of government agencies. ⁓ Having the Congress say it's okay for all of these people to be furloughed for an extended period of time only reduces their perceived value in the public.

we've already heard from the first round of Doge cuts the way that medical clinical trials were interrupted.

I really worry that long COVID might have the same future.

So I recognize that a federal bureaucracy can be redundant, it is slow, and it might benefit from some trimming. But haphazard cuts are just not it, especially when the stakes are so high. This is medical care, this is people's lives.

It seems like a lot of these cuts and threatened layoffs are random, they're haphazard. That's not a way to approach a really complex problem. But what might be even more worrying is that these cuts are fulfilling vendettas.

COVID and long COVID have always been political. Unfortunately, medicine and science has become hyper politicized too. I spoke with my buddy Ezra Spier about this. Ezra is a friend of the podcast. You can check out our episode on long COVID advocacy here on the channel.

He has paid very close attention to long COVID research, has participated in quite a few clinical trials, helps researchers even design or better design trials to make them ⁓ more accessible to long COVID patients. He had this to say about our current situation.

Ezra Spier (10:26)
I think we have to acknowledge, you know, this isn't a political show, but, you know, this is a government project and the United States government is not, not doing great right now. You know, I think that when you look at the administrative state, there's been a lot of constraints and a lot of challenges. The truth is we didn't know whether this funding was going to be, you know, part of the blanket rescissions that have been.

enacted, you know, whether legally or not. and so, you know, I imagine I put myself in the shoes of somebody working at NIAID on RECOVER TLC. They probably didn't know if they were still going to have a job.

there's a lot of politics very, very close to this program. And I think that's something that we need to be aware of because we can't escape that. That being said, a lot of the work of TLC has happened by external researchers and by the FNIH that aren't subject to those same restrictions. And it took us a year to get here and we still haven't launched a trial yet. And we don't even have a date when we really think any of these are going to launch.

And that is a huge problem because as you and I know, we are suffering now. We've been suffering for years. I'm about to hit my three year anniversary personally, and we are no closer to getting the answers that we really deserve. And we've been very patient, I think, as patients, right?

Zeest Khan (11:49)
So Ezra is right, there are a lot of politics really close at hand and one of the best or maybe worst examples is the firing of the head of NIAID, Dr. Jeanne Marrazoo

Dr. Marrazzo took over the National Institutes of Allergy and Infectious Disease in 2023, and she as the director of NIAID hosted the very first RECOVER TLC workshop. We just had the second TLC workshop hosted. you can catch my summary of all the highlights.

But she was very attentive during that workshop

she listened to all of this input from patients and caregivers about the direction of where RECOVER funds need to go, particularly for clinical trials. She was taking notes. She was engaging ⁓ with attendees.

And she even spoke about the importance of using innovative techniques, ⁓ collaborating with patients and being creative. That's how she and her colleagues were able to successfully approach HIV research in the 80s and 90s. And she said how that may very well be necessary as we study long COVID.

So a lot of us in the long COVID community were pretty happy to see that. Unfortunately, in March of this year, about a month after the new HHS secretary ⁓ took office, ⁓ she was put on permanent administrative leave and offered a job in a completely different department. In September, she was fired altogether. And since then, Dr. Marrazzo has filed.

whistleblower complaint against the Trump administration and against certain individuals at NIH claiming that she was fired for ⁓ inappropriate reasons. She was fired, she says, because she pushed back on the pressure to change vaccine policy based on ideology and not science, and she pushed back on the cancellation of research grants.

If Dr. Marrazzo's claims are true, this is really worrisome because it is demonstrating how the Department of Health and Human Services is not basing funding and leadership on ⁓ competency or on scientific need. Instead, they're finding yes men to follow their ideology.

and siphoning funds in ways that may not benefit the public and may not benefit us as people with long COVID. I want to bring attention again to the way that Tylenol and autism, this subject has been approached by RFK Jr. Again, I'll link another episode and a discussion that I had with a bioethicist about this Tylenol autism quote unquote link. ⁓

But what RFK demonstrated was that

We are investing real money into debunked claims. We are not focusing our efforts in places that are most likely to pay off. And this is what I worry about when the RECOVER funds need to be renewed and reallocated. Where is money going to go?

The answer to this question so far has been disappointing for a lot of people with long COVID, arguing that the funds are supporting research that is not gonna help any of us. we still don't have any effective agents that have come out of the RECOVER studies yet.

And time is ticking. Our lives are derailed by this condition. We need answers. At least we need some scientifically proven treatments that are likely to help reduce our symptoms. That's too much to ask.

What's going to happen if we make decisions about science, about health, about medicine based on ideology instead of following data?

Dr. Marrazzo may have learned that what happens is you lose your job. You try to get silenced.

I don't want the same outcome for long COVID.

Zeest Khan (16:21)
If you're finding this helpful or interesting, I'd love for you to join the Long COVID MD community over at Substack, where thousands of us are navigating Long COVID together. Subscribing to the newsletter is free and gets you every episode, plus a written summary and sometimes extra resources straight into your inbox. Long COVID MD is where I share deep dives into science,

give you an inside look into how healthcare really works, and offer you practical ways to make the most out of your medical visits. My goal here is to help you make informed decisions, whether that's at your doctor's office or at home. if you wanna help sustain this work, you can upgrade to a paid subscription or make a one-time donation. Your support really does help this platform keep going.

