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Suggested Citation:"1 Introduction." 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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1

Introduction

On March 21 and 22, 2022, the National Academies of Sciences, Engineering, and Medicine held a virtual workshop titled Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration. The workshop, which was sponsored by the Social Security Administration (SSA), was developed by a planning committee in accordance with the Statement of Task (see Box 1-1).1 This Proceedings of a Workshop describes the presentations from invited subject matter experts and panel discussions held during the workshop, including responses to questions posed by planning committee members, SSA representatives, and the general public. The speakers, panelists, and workshop participants presented a broad range of information relating to Long COVID and disability; Box 1-2 provides a brief summary of key points made by individual participants. Appendix A contains the reference list, Appendix B contains the workshop agenda, and Appendix C contains short biographical sketches of the workshop planning

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1 The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

Suggested Citation:"1 Introduction." 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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committee members and speakers. The speakers’ presentations and the webcast have been archived online.2

Research on Long COVID is in the early stages, and the information and guidance stemming from this research is evolving quickly. These proceedings highlight some of the emerging findings from various studies that seek to narrow the knowledge gaps. Workshop speakers provided a snapshot of the science on Long COVID as it relates to functioning and disability. Estimates of the percentage of people who may have Long COVID or who are at risk of developing Long COVID are important to understanding Long COVID’s effects on population health, the health system, and the labor force. Much research is focused on defining the prevalence of Long COVID in the U.S. population and on quantifying symptom duration, but the estimates vary widely. One meta-analysis and systematic review (Chen et al., 2022) that included 50 studies reported the prevalence of Long COVID among COVID-19 patients ranged from 9 percent to 81 percent, which the study authors said may be partly attributable to differences in sex, region, study population (e.g., hospitalized versus nonhospitalized patients), and follow-up. Chapter 2 of these proceedings describes one research institute’s collaborative efforts to develop prevalence estimates as well as estimates of the burden of disease for Long COVID. However, many questions still remain in this area as well as in other areas of Long COVID research. A consensus definition of Long COVID is needed to overcome barriers to understanding this public health problem.

Walter Frontera, planning committee member and professor of physical medicine and rehabilitation and physiology at the University of Puerto Rico School of Medicine, welcomed participants to the workshop. The purpose of the workshop, he said, was to discuss the most current information available on the long-term effects of COVID-19. The workshop featured subject matter experts and discussions of current and emerging research on the potentially disabling health effects of COVID-19 infection. In particular, presentations explored what is known about the long-term effects of a COVID-19 infection on survivors’ function and the possible implications for recovery and disability in the context of SSA’s disability programs.

SSA asked the National Academies to host this workshop, said Steve Rollins, acting associate commissioner at the SSA Office of Disability Policy, because it is the SSA’s responsibility to provide the most accurate evaluations possible for disability claimants, whether their ability to function is limited by “a well-understood and thoroughly studied impairment or some new condition with unknown mechanisms or uncertain etiologies” such as Long

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2 The workshop video can be viewed here: https://www.nationalacademies.org/event/03-21-2022/long-term-health-effects-stemming-from-covid-19-and-implications-for-the-social-security-administration-a-workshop (accessed June 6, 2022).

Suggested Citation:"1 Introduction." 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.
×
Suggested Citation:"1 Introduction." 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.
×

COVID. The long-term consequences of COVID-19 infection are being felt by hundreds of thousands of Americans, he said, and people are suffering. For those who are applying for disability benefits, it is the SSA’s obligation to “do the best evaluation we can with the knowledge we can gather,” said Rollins. To this end, this workshop will inform a better understanding of the symptoms of Long COVID, the populations that it affects, its effect on functioning and quality of life, and the state of current and emerging therapies and treatments.

STRUCTURE OF THE WORKSHOP

Frontera gave participants an overview of the structure of the workshop. In the first session, the expert panel set the foundation of the workshop by

Suggested Citation:"1 Introduction." 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.
×

providing an overview of Long COVID, including how it is diagnosed, the population affected, major research initiatives, and how the pandemic has affected the labor force. The second session delved more deeply into the disabling late effects of Long COVID in adults and children. Session three featured firsthand accounts of Long COVID from five individuals who shared their stories of illness, recovery, and the effect of Long COVID on their lives. The fourth session featured presentations on how function can be assessed in Long COVID survivors and what is known about the effect of COVID-19 on functioning and quality of life in adults and children. In the fifth session, speakers discussed clinical practices and system approaches for improving treatment for Long COVID, as well as approaches for overcoming barriers to inequities in Long COVID care. Finally, said Frontera, the sixth session explored the state of the science on treatment interventions and therapies for Long COVID. In this final session, workshop speakers offered their key insights and messages. This Proceedings of a Workshop follows the structure of the workshop.

