COVID-19 is far from done in the United States, with more than 111,000 new cases being recorded a day in the second week of August, according to Johns Hopkins University, and 625 deaths being reported every day. And as that toll grows, experts are worried about a second wave of illnesses from long COVID, a condition that already has affected between 7.7 million and 23 million Americans, according to US government estimates.
“It is evident that long COVID is real, that it already impacts a substantial number of people, and that this number may continue to grow as new infections occur,” the US Department of Health and Human Services said in a research action plan released Aug. 4.
“We are heading towards a big problem on our hands,” says Ziyad Al-Aly, MD, chief of research and development at the Veterans Affairs Hospital in St. Louis. “It’s like if we are falling in a plane, hurtling towards the ground. It doesn’t matter at what speed we are falling; what matters is that we are all falling, and falling fast. It’s a real problem. We needed to bring attention to this yesterday,” he says.
Bryan Lau, PhD, a professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health and co-lead of a long COVID study there, says whether it’s 5% of the 92 million officially recorded US COVID-19 cases, or 30% — on the higher end of estimates — that means anywhere between 4.5 million and 27 million Americans will have the effects of long COVID.
Other experts put the estimates even higher.
“If we conservatively assume 100 million working-age adults have been infected, that implies 10 to 33 million may have long COVID,” Alice Burns, PhD, associate director for the Kaiser Family Foundation’s Program on Medicaid and the Uninsured, wrote in an analysis.
And even the CDC says only a fraction of cases have been recorded.
That, in turn, means tens of millions of people who struggle to work, to get to school, and to take care of their families — and who will be making demands on an already stressed US healthcare system.
Health and Human Services said in its Aug. 4 report that long COVID could keep 1 million people a day out of work, with a loss of $50 billion in annual pay.
Lau says health workers and policymakers are woefully unprepared.
“If you have a family unit, and the mom or dad can’t work, or has trouble taking their child to activities, where does the question of support come into play? Where is there potential for food issues, or housing issues?” he asks. “I see the potential for the burden to be extremely large in that capacity.”
Lau says he has yet to see any strong estimates of how many cases of long COVID might develop. Because a person has to get COVID-19 to ultimately get long COVID, the two are linked. In other words, as COVID-19 cases rise, so will cases of long COVID, and vice versa.
Evidence from the Kaiser Family Foundation analysis suggests a significant impact on employment: Surveys showed more than half of adults with long COVID who worked before becoming infected are either out of work or working fewer hours. Conditions associated with long COVID — such as fatigue, malaise, or problems concentrating — limit people’s ability to work, even if they have jobs that allow for accommodations.
Two surveys of people with long COVID who had worked before becoming infected showed that between 22% and 27% of them were out of work after getting long COVID. In comparison, among all working-age adults in 2019, only 7% were out of work. Given the sheer number of working-age adults with long COVID, the effects on employment may be profound and are likely to involve more people over time. One study estimates that long COVID already accounts for 15% of unfilled jobs.
The most severe symptoms of long COVID include brain fog and heart complications, known to persist for weeks for months after a COVID-19 infection.
A study from the University of Norway published in the July 2022 edition of Open Forum Infectious Diseases found 53% of people tested had at least one symptom of thinking problems 13 months after infection with COVID-19. According to the Department of Health and Human Service’s latest report on long COVID, people with thinking problems, heart conditions, mobility issues, and other symptoms are going to need a considerable amount of care. Many will need lengthy periods of rehabilitation.
Al-Aly worries that long COVID has already severely affected the labor force and the job market, all while burdening the country’s healthcare system.
“While there are variations in how individuals respond and cope with long COVID, the unifying thread is that with the level of disability it causes, more people will be struggling to keep up with the demands of the workforce and more people will be out on disability than ever before,” he says.
Studies from Johns Hopkins and the University of Washington estimate that 5% to 30% of people could get long COVID in the future. Projections beyond that are hazy.
“So far, all the studies we have done on long COVID have been reactionary. Much of the activism around long COVID has been patient-led. We are seeing more and more people with lasting symptoms. We need our research to catch up,” Lau says.
Theo Vos, MD, PhD, a professor of health sciences at University of Washington, says the main reasons for the huge range of predictions are the variety of methods used, as well as differences in sample size. Also, much long COVID data is self-reported, making it difficult for epidemiologists to track.
“With self-reported data, you can’t plug people into a machine and say this is what they have or this is what they don’t have. At the population level, the only thing you can do is ask questions. There is no systematic way to define long COVID,” he says.
Vos’s most recent study, which is being peer-reviewed and revised, found that most people with long COVID have symptoms similar to those seen in other autoimmune diseases. But sometimes the immune system can overreact, causing the more severe symptoms, like brain fog and heart problems, associated with long COVID.
One reason that researchers struggle to come up with numbers, says Al-Aly, is the rapid rise of new variants. These variants appear to sometimes cause less severe disease than previous ones, but it’s not clear whether that means different risks for long COVID.
“There’s a wide diversity in severity. Someone can have long COVID and be fully functional, while others are not functional at all. We still have a long way to go before we figure out why,” Lau says.