philippa dunne is co-editor at TLRanalytics, an economics research firm. melissa smallwood is a science and technology policy researcher who is an international development consultant at K Enterprises. emily taylor is vice president of advocacy and engagement at Solve M.E., a nonprofit advocacy organization that serves as a catalyst for research into myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), long Covid and other post-infection syndromes. This article is adapted from Solve M.E.’s long Covid impact white paper.
Illustrations by michael glenwood
Published October 31, 2022
While the scourge of Covid-19 is well documented in terms of reported cases and deaths, much less is known about the enduring economic consequences — in particular about the impact of disabling long Covid (DLC) on the size and productivity of the labor force as well as on the finances of affected workers’ households. Here, we summarize the emerging evidence and offer some cost estimates drawing on the model used by Solve M.E., a nonprofit that advocates for research and policy changes to manage the impact of postinfection diseases.
Indeed, while Covid-19 is the focus of this analysis, it is important to note that prior to the current pandemic, there were large numbers of Americans coping with post-infection syndromes. These conditions include ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome), which was already costing the U.S. economy an estimated $36 billion to $51 billion annually.
Most alarmingly, there is little awareness that government disability programs are on track to be overwhelmed by DLC cases, which will likely number in the millions. It is critical that we prepare for this tsunami, not only by scaling up programs to compensate victims of DLC, but also by reforming the disability system to achieve the preferred outcome: allowing people who are willing and able to maintain employment to return to work — full-time or part-time.
What Is Long Covid?
Long Covid (LC) is a catch-all for a collection of lingering symptoms that can be anything from annoying to devastating to survivors for months or years. The most frequent prolonged symptoms — persistent fatigue, brain fog and depleted energy after even minimal effort — have a profound impact on everyday functioning. Some sufferers can, at best, work part-time, while others are unable to remain in the active labor force without major accommodations.
Unfortunately, we’re discovering that LC is all too common. Penn State College of Medicine researchers found that over half of Covid-19 patients experience lingering symptoms six or more months after their initial infection. Researchers anticipate that millions of patients will feel the aftershocks of this disease for a lifetime.
When the cost of health care expenses and lost income are combined for the full DLC population, we estimate that, through January 2022, disability caused by long Covid has cost close to $400 billion.
Who’s Got It?
The models used by Solve M.E.’s Solve Long Covid Initiative suggest that, through January 2022, the pandemic has caused between 22 million and 43 million cases of long Covid in the U.S. — that’s 7 to 13 percent of the total population. (The smaller number is based on reported cases; the larger is based on “seroprevalence,” the proportion of surveyed individuals who have evidence of past infection in their blood.) Of these cases, 7 to 14 million are expected to result in DLC, placing survivors at risk of long-term, perhaps lifelong, complex health problems along with financial ruin from health care costs and unemployment.
The states carrying the highest total caseloads of long Covid are, unsurprisingly, those with the largest populations: California, Texas, Florida, New York and Illinois. However, a more important measure of impact may be the proportion of a state’s population that is afflicted by post-Covid-19 symptoms. And when it rains, it pours: states with high rates of infection were already carrying a disproportionate burden from poverty, racial inequality, disability, chronic illness and inadequate health care prior to the pandemic.
When the cost of health care expenses and lost income are combined for the full DLC population, we estimate that, through January 2022, disability caused by long Covid has cost close to $400 billion. However, this statistic only captures the near-term financial burden experienced by individuals. It does not begin to assess the long-term and indirect effects of this disease on businesses and communities, not to mention government budgets. A detailed explanation of how we calculated both cases and costs can be found in the Solve Long Covid Initiative, available at solvecfs.org.
The COVID-19 Longhauler Advocacy Project (C-19 LAP), another nonprofit assaying the consequences of long Covid, conducted a survey on the overall economic and labor market impacts of DLC. Its model assumes a 10 percent prevalence rate of DLC among Covid-19 survivors and focuses on people experiencing substantial disruption to their employment and daily functioning from their illness. (This 10 percent prevalence rate is, incidentally, consistent with our estimate of the 10 percent of post-Covid-19 patients who will develop DLC.)
C-19 LAP’s model estimates the current costs of long Covid — the combination of health care costs and lost earnings. Its survey found that the average health care costs accumulated by people disabled by long Covid are close to $18,000 per person annually; multiplying this figure by the number of disabled long-haulers gives an estimate of the health care costs. The lost earnings model calculates the total amount of lost income based on the duration of lost work capacity by looking at the 44 percent of the long-hauler sample that is unemployed and the 51 percent who are only able to work part time.
