'A Huge Deal': Millions Have Long COVID, and More Are Expected

Solarina Ho

November 16, 2022

Editor's note: Find the latest long COVID news and guidance in Medscape's Long COVID Resource Center.

Roughly 14% of all adult Americans have ever had long COVID, with symptoms that have lasted 3 months or longer, according to the latest US government survey, conducted in October.

More than a quarter say their condition is severe enough to significantly limit their day-to-day activities – yet the problem is only barely starting to get the attention of employers, the health care system, and policymakers.

With no cure or treatment in sight, long COVID is already burdening not only the health care system, but also the economy – and that burden is set to grow. Many experts worry about the possible long-term ripple effects, from increased spending on medical care costs to lost wages due to not being able to work, as well as the policy implications that come with addressing these issues.

"At this point, anyone who's looking at this seriously would say this is a huge deal," says senior Brookings Institution fellow Katie Bach, the author of a study that analyzed long COVID's impact on the labor market.

"We need a real concerted focus on treating these people, which means both research and the clinical side, and figuring out how to build a labor market that is more inclusive of people with disabilities," she says.

It's not only that many people are affected. It's that they are often affected for months and possibly even years.

The U.S. government figures suggest more than 18 million people could have symptoms of long COVID right now. The latest Household Pulse Survey by the Census Bureau and the National Center for Health Statistics takes data from 41,415 people.

A pre-print of a study by researchers from City University of New York, posted on medRxiv in September and based on a similar population survey done between June 30 and July 2, drew comparable results. The study has not been peer-reviewed.

More than 7% of all those who answered said they had long COVID at the time of the survey, which the researchers said corresponded to approximately 18.5 million U.S. adults. The same study also found that a quarter of those, or an estimated 4.7 million adults, said their daily activities were impacted "a lot."

This can translate into pain not only for the patients, but for governments and employers, too.

In high-income countries around the world, government surveys and other studies are shedding light on the extent to which post-COVID-19 symptoms – commonly known as long COVID – are affecting populations. While results vary, they generally fall within similar ranges.

The World Health Organization estimates that between 10% and 20% of those with COVID-19 go on to have an array of medium- to long-term post-COVID-19 symptoms that range from mild to debilitating. The U.S. Government Accountability Office puts that estimate at 10% to 30%; one of the latest studies published at the end of October in The Journal of the American Medical Association found that 15% of U.S. adults who had tested positive for COVID-19 reported current long COVID symptoms. Elsewhere, a study from the Netherlands published in the journal The Lancet in August found that 1 in 8 COVID-19 cases, or 12.7%, were likely to become long COVID.

"It's very clear that the condition is devastating people's lives and livelihoods," WHO Director-General Tedros Adhanom Ghebreyesus wrote in an article for The Guardian newspaper in October.

"The world has already lost a significant number of the workforce to illness, death, fatigue, unplanned retirement due to an increase in long-term disability, which not only impacts the health system, but is a hit to the overarching economy … the impact of long COVID for all countries is very serious and needs immediate and sustained action equivalent to its scale."

Global Snapshot: Lasting Symptoms, Impact on Activities

Patients describe a spectrum of persistent issues, with extreme fatigue, brain fog or cognitive problems, and shortness of breath among the most common complaints. Many also have manageable symptoms that worsen significantly after even mild physical or mental exertion.

Women appear almost twice as likely as men to get long COVID. Many patients have other medical conditions and disabilities that make them more vulnerable to the condition. Those who face greater obstacles accessing health care due to discrimination or socioeconomic inequity are at higher risk as well.

While many are older, a large number are also in their prime working age. The Census Bureau data shows people ages 40-49 are more likely than any other group to get long COVID, which has broader implications for labor markets and the global economy. Already, experts have estimated that long COVID is likely to cost the U.S. trillions of dollars and affect multiple industries.

"Whether they're in the financial world, the medical system, lawyers, they're telling me they're sitting at the computer screen and they're unable to process the data," says Zachary Schwartz, MD, the medical director for Vancouver General Hospital's Post-COVID-19 Recovery Clinic.

"That is what's most distressing for people, in that they're not working, they're not making money, and they don't know when, or if, they're going to get better."

Nearly a third of respondents in the Census Bureau's Household Pulse Survey who said they have had COVID-19 reported symptoms that lasted 3 months or longer. People between the ages of 30 and 59 were the most affected, with about 32% reporting symptoms. Across the entire adult U.S. population, the survey found that 1 in 7 adults have had long COVID at some point during the pandemic, with about 1 in 18 saying it limited their activity to some degree, and 1 in 50 saying they have faced "a lot" of limits on their activities. Any way these numbers are dissected, long COVID has impacted a large swath of the population.

