Recommendation for Adoption and Implementation
of the 2024 NASEM Long COVID Definition.
C19LAP urges the rapid adoption and implementation of the 2024 NASEM Long COVID Definition, and encourages all stakeholders, especially patients, caregivers, clinicians, researchers, support services, health agencies, and government, to read the full report. Inconsistent terminology and meaning has limited progress and the generalizability of research findings, inhibiting patients from obtaining the recognition, care, and support they need. This definition should be applied to clinical care and diagnosis, eligibility for health services, insurance coverage, disability benefits, and school or work accommodations, public health, social services, policy making, epidemiology and surveillance, private and public research, and public awareness and education. It should also be utilized by safety net programs, including but not limited to, payers, workplaces and employers, academic institutions and educators.
Long COVID is a Global Public Health Crisis
Join Us In The Fight
About Long COVID
What is Long COVID
Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems. LC can affect children and adults, regardless of health, disability, or socioeconomic status, age, gender, sexual orientation, race, ethnicity, or geographic location. LC can follow asymptomatic, mild, or severe SARS-CoV-2 infection and can be continuous from the time of acute SARS-CoV-2 infection or can be delayed in onset for weeks or months following what had appeared to be full recovery from acute infection.
LC can impact every organ system including the brain, gastrointestinal tract, heart, lungs, and immune system. It can last months to years to life, ranging from mild to severe and can present in multiple ways:
-
As singular or multiple symptoms such as, but not limited to, shortness of breath, cough, persistent fatigue, post-exertional malaise, difficulty concentrating, memory changes, recurring headache, dizziness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.
-
As singular or multiple diagnosable conditions such as, but not limited to, interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, anxiety, migraine, stroke, blood clots, chronic kidney disease, postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), diabetes, and other autoimmune disorders such as lupus, rheumatoid arthritis, and Sjogren’s syndrome.
Important Features of LC:
-
LC can follow asymptomatic, mild, or severe SARS-CoV-2 infection. Previous infections may have been recognized or unrecognized.
-
LC can be continuous from the time of acute SARS-CoV-2 infection or can be delayed in onset for weeks or months following what had appeared to be full recovery from acute infection.
-
LC can affect children and adults, regardless of health, disability, or socioeconomic status, age, sex, gender, sexual orientation, race, ethnicity, or geographic location.
-
LC can exacerbate pre-existing health conditions or present as new conditions.
-
LC can range from mild to severe. It can resolve over a period of months or can persist for months or years.
-
LC can be diagnosed on clinical grounds. No biomarker currently available demonstrates conclusively the presence of LC
-
LC can impair individuals’ ability to work, attend school, take care of family, and care for themselves. It can have a profound emotional and physical impact on patients and their families and caregivers.
Important Terminology:
Using consistent terminology is as important as using a consistent definition.
Long COVID -
Patient-developed term and its simplicity and familiarity can facilitate communication within and between the scientific community and public.
Infection-associated chronic condition (IACC) –
Applies to a variety of chronic conditions that can be triggered by viruses, bacteria, fungi, or parasites. Use of this term highlights the ongoing nature of Long COVID and its association with a triggering infection without conveying any unwarranted conclusions about pathobiological mechanisms.
Disease state -
To stress the systemic reality of Long COVID.
Definition and Report Highlights:
Patient-centeredness was an instrumental part of this process, and Long COVID patient developed terminology was prioritized, such as making Long COVID the formal name over several others that have previously been used (Long-Haul COVID, PASC, PACS, Chronic COVID), as well as the term infection-associated chronic conditions (IACC’s) used to represent the family of chronic conditions resulting from several forms of infections, whether viral, bacterial, fungal, or parasitic. Disease state was chosen to represent the severity of the ongoing, systemic nature of Long COVID.
The definition applies to both adults and children, regardless of health, disability, or socioeconomic status, age, gender, sex, or sexual orientation, race, ethnicity, or geographic location- recognizing that social determinants of health and structural inequalities intersect to create health disparities.