Impact on the Labor Force
The number of expected DLC cases in each state was measured as a percentage of that state’s total labor force. As you might guess, the breakdown by state reveals some major differences. For example, in the second column of the table on page 28, we show state labor force participation rates (LFPRs), defined as the labor force as a percentage of the non-institutionalized civilian population over 16 years old. Although the national LFPR was 62.2 percent in January 2022, state rates ran from lows of 55 percent in Mississippi and West Virginia to the high 60s in North Dakota and Nebraska, and 72 percent in Washington, D.C.
The table also shows the estimated number of DLC cases and costs in the context of selected labor force metrics for each state. The size of the labor force relative to the workingage population is shown in the second column. The job-opening rate, defined as unfilled positions as a share of those working, offers a hint of the macroeconomic consequences of the rise in disabled workers. Column 4 calculates the number of DLC cases as a percentage of the labor force, while column 5 calculates the average burden per worker of DLC by dividing the cumulative cost by labor force levels. Column 6 compares these burdens against the national average.
Considering cases as a percentage of the labor force (rather than as a percentage of the general population) reflects the differences in labor force participation around the country. For example, Rhode Island, which has the highest DLC rate, has a middling labor force participation rate. So DLC cases as a share of the labor force total 6 percent, double the shares in states with low infection and high participation rates. In North Dakota, which has a strong labor force participation rate but the second highest infection rate, the labor force share of infections is 5 percent.
Next is the DLC cost burden divided by the size of the labor force. Using the conservative case numbers from the Reported Case Model, the national average is $2,400 per worker. But the burden varies widely: Maine’s figure is $1,400, just 57 percent of the national average, while the figures in five states (Alaska, Arkansas, Mississippi, Rhode Island, South Carolina) exceed $3,000 per worker.
We’ve included the national averages to add context for the state results. For example, although the DLC rate for California is average, the job openings rate is lower than the national average, which suggests California employers are having relatively less difficulty filling positions. Whereas in other states, notably Rhode Island, South Carolina and Tennessee, both the openings rate and the DLC case rate are above average, implying a greater macro impact. We did not show the serology model estimates due to the limitations of this data, but they would tell the same story in more dramatic fashion.
Putting Work-first Strategies First
The fact that large numbers of Americans have been affected by DLC points first and foremost to the need for changes to the U.S. disability benefit system. Pretty much everyone agrees that the system has failed in its first priority of keeping disabled workers on the job. Just 31 percent of those with a disability, age 16 to 64, are employed, compared to about 73 percent who do not have a disability. Consider, too, that the involuntary unemployment rate for those with disabilities is twice that of those without. Many of those newly disabled by long Covid held productive jobs and could again, but their illness undermines their initiative in a variety of ways. Being creative about how to retain those with DLC in the workforce would yield a bonus on top of the direct impact, providing a path for millions of others living on disability benefits to get back to work as well.
Two factors jump out that are crucial to any analysis of policies related to DLC. First, early reports indicate that substantial numbers of DLC sufferers would be able to work on some days but not on others. Second, there is growing research showing that achievement begets more achievement: with appropriate medical care and accommodations, people who live with chronic illness for which there is no timeline for recovery may gradually increase their energy envelope and accomplish an increasing number of tasks each day.
Disability is thus not an immutable state but depends on the economic, cultural and social environment of the worker as well as their health. When payments are restricted to those with total and permanent impairments, the system cannot effectively serve a population whose illnesses ebb and flow. Creating disability categories for those needing partial assistance would make it possible for the partially impaired to stay in the labor force.
That’s easier said than done, of course. Enabling people with DLC to remain in the labor force without further impairing their health is a challenge, as we know that “push and crash” can impede recovery. And employers, not just government program administrators, will need to make real efforts to accommodate the needs of their workers. In many cases, this will require a change in workplace culture that may ultimately prove widely beneficial and be embraced by workers and employers alike. Indeed, creating a path to work for individuals with disabilities and chronic illness could be part of the solution to the broader demographic problem of long-term decline in labor force participation.
Carrots and Sticks
State employment agencies have long given “experience ratings” to private employers, tying unemployment insurance premiums to layoff patterns. Mary C. Daly and Richard Burkhauser, of the San Francisco Fed and Cornell University, respectively, want to do much the same thing with disability fund contributions: experience-rating disability contributions would give employers incentives to accommodate and rehabilitate employees with disabilities. They also suggest offering a carrot in the form of reduced Social Security Disability Insurance taxes to employers who make accommodations for workers.
Such reforms have worked elsewhere. In 2002 after decades of failing to rein in the cost of their disability system, the Dutch transformed it by making cash benefits a last resort. They increased incentives for both employers and employees to use accommodations and rehabilitation in order to stay on the job or get back to work following the onset of disability.
