Episode 57 of Long Covid, MD podcast. Press “play” to listen:
As an American doctor living with long COVID, the federal government’s shutdown worries me deeply. Thousands of staff at the NIH, CDC, NIAID, and FDA are furloughed, and many may be fired. These are the very agencies at the heart of medical research and clinical care. When politics destabilize science, patients pay the price. For people with long COVID, the federal shutdown threatens not just jobs but the very foundation of research and our hope for a cure.
Big Science Needs Steady Funding
RECOVER is the largest coordinated research effort on long COVID, with over one billion dollars allocated so far.
RECOVER funds are likely safe…for now. This is because most of the funds have already been allocated, and non-government agencies like Foundation for National Institutes of Health (FNIH) manage many of the projects. But there’s a catch: this funding has come from one-time congressional appropriations, not from an ongoing NIH budget line.
I spoke with Michael Sieverts about this recently. Michael is a retired federal budget director. He is part of the team at Patient-Led Research Collaborative, and we both sit on the patient advisory committee for FDA’s CURE-ID platform.
He put it plainly: when RECOVER money runs out, there is no guarantee of more.
“Up until now, all of the RECOVER funding has come from one-time sources,” Michael told me. “There was a supplemental appropriation from Congress, and then the second infusion came from reprogram funds at HHS.”
“The fact that they haven’t needed an annual budget request until now has been good,” he elaborated, “[It’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.”
Michael Sieverts
This is where RECOVER is vulnerable. The NIH has not yet requested that RECOVER become part its recurring budget, which means at some point NIH and Congressional leaders will have to decide if long COVID is important enough to continue funding. Hopefully they will base their decision on the scientific and medical need for a long-term investment. If funding decisions are instead based on short-term politics, a long-term investment becomes less certain, and promising studies may be left incomplete.
Are Cuts Based on Logic or Revenge?
Auto-reply message from CURE-ID staff email
The federal shutdown has a political toll, but also a personal one. Most staff at CURE-ID are currently furloughed, and our patient engagement meetings are cancelled until further notice. CURE-ID isn’t the only department affected.
Right now, it’s estimated:
40% of HHS staff are furloughed.
75% of NIH staff are furloughed.
64% of CDC staff are furloughed.
90% of AHRQ staff are furloughed (this, after already being nearly incapacitated by the first round of layoffs earlier this year)
These aren’t just numbers. They represent the people who process grants, design trials, and support patients. With them gone, the system stalls, potentially delaying an already slow process. For patients who have been sick for years, the thought of further delays is unbearable.
Furloughs fracture trust between science and the people it serves. While federal agencies may benefit from streamlining—there are certainly redundancies within bureaucracies—the stakes are too high to make staffing cuts haphazardly. By indiscriminately reducing staff, we risk interrupting medical care—from people actively involved in clinical trials to patients awaiting federal approval of treatments. It leaves patients waiting in the dark.
Amid The Upheaval, Some Scientists Are Pushing Back
A scary possibility is that these cuts are not actually being made randomly, but as a form of payback.
I spoke with Ezra Spier about this. Ezra is a patient advocate who collaborates with researchers to optimize study design. Like me, he’s concerned about how shutdown and cuts will impact long COVID research.
“The truth is we didn’t know whether [RECOVER] funding was going to be part of the blanket rescissions that have been enacted,” Ezra told me, “I put myself in the shoes of somebody working at NIAID or 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,” he continued, “And I think that’s something that [patients] need to be aware of because we can’t escape that.”
Ezra Spier
Ezra’s right. Leadership changes at NIAID, for instance, have been tumultuous and possibly politically motivated. Dr Jeanne Marrazzo became the Director of NIAID in 2023 and hosted the first RECOVER-TLC Workshop last year. She was attentive throughout the meeting and seemed very supportive of patients’ involvement in long COVID research. During the workshop, she proposed that long COVID be approached with the same urgency and innovation she and her colleagues used to investigate HIV in the 1980 and 1990s.
In March, about a month after RFK Jr was sworn in as Secretary of HHS, Dr Marrazzo was placed on indefinite administrative leave. In September, she was fired.