There may be several mechanisms involved in Long COVID, such as immune dysregulation, autoimmunity and immune priming, viral persistence, blood clotting and endothelial abnormalities, dysfunctional neurological signaling, and microbiota dysbiosis. Given the heterogeneity of Long COVID presentation, there may not be one causation for the development of long-term health consequences from COVID-19 infection. For this reason, it is also important to study other similar Infection-Associated Chronic Conditions to better understand the body's response to infections and the potential mechanisms that may be at play.
The definition does not require a positive COVID test because no test has perfect sensitivity, and because the rates of false negatives on antigen and PCR tests vary with time and other factors. As a patient-advocate, I also emphasize that society is not actively testing as they should be, given the downplaying of COVID-19, including messaging that COVID is just a cold, leading people to not test.This leads to less documentation and data to follow, with more people lacking the needed care and support services. Additionally, equity plays a significant role in a person's access to acute-COVID testing, access to evaluation for Long COVID, willingness of clinicians to diagnose a particular patient, access to insurance benefits, and patient’s fears of stigmatization.
The definition does include POTS and ME/CFS, among others, as examples of diagnosable conditions that can be part of the picture of Long COVID. These and other potentially overlapping conditions are compatible with the diagnosis of Long COVID. For example, patients may be diagnosed with POTS and Long COVID or Long COVID and new onset rheumatoid arthritis. Long COVID is an umbrella term and can be diagnosed alongside associated conditions. Long COVID is not a diagnosis of exclusion.
The definition specifies a minimum duration of three months, whether consistent or relapsing and remitting, to qualify as Long COVID, however, a clinician should recognize, acknowledge, treat, and monitor concerning symptoms before the three-months mark and still document ICD-10 U09.9. The committee also chose not to include a maximum latency period due to its continued ambiguity. For example, there are comparisons to the development of MS years to decades after an EBV infection, or the development of cancer years to decades after an HPV infection.
Long COVID has significant medical, social, and economic impacts and the definition firmly acknowledges the profound impact of Long COVID on function and the ability of patients to work, attend school, take care of family, and themselves.
It is essential for researchers to try to adhere to definition as best as possible when choosing inclusion/exclusion criteria and strongly justify alterations so that the data remains meaningful and further contributes to our understanding of and solutions to Long COVID.
Recommendation for Adoption and Implementation
of the 2024 NASEM Long COVID Definition.
C19LAP urges the rapid adoption and implementation of the 2024 NASEM Long COVID Definition, and encourages all stakeholders, especially patients, caregivers, clinicians, researchers, support services, health agencies, and government, to read the full report. Inconsistent terminology and meaning has limited progress and the generalizability of research findings, inhibiting patients from obtaining the recognition, care, and support they need. This definition should be applied to clinical care and diagnosis, eligibility for health services, insurance coverage, disability benefits, and school or work accommodations, public health, social services, policy making, epidemiology and surveillance, private and public research, and public awareness and education. It should also be utilized by safety net programs, including but not limited to, payers, workplaces and employers, academic institutions and educators.
How Many People Have Long COVID?
Research has presented varying estimates of Long COVID with most falling between 10-35% of those infected with COVID-19 developing Long COVID. Estimates vary due to the varying definitions used for Long COVID, a problem we hope is resolved with adoption and implementation of the of the 2024 NASEM Long COVID Definition. A U.S. Census Bureau and the National Center for Health Statistics Household Pulse Survey showed as of March 5 to April 1, 2024, about 17.6 percent of all U.S. adults had ever experienced Long COVID. Overall, research and indications on the ground point to the prevalence of Long COVID in adults and pediatrics being approximately one in five, or 20%, of people who develop COVID-19, putting estimates at over 60 million people in the U.S. with some form of Long COVID, from singular symptoms, to multiple diagnosable conditions, ranging from mild to severe. Research also supports a higher prevalence of Long COVID in women, minority and transgender communities, and those impacted by social determinants of health, which are the non-medical factors that influence health outcomes. It is essential to note that reinfections increase the risk of developing Long COVID, despite previous experience with a COVID-19 infection, and all efforts available should be taken to help prevent an infection or reinfection. Research shows that having multiple COVID-19 infections increases the risk of developing Long COVID. In support of this, an analysis from the U.S. Department of Veteran Affairs national healthcare database found that individuals with one or more reinfections (40,947) compared to those with a single infection (443,588), had increased risk of hospitalization, all-cause mortality, and sequelae in both acute (<30 days) and post-acute (>30 days) phases after infection.