Workers with disabilities became the responsibility of their employers for two years, and during that time they could only be dismissed if they refused “reasonable work requirements.” Firms were given best practices to implement and paid premiums covering the first 10 years of a partial disability benefit. It all paid off in terms of lower rates of longterm disability and lower program costs.
Sweden instituted similar changes in 2000, bringing rehab and vocational trainers in early and requiring reviews at three, six and 12 months. These early interventions and accommodations stemmed the flow of new applicants into long-term disability. And it turned out they were pushing on open doors: many of those with new disabilities wanted to work, were capable of work and did work when given appropriate support. Note that benefits accrue to employers as well as employees. Providing rehab and vocational support services to employees with new disabilities can potentially prevent the loss of difficult-to-replace talent.
Thanks to DLC, this crisis in slow motion enveloping home health care may soon become a crisis on steroids as family caregivers cannot return to work because they cannot find replacement caregivers.
The convoluted requirements of our current system have the unintended consequence of both discouraging workers with disabilities from staying in the labor force and creating disproportionate barriers to benefit access for those with complex, hard-to-diagnose conditions like postinfection illnesses. The system doesn’t recognize partial disability, which is already emerging as a common characteristic of long Covid. Moreover, capping what someone drawing disability benefits can earn prevents people from working as much as they can, when they can.
Although those who receive disability benefits do technically have work options, the pages on which the Social Security Administration outlines the steps required to return to disability insurance after a failed work stint are littered with the phrase “you may be able,” not “you will be able.” Thus, recipients are penalized for trying employment, since a job that doesn’t work out can cause a recipient to lose all support.
Richard Burkhauser and colleagues push back against the most common opposition to reform — that millions of disabled workers rely on disability transfers to stay out of poverty — with evidence from European experiments. Specifically, prioritizing accommodations for workers with disabilities can increase employment and improve personal outcomes, especially when they replace programs like Social Security Disability that create barriers to working. Beyond the cost savings, such reforms would restore the dignity of millions who have been forced to opt for the security of permanent disability benefits.
Wages as Values
Mary Daly, a professor of social policy at Oxford University, has related insights into this topic. She researches the value of oftendisdained personal care work, noting that in the U.S. and UK, care work tends to be underpaid and written off as an “unproductive” sector of the economy. Daly sees the looming long Covid crisis as an opportunity to rethink this.
Consider the fact that leisure and hospitality industry workers in the United States have received above-average pay increases of 16 percent versus the 12 percent national average since February 2020. But home health care workers’ earnings, on average about onefourth below the average of the private sector, are up just 10 percent over this span.
The failure to pay home health care workers a living wage is collectively myopic. In September 2021, the Bureau of Labor Statistics projected home health and personal care aides to be the sector with the largest numerical growth over the next decade, making them both the most in demand and among the lowest paid.
The depressed wages of the sector are not only myopic but possibly illegal, since many home health care workers are pressed to sign contracts that limit their ability to switch jobs to higher-paid work. And thanks to DLC, this crisis in slow motion enveloping home health care may soon become a crisis on steroids as family caregivers cannot return to work because they cannot find replacement caregivers or leave relatives with long Covid to return to jobs.
If Forecasts Matter…
If the number of DLC working-age Americans ends up topping 7 million (as suggested by our conservative reported case model estimate), the number taken out of the labor force will almost be as large as the number of jobs lost (temporarily) in the Great Recession of 2008. If the number ends up topping 14 million (as suggested by projecting DLC from seroprevalence figures), the impact will be seismic in scope and scale.
In March 2022, the Bureau of Labor Statistics estimated there were about 11 million unfilled jobs in the United States. To characterize that figure as an all-time high doesn’t do it justice. The number of job openings as a share of total employment reached 7 percent, more than double the average before the pandemic. The impact of post-infection disability may lack the drama of the overnight decline in the labor force at the onset of the pandemic, but the grinding effects of DLC will almost certainly depress the economy’s potential for growth.
The Road Ahead
If even our conservative models of the damage done by DLC prove accurate, the aftershocks from Covid-19 will rupture our social safety net as well as ruin the finances of millions of families across America. Indeed, these admittedly back-of-the-envelope calculations are like the tips of icebergs, disarmingly low-profile indicators of the systemic shocks to come. And there’s more to worry about: on top of the aforementioned challenges posed by long Covid, the Urban Institute recently projected that 13 million to 14 million Americans are slated to lose Medicaid coverage in the coming year.
Managing DLC is going to be a colossal test for the nation, but one that is not beyond our economic means to meet. The bigger question is whether our fractured society has the will to do the right thing for millions of Americans and their families who will suffer the consequences of Covid-19 for years or decades to come.