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Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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2

Overview of Long COVID and Disability

Frontera introduced the first panel of the workshop, in which speakers gave an overview of Long COVID and disability. These presentations, he said, were designed to explain the symptoms and mechanisms of Long COVID, to describe the burden of disease associated with Long COVID, and to explore the labor market trends during the COVID-19 pandemic. Following the presentations, Frontera moderated a panel discussion to further explore these topics.

WHAT IS LONG COVID?

Stuart Katz, professor of medicine and principal investigator for the RECOVER Clinical Science Core at New York University Langone Health, began the session by giving an overview of what is known about Long COVID, including the variety of symptoms, how it is recognized in clinical practice, and the risk factors for developing Long COVID. There are several terms used to refer to Long COVID, said Katz. The term Long COVID was initially coined and popularized by patient advocacy groups to describe long-lasting symptoms after an acute COVID-19 infection. The National Institutes of Health (NIH) introduced the term postacute sequelae of COVID-19 (PASC) to encompass the total health impact of COVID-19 over time, while the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) use the phrase post-COVID condition as an alternative to PASC. In addition, said Katz, a specific and rare type of Long COVID in children is multisystem inflammatory syndrome in children (MIS-C).

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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Long COVID Symptoms

Katz shared a figure that describes the natural history of SARS-CoV-2 infection (Figure 2-1).1 The acute phase lasts around 2 weeks for most people; during this time, fever and upper respiratory symptoms are common. A subgroup of people continue to experience symptoms after this initial phase; Katz said symptoms more than 4 weeks postinfection is the cutoff that is generally used to define Long COVID. At that point, these symptoms may be subacute, ongoing symptoms of the infection, or may become chronic, postinfection symptoms that can persist for months or years. The symptoms can affect a number of body systems and organs, from lungs and heart to joints and muscles.

Katz explained that SARS-CoV-2 has a unique mechanism of action; it enters the body through a receptor called angiotensin-converting enzyme 2, or ACE2, that is present in nearly all systems in the body, including the heart, brain, spleen, liver, blood vessels, gastrointestinal tract, kidneys, pancreas, and lungs (Figure 2-2). SARS-CoV-2 enters the body and begins to replicate in multiple systems, causing diverse symptoms and organ dysfunction. In acute COVID-19, said Katz, the lungs are the organs that are most prominently affected, but there are reports of dysfunction across organ systems in both acute and chronic phases.

In 2021, a systematic review of studies assessing long-term effects of COVID-19 (Lopez-Leon et al., 2021) identified more than 50 symptoms that can be present following an acute COVID-19 infection, including:

  • Fatigue (58 percent)
  • Headache (44 percent)
  • Attention disorder (27 percent)
  • Hair loss (25 percent)
  • Dyspnea2 (24 percent)
  • Ageusia3 (23 percent)
  • Anosmia4 (21 percent)
  • Postactivity polypnea5 (21 percent)
  • Joint pain (19 percent)
  • Cough (19 percent)
  • Sweat (17 percent)

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1 The novel coronavirus, or SARS-CoV-2, is the virus that causes COVID-19 disease.

2 Shortness of breath.

3 Loss of sense of taste.

4 Loss of sense of smell.

5 Rapid breathing.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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Image
FIGURE 2-1 Natural history of SARS-CoV-2 infection.
SOURCE: Reprinted by permission from Springer Nature, Nature Medicine 27(4), Nalbanian et al., 2021, p. 602, in Stuart Katz presentation, March 21, 2022.
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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Image
FIGURE 2-2 Body systems affected by SARS-CoV-2 infection.
NOTE: ACE2 = angiotensin-converting enzyme 2; PTSD = posttraumatic stress disorder; OCS = obsessive compulsive spectrum disorders.
SOURCE: Reproduced from Crook et al., 2021, p. 2, with permission from BMJ Publishing Group Ltd., in Stuart Katz presentation, March 21, 2022.
  • Memory loss (16 percent)
  • Nausea or vomit (16 percent)
  • Chest pain or discomfort (16 percent)
  • Hearing loss or tinnitus (15 percent)