Potential Long COVID Population per U.S. State and Territory
Alabama: 4,934,193 / 5 = 986,839
Alaska: 731,158 / 5 = 146,232
Arizona: 7,520,103 / 5 = 1,504,021
Arkansas: 3,038,999 / 5 = 607,800
California: 39,538,223 / 5 = 7,907,645
Colorado: 5,812,069 / 5 = 1,162,414
Connecticut: 3,605,944 / 5 = 721,189
Delaware: 989,948 / 5 = 197,990
Florida: 21,993,000 / 5 = 4,398,600
Georgia: 10,799,566 / 5 = 2,159,913
Hawaii: 1,407,006 / 5 = 281,401
Idaho: 1,900,923 / 5 = 380,185
Illinois: 12,812,508 / 5 = 2,562,502
Indiana: 6,805,985 / 5 = 1,361,197
Iowa: 3,190,369 / 5 = 638,074
Kansas: 2,937,880 / 5 = 587,576
Kentucky: 4,509,394 / 5 = 901,879
Louisiana: 4,657,757 / 5 = 931,551
Maine: 1,362,359 / 5 = 272,472
Maryland: 6,185,278 / 5 = 1,237,056
Massachusetts: 7,029,917 / 5 = 1,405,983
Michigan: 10,084,442 / 5 = 2,016,888
Minnesota: 5,706,494 / 5 = 1,141,299
Mississippi: 2,961,279 / 5 = 592,256
Missouri: 6,169,270 / 5 = 1,233,854
Montana: 1,084,225 / 5 = 216,845
Nebraska: 1,961,504 / 5 = 392,301
Nevada: 3,143,991 / 5 = 628,798
New Hampshire: 1,377,529 / 5 = 275,506
New Jersey: 9,267,130 / 5 = 1,853,426
New Mexico: 2,115,877 / 5 = 423,175
New York: 19,336,776 / 5 = 3,867,355
North Carolina: 10,701,022 / 5 = 2,140,204
North Dakota: 770,026 / 5 = 154,005
Ohio: 11,747,694 / 5 = 2,349,539
Oklahoma: 3,986,639 / 5 = 797,328
Oregon: 4,289,439 / 5 = 857,888
Pennsylvania: 12,804,123 / 5 = 2,560,825
Rhode Island: 1,097,379 / 5 = 219,476
South Carolina: 5,277,830 / 5 = 1,055,566
South Dakota: 903,027 / 5 = 180,605
Tennessee: 7,001,803 / 5 = 1,400,361
Texas: 29,527,941 / 5 = 5,905,588
Utah: 3,337,975 / 5 = 667,595
Vermont: 643,503 / 5 = 128,701
Virginia: 8,642,274 / 5 = 1,728,455
Washington: 7,796,941 / 5 = 1,559,388
West Virginia: 1,778,070 / 5 = 355,614
Wisconsin: 5,919,738 / 5 = 1,183,948
Wyoming: 582,233 / 5 = 116,447
U.S. Territories
Puerto Rico: 3,285,874/ 5= 5: 657,175
Guam: 168,485/ 5= 33,697
U.S. Virgin Islands: 104,578/ 5 20,916
Northern Mariana Islands: 51,433/ 5= 10,287
American Samoa: 49,437/ 5= 9,887
Assuming the rate of 20% developing Long COVID holds steady across each state and territory
Impacts of Long COVID
Limitations and Death
20% of people who get COVID, develop Long COVID. As reported in the U.S. Census Bureau and the National Health Statistics’ Household Pulse Survey data (March 5- April 1, 2024) 23.8% of U.S. adults currently experiencing Long COVID were estimated to have significant activity limitations and 78.7% were estimated to have any activity limitation from Long COVID (CDC,2024). Long COVID is also responsible for the deaths of over 5,000 people according to the CDC. Death rates were higher among men than women, in those over 85, and in American Indian and Alaskan Natives.
