Closing the Long COVID Office

Susan Estrich on Mar 27, 2025

The news came via email, without further explanation, from Ian Simon, the head of the Office of Long COVID Research and Practice. The email, obtained by Politico, says this:

"We are writing to let you know that the Office of Long COVID Research and Practice will be closing as part of the administration's reorganization coming this week. We are proud of what we have accomplished together advancing understanding, resources, and support for people living with Long COVID."

You might take this as a sign that the nightmare is over -- and as a mother of a daughter with long COVID, I can assure you it is a nightmare -- or that a cure had been found, but you would be wrong. The problem is huge and growing.

The Centers for Disease Control and Prevention estimates that some 6% of American adults have long COVID; the National Institutes of Health puts the number at 23 million Americans. And the number continues to rise: If you get COVID, there is approximately an 8-10% chance that you won't get better any time soon, or ever.

The Office of Long COVID Research and Practice was established as part of the Office of the Assistant Secretary for Health in 2023 to coordinate a government-wide long COVID strategy. Who will do that now?

The email left the state of research unclear and totally undermined the work the office was doing in coordinating federal efforts. NIH is supposedly funding more than $1 billion in clinical trials, the fates of which are now uncertain.

"We did the not-sexy, behind-the-scenes work that it takes to make the federal government function well," a staffer told Politico. "We made sure doctors at the VA are talking to scientists and researchers and epidemiologists at CDC and NIH -- that they're learning from each other. It was a very, very cost effective way to make sure that people are talking to each other and that we're making the best use of federal resources."

Such coordination is key to faster cures and better treatment.

Robert F. Kennedy Jr., in his confirmation hearings, promised to focus his efforts on dealing with chronic illness. He lied. His actions this week will leave this nation's health care system caring for tens of millions of chronically ill people for years if not decades.

As one sufferer who has been part of multiple clinical trials told Politico: "At his confirmation hearing, Secretary Kennedy made a commitment that HHS (the Department of Health and Human Services) would continue investing in Long COVID research -- shutting down this office is not the way to do that. Like me, at least 20 million Americans have Long Covid. There are no FDA-approved treatments or tests, and most physicians are not comfortable diagnosing Long Covid, let alone providing care."

Last month, the Trump administration directed HHS to terminate the federal Secretary's Advisory Committee on Long COVID. Now, they are closing the office. Is this how you prioritize treating an illness that leaves millions housebound, unable to work? Explain to me how this saves federal resources. Why did HHS refuse to make any comment at all?

Sen. Tim Kaine (D-Va.) has long COVID. He had the same reaction as I did to the news. "The decision to abandon Long COVID efforts that support and improve care for the millions of Americans suffering from this condition is unacceptable," Kaine said. "And for what -- to cut costs to pay for enormous tax breaks for the rich?"

"While our office is closing, we hope that the work we have been dedicated to will continue in some form," the email from Ian Simon reads.

"Hope" is not enough. My daughter's life depends on this. I don't trust this administration, and closing this office is one more reason why. I wouldn't wish this disease on anyone, but maybe we need a Republican senator or a member of the Trump inner circle to get it to force them to take it seriously, because they clearly don't. In the meantime, Congress needs to act.

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