Tonight, 513 landmarks across 34 states and 20 countries will glow teal. A Times Square billboard will flash 44 times. In Los Angeles, City Hall lights up on Oscar night, broadcasting a message about a disease that has no approved treatment, no reliable diagnostic test, and — increasingly — no one in government fighting for it.
March 15 is International Long COVID Awareness Day. The theme this year is "Every Heartbeat Counts." But behind the teal lights, something darker has been unfolding: a systematic dismantling of the research infrastructure that 44 million Americans depend on.
This is what was lost.
The Timeline
February 2025: The Committee That Never Met
The HHS Secretary's Advisory Committee on Long COVID had taken a year to assemble. Members were selected through a careful process. They were sworn in just weeks before President Trump directed HHS to terminate the committee within 14 days.
It never held a single official meeting.
March 25, 2025: The Office Closes
The Office of Long COVID Research and Practice (OLC) — the only federal office dedicated to coordinating Long COVID research — was closed as part of an HHS workforce reduction. Its head, Ian Simon, announced via email that the office would shut down as part of "the administration's reorganization."
This was despite HHS Secretary RFK Jr. stating during his confirmation that he was committed to Long COVID research. The Lancet Microbe covered the closure as part of a broader pattern of US government cuts to COVID research.
March 25–27, 2025: Forty-Five Grants Disappear
In a single week, 45 RECOVER pathobiology grants were canceled. Every grant funded in 2022–2023 — gone. New pediatric Long COVID grants, not yet publicly announced, were cut too.
The official statement: HHS would "no longer waste billions of taxpayer dollars responding to a non-existent pandemic."
Here's the cruel part: most of these studies were nearly complete. Researchers had already collected the data. They just needed to analyze it and publish. Years of patient recruitment, sample collection, and careful science — stopped at the finish line.
After pressure from senators, lawsuits, and media coverage, some grants were partially restored within days. But it remains unclear how many of the 45 were actually reinstated, and the damage to researcher confidence was done.
The Broader Assault on Science
Long COVID wasn't the only target. The scale of the broader attack on biomedical research is staggering:
- 15,887 federal grants terminated by DOGE, totaling approximately $49 billion across all agencies
- 383 clinical trials disrupted, affecting 74,311 patients who were actively enrolled and potentially still receiving interventions
- 98% drop in new NIH funding opportunities: between January 20 and March 26, NIH published only 3 NOFOs compared to 163 in the same period of 2023
- Each new funding notice requires approval by one DOGE employee and one HHS employee for "alignment with administration priorities"
- New competing R01 grants reduced by 14% below peer review recommended levels
- ProPublica found that NIH continued canceling grants even after a judge blocked the cuts
- DOGE has "broad control" over NIH grant decisions, according to court documents
Johns Hopkins alone is laying off 2,000 workers. The research ecosystem — one that took decades to build — is under severe structural stress.
The Waste Paradox
The deepest irony: cutting this research doesn't save money. It wastes it.
A Science analysis of 477 canceled NIH grants found that more than half had already used over 50% of their funding — $1.4 billion of $2.8 billion already spent. Terminating them means throwing away the investment without getting the results.
As former Science editor Jeremy Berg put it: "You're throwing away the money that's already been invested."
Meanwhile, every dollar invested in NIH research returns $2.56 to the US economy. Long COVID itself costs the US economy an estimated $3.7 trillion. The math of cutting research into a condition this expensive is not fiscal responsibility — it's fiscal self-harm.
The Pharma Problem
Government isn't the only institution failing Long COVID patients. Pharmaceutical companies are actively refusing to help.
Dr. Avindra Nath, a senior researcher at NINDS, approached Merck in June 2024 requesting pembrolizumab (Keytruda) for a Long COVID trial. The rationale was strong — the drug had previously been used successfully in 5 of 8 patients with a different persistent brain infection. Merck responded within a week: "Not within our current company priorities."
Keytruda earned Merck $29.5 billion in 2024.
NIH offered to fund everything — the trial design, the infrastructure, the patient recruitment. They just needed the drug. "All the rest we can do ourselves," Nath said. "We just need the drug."
It wasn't just Merck. Bristol-Myers Squibb refused Opdualag for a follow-up request. Eli Lilly and Amgen refused drugs for Igor Koralnik at Northwestern to treat severe Long COVID headaches. No company has publicly explained why.
The pattern is clear: even when the government offers to fund the research, and the clinical rationale is sound, pharmaceutical companies see no business case in helping 44 million patients with a disease no one has figured out how to treat.
What Still Stands
Not everything has been destroyed. The RECOVER clinical trials — the Treatment to Lessen the Effects of Long COVID (TLC) program — continue for now, funded by a $662 million allocation over FY2025–2029.
REVERSE-LC, testing the JAK inhibitor baricitinib in 550 patients across 17 sites, is actively recruiting. RECOVER-AUTONOMIC results for ivabradine in POTS patients are expected at the American College of Cardiology meeting on March 28. New trials of low-dose naltrexone and semaglutide are targeting summer 2026 enrollment.
But uncertainty hangs over everything. As one researcher told reporters: "It's hard to fully relax."
By the Numbers
- 44 million Americans with Long COVID symptoms
- 400 million+ estimated worldwide
- $3.7 trillion estimated cost to the US economy
- $1.7 billion total RECOVER program funding
- 45 pathobiology grants canceled in one week
- 1 advisory committee terminated before it could meet
- 1 federal Long COVID office closed
- 0 FDA-approved treatments for Long COVID
- 0 pharmaceutical companies willing to supply drugs for trials
What the Teal Lights Mean
Tonight, the CN Tower, Niagara Falls, Barcelona City Hall, Cardiff Castle, the Capitol in Puerto Rico, and hundreds of other landmarks will light up for the estimated 400 million people worldwide living with Long COVID.
The campaign — founded by Angela Laffin in 2023 — has grown every year. This year's demonstrations stretch from Los Angeles to Brussels to Paris to Zaragoza. A 24-hour Twitter/X marathon will run starting at noon Central Time.
But awareness without action is just decoration. The 44 million aren't going away. Their symptoms aren't resolving because the research was defunded. The question is no longer whether Long COVID is real — the science settled that years ago. The question is whether anyone will be left to study it.
Every heartbeat counts. Every grant matters. Every trial that runs to completion brings us closer to understanding a disease that has reshaped millions of lives.
The lights are on. Now we need the science to match.