Autoimmune Disease Research at Risk Amid Federal Cuts
Updated March 28, 2025
Following public outcry and advocacy efforts, the NIH has reversed its decision to cancel up to 45 RECOVER research grants focused on Long COVID. These grants, originally rescinded earlier in the week, included critical studies on pediatric Long COVID, post-exertional malaise, vascular dysfunction, persistent viral reservoirs, and the link between SARS-CoV-2 and diabetes.
Patient advocates, including RECOVER representatives, confirmed the reinstatement. Researchers noted that some studies were nearing completion and that this restoration prevents years of work from being lost. The move is seen as a rare win for the chronic illness community amid broader federal cuts, including the expected closure of the Office of Long COVID Research and Practice.
We’ve preserved the original update below for full context.
Updated March 28, 2025
Following public outcry and advocacy efforts, the NIH has reversed its decision to cancel up to 45 RECOVER research grants focused on Long COVID. These grants, originally rescinded earlier in the week, included critical studies on pediatric Long COVID, post-exertional malaise, vascular dysfunction, persistent viral reservoirs, and the link between SARS-CoV-2 and diabetes.
Patient advocates, including RECOVER representatives, confirmed the reinstatement. Researchers noted that some studies were nearing completion and that this restoration prevents years of work from being lost. The move is seen as a rare win for the chronic illness community amid broader federal cuts, including the expected closure of the Office of Long COVID Research and Practice.
We’ve preserved the original update below for full context.
March 26, 2025
How Federal Disruptions Are Affecting the Autoimmune Community
If you live with autoimmune disease or care for someone who does, you may have noticed that the Office of Autoimmune Disease Research (OADR-ORWH) has gone quiet. This office, part of the National Institutes of Health (NIH), plays a central role in autoimmune disease research coordination. It helps align work across NIH institutes, reports progress to Congress, and creates opportunities for public education and engagement.
That lack of communication is concerning.
When communication stops, clarity fades. It becomes harder to follow research progress, track funding priorities, or see how agencies are working together. And for people living with these complex, often invisible illnesses, it can feel like being pushed even further to the margins.
Whether you’re a patient, caregiver, clinician, or researcher, this moment raises urgent questions:
Who is advocating for autoimmune disease within the federal system right now?
What research priorities might be delayed or dropped?
When will open communication with the public resume?
OADR Quiet as NIH Faces Major Federal Cuts
Since January, OADR-ORWH has canceled multiple public-facing events, removed and later restored its 2023–2024 report without explanation, and abruptly canceled its March 4 ScienceTALKS session on emerging cell therapies. OADR-ORWH has offered no explanation for the cancellations or when normal operations might resume.
These disruptions appear to align with a sweeping federal directive issued in February 2025. Under the “Department of Government Efficiency” initiative, agencies were ordered to submit plans for workforce reductions and reorganization by March 13. The guidance instructed agency heads to eliminate functions “not statutorily mandated,” reduce staff, and consolidate operations often at the Department of Health and Human Services (HHS) level, where sub-agency leaders may have limited input.
NIH could lose up to 5,000 staff members. Though OADR-ORWH hasn’t been specifically named, the timing and silence surrounding its activities are hard to ignore.
Risks to Chronic Illness Research as Long COVID Office Closes
The federal Office of Long COVID Research and Practice is also expected to shut down, according to recent internal communications. While no formal public announcement has been made and no official closure date has been set, the office is reportedly preparing to wind down operations as part of broader agency restructuring.
At the same time, Nature reports that the NIH and CDC have begun terminating nearly $850 million in active COVID-19 research grants, amounting to about 2% of NIH’s total budget. Projects being cut include research on vaccine hesitancy, diversity in science, and post-viral illness. A $577 million antiviral development program has also been eliminated. The CDC is expected to cancel an additional $11.4 billion in pandemic response funding.
Like autoimmune conditions, Long COVID represents a complex, often misunderstood chronic illness that has long struggled for recognition and sustained investment.
The Long Covid office is one of the few centralized federal efforts to address post-viral illness. Its possible closure—alongside large-scale research terminations—raises serious concerns that chronic, immune-related conditions are being deprioritized at the federal level.
We don’t yet have all the answers, but we know that transparency, communication, and coordination are essential for the autoimmune disease and chronic illness community. We will continue to monitor developments and advocate for clarity and the resources and representation this community deserves.