U.S. Labor Force
Economist David Cutler estimated that Long COVID has caused 3.5 million people to leave the labor force as of 2022. Assuming Long COVID lasted 5 years with no change in severity, and prevalence estimates at that time, Cutler estimated a cost of $3.7 trillion in lost QALY’s, lost earnings, and increased medical spending. An April 2024 analysis by the Economist Impact, found that Long COVID symptoms have prompted an estimated 1.5 billion hours lost and a potential cost of $152.6 billion in 2024.
Children and Education
Long COVID is also impacting children just as severely as adults.Children with Long COVID face high absenteeism rates and are often academically punished, while parents face truancy and absenteeism consequences, sometimes even threatened with legal repercussions. Even children who miss school because of acute COVID-19 infections are facing discrimination and academic penalty because they are sick, or are trying to avoid infecting others. We continue to slowly see health and developmental issues arise in children infected in-utero, as babies, school-aged children, and teens. It is important for adults to screen for and be cognizant of Long COVID, as many children are unable to verbalize or express what they are experiencing.
Disability
Long COVID can have serious impacts on employment. An analysis at the University of Southern California’s longitudinal survey, understanding America Study, found that 25.9% of people with Long COVID in mid 2021 reported that their symptoms affected their employment or work hours; these affected individuals worked 50% fewer hours compared to people who never had COVID-19. In a December 2021 survey within the COVID-19 Longhauler Advocacy Project Facebook Group, 44% of respondents said they were no longer able to work with 67% of them for over a year, and 51% reported reduced work hours, with 63% for over a year. Additionally, 41% of respondents said they had or planned to filed for Social Security Disability. In a recent May-June 2024 survey from C19LAP, nearly 43% of respondents (1,050) said they had applied for Social Security Disability.
Healthcare System
Long COVID has also put an unprecedented burden on our healthcare system, and healthcare personnel. The U.S. healthcare system was overwhelmed prior to the pandemic, and now, it faces an influx of tens of millions of people with Long COVID and its associated conditions. There are not enough clinicians nor is there enough time to care for the number of patients that exist. In addition to Long COVID patients, there are many people needing medical care, who forwent care due to social distancing, who are facing new, and often more progressive, conditions due to delayed care. Lastly, the level of coordination needed in Long COVID care due to its heterogeneity is not something the U.S. healthcare system was designed to handle. It is costly, time consuming, and burdensome to the patient, the clinician, the facility, and insurers.
National Operations
Long COVID is impacting our national operations, and this issue will only be compounded with time, as more and more are infected, and reinfected, increasing the incidence of Long COVID, its associated conditions, and its systemic impacts. Long COVID impacts members of Congress, the military, our first responders, our healthcare workers, and our educators. It impacts our children, our parents, our partners, our neighbors, our co-workers, and our friends. Long COVID impacts everyone, and has far reaching, systemic and compounding consequences. COVID-19, and therefore Long COVID, are not going away any time soon, and we will see both national and global consequences for years, decades, and generations to come. The COVID-19 pandemic is still very much active and ongoing. It did not end. We do not have the tools, and we are not closer to prevention, treatment, or cures for Long COVID. Long COVID is a serious, global public health crisis. It deserves immediate and serious attention and action. Join us in the fight.