Yet research into the causes and possible treatments of long COVID is just getting underway.

"The amount of energy and time devoted to it is way, way less than it should, given how many people are likely affected," says David Cutler, PhD, a professor of economics at Harvard University who has written about the economic cost of long COVID. "We're way, way under doing it here. And I think that's really a terrible thing."

Population surveys and studies from around the world show that long COVID lives up to its name, with people reporting serious symptoms for months on end.

In October, Statistics Canada and the Public Health Agency of Canada published early results from a questionnaire done between spring and summer 2022 that found just under 15% of adults who had a confirmed or suspected case of COVID-19 went on to have new or continuing symptoms 3 or more months later. Nearly half, or 47.3%, dealt with symptoms that lasted a year or more. More than 1 in 5 said their symptoms "often or always" limited their day-to-day activities, which included routine tasks like preparing meals, doing errands and chores, and basic functions such as personal care and moving around in their homes.

Nearly three-quarters of workers or students said they missed an average of 20 days of work or school.

"We haven't yet been able to determine exactly when symptoms resolve," says Rainu Kaushal, MD, the senior associate dean for clinical research at Weill Cornell Medicine in New York City. She is co-leading a national study on long COVID in adults and children, funded by the National Institutes of Health RECOVER Initiative.

"But there does seem to be, for many of the milder symptoms, resolution at about 4 to 6 weeks. There seems to be a second point of resolution around 6 months for certain symptoms, and then some symptoms do seem to be permanent, and those tend to be patients who have underlying conditions," she says.

Reducing the Risk

Given all the data so far, experts recommend urgent policy changes to help people with long COVID.

"The population needs to be prepared, that understanding long COVID is going to be a very long and difficult process," says Alexander Charney, MD, PhD, an associate professor and the lead principal investigator of the RECOVER adult cohort at Mount Sinai in New York City. But he says the government can do a great deal to help, including setting up a network of connected clinics treating long COVID, standardizing best practices, and sharing information.

"That would go a long way towards making sure that every person feels like they're not too far away from a clinic where they can get treated for this particular condition," he says.

But the only known way to prevent long COVID is to prevent COVID-19 infections in the first place, experts say. That means equitable access to tests, therapeutics, and vaccines.

"I will say that avoiding COVID remains the best treatment in the arsenal right now," says Kaushal. This means masking, avoiding crowded places with poor ventilation and high exposure risk, and being up-to-date on vaccinations, she says.

A number of papers – including a large U.K. study published in May 2022, another one from July, and the JAMA study from October – all suggest that vaccinations can help reduce the risk of long COVID.

"I am absolutely of the belief that vaccination has reduced the incidence and overall amount of long COVID … [and] still by far the best thing the public can do," says Schwartz.

Sources

Zachary Schwartz, MD, medical director, Vancouver General Hospital's Post-COVID-19 Recovery Clinic.

Rainu Kaushal, MD, senior associate dean for clinical research, Weill Cornell Medicine, New York City; co-lead, National Institutes of Health RECOVER Initiative study on long COVID in adults and children.

Alexander Charney, MD, PhD, lead principal investigator, RECOVER adult cohort, Mount Sinai, New York City; assistant professor of psychiatry, genetics and genomic sciences, neuroscience, and neurosurgery, Icahn Mount Sinai.

Katie Bach, senior fellow, Brookings Institution.

David Cutler, PhD, professor of economics, Harvard University.

CDC: "Long COVID, Household Pulse Survey."

U.S. Census Bureau: "U.S. Adult population grew faster than nation's total population from 2010 to 2020."

U.S. Government Accountability Office: Science & Tech Spotlight: Long COVID

The Journal of the American Medical Association: "Prevalence and correlates of long COVID symptoms among U.S. adults," "Association Between BNT162b2 Vaccination and Long COVID After Infections Not Requiring Hospitalization in Health Care Workers."

The Lancet: "Persistence of somatic symptoms after COVID-19 in the Netherlands: an observational cohort study."

Health Canada: "Frequency and impact of longer-term symptoms following COVID-19 in Canadian adults."

U.K. Office for National Statistics: "Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 3 November 2022."

World Health Organization: "At least 17 million people in the WHO European Region experienced long COVID in the first two years of the pandemic; millions may have to live with it for years to come."

The Guardian: "The data is clear: long Covid is devastating people's lives and livelihoods," "Trajectory of long covid symptoms after covid-19 vaccination: community based cohort study."

Nature: "Outcomes among confirmed cases and a matched comparison group in the Long-COVID in Scotland study" (updated with correction).

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