Federal Rollbacks Leave Long COVID Patients Without Adequate Research Funding or Support

Long COVID patients across the United States continue to face significant health challenges even as federal research funding and coordinated support programs have been dramatically scaled back under the current administration. The chronic, multisystem condition persists for millions of people who contracted SARS-CoV-2, yet the infrastructure designed to study and treat them has been largely dismantled.

Long COVID is a chronic condition that persists following infection with SARS-CoV-2, the virus that causes COVID-19. It can arise regardless of the severity of the initial illness, and symptoms may persist or emerge weeks to months following the acute phase. Symptoms include difficulty thinking or remembering, post-exertional malaise, shortness of breath, joint pain, chest pain, lingering cough, changes in or loss of taste and/or smell, and extreme fatigue. Surveys suggest that as many as a third of those who have survived COVID-19 have experienced Long COVID symptoms. Researchers have drawn parallels between Long COVID's impact and that of a stroke or Parkinson's, and some studies suggest that Long COVID can lead to quality-of-life reductions comparable to those associated with advanced cancers.

In September 2025, the Office of Long COVID Research and Practice was closed without a meaningful replacement. HHS replaced it with what advocates describe as little more than a web page, a far cry from the coordinated infrastructure that patients need. The administration is also seeking to eliminate the National Center for Chronic Disease Prevention and Health Promotion, after Congress prevented it from doing so in FY2026.

NIH funding cuts derailed or stalled Long COVID research and trials. While some specific grants have been partially restored, the broader Long COVID infrastructure has not been rebuilt. The current five-year funding stream is smaller than the original investment that launched the program. Abrupt cancellations, even when funding is ultimately restored, create uncertainty for investigators and patients, delay or threaten studies already underway, undermine trust in federally funded clinical research, and jeopardize the professional pipeline for new research talent.

The administration has also proposed further cuts to wastewater-based disease surveillance, one of the only remaining ways to track COVID-19 case volume throughout the US. Stringent new work requirements, enacted in the One Big Beautiful Bill Act of 2025, threaten to cut off people with Long COVID from Medicaid. Working-age adults with disabilities are more likely to rely on public health insurance such as Medicaid, and Long COVID patients in particular may struggle to assemble the documentation required to qualify for an exemption from work requirements, especially given how difficult it can be to obtain a diagnosis.

The human toll of these policy changes is stark. One 34-year-old patient who contracted Long COVID in April 2022 describes being forced to move back in with her parents, retire from her career as a literary agent and lecturer, and cash out her retirement savings to cover medical expenses. She wakes every day so nauseated that the smell of food can make her vomit, requires 10 to 12 hours of sleep to function, and when she pushes herself to socialize, fatigue produces flu-like symptoms. On land she is often confined to a wheelchair or walker, and she makes a four-hour monthly drive to a rehabilitation clinic for care. Federal research funding rollbacks have complicated care for patients like her.

There are more than 200 possible Long COVID symptoms, and treating one often means off-balancing another, making the condition exceptionally difficult to manage. Dr. Lisa Sanders, medical director of Yale's long COVID multidisciplinary care center, says the medical field is increasingly able to recognize and begin treating symptoms through a trial-and-error process involving multiple specialists. However, for some patients Long COVID does not resolve — it hardens. There is a serious degree of deconditioning that comes with the condition, and some patients are left with ME/CFS, a debilitating variation of chronic fatigue syndrome.

Dr. Michael Osterholm, director of the University of Minnesota's center for infectious disease research and policy, highlights the difficulty in collecting research on a disease that is so societally charged. Rates of infection are decreasing, primarily due to the effectiveness of vaccination, but Osterholm questions how much of the apparent decline in Long COVID reflects genuine recovery versus people stopping talking about it or failing to recognize their symptoms. When resources are stripped back from studying a disease, he notes, it reinforces the idea that the disease is mild enough to be ignored, making it even more likely that people will doubt what their body is telling them.