Zeest Khan (17:08)
There's a few other things I'd like you to keep in mind. One is AHRQ. AHRQ is the Agency for Healthcare Research and Quality. AHRQ doesn't do big fancy clinical trials. What they do instead is they focus on optimizing healthcare delivery, making sure that providers stay up.

to gold standards of care, make sure they have everything they need to adequately diagnose and treat their patients with whatever condition comes in the door. They have played a small but very important role in long COVID and have received funding from the RECOVER program.

be the way that we get more

primary care doctors to be able to identify, diagnose, and treat long COVID. It has already been, ⁓

so severely and I would love to see it get refunded and bolstered because we need more collaboration between patients and clinicians if you've learned anything from long COVID MD and me it's that.

Next is health insurance. That's kind of the elephant in the room right now. We're hearing a lot about it on the news as it relates to this shutdown. ⁓ Healthcare in the United States does not work well for physicians, for patients. It's very expensive and it's also inaccessible. Those of us with long COVID or if you are showing signs of it typically need a pretty

decent sized workup

Lots of tests,

ruling out some diseases and helping to rule in long COVID.

We already know that marginalized groups, ⁓ women, people of color, lower socioeconomic status, already are less likely to be believed for symptoms, less likely to access care. And if we make it even harder to access healthcare, I imagine we're only going to worsen this divide between

who is ill and who actually gets care.

I also want you to keep in mind that it is not likely that the free market is going to replace federal research.

at least when it comes to medicine. a lot of what is required before you identify a pharmaceutical agent that could be effective is foundational research. What is long COVID? Who has long COVID?

What are potential biomarkers that they have in common? What similarities do these groups have? What differences do they have? That kind of work requires a long-term investment, takes a long time, and is not profitable. Even beyond foundational research, before you get to a specific clinical trial,

you're probably gonna go through a bunch of other clinical trials in order to identify what is most promising. That is not profitable. And that is where the federal government and federal agencies can ⁓ share their resources, their brain power, and consistent funding as an investment into public health. And then the federal...

private collaborations, take it one step further and help us pass the finish line.

We need federally funded research

even if we have a robust pharmaceutical industry.

So it can be really easy to be disillusioned by all of the news.

But I think that RECOVER is worth saving and these research projects are worth continuing. originally for this episode, I wanted to talk about my experience working on RecoverTLC working groups. I sit on several.

and I even interviewed ⁓ one of the organizers of RecoverTLC Workshop, at the FNIH to talk about it.

RecoverTLC working groups are intended to prioritize agents for study. Which agents, treatments, or pharmaceuticals are most likely to be beneficial? Where do we want to invest our funds? These workshops are patient-scientist collaborations. I sit with people who have long COVID, people who have other complex illness.

⁓ researchers who are actively involved in projects, clinicians who see people with complex illness and have been treating people with long COVID, as well as highly educated and experienced administrators at the government level.

There are a lot of voices in the room, although there could be more.

There is still insufficient racial and socioeconomic diversity on these panels, but the diversity is still there. And this collaborative approach is, unfortunately, I had to have to say, still really innovative, even in 2025. bringing together all of these disparate voices is a real strength of RecoverTLC. And Emma Roy at the FNIH told me, this isn't a fluke.

this is part of the design.

The RECOVER TLC Working Groups, she says, brings together people with diverse perspectives, including persons with lived experience, clinicians, scientists, and subject matter experts, all with the common goal of bringing safe and effective treatment to people with long COVID. The participation of people with lived experience as full partners is a real strength.

Ezra pointed this out as something that was really important to him and that stood out at the conferences that he's attended. Michael did as well, talking about how helpful it is to use a collaborative approach to help design trials. He benefited significantly from a clinical trial that he participated in. And one of the reasons he was able ⁓ to participate is because

the way the trial was designed allowed him to get from point A to point B in a way that didn't wipe him out. These might sound like small things, but they are easily overlooked by people who don't have the condition. The only way it's often brought to researchers' attention is when they listen to patients and patient care partners.

And that's what's really special about RecoverTLC. It may have gotten off to a pretty bumpy start, but the intent is really there to make sure patient voices are heard. It may still look insufficient, ⁓ and I've heard that from patients and patient advocates, but from my perspective, I haven't seen this much patient involvement in any scientific conference I have ever attended.

For that alone, I think it's worth saving.

More than anything, however, I don't think this is about protecting, just RECOVER. I think this is a moment where we need to decide how we're going to approach science, how we're going to guide our nation's health.

Are we gonna be led by evidence? Are we gonna be led by politics? This is where the cracks lie. This could threaten the success of the RECIVER project.

I want to end on a positive note. ⁓ I don't know how to do that, to be quite honest. I've felt really discouraged and more distant from the political process recently than ever before.

I don't know how much I can do, but one of the things I can do is to be here and sit with you and share my thoughts. We're going to get back to episodes explaining a bunch more treatments that could be options for you to talk to your doctor about.

And I will keep you posted of any scientific discoveries that I think are meaningful here on the podcast as well.

but

There are a lot of factors at play right now. My hope is that you have a little bit more insight to what those factors are. You have a limited bandwidth. You don't need to know ⁓ every single research paper that is published and it probably is not good for your mental health to track every single political development or headline.

this is the big picture. And I think it is nice to understand a little bit of the big picture as it pertains to the most influential aspects of your life, which unfortunately illness really is. It takes top billing.

Subscribe so you don't miss the next episode. We're going to be talking about treatments. We're going to be talking about the lived experience of long COVID. We are always here to collaborate. Reach out to me if you have any questions and let me know what you're thinking and feeling during this tumultuous time. Until then, bye for now.