On March 24, the Trump Administration closed the long-COVID office within the US Department of Health and Human Services as part of what it claimed to be the department’s reorganization. A few days later, the National Institutes of Health (NIH) went even further, terminating up to 45 grants that the Researching COVID to Enhance Recovery (RECOVER) initiative had awarded in recent years, but after pushback and protest, NIH reinstated the grants just a few days later.
The cuts, closures, and chaos have left researchers and patient advocates uncertain and fearful about what lies ahead for the federal initiative set forth to treat a chronic condition that affects as many as 7% of US adults.
“Millions of Americans are suffering, and they are depending on us for new treatments and care,” said Grace McComsey, MD, who leads one of the 15 nationwide long-COVID centers funded by the federal RECOVER Initiative in Cleveland.
Public health specialists and doctors who treat patients with the condition say many steps need to be taken in the year ahead to steer RECOVER back on course. These include upping clinical trials and increasing transparency — in order to make greater gains for patients, some of whom have been suffering from long COVID since 2020.
Researchers and public health experts say the program has made some significant gains in the past year, delivering on several key goals of the effort. But many other aims — notably the lack of standard diagnostic tests and treatments for long COVID — have remained elusive.
But the proposed Trump Administration cuts to the program and the closure of the NIH office could imperil those efforts and halt the RECOVER initiative in its tracks.
Here’s a look at some of the progress the program has made in the past year and the key challenges ahead.
Progress on the Promise of RECOVER-Treating Long COVID (RECOVER-TLC)
Last year, NIH reorganized the RECOVER program into RECOVER-TLC, led by the National Institute of Allergy and Infectious Disease, with the goal of looking into new therapeutics, medications, and overall ideas for the treatment of the condition.
In September, RECOVER-TLC hosted a kickoff meeting at NIH headquarters in Bethesda, Maryland, inviting researchers, stakeholders, and patient advocates from around the country. Ziyad Al-Aly, MD, senior clinical epidemiologist at Washington University in St. Louis, St. Louis, who addressed the attendees, left the summit feeling positive for the future.
“RECOVER-TLC assuaged some of my concerns, and I left the meeting feeling like leadership really wanted to move toward trials, which are crucial to helping our patients,” said Al-Aly.
But with the election in November, things feel like they’re frozen in time, he said. The next meeting, which was set for February, was cancelled, and researchers were left wondering what will happen next.
Wider Recognition Among Physicians
Improved coordination among long-COVID researchers and clinicians through RECOVER has helped both patients and physicians to embrace a newfound understanding of the condition.
Today, more physicians are aware of long COVID and are interested in learning about effective treatments to help their patients compared with past years, said Nisha Viswanathan, MD, director of the UCLA Health Long COVID Program. It’s much less likely that patients won’t be believed they have long COVID because many more physicians are on board with the seriousness of this condition.
“I remember when I would speak at long-COVID meetings a few years ago and only a few physicians would show up,” said Viswanathan. “This week I’ll be speaking about long COVID in front of 800 people.”
Viswanathan adds that it used to be that patients would ask to be referred to their long-COVID clinic, and now it’s the other way around.
“Doctors are more often doing the referring,” she said. Physicians now know more about treatments and treatment facilities.
Treating the Whole Condition
RECOVER has also made progress in funding research to help uncover the causes of long COVID, particularly with an improved understanding of viral reservoirs, fragments of the virus that remain in the blood, tissue, and organs of the body, causing a heightened immune response.
This proves to be a promising finding that could lead to better treatments for the condition, experts said.
“NIH is finally recognizing that viral reservoirs are real and cause symptoms,” said David Putrino, PhD, the Nash Family Director of the Cohen Center for Recovery from Complex Chronic Illness at Mount Sinai in New York City and a renowned expert in long COVID.
Data from RECOVER found that people with long COVID were more than twice as likely to have viral remnants in their blood, said McComsey.
This improved understanding of viral reservoirs points to a reason why treatments like antivirals or monoclonal antibodies, both of which target the remaining virus, are effective for relieving long-COVID symptoms. The hope is that physicians will be able to pinpoint where viral reservoirs exist in the body so they can isolate and treat them.
Researchers also want to know the impacts of targeting viral reservoirs because once they’re treated, it isn’t clear if this will actually improve symptoms.
“If the viral remnants are gone, do symptoms vanish? We just don’t know yet,” said McComsey.
But most importantly, progress is being made to move beyond symptom management to finding a treatment for at least some portion of long-COVID patients. This is a win for patients because one of the goals put forth last year for the improvement of RECOVER was treating the condition and moving away from managing individual symptoms, experts said.
More Transparency, Coordination Needed
While RECOVER-TLC brought long-COVID stakeholders together, which was a vast improvement in the past year, there are some other places where coordination is still an issue if researchers want to rapidly move toward effective treatments.
“Transparency is still a problem, especially when it comes to accessing data that’s already been collected,” said Putrino.
Researchers need to be able to access the databases of long-COVID findings while working on their own research, whether that data have been published. While there’s a concern around researchers getting credit for the work they’ve done, for those on the front lines of studying treatments, time is the top priority, not recognition.
Putrino adds that to really solve the problem, an “all-hands-on-deck” approach is necessary, with researchers working together to find effective therapies and medications.
Not Enough Clinical Trials
Another area where NIH needs to focus its energy: More effective clinical trials of new treatments. This was a criticism of the program last year, and the hope is that with RECOVER-TLC, more clinical trials will make progress on new treatments. There’s currently not an approved medication for long COVID, and most treatments revolve around symptom management.
Researchers have so many ideas about what might be effective, but they need the clinical trials to show what does work and for which patients, said Charlie McCone, 35, a long-COVID advocate from San Francisco who’s pushing for more clinical trials. McCone is a former marketing executive who lost his job due to long COVID in 2022.
“We have so many leads, and we need to be chasing them down,” said McCone. He added that we need to be looking into some of the potential treatments that have shown promise in case studies and smaller trials like monoclonal antibodies, antivirals, naltrexone, and many others.
Smaller studies have shown remission of long-COVID symptoms in patients who took monoclonal antibodies. Mixed results have been found for antivirals like Paxlovid, which researchers found ineffective for shorter periods of use but effective when it was used for longer periods in some patients. One study also suggested that naltrexone, which is used to treat patients with chronic fatigue syndrome, could be adapted to treat those with long COVID.
In the end, while progress is certainly being made, researchers are hoping for more clinical trials and more transparency.
Still, it’s difficult to know what will happen next because there’s currently not a confirmed NIH director and no signal from the Trump Administration about what will happen next, experts say.
“There was a promise that we would focus on chronic diseases, and long COVID is a chronic disease with more than a million people disabled as a result of it,” said McComsey.