Katz noted that while many people may occasionally experience some of these symptoms in everyday life, particularly fatigue, Long COVID patients report that it is an “unnatural type of fatigue” that prevents them from performing normal activities and does not improve with increased rest. The review study (Lopez-Leon et al., 2021) found that 80 percent of people report at least one symptom after the acute phase of COVID-19 and that the range of symp-

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

toms involved virtually every organ system. Data on how long post-COVID symptoms last are limited, said Katz. One study used a smartphone app to collect survey data and compare persons who tested positive with those who tested negative; those persons who tested positive were more likely to have symptoms persisting at 28 and 56 days following the onset of infection (Sudre et al., 2021). Katz noted that survey participants were young and ambulatory, so their experience may not be representative of the general population. Evidence on post-COVID symptoms, said Katz, demonstrates that symptoms can wax and wane over time. For some patients, symptoms may start during the acute phase and continue into the chronic phase; other patients may feel fully recovered after acute COVID-19 and begin to experience symptoms weeks or months after the infection. The mix of symptoms may vary over time as well, for example, a patient’s breathing may improve at the same time that their brain fog (difficulty concentrating) is increasing.

The variety and variability of symptoms make it challenging to recognize and diagnose Long COVID. There is no established diagnostic test for the transition from acute COVID-19 to Long COVID; some markers of inflammation from acute infection have been found to persist at least 28 days, said Katz. While COVID-19 infection is a necessary precursor to Long COVID, some patients lacked access to definitive testing, particularly in the early days of the pandemic.

Definitions of Long COVID

Because the science is incomplete at this time, Katz noted that the definition of Long COVID is variable and “arbitrary.” For example, some sources use a 3-month threshold from the date of acute COVID-19 onset (WHO, 2021), others use a 4-week threshold (CDC, 2021b), and still others define it differently (Haute Autorité de Santé, France, 2021; Nalbandian et al., 2021; NICE, 2020; Royal Society, 2020).

The WHO conducted a consensus-building exercise to develop a definition of Long COVID, said Katz; it reads:

Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction, but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time. (WHO, 2021, p. 1)

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

In the United States, the CDC uses the umbrella term post-COVID conditions to encompass the “wide range of physical and mental health consequences experienced by some patients that are present 4 or more weeks after SARS-CoV-2 infection, including by patients who had initial mild or asymptomatic acute infection” (CDC, 2021b). Katz quoted the CDC guidance concerning the diagnosis of post-COVID conditions, which states:

Objective laboratory or imaging findings should not be used as the only measure or assessment of a patient’s well-being; lack of laboratory or imaging abnormalities does not invalidate the existence, severity, or importance of a patient’s symptoms or conditions. (CDC, 2021b)

Further, the CDC guidance states: “Understanding of post-COVID conditions remains incomplete, and guidance for health care professionals will likely change over time as the evidence evolves.”

Long COVID Research

While evidence is still evolving, a number of risk factors can make it more likely that an individual will develop Long COVID, said Katz. These include a greater number of symptoms during the acute phase of COVID-19 infection, severe acute symptoms, hospitalization owing to COVID-19, and preexisting comorbidities. The effects of race, ethnicity, vaccination status, and different variants of SARS-CoV-2 on developing Long COVID are still uncertain.

Katz told workshop participants about a National Institutes of Health (NIH) research initiative to learn more about Long COVID. RECOVER (Researching COVID to Enhance Recovery) is a multisite observational study designed to increase understanding of the epidemiology and mechanisms of Long COVID,6 said Katz. The study aims to answer a number of questions:

  • How many people are getting Long COVID?
  • Why do some people get Long COVID and others do not?
  • What symptoms do people feel when they get Long COVID?
  • How long do people feel sick when they get Long COVID?
  • What causes Long COVID to occur?