OVERVIEW OF SSA DISABILITY EVALUATION

As background for workshop participants who were not familiar with SSA’s disability programs, Vincent Nibali, policy analyst at the SSA Office of Disability Policy, provided an overview. SSA administers two programs that provide benefits on the basis of disability, he said: the Social Security Disability Insurance Program (SSDI), and the Supplemental Security Income Program (SSI). Although these two programs have different nonmedical requirements for eligibility, said Nibali, both programs share the same medical criteria and go through the same sequential evaluation processes to determine initial eligibility.

For adults, said Nibali, disability is defined by statute as “inability to do any substantial gainful activity by reason of any medically determinable physical or mental impairment,” which can be expected to result in death or last for a continuous period of not less than 12 months (C.F.R. § 404.1505).3

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3 The definition of disability is described in Section 223(d)(1) of the Social Security Act as an “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months, or in the case of an individual who has attained the age of 55 and is blind (within the meaning of blindness as defined in section 216(i)(1)), inability by reason of such blindness to engage in substantial gainful activity requiring skills or abilities comparable to those of any gainful activity in which the individual has previously engaged with some regularity and over a substantial period of time” (Social Security Act, 42 U.S.C. § 423(d)).

Suggested Citation:"1 Introduction." 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.
×

Nibali noted that the “continuous period of not less than 12 months,” is called the “duration requirement,” and it has likely implications for the discussions at this workshop. While there are many people who report symptoms at 3 or 6 months following an acute COVID-19 illness, SSA is most interested in information about symptoms that persist for at least 12 months, and whether there is any correlation between markers of acute COVID-19 illness and the persistence of certain symptoms over time.

For children, a finding of disability is based upon having “marked and severe functional limitations” attributable to physical or mental impairments that are expected to cause death or last for a continuous period of at least 12 months (C.F.R. § 416.906). For both children and adults, said Nibali, the outcome of a disability evaluation depends upon the severity of functional limitations arising from the person’s impairment or combination of impairments, either because those functional limitations preclude work, or because they are marked and severe. SSA’s sequential evaluation processes use a series of specific questions to determine eligibility; these questions are designed to allow adjudicators to decide the clearest cases quickly. For example, Nibali said, the process starts by asking whether the person is engaged in substantial gainful activity; if the answer is yes, the person is not eligible. If the answer is no, the process continues in order to determine if the person has a medically determinable impairment that is severe and meets the duration requirement—that is, if the evidence shows an impairment that has more than a minimal effect on functioning. The third step, said Nibali, captures the most severe and obvious cases of disability by comparing a claimant’s impairments against the criteria in the SSA listing of impairments. If the individual meets these requirements, he or she is immediately considered disabled and eligible. If not, the adjudicator continues with the sequential evaluation process to a more in-depth functional analysis to determine the capacity of the individual to perform work, called “residual functional capacity.” This capacity is compared against the demands of past work of the individual, and against the work that exists in substantial numbers in the national economy.

Nibali emphasized the absence of Long COVID in the SSA listing of impairments does not mean that individuals will not be eligible for disability benefits, it simply means that the process moves forward to the functional analysis. Nibali said that SSA is interested in hearing about the potential for identifying Long COVID-related criteria that preclude work in all cases; including these in the listings would enable SSA’s rapid adjudication of some claims related to COVID-19.

Suggested Citation:"1 Introduction." 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 addition to evaluating initial eligibility, SSA is also tasked with identifying individuals who are no longer eligible for disability benefits, said Nibali. To capture this group, SSA regularly conducts continuing disability reviews (CDRs). The frequency of CDRs is based in part on how likely it is that an individual’s underlying impairments will improve over time. This is another area, said Nibali, in which the workshop presentations may be of critical assistance, because the existing information on recovery from Long COVID is minimal. Nibali closed by stating, “A greater understanding of the long-term effects of COVID-19 can contribute to our agency’s mission to provide the most accurate disability decisions as efficiently as possible.”

Suggested Citation:"1 Introduction." 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.
×
Suggested Citation:"1 Introduction." 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.
×
Suggested Citation:"1 Introduction." 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.
×
Suggested Citation:"1 Introduction." 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.
×
Suggested Citation:"1 Introduction." 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.
×
Suggested Citation:"1 Introduction." 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 1
Suggested Citation:"1 Introduction." 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 2
Suggested Citation:"1 Introduction." 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 3
Suggested Citation:"1 Introduction." 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 4
Suggested Citation:"1 Introduction." 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 5
Suggested Citation:"1 Introduction." 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 6
Suggested Citation:"1 Introduction." 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 7
Suggested Citation:"1 Introduction." 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 8
Suggested Citation:"1 Introduction." 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 9
Suggested Citation:"1 Introduction." 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 10
Suggested Citation:"1 Introduction." 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 11
Suggested Citation:"1 Introduction." 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 12
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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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