More than a year after contracting COVID-19, Sawyer Blatz still follows his weekly routine of running miles in San Francisco’s Golden Gate Park and biking around his adopted hometown. I haven’t been able to practice the habit of going around.
In many ways, the pandemic isn’t over for the 27-year-old and millions of other Americans. That may never be the case.
They have been sick with the coronavirus for a long time, and the condition is characterized by a combination of up to 200 different lingering symptoms, some of which are familiar from initial infection, such as loss of taste and smell, and some of which Blatz said are Some are completely different, such as extreme fatigue that makes it impossible to walk much. More than a block.
“I feel homesick for my city,” said Blatz, a laid-off software engineer. Currently, they are using their limited energy to support long-term coronavirus patients.
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federal government It is estimated that at least 16 million Americans Perhaps 4 million people are disabled by COVID-19, like Blatz, a long-time COVID-19 sufferer who contracted his only COVID-19 infection in November 2022.
Bratz, like other patient advocates and doctors, says government-funded research is moving too slowly and is too small to address a problem of this magnitude. Many long-term COVID-19 patients remain debilitated and have yet to benefit from the hundreds of millions of taxpayer dollars poured into understanding and treating chronic diseases.
As Blatz says, there are still “zero” proven treatments for people like him.
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“Neither the urgency nor the finances are met at this time,” Blatz said. He has tried more than 50 medications, supplements and exercise regimens over the past year to no avail. He is the co-founder of a group called “Long COVID Moonshot to express this sadness.” That my life was ruined. ”
New studies are published almost every week, including a recent study that showed: vaccine Can reduce the risk of developing a long-term new coronavirus infection Inflammation can disrupt normal barriers There is a problem between your brain and the rest of your body that causes brain fog. Discernible changes in muscles The proportion of some people who have had COVID-19 for a long time may explain why exercise wears them out rather than making them stronger.
COVID-19 patients have long felt alone and adrift, due to the difficulty of getting doctors to believe them and getting insurance to pay for visits, not to mention the complexities of both the disease and the drug development system.
Americans are paying the price. According to the analysis in 2022For a long time now, COVID-19 has cost the American economy at least $200 billion a year in lost productivity, lost wages, and lost health care costs.
David Putrino, director of rehabilitation innovation at Mount Sinai Health System, said the problem won’t go away without more attention.
“This is an issue we need to address quickly and aggressively, or we will all pay the price,” he said.
in Paper published in Science magazine In a paper published last week, researchers say the prolonged COVID-19 pandemic provides a historic opportunity to rethink the acute and chronic diseases caused by many infectious diseases and prepare for future pandemics. claims.
“This really requires a collective effort,” study author Dr. Ziyad Al Ali told USA TODAY. “We need a bolder approach.”
The government is taking a systematic and comprehensive approach
Congress appropriated $1.2 billion at the end of 2020 to begin long-term COVID-19 research and treatment development.
Nearly 90,000 adults and children participated Research started last year They tested 13 interventions, ranging from drugs such as the antiviral drug paxlobid to sleep aids, physical therapy and medical devices.
This month, the company announced an additional $500 million in investments over the next four years. Researching Coronavirus and Accelerating Recovery (RECOVER) Initiative’s mission is to “take a systematic, comprehensive, and rigorous approach to deepen our understanding of the long-lasting coronavirus and improve the chances of identifying effective treatments.”
Additional funding directed from the Public Health Reserve Fund will enable more treatment research as well as more in-depth research to better understand the causes of patients’ symptoms, RECOVER co-chairs said. Dr. Gary Gibbons told USA TODAY.
Gibbons said the federal government is committed to supporting patients and moving as quickly as responsible science allows, rather than proceeding slowly.
Those who don’t understand that either don’t understand the scientific process or don’t know what’s going on behind the scenes, and the federal government is free to release much of it in order to negotiate with drug companies. There is no, he said. .
“Everyone wants to move to what works with a sense of urgency, but it’s really important that it’s decisive and that we get it right,” Gibbons said. . “That’s why we want to do this systematically and according to rigorous scientific standards.”
Advocates say more needs to be done, faster
Still, longtime coronavirus advocates see the federal government’s efforts as weak, inflexible and slow.
“The current approach is completely unsatisfactory,” said Al Ali, director of research and development at the U.S. Department of Veterans Affairs St. Louis Healthcare System. Current clinical trials are “very, very small and not at all ambitious,” he said.
Although the trial may show a potential treatment, it will not provide any breakthrough solutions, he said.
Instead, tens of thousands of existing drugs will need to be evaluated to create a list of candidates that may be effective even in patients with long-term COVID-19 infections, encouraging the private sector to develop new treatments. It should be.
He said large companies are currently afraid to invest in the hugely expensive process of developing long-term coronavirus treatments, because no matter how long-term coronavirus is defined or improved. This is because there is no global agreement on what to do.
Gibbons said the current collaboration with Pfizer, which is testing its drug paxlobid during the long COVID-19 pandemic, should provide a regulatory roadmap for other companies to follow.
Putrino, a Mount Sinai resident, said he also thinks the federal case is too simplistic.
The conditions of long-term coronavirus patients are some of the most complex he has ever seen. Just because he provides one drug, device, or treatment doesn’t mean someone who can barely take a shower can suddenly go back to work.
He compared the approach of administering one drug at a time to removing one nail from a person’s foot and leaving four more deeply embedded.
Instead, researchers need to use complex, cutting-edge clinical trial designs to test multiple approaches simultaneously to see which treatment combinations work for which patients, Putrino said. said.
There are many possible causes of prolonged COVID-19 infection, including residual virus particles, clogged blood vessels, some form of recurrence of a previous infection, and over- or under-activation of the immune system.
Some patients may have multiple problems. He says it will be essential to target the specific cause of someone’s symptoms.
Last week, Putrino’s group at Mount Sinai won a $2.6 million grant to support two clinical trials from a nonprofit called the PolyBio Research Foundation, which has long worked to fight the coronavirus. . One will test whether two antiviral drugs used to treat HIV can alleviate long-term symptoms of coronavirus infection. The second study will explore whether breaking down small blood clots with an enzyme called lumbrokinase can alleviate symptoms in patients with long-term coronavirus infection or chronic fatigue syndrome (ME/CFS).
Putrino said his study differs from research being conducted by the federal government, which focuses on specific symptoms rather than testing all treatments on everyone with COVID-19. The idea is to match people with symptoms and biological indicators with treatments that target those symptoms.
“My hope for 2024 is that the drugs we prescribe will be more evidence-based, because these clinical trials will help us understand who responds to which drugs and who responds to them. “We can tell if a patient is not responding to the drug,” he said.
Al-Aly and Gibbons said they see long-term coronavirus research as an opportunity to help people who suffer from chronic illnesses after infection.
Scientists have known since at least the 1918 influenza that short-term illnesses can cause long-term effects. People infected with that influenza strain much higher risk You may later develop Parkinson’s disease. Similarly, people infected with polio in childhood can develop it decades later, even if they escape the worst effects. postpolio syndromedebilitating muscle weakness.
Seeing so many people get sick at the same time, and learning how to help people with long-term COVID-19 infections, scientists are hoping to help those who are struggling to recover or get sick with another infection. It should also be possible to help those suffering from the effects of the pandemic, Al-Aly said.
“We’ve been downplaying and ignoring these situations for the last 100 years,” he says. “This pandemic is an opportunity to do it right.”