The RECOVER study includes people with and without a history of COVID-19, and uses cohorts that include pregnant women and their infants, children, and adults. Participants may be enrolled at the time of acute COVID--

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6 More information about RECOVER can be found at https://www.recovercovid.org (accessed May 7, 2022).

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

19 infection or at any time after an infection. This design, said Katz, allows the study to collect information across the different variants and from different times of the pandemic. Participant recruitment is planned in all 50 states, and the study aims to enroll a diverse population that matches the impact of COVID-19 in the United States. Katz noted that NIH awarded RECOVER grants to sites that demonstrate strong connections to local communities and the ability to enroll diverse populations. In addition, RECOVER has both a national community engagement group and a community engagement toolbox to facilitate interaction with the sites.

RECOVER uses a tiered approach (Figure 2-3) that begins with screening tests of 40,000 participants; the screening examines symptoms, risk of PASC after COVID-19, and how pandemic-related stress may affect PASC. The second tier includes participants with symptoms (and appropriate healthy controls for comparison); this group of 10,000 will undergo additional testing. Finally, a smaller subgroup of 4,500 will undergo additional, more in-depth testing to gain insight into the mechanisms of PASC. In addition, the study integrates electronic health record data; Katz said that using these “real-world” data can help us understand the ways PASC affects people’s lives and support the development of new diagnostic tests and therapeutic targets.

Image
FIGURE 2-3 RECOVER study plan.
NOTE: PASC = postacute sequelae of COVID-19.
SOURCE: Stuart Katz presentation, March 21, 2022.
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

In closing, Katz summarized the main points of his presentation:

  • Long COVID is an umbrella term for the wide range of physical and mental health consequences experienced by some patients that are present 4 or more weeks after SARS-CoV-2 infection.
  • The most common post-COVID symptoms are fatigue, headache, brain fog, shortness of breath, hair loss, and pain.
  • Understanding of post-COVID conditions remains incomplete, and guidance for health care professionals will likely change as the evidence evolves.
  • NIH’s RECOVER initiative is designed to increase understanding of Long COVID and provide information to develop new diagnostic tests and treatment approaches for Long COVID.

BURDEN OF DISEASE

Early in the COVID-19 pandemic, the focus was on managing acute infections, preventing spread, and tracking case rates and deaths, said Theo Vos, professor of health metrics sciences at the Institute for Health Metrics and Evaluation (IHME) at the University of Washington. As the pandemic continued, reports of long-term symptoms began to surface. Many studies concentrated simply on identifying and listing symptoms, and there was no systematic approach to measuring symptom severity. Vos and his colleague, Sarah Wulf Hanson, research scientist at IHME at the University of Washington, set out to create a systematic approach for making epidemiologic estimates for Long COVID, with the aim of adding Long COVID to the Global Burden of Disease (GBD) estimates, which quantify health loss from diseases, injuries, and risk factors.7 Vos shared their preliminary estimates of Long COVID with workshop participants, noting that the estimates would soon be finalized and available following the workshop (see Hanson et al., 2022, for the final results).

Limitations of what could be derived from existing publications led him and Hanson to seek opportunities to collaborate with ongoing cohort studies in order to draw a more comprehensive picture of Long COVID. Vos and Hanson gained access to the individual records from 10 cohort studies from around the world, medical claims data in the United States, and data from 40 published sources. Vos said the focus is on three symptom clusters that affect a large proportion of patients: (1) fatigue, body pain, and depression/anxiety; (2) cognitive problems such as inability to concentrate or remember; and (3) ongoing respiratory problems. In each of these categories, the researchers

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7 More information about GBD can be found at https://www.healthdata.org/gbd/2019 (accessed June 10, 2022).

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

assigned different GBD disability weights depending on symptom severity. Vos noted that the estimates did not include the added risk of diseases already measured separately in GBD estimates (e.g., cardiovascular disease, kidney disease), and that the researchers made the assumption that asymptomatic infection does not lead to Long COVID. Vos discussed the rationale for this assumption later during the discussion.

