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More than a year after contracting COVID-19, Sawyer Blatz still can’t practice his weekly rituals: running miles in San Francisco’s Golden Gate Park or biking around his adopted hometown.
In many ways, the pandemic is not over for the 27-year-old and millions of other Americans. It may never be.
They have long COVID, a condition characterized by any combination of 200 different persistent symptoms, some of which, such as loss of taste and smell, are familiar from the initial infections and others entirely foreign, such as the complete exhaustion that makes Blatz unable to walk a lot. more than a block.
“I feel homesick for my own city,” said Blatz, a laid-off software engineer who now uses his limited energy to advocate for long-time COVID patients.
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Federal Estimates suggest that at least 16 million Americans They have had COVID for a long time and perhaps 4 million of them, like Blatz, who contracted his only COVID infection in November 2022, are disabled by it.
Along with other doctors and patient advocates, Blatz says the pace of government-funded research has been too slow and small to address a problem of this magnitude. Many people with long COVID have been left with debilitating conditions and have yet to see benefits from the hundreds of millions of tax dollars invested in understanding and treating the chronic disease.
As Blatz says, there are still no “zero” proven treatments for people like him.
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“The urgency and the finances are not up to the moment,” said Blatz, who has tried more than 50 medications, supplements and exercise regimens over the past year without success and who co-founded a group called Long COVID Moonshot to channel “this pain”. about my ruined life.”
New research is published almost every week, including recent studies showing that vaccines can reduce the risk of developing long COVID, i.e. inflammation can disrupt the normal barrier between the brain and the rest of the body, causing mental confusion, and that there is identifiable changes in the muscles of some people with long COVID, which could explain why exercise wears them down instead of strengthening them.
The complexity of both the disease and the drug development system, not to mention the difficulty of getting doctors to believe them and insurance to pay for visits, has long left COVID patients feeling alone and adrift.
Americans are paying a price. According to a 2022 analysisCOVID has long cost the U.S. economy at least $200 billion a year through lost productivity, lost wages and medical costs.
And it won’t go away without a lot more attention, said David Putrino, director of Rehabilitation Innovation at Mount Sinai Health System.
“It’s a problem we need to address quickly and aggressively, otherwise we’re all going to pay for it,” he said.
in a article in Science magazine Published last week, researchers argue that long COVID provides a historic opportunity to rethink the acute chronic diseases that result from many infections and prepare for future pandemics.
“This really needs to be an all-hands-on-deck situation,” Dr. Ziyad Al-Aly, author of the article, told USA TODAY. “A bolder approach is needed.”
The government is taking a systematic and comprehensive approach
Congress appropriated $1.2 billion in late 2020 to study long COVID and begin developing treatments.
Almost 90,000 adults and children joined studies started last year testing 13 interventions ranging from medications such as the antiviral Paxlovid to sleeping pills, physical therapy and medical devices.
This month, it committed an additional $500 million over the next four years to COVID Research Initiative to Improve Recovery (RECOVER)whose mission is “to take a systematic, comprehensive and rigorous approach to improve our understanding of long COVID and increase the likelihood of identifying treatments that work.”
The additional money, redirected from a public health reserve fund, will allow for more treatment studies as well as deeper research to better understand what is causing patients’ symptoms, co-chair Dr. Gary Gibbons told USA TODAY. of RECOVER.
Instead of moving slowly, Gibbons said the federal government is committed to helping patients and is working as quickly as responsible science allows.
Anyone who doesn’t see that either doesn’t understand the scientific process or doesn’t know what happens behind the scenes, much of which the federal government isn’t free to make public because of negotiations with drug companies, he said. .
“We all want to move with a sense of urgency toward what works, but it’s really important that it’s final and that we get it right,” Gibbons said. “That’s why we want to do this systematically, according to the standards of rigorous science.”
Advocates say more needs to happen faster
Still, longtime COVID advocates view the federal effort as anemic, inflexible and slow.
“The current approach is totally unsatisfactory,” said Al-Aly, chief of research and development for the U.S. Department of Veterans Affairs St. Louis Health Care System. The current clinical trials, he said, are “very, very, very small, not at all ambitious.”
The trials could point to a potential treatment, but they won’t provide any breakthrough, he said.
Instead, tens of thousands of existing drugs should be evaluated to develop lists of candidates that could also work for long-COVID patients, and the private sector should be encouraged to develop new treatments.
Right now, big companies are afraid to invest in the hugely expensive process of developing drugs for long COVID, he said, because there is no global agreement on either how to define long COVID or what improvement looks like.
Gibbons said his agency’s current collaboration with Pfizer, testing its drug Paxlovid in long COVID, should provide a regulatory roadmap for other companies to follow.
Mount Sinai’s Putrino said he thinks federal trials are also too simplistic.
The conditions of long COVID patients are some of the most complicated I have ever seen. Administering a single medication, device, or therapy won’t allow someone who can barely take a shower to suddenly return to work.
He compared the approach of taking one medication at a time to removing a nail from someone’s foot and leaving four more deeply embedded.
Instead, researchers should test multiple approaches simultaneously, using complex, cutting-edge clinical trial designs to see which combinations of therapies will help which patients, Putrino said.
Long COVID has several different possible causes, including lingering viral particles, clogged blood vessels, previous infections that somehow flare up, and an overactive or underactive immune system.
Some patients may have more than one problem. Addressing the specific cause of a person’s symptoms will be essential, he said.
Last week, Putrino’s group at Mount Sinai won a $2.6 million grant from a longtime COVID nonprofit called PolyBio Research Foundation to support two clinical trials. One will test whether two antiviral drugs used to treat HIV can mitigate the symptoms of long COVID. The second will explore whether breaking down small blood clots with an enzyme called lumbrokinase can reduce symptoms in patients with long COVID or chronic fatigue syndrome (ME/CFS).
Putrino said their studies will differ from those conducted by the federal government because they will match people with specific symptoms and biological indicators to treatments that target those symptoms, rather than testing each treatment on everyone with long COVID.
“My hope for 2024 is that the medications we prescribe will become much more evidence-based because these clinical trials will inform who will respond to which medications and who will not respond to those medications.” he said.
Both Al-Aly and Gibbons said they see the long COVID research as an opportunity to help other people with chronic ailments after infections.
Scientists have known, at least since the 1918 flu, that short-term illnesses can have long-term consequences. People infected with that strain of flu were in much higher risk of later developing Parkinson’s. Similarly, people infected with polio in childhood, even those who escaped its worst effects, can suffer decades later from polio. post-polio syndromea debilitating muscle weakness.
By seeing so many people get sick around the same time and learning how to help those with long COVID, scientists should also be able to help others struggling to recover or suffering consequences after another infection, Al-Aly said.
“We have marginalized these conditions and swept them under the rug for the last 100 years,” he said. “This pandemic is an opportunity to get it right.”