It’s “business as usual” for the flagship Long COVID research program despite disruptions across the federal government over the last two weeks, but concerns abound about future clinical trials and other upcoming research.
Listen to Betsy discuss this reporting on our podcast (timestamp: 22:03):
Key points you should know:
- RECOVER, the U.S. government’s flagship Long COVID research program, is continuing work largely as usual despite freezes and interruptions across federal health agencies since President Trump took office.
- Work such as internal meetings and clinical trials has continued in part because RECOVER operates separately from typical NIH research and grant processes.
- However, sources who spoke to The Sick Times expressed concern about potential limitations to new clinical trials, such as a lack of additional funding and constraints on health equity initiatives.
- Robert F. Kennedy Jr., Trump’s nominee to lead the federal health department (which oversees the NIH), pledged to support Long COVID research if confirmed. Some advocates are skeptical due to his record of anti-science views and campaign promises.
As scientists across the country face confusion and uncertainty following drastic changes at the National Institutes of Health (NIH) under President Donald Trump, the agency’s flagship Long COVID research program is continuing its existing work as usual. But future studies could be delayed or interrupted and prospects for additional funding are unclear under Trump’s leadership.
NIH RECOVER’s internal meetings, clinical trials, and other work have continued without interruption since freezes on federal communications and grants were announced last week, sources with knowledge of the program told The Sick Times. However, sources expressed concern about potential delays to clinical trials, as well as disruptions from the Trump administration’s attacks on health equity-related work.
Since November, Long COVID researchers and advocates have worried about funding constraints under Trump. Some took a promising signal from this week’s Senate confirmation hearings for Robert F. Kennedy Jr., Trump’s nominee to lead the Department of Health and Human Services (HHS): RFK Jr. pledged to prioritize Long COVID research if confirmed. However, others are skeptical that RFK Jr. would follow through on the statement, given his history of anti-science views and promises he made while campaigning.
For now, RECOVER has been largely uninterrupted by freezes to federal grants and communications at health agencies, sources told The Sick Times. Trump’s order freezing federal grants was rescinded on Wednesday, but barriers to public communications, travel, and other aspects of government-funded research remain in place.
Several people who serve on committees within RECOVER said that meetings were continuing on schedule and work to prepare upcoming scientific publications was ongoing. RECOVER’s clinical trials similarly have not been impacted, multiple sources said. (Most sources for this story requested anonymity due to their positions in the program.)
New working groups under RECOVER-Treating Long COVID, the program’s initiative focused on novel clinical trials, are also going ahead. These groups, which started meetings in December and January, have been tasked with prioritizing potential treatments for trials. During a webinar on January 10, representatives from RECOVER-TLC said that updates from the meetings would be posted to the Foundation for the National Institutes of Health (FNIH) website; as of January 31, this page was last updated in mid-December.
NIH and FNIH representatives have not responded to questions from The Sick Times about whether RECOVER-TLC’s work will proceed on schedule or about other potential interruptions to the program.
In addition, RECOVER hosted a public webinar on Tuesday as part of its Research Review series, featuring scientists and patient representatives from the program. When a webinar attendee asked if the panelists could share how RECOVER was impacted by the freezes, a program staff person responded, “At this time, we do not have an update.”
The program has been able to continue work because RECOVER operates separately from typical NIH research and grant processes, sources told The Sick Times. The NIH provided RECOVER’s funding through a process called “Other Transactions Authority,” which the agency uses for unique programs that require more flexibility. In addition, much of RECOVER’s operations are run by outside contractors (primarily from New York University and Research Triangle International) rather than by NIH staff.
RECOVER is working in “endurance mode,” said one source familiar with the program’s operations. “We cannot take on new weight, but we are able to keep carrying forward the work we have already set in motion for years if we budget correctly and strictly.”
New clinical trials “may be able to take place” but could be limited in scope, the source added. Some of the potential RECOVER-TLC trials are further along in the planning process than others; those may be easier for staff and researchers working with the program to move forward, while others that require new grants and contracts could be more difficult.
The NIH allocated $662 million to RECOVER last year, adding to the $1.15 billion bucket initially provided by Congress in 2021. In December, the agency announced that $300 million of those new funds would go to new clinical trials through RECOVER-TLC, and the remainder would go to pathobiology research, continued observational studies, and maintaining the program’s research infrastructure.
Could the Trump administration take back that funding, or give it to other projects? “That is technically possible, but I think unlikely,” Michael Sieverts, policy advisor for the Patient-Led Research Collaborative*, wrote in an email to The Sick Times. “Unlikely” due to RFK Jr.’s comments during the Senate confirmation hearing, which Sieverts called “very, very encouraging.”
During the Wednesday hearing, Sen. Todd Young (R-Ind.) asked the nominee if he would ensure RECOVER focused on testing treatments and other novel research, citing past criticism of the initiative’s slow progress and emphasis on observational studies.
“Absolutely, with enthusiasm,” RFK Jr. responded. If confirmed, RFK Jr. would lead the agency that oversees the NIH.
Some Long COVID advocates, like Sieverts, have taken this exchange as a promising sign for future Long COVID funding under Trump. “The Long COVID Campaign applauds Mr. Kennedy’s strong support today for continued Long COVID funding, accelerated research, and interventional trials,” said the advocacy group’s executive director, Meighan Stone, in a statement. “Should Mr. Kennedy be confirmed, chronically ill and disabled Americans are ready to meet with the new administration.”
But others are skeptical that RFK Jr. would follow through on his statement at the hearing, given his history of anti-science views including HIV/AIDS denialism, COVID-19 conspiracy theories, and false claims about vaccines. He also promised to cut funding for infectious disease research during his presidential campaign in 2023.
“Putting [RFK Jr.] in charge of the Long COVID response would be a catastrophe for us,” wrote advocate C.H. Romatowski in a post on Bluesky.
Within RECOVER, patient representatives are also concerned about potential disruption to trial recruitment from the Trump administration’s attacks on anything related to diversity, equity, and inclusion. RECOVER studies so far have made it a priority to recruit diverse groups of patients, and advocates have called for future clinical trials to expand this effort along more axes, such as by including people with more severe symptoms who cannot travel to study sites.
While advocacy groups have not yet put out specific calls to action around RECOVER, those involved with the program said that people with Long COVID and their allies can help keep public attention on federal research infrastructure at this time when so many studies, from reports about bird flu to NIH-run clinical trials, are under threat. “Ask your representatives to fight for our entire national health research system!” one source said.
The Sick Times will continue following RECOVER and other Long COVID-related news from the Trump administration. To contact Betsy Ladyzhets: email betsy@thesicktimes.org, Signal @betsyladyzhets.25.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
*Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.
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