Vos presented a selection of their preliminary findings. The first was an estimate of the duration of Long COVID, estimated separately for community cases and hospitalized cases. The median duration for those with mild/moderate infections was 121.5 days from 3 months after symptom onset (Figure 2-4), and the median duration for those who were hospitalized was 268.9 days from 3 months after symptom onset (Figure 2-5).

For people with symptoms that persisted beyond 3 months, Long COVID is more common in adults than children, more common in adult females than adult males, and more common in those who were hospitalized than those who were not. However, a great deal of heterogeneity exists in the studies, so these data have a large uncertainty interval. Using these data on recovery from COVID-19, Vos and Hanson ran models to develop estimates of the likelihood of experiencing Long COVID, based on a variety of factors. The probability of continuing to experience symptoms is greatest at 3 months, decreases over time, and varies by community, hospital, or intensive care unit COVID cases (Table 2-1). Vos noted there are considerable differences in risk between females and males, and while children have a lower probability of Long COVID, it is “far from trivial.”

Given these probabilities for ongoing symptoms, and the number of people infected with COVID-19 in the United States in 2020 and 2021, Vos and Hanson estimated the number of new cases of Long COVID in the United States. They estimated about 4.6 million8 new cases of Long COVID in the United States in 2020 and 2021, he said, using a minimum duration threshold of 3 months after an acute COVID-19 infection. One lesson from these estimates, said Vos, is that the vast majority of people who develop Long COVID had mild infections (86 percent). While the risk of developing Long COVID is lower for those with mild infections, the sheer number of mild infections makes this number quite high overall. Using disability weights, Vos and his colleagues estimate that on average, people lost 21 percent of their health while living in a state of Long COVID. This is equivalent, he said, to the disability weight of people with complete hearing loss or severe traumatic brain injury. For symptoms that persist beyond a year, Vos said the estimate is about 1.4 million9 cases of Long COVID. This distribution tilts slightly more

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8 The speaker updated this number after the presentation.

9 The speaker updated this number after the presentation.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Image
FIGURE 2-4 Duration of Long COVID among community mild/moderate COVID cases.1
1 The speaker updated this figure after the presentation.
NOTE: Cirulli et al any = Cirulli et al., 2020; CSS any = Sudre et al., 2021; CSS peds any = Molteni et al., 2021; Faroe any = Petersen et al., 2021; UK CIS any = UK CIS, 2021, and Ayoubkhani et al., 2021; UK CIS peds = Pediatric population in UK CIS, 2021, and Ayoubkhani et al., 2021; Zurich CC prosp any = Prospective population in Puhan et al., 2021; Zurich CC retro any = Retrospective population in Puhan et al., 2021.
SOURCE: Hanson et al., 2022, Appendix 1, p. 42, in Theo Vos presentation, March 21, 2022.
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Image
FIGURE 2-5 Duration of Long COVID among hospitalized COVID cases.1
1 The speaker updated this figure after the presentation.
NOTE: Becker et al any = Becker et al., 2021; CO-FLOW any = Bek et al., 2021; Sechenov STOPCOVID any = Osmanov et al., 2022, and Munblit et al., 2021; Sweden PronMed any = Hultström et al., 2021, and Ekbom et al., 2021; Zurich CC prosp any = Prospective population in Puhan et al., 2021; Zurich CC retro any = Retrospective population in Puhan et al., 2021.
SOURCE: Hanson et al., 2022, Appendix 1, p. 42, in Theo Vos presentation, March 21, 2022.
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

TABLE 2-1 Probability of Ongoing Symptoms at 3, 6, and 12 Months after Acute COVID-19a

Months Since End of Acute Episode
Females 3 Mo 6 Mo 12 Mo
Community* Children < 20 2.55% 1.26% 0.26%
Community Adults ≥ 20 9.26% 4.88% 1.24%
Hospital All Ages 33.64% 25.74% 13.94%
ICU All Ages 51.49% 42.08% 25.37%

Males
Community* Children < 20 2.55% 1.26% 0.26%
Community Adults ≥ 20 4.05% 2.05% 0.47%
Hospital All Ages 20.84% 15.25% 7.73%
ICU All Ages 35.56% 27.41% 15.00%
* Estimates for community cases among children are assumed the same for males and females
All Surviving Cases
Females 7.42% 4.05% 1.16%
Males 3.93% 2.10% 0.58%
Both Sexes 5.68% 3.07% 0.87%

a The speaker updated this table after the presentation.

