HHS’s Long COVID Office Is Closing. What Will This Mean for Future Research and Treatments?
The Office for Long COVID Research and Practice was instrumental in coordinating the U.S. government’s initiatives to treat, diagnose and prevent the mysterious postviral condition that affects millions of people today
Under orders from the Trump administration, the U.S. Department of Health and Human Services is planning to close its Office for Long COVID Research and Practice (OLC). This governmental office orchestrates efforts across health agencies to understand and treat long COVID, a mysterious postviral condition that affects an estimated 23 million people in the U.S. today. The closure is another casualty of the administration’s reorganization of various governmental departments, according to an internal e-mail from the OLC’s director Ian Simon.
“Over the last 3+ years, we have built meaningful connections and fruitful collaborations across the federal landscape to support this work,” Simon wrote. “While our office is closing, we hope that the work we have been dedicated to will continue in some form.”
The closure sends a harrowing message to the many adults and children who are still navigating the complex condition, says Ziyad Al-Aly, a leader in long COVID research and a clinical epidemiologist.
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“People have been scarred by this pandemic in the form of long COVID, and their disease is real and requires help,” Al-Aly says. “The intent of the office was to really catalyze progress and realize efficiencies. Undoing it risks undoing a lot of the work, delaying a lot of progress, and [it] really is a disservice today to the more than 20 million Americans who are suffering from long COVID.”
What Did the Long COVID Office Do?
Various health agencies, including the National Institutes of Health, the Centers for Disease Control and Prevention and the Agency for Healthcare and Research Quality (AHRQ), had begun early research on long COVID in 2020. The OLC was created in 2023 to serve as a “quarterback,” Al-Aly says, helping those agencies coordinate and efficiently run various long COVID initiatives. These have included the CDC’s program to train clinicians in timely diagnosis, prevention, and treatment and AHRQ’s Long COVID Care Network (an initiative to provide funding and support to several existing long COVID clinics across the U.S.). The networks’ clinics have focused particularly on expanding care to underserved, rural, vulnerable and marginalized communities. The OLC supported other programs that addressed stigma and health disparities associated with long COVID, such as by creating standards for research studies to include racial and ethnic groups that have been disproportionately affected by the condition.
What Does the Closure Mean for Affected People and Research?
The World Health Organization estimates six in 100 people infected with the COVID-causing virus SARS-CoV-2 will develop long COVID, which includes a sweep of mild to devastating symptoms that can persist for months or years. The causes, the puzzling range in severity, and future treatments and cures have been prime areas of interest for the OLC.
Long COVID has proved to be a complex condition, and while some treatments may help alleviate symptoms, there isn’t a cure. But Al-Aly says much progress has been made, and he notes that the office has supported hundreds of long COVID studies.
While people currently under treatment for long COVID might not see immediate consequences, the OLC’s closure will have a “chilling effect,” Al-Aly says. Groups that advocate for people with long COVID, such as the COVID-19 Longhauler Advocacy Project, have echoed this sentiment, expressing concerns about future investment and care for an overlooked condition.
“This isn’t just about an office being closed. It’s about the erasure of tens of millions of people,” the founder of the Longhauler Advocacy Project wrote in a recent statement. “The Office was our strongest ally. The team was deeply empathetic, mission-driven, and understood the urgency of the crisis we are living through. It was the first and only government entity with the ability to unify all HHS agencies—to ensure efforts weren’t duplicated or contradictory, to establish true coordination, and to finally treat Long COVID like the systemic, multisector challenge it is. For the first time, we had many efforts underway and ready to launch, and the infrastructure to act as one country. That’s all gone now.”
Other Initiatives under Threat
The shuttering of the OLC coincides with other recent moves to deprioritize research efforts related to COVID and pandemic preparedness.
On Tuesday Science reported that it had learned that several principal investigators of research projects on antiviral drugs, COVID vaccines and long COVID received letters that their grant funding was effectively terminated. In a statement to Science, HHS wrote that the agency “will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago.”
“It’s kind of like saying, ‘You’ve been through an earthquake, but the earthquake is over,’” Al-Aly says. “So don’t complain to me that the building is destroyed. Don’t complain to me that you’re injured. I’m not seeing the earth shaking. It’s over.’ This is how this feels to us—the people who are working and thinking about long COVID and patients with long COVID.”
Additionally, a former AHRQ employee recently told STAT that grant funding that supports the Long COVID Care Network may also be in jeopardy because the Trump administration has targeted the agency and reduced its staffing.
If the OLC’s closure was also intended to be a cost-saving move, it should be considered that the funding to run the office is “peanuts” amid the government budget, Al-Aly adds. And it doesn’t compare to the costs of long COVID to the U.S. economy: a 2022 preprint analysis by a Harvard University economist estimated those costs to be $3.7 trillion.
Betsy Ladyzhets, a long COVID reporter and co-founder of the long COVID news website the Sick Times, reported that during the government information purge conducted in the wake of executive orders issued by President Donald Trump, a federal website for the U.S. Department of Labor’s Job Accommodation Network took down long COVID’s status as a disability—along with resources and accommodation information.
The unwinding of long COVID initiatives and information is particularly confounding, given new Secretary of Health and Human Services Robert F. Kennedy, Jr.’s platform to tackle chronic illness in the U.S. During his confirmation hearings, Kennedy avidly pledged to invest in long COVID research and the development of new treatments.
“I understand there is this enthusiasm to support chronic disease. Well, long COVID is the exemplar of chronic disease,” Al-Aly says. “I would like to remind RFK, Jr. that he told the nation in his confirmation hearing that he’s going to prioritize research on long COVID…. The actions over the past several days don’t really align with that, to be honest. You said you want to prioritize long COVID, you said you want to help with chronic disease and ‘Make America Healthy Again,’ and that’s not what we’re seeing now.”