What happened to Dr. Marrazzo is a warning about what happens when political loyalty replaces scientific integrity. RFK Jr has said long COVID research is a priority for him, but I don’t know if this will translate into effective research or medical care. Science thrives on evidence, not ideology, and the there is evidence that the HHS Secretary approaches his position ideologically. We’ve heard his diatribes against established science in Senate hearings, supporting cuts to healthcare and railing against medical professionals. Recently, he’s also channelled federal funds in questionable ways, like supporting studies on already-debunked claims about Tylenol. All this leave me very concerned about what he and his allies might support as times—and whims—change.
Now, more than ever, science depends on those willing to resist political interference, as it seems Dr Marrazzo has. If we let political pressure dictate the direction of science, we may lose any progress we’ve made. At this point in the long COVID timeline, without any reliable biomarkers or treatments, we can’t afford to lose anything.
Read more about the connection between COVID and Tylenol here:
Beyond the research labs, the shutdown’s effects reach directly into our hospitals and homes.
AHRQ has been gutted
The Agency for Healthcare Research and Quality plays a critical role in shaping how doctors practice medicine. It develops clinical guidelines and helps providers adopt best practices. For long COVID, AHRQ could be key in making sure frontline clinicians are able to identify, diagnose, and treat patients effectively.
My family already spends $$$ on our health insurance premiums and deductibles. You probably do, too. If ACA subsidies are revoked (with no proposed alternative), medical insurance may become even more costly. Since long COVID often requires extensive and expensive workups, people may be further disincentivized to seek care.
We already know marginalized groups (race, gender, wealth) are less likely to be believed, diagnosed, and treated. Limiting access to healthcare will inevitably widen that disparity.
The free market will not replace federally-funded research
Foundational research is costly, complex, and not profitable. Long COVID requires long-term, large-scale studies. This kind of work doesn’t attract private investment. Pharmaceutical companies are not likely to pick up the basic research that may be abandoned due to rescissions.
When the infrastructure of healthcare collapses, individual resilience isn’t enough. Systems matter.
RECOVER is Worth Protecting
After so much loss and uncertainty, it’s easy to feel disillusioned. But RECOVER shows what’s possible when science follows data and values patients. My original intention for this post was to share what it’s like to work on a RECOVER-TLC working group, as I have participated in several. RECOVER isn’t perfect, but the program is worth protecting.
The strongest aspect of RECOVER-TLC is that the working groups are a patient-scientist partnership. This is not a fluke.
As Emma Roy, Associate Project Manager with the FNIH, and an organizer of this year’s TLC Workshop explained to me:
“The RECOVER-TLC working groups bring 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 treatments to people with long COVID. The participation of people with lived experience as full partners is a real strength.”
Ezra Spier also spoke to how this diversity is meaningful — it changes the way discussions happen, and which treatments are prioritized. Michael Sieverts reminds us that trials can work. His own long COVID symptoms improved during a clinical trial, and he wants to see the study expanded and published. It’s proof that the effort can pay off.
RECOVER has room to improve. The working groups still need much more racial and socioeconomic diversity. But bringing together patients, clinicians, and scientists as equals is still an innovative approach, even in 2025.
Protecting RECOVER isn’t just about one program—it’s about protecting the idea that evidence, not politics, should guide our nation’s health.
Where We Go From Here
Science must not become collateral damage in political battles.
If I’m honest, I feel more disconnected from the political process than ever. But that sense of disempowerment also motivates me to learn, staying informed, and share what I know with you. We can’t control Congress, I tell myself, but we can maintain our commitment to truth.
That’s why I keep producing this podcast and writing here. Because even in uncertain times, both medical research and our own lived experience matter. We must do our best to protect them.
Please support my efforts, if you’re able, by upgrading to a paid subscription or donating at Buy Me A Coffee.
buymeacoffee.com/longcovidmd
Thanks to:
Ezra Spier, Michael Sieverts, and Emma Roy for sharing your voices and insights.
The CURE-ID team, many of whom are home right now and unable to work.
Motivational Reading:
This spotlight on the FDA’s Heather Stone, written by best-selling author Michael Lewis will leave you pumping your fist in the air, crying, or both. Heather one of the brains behind CURE-ID and by all measures, the heart. Lewis’ piece really captures the strength, courage, and broad impact of government service.
Let’s hope the shutdown resolves soon and that the layoffs are minimal. In the meantime, I’ll keep using the resources at hand, and I’ll keep sharing them with you.
Because long COVID research is too important to lose.
Thanks for this in-depth write up on this, well done. (And I am right there with you in deep concern about this!)
I wouldn't Trust any of those Orginizations. Billions were already Thrown away supposedly for Our Cause