SOURCE: Theo Vos presentation, March 21, 2022.

toward cases in which patients were hospitalized (20 percent), but the majority are still mild cases. About two-thirds of these cases are in females, and 70 percent are in people aged 20 to 64.

Vos shared the limitations of this research and the estimates. The data are sparse and heterogeneous, and relatively few studies are from low- and middle-income countries. Study protocols often lack follow-up to determine the “tail” of duration; only a few studies followed patients to the 12-month mark. Vos also said that symptom clusters used in the estimates may miss patients who have isolated symptoms. Lastly, these estimates do not include the heightened risk of diseases such as heart disease and stroke attributable to COVID-19 infection. Going forward, he said, important areas of research include the impact of Long COVID after 12 months and how the different variants may affect the risk and severity of Long COVID.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

Vos concluded with a summary of the implications of the data:

  • There is considerable risk of ongoing symptoms after acute SARS-COV2 infection.
  • The risk is highest in young adults and females, which is very different from the pattern seen in severe acute COVID-19.
  • The majority of Long COVID cases are in people of working age.
  • Around 24 percent of those with Long COVID at 3 months continued to have symptoms at 12 months.10
  • In the United States, in 2021, 720,000 people aged 20 and older reached the 1-year duration mark; in 2022, this number is estimated to be 520,000.
  • Recovery for the vast majority of long COVID cases occurs within a year.
  • Considerable support (e.g., rehabilitation, income) may be needed to help individuals with Long COVID transition back into the workforce when symptoms begin to wane.

IMPACT OF COVID-19 ON THE WORKFORCE

Rakesh Kochhar, senior researcher at Pew Research Center, gave workshop participants a broad overview of labor market trends for workers overall in the United States, as well as for the population of people with a disability. While labor market data do not identify people with Long COVID, he said, those who have Long COVID are likely represented in the population of people with a disability; unusual changes in the size of this population could signal the impact of the pandemic.

To begin, Kochhar discussed data comparing employment trends during the COVID-19 recession to trends during the Great Recession that began in 2008. There was a steep decline in employment in the spring of 2020, followed by a gradual return toward normal. During the Great Recession, in contrast, employment fell much more slowly and did not recover, even after 2 years. Similarly, said Kochhar, there was a sharp increase in unemployment at the beginning of the pandemic, with about 17 million people losing their jobs over the span of 2 months. Unemployment gradually declined but is still about 10 percent higher than in February 2020, he said. Unemployment during the Great Recession increased gradually and did not return to prerecession levels.

One key difference between the pandemic and the Great Recession, said Kochhar, is where job losses occurred (Figure 2-6). In the Great Reces-

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10 The speaker updated this figure after the presentation.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Image
FIGURE 2-6 Share of a sector in total loss in employment.
SOURCE: Rakesh Kochhar presentation, March 21, 2022, based on data from the U.S. Bureau of Labor Statistics.

sion, about half of the job losses came from the goods sector, which includes manufacturing, construction, and mining. The goods sector only accounts for around 10 percent of overall employment in the United States, said Kochhar, and many of these lost jobs were middle wage jobs that are “still gone for good.” In contrast, 87 percent of jobs lost during the pandemic came from the services sector; these were primarily low-wage workers who held jobs that did not offer the possibility of telecommuting. Women were hit harder by these initial losses, but parity has been restored in the longer run. Likewise, patterns of racial disparities persisted through the pandemic and the recovery. One “unusual” outlier, he said, was a spike in unemployment for Asian workers. These workers on average have high levels of education and low levels of unemployment, but many were in service jobs that were vulnerable during the pandemic (e.g., restaurants, dry cleaning). Comparing age groups, Kochhar said that the youngest workers were most affected; at one point, one in four workers aged 16 to 24 were unemployed. However, the ebb and flow of recovery has been similar for all age groups.

