It is estimated that up to one in five adults who had COVID-19 are currently experiencing sequelae of SARS-CoV-2, also known as post-COVID conditions or Long COVID, defined as symptoms lasting three or more months after first contracting the virus. Symptoms can vary widely, involving respiratory, cardiac, neurologic, digestive and musculoskeletal systems, and can last from months to now years. Studies are in progress to better understand Long COVID and how many people are affected.
The most recent data from the CDC estimates that 35% of adults who had COVID-19 have experienced Long COVID. While it is more often found in those who suffered from severe COVID-19, even those with mild or asymptomatic infections can experience Long COVID.
More than 30% of those patients who were hospitalized go on to experience Long COVID six months after infection. Studies have shown that Long COVID is associated with increasing age, higher body mass index and female sex.
More data is needed on the impact of Long COVID on racial and ethnic minorities; however, it would not be unexpected for them to be disproportionately impacted as they are more likely to acquire COVID-19 and have worse outcomes. It is important to understand the epidemiology and symptomatology of Long COVID to better anticipate the needs of this patient population, including any resulting disability.
Diagnosis of Long COVID
Without a specific test or biomarker, it has been difficult to diagnose some of the more subjective symptoms related to Long COVID. Subsequently, patients may feel stigmatized without a formal diagnostic test to identify their condition. Studies have shown that one of the most prevalent symptoms of Long COVID is fatigue. Though there are validated scales to measure fatigue, and these have been employed in Long COVID clinics, these remain subjective scales. It is still imperative that a healthcare practitioner uses validated measures and follows them over time.
Persons with Long COVID, similar to persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, also may have significant post-exertional malaise. This means that they may be able to do an activity, but then one hour to 48 hours afterwards be confined to bed for up to a week. Other symptoms include, but are not limited to, shortness of breath, headache, sleep disturbances, lightheadedness, joint or muscle pain and depression or anxiety. These symptoms can be disabling and limit one’s ability to return to work.
Many Long COVID symptoms can be disabling and limit one’s ability to return to work.
Clinicians also should identify the most disabling symptoms, inclusive of autonomic signs and symptoms. These autonomic signs and symptoms include dizziness, tachycardia, palpitations, presyncope and syncope, orthostatic intolerance, cognitive dysfunction, paresthesias (numbness), exercise intolerance, lightheadedness, neck pain and fatigue. Although there is no current blood biomarker, it is still important that all signs, symptoms and diagnosis are documented in the patient’s chart and that clinicians use the new ICD-10 medical code for post-COVID conditions of U09.9 (which means post COVID-19 condition, unspecified).
Long COVID as a Disability
Long COVID can be a disability under the Americans with Disability Act (ADA), Section 504, and Section 1557, if it substantially limits at least one major life activity. Clinics serving patients with Long COVID have seen high amounts of paperwork regarding short- and long-term leave, Family and Medical Leave Act and disability insurance. Both the patient and provider have to work on several forms and send in supporting documentation such as medical records. This increases the burden on already exhausted healthcare workers and adds to the exhaustion of Long COVID patients as they navigate a complex system.
It is not uncommon for an insurance disability claim to be denied when the patient has complaints of fatigue, pain or brain fog, but much of the lab work has been normal. It is by far the case that much of the laboratory blood work is normal, as are other diagnostics such as electrocardiogram, echocardiogram or chest CT scan. Many abnormal findings in Long COVID are currently in the research stages and not available for testing to the general public, further complicating the process of disability qualification.
Furthermore, this process can take a long time for a patient. Almost universally, persons applying for Social Security disability are denied on the first request. If approved for disability benefits from the Social Security Administration, by law, payments cannot begin until a person has been disabled for at least five full months. Duration of benefits will continue as long as the medical condition has not improved, and the person is unable to work. If improvement is expected, continuing disability reviews are conducted typically starting six to 18 months after the date of becoming disabled.
Filling out disability forms increases the burden on an already fatigued healthcare workforce and adds to Long COVID patients’ exhaustion.
Meanwhile, those older adults affected by Long COVID may consider retiring early and collecting retirement benefits. During the first 18 months of the pandemic, an additional 2.4 million Americans retired than had been expected. More data is needed on the motivations behind this retirement boom, including how many of those who retired were affected by Long COVID. Given the current economy, a retirement portfolio may be significantly lower than it was just a few months ago, further increasing economic strain for some older patients. However, such patients may be eligible for the Social Security Disability Insurance program, which can help to bridge the gap between their last paycheck and the ability to collect retirement benefits.
When a person retires early, the zero earning years can negatively affect Social Security retirement benefit computation. The earnings record is frozen, however, if a person receives Social Security Disability Insurance. This “disability freeze” can be an important consideration in older adults disabled by Long COVID and nearing retirement.
It is important for healthcare providers to recognize the symptoms of Long COVID, document the impact on a patient’s ability to perform major life activities, and support patients throughout their recovery both medically and, when appropriate, administratively when it comes to disability eligibility. Being well-informed on options may allow patients to have more timely financial support during economic hardship.
Hannah Uhlig-Reche, MD, MPH, is a physiatry resident physician at the Long School of Medicine at the University of Texas Health Science Center at San Antonio, and Monica Verduzco-Gutierrez, MD, is a physiatrist, professor and chair of the Department of Rehabilitation Medicine, at the Long School of Medicine at University of Texas Health Science Center at San Antonio.