It's been five years since COVID-19 was declared a pandemic. But many patients with long COVID have yet to find meaningful recovery.
Around 6% of adults in the U.S. — or roughly 18 million — are estimated to be living with the damaging aftermath of catching the virus, according to research and a long-running survey of U.S households, although numbers are still difficult to pin down because the definitions vary.
And it's not a thing of the past — new patients are still showing up in doctor's offices.
"I think that's one of the biggest misconceptions," says Hannah Davis, co-founder of the advocacy group, Patient-Led Research Collaborative,
"We've seen so much long COVID in just the last year or two."
Research on long COVID has coalesced around a handful of explanations for what could underpin the illness, but that hasn't yet translated into major breakthroughs for patients who need care.
There are still no approved treatments for the condition, which can span many organ systems and symptoms depending on the patient, and can include shortness of breath, brain fog, fatigue and post-exertional malaise, among other things.
Under the Biden administration, long COVID patients had pushed for more federal funding and a refocus of research priorities toward treatments.
Now, patient advocates and scientists have to make their case to new decision-makers, guided by the priorities of the Trump administration — and do so at a moment of turbulence for biomedical sciences with funding imperiled for many institutions.
"Regardless of party or political position, long COVID patients have been failed to date by our leaders," says Meighan Stone, executive director of the Long COVID Campaign, who's busy lobbying the new administration and Congress.
Stone acknowledges there are certainly some "heartfelt disagreements," between the patient community and Trump's picks to lead federal health agencies, particularly on policies related to curbing the spread of the virus, but she argues patients need to find places where there's common ground.
"We don't have the luxury of sitting out the next four years over any ideological differences."
Slow progress in research, but promising new trials
For many patients, the day-to-day reality has not changed dramatically. Finding clinicians who are well-versed in the nuances of long COVID remains challenging, patients say.
The approach to care generally focuses on relieving specific symptoms and related medical conditions that someone develops such as autoimmunity or POTS, says Dr. Monica Verduzco-Gutierrez, chair of rehabilitation medicine at UT Health Science Center San Antonio.
"It is a lot of symptom management right now," she says. "We need significant treatment trials so patients have the possibility of getting a cure."
Even though progress has not come nearly fast enough, those involved in long COVID research emphasize there's reason for optimism.
In the last year alone, Davis notes scientists have published important work in a variety of areas — on blood clotting, the impacts of exercise, evidence of viral persistence in the spinal cord, and loss of blood flow to the brain, to name just a few.
With this research in hand, the field is now ripe for a broader push to test different therapies.
"When trials launched a couple of years ago, there was hope that it would be easy and we would just hit a home run," says Dr. Michael Peluso, who runs a large research program on long COVID at the University of California, San Francisco.
"The first round of trials that have been reported out have shown this is going to be more complicated — we all sort of expected that."
By Peluso's estimation, there are currently in the neighborhood of 50 drug trials underway for long COVID, a considerable increase from a few years ago when he only counted about a dozen.
"We have drugs that can target almost every single one of the different mechanisms that we think might be contributing to long COVID, but so far we've launched way too few trials" to thoroughly test them, says Peluso.
To get there will require more participation from drugmakers, which have largely stayed on the sidelines. Plus, researchers want to identify a biomarker for the illness that can be reliably tracked across multiple trials; and they say a better coordinated clinical trial agenda is needed.
Different theories on long COVID's cause
Viral persistence — the theory that an ongoing infection is hiding out in the body — has featured prominently in some of the early trials, which have leveraged antivirals and monoclonal antibodies in hopes of extinguishing an ongoing infection.
At least half a dozen other mechanisms may also drive the illness, though.
Among them: Immune dysfunction, the reactivation of dormant viruses like herpes, dysregulation of clotting proteins, and trouble with the microbiome. All of these could be equally, if not more important as viral persistence, and have received less attention in clinical trials up to this point, says Peluso.
Davis is closely following a number of up-and-running trials, led by individual research groups and universities, which are testing immunomodulators, HIV drugs, rapamycin, intravenous immunoglobulin (IVIG), enzymes called nattokinase and lumbrokinase, and other therapies.
Private funders have stepped up to back some of these efforts. For example, the non-profit PolyBio Research Foundation has raised millions of dollars to spearhead some of its trials. The federal government, however, remains pivotal in guiding the broader long COVID agenda, given its role in funding research and eventually greenlighting treatment.
Through the RECOVER initiative, Congress has already poured more than $1 billion into this work and last year appropriated an additional $662 million to be spent in the coming years. About half of that money is supposed to support clinical trials, led by the National Institutes of Health.
A new lobbying push from patients
Ensuring these studies — and the funding for them — continue is the number one priority right now, says Stone of the Long COVID campaign.
With upheaval across federal health agencies and science funding in doubt, it's hard to know what's in store for an emerging field of research like long COVID.
"It's going to take a different type of strategy than we have been doing for the last four years," says Davis.
Secretary of Health and Human Services Robert F. Kennedy Jr. and Dr. Jay Bhattacharya, the nominee to lead the NIH, both explicitly pledged to support long COVID research during their Senate confirmation hearings.
Stone says Kennedy's focus on chronic diseases — and specifically the president's Make America Healthy Again Commission — could be an opportunity for long COVID patients and those suffering from infection-associated chronic conditions.
On the other hand, Kennedy has indicated he'd like to deprioritize research on infectious diseases and even petitioned to have federal regulators pull the COVID-19 vaccine off the market in 2021.
Kennedy and Bhattacharya have also heavily criticized measures aimed at mitigating COVID transmission. But many in the long COVID community are frustrated that the ongoing spread of the virus has been normalized and point out that reinfections still carry a risk for long COVID.
After taking office, President Trump was quick to disband a long COVID advisory committee that took months to stand-up. That came as a disappointment to Verduzco-Gutierrez, who was a member. But she says it doesn't stop any of the work that she and others on the committee will be doing, alongside advocacy groups.
Stone managed to get a moment in the hallway with Bhattacharya after his confirmation hearing earlier this month and says he reiterated to her that he's serious about long COVID.
"Patients should take Secretary Kennedy and take Dr. Bhattacharya at their word, and if the administration doesn't meet the patient community in that, then we will keep calling for action the same way that we did under President Biden," she says.
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