While the unemployment rate receives a great deal of attention, said Kochhar, the number of people who are not in the labor force at all is also an important indicator of labor market strength. There are around 100 million people currently not in the U.S. labor force, including those who are retired or otherwise not looking for or interested in work. The size of the labor force has not recovered to the extent that unemployment and employment have, said Kochhar; there are about four million more people not in the labor force compared to the beginning of the pandemic. Women have left the labor force at rates higher than men; Kochhar noted that women are more affected by

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

school and daycare closures than men. About half of the workers who have left—2.4 million—were 55 and older. Some of these departures, he said, were likely workers retiring earlier than they had planned.

Next, Kochhar presented data from the U.S Bureau of Labor Statistics focused on the population of people with a disability in the United States.11 About 31 million people aged 16 and over have a disability, which is around 700,000 people more than in 2019. This represents around 12 percent of the population. Hispanic adults account for a disproportionate share of the increase in the number of people with a disability, said Kochhar. Hispanics represent 17 percent of the adult population, and 12 percent of the population with a disability, yet they account for half of the recent increase in people with a disability. Another surprising development, he said, is that the number of young people (ages 16 to 24) with a disability increased by more than 200,000 people, accounting for close to one-third of the total increase in the population. Most people with a disability are not in the labor force and are not seeking work, said Kochhar. Out of 31 million, only around 7 million are in the labor force, working or looking for a job (Figure 2-7).

Image
FIGURE 2-7 Number of people ages 16 and older with a disability, in thousands.
NOTE: NILF = not in the labor force.
SOURCE: Rakesh Kochhar presentation, March 21, 2022, based on data from the U.S. Bureau of Labor Statistics.

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11 People with a disability reported having at least one of the following conditions: deaf or serious difficulty hearing; blind or serious difficulty seeing; difficulty concentrating, remembering, or making decisions; difficulty walking or climbing stairs; difficulty dressing or bathing; and difficulty doing errands alone.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

While the percentage of people with a disability who are employed is relatively low, employment has rebounded more quickly in this population compared to the population without disabilities (Figure 2-8). In the population of people without disabilities, the share employed is still several percentage points lower than in 2019, while in the population of people with disabilities, the share employed has nearly returned to prepandemic levels.

DISCUSSION

Following the presentations, Frontera moderated a question-and-answer session with panelists and workshop participants.

How should Long COVID be defined?

Vos replied that it is a matter of choice, noting that while his research uses the 3-month threshold suggested by WHO, the analyses can be conducted to make estimates at any period of time postinfection. Katz agreed that it is a matter of choice, saying that there are no strong data to support one definition versus another at this point in time.

Has the pandemic changed or accelerated any trends in the skills or abilities required for employment?

Kochhar said that he is not sure how things will play out in the next year or two, but that it is possible that the economy will be reshaped by changes in

Image
FIGURE 2-8 Percentage of population ages 16 and older that is employed.
SOURCE: Rakesh Kochhar presentation, March 21, 2022, based on data from the U.S. Bureau of Labor Statistics.
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

supply and demand. He noted that there was a shift toward a higher demand in the information technology sector during the pandemic.

Given that most Long COVID cases come from those with milder infections, what should clinicians be doing to follow up and investigate long-term symptoms in their patients?

“The most important thing for a clinician is to take this seriously,” said Vos. The biggest hurdle for those with Long COVID is to be taken seriously by medical practitioners, he said, so there is a need for education for physicians so they know that Long COVID is a common occurrence, even in patients with mild infections. Katz agreed, noting that it is critical for primary care providers to recognize patients’ symptoms and take them seriously.

Is there evidence about the length of time that it takes for post-COVID symptoms to return or relapse after they appear to have improved?

There are some data from symptom-tracking apps in the United Kingdom (Sudre et al., 2021), where people are asked to answer questions regularly about their symptoms, said Vos. These data give more of an idea of how symptoms change over time. Unfortunately, we do not have enough detailed data to quantify or model the waxing and waning of symptoms.

Is there any evidence about whether recurring COVID-19 infection increases the risk for Long COVID?

There is no evidence on this point, said Vos, but one might expect that additional contact with the virus may lead to additional risk or worsening of existing symptoms. Hanson added that future research will explore the effect of vaccination status on the risk of Long COVID.

In the model estimates, why was the decision made to assume that asymptomatic people do not develop Long COVID?

This decision, said Vos, was based on the fact that the small number of asymptomatic infections included in the cohort studies showed a very low proportion of cases that demonstrated the three symptom clusters, which are (1) fatigue, body pain, and depression/anxiety; (2) cognitive problems; and (3) ongoing respiratory problems. Further, it could not be determined whether the people were asymptomatic at the time of their test and remained asymptomatic, or whether they eventually developed symptoms. While the risk of Long COVID for asymptomatic individuals may not be zero, it appears to be significantly lower than for symptomatic individuals. Katz added that the RECOVER study is aiming to include a large proportion of asymptomatic individuals in the pediatric population, in order to better reflect the experience of this population. However, studying asymptomatic infection has many challenges, including how and when the infection is detected.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×

Given that many Long COVID symptoms are hard to diagnose or measure objectively (e.g., brain fog, fatigue), how should SSA evaluate health records to determine who meets the definition of disabled?

By the nature of these symptoms, said Vos, SSA will have to heavily rely on people’s self-reporting. However, patient reports can be collected in a more systematic way by using identified measurement scales and symptom questions, and evaluation thresholds can be set on these tools.

Is there a way to track the level of infiltration of the virus in different organs or body systems, and would this information be useful, given what is known about the correlation between severity and long-term symptoms?

The usefulness of this information, said Vos, depends on the mechanism that leads to Long COVID. There are a number of hypotheses for the mechanism; some posit that Long COVID is caused by virus remaining in the body, while others believe it is an immune system overreaction to a past infection that leads to the symptoms. If it is caused by an immune system overreaction, said Vos, quantifying virus in the organs will not be of much help. Moreover, he said, the fact that so many cases of Long COVID occur in patients with mild infections suggests that there are other mechanisms at play. Katz added that the RECOVER study is collecting data to help answer these questions; there is an autopsy cohort in which tissues will be examined for viral persistence, and there will be a large biobank with blood samples that can be examined to explore hypotheses about mechanisms.

Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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Page 13
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
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Page 14
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 15
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 16
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 17
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 18
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 19
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 20
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 21
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 22
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 23
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 24
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 25
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 26
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 27
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 28
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 29
Suggested Citation:"2 Overview of Long COVID and Disability." National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26619.
×
Page 30
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'Long COVID' refers to the wide range of long-lasting symptoms experienced by some patients after a SARS-CoV-2 infection. The most common symptoms include fatigue, headache, brain fog, shortness of breath, hair loss, and pain. At this time, there are many knowledge gaps related to Long COVID, including the prevalence of the condition, the impact of the symptoms on survivors' ability to function, and the long-term course of the condition. While many individuals with Long COVID recover within one year, others experience little or no decrease in symptom severity over time.

Long COVID symptoms can affect a person's ability to work and otherwise function in daily life, so people with the condition may need to utilize programs such as Social Security Disability Insurance (SSDI) and the Supplemental Security Income Program (SSI). The Social Security Administration (SSA), which administers both of these programs, requested that the National Academies of Sciences, Engineering, and Medicine host a public workshop to discuss research into the long-term health effects of COVID-19, their impacts on individuals and populations, and how the SSDI and SSI programs can support individuals who suffer disability as a result of Long COVID. This publication summarizes the presentation and discussion of the workshop.

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