The existence of (COVID-19) became public knowledge in December, 2019. Since then, doctors have learned much more about the long-term effects of COVID-19. Although most COVID-19 patients recover within several weeks, some people continue suffering from “long COVID”.
Long COVID is characterized by the development of new symptoms and/or recurring symptoms. In fact, many long COVID patients become so debilitated by their symptoms that they are no longer able to work.
For this reason, the Biden administration’s Department of Health and Human Services (Office for Civil Rights) and the Civil Rights Division of the Department of Justice have determined that people with long COVID may be eligible for disability benefits for under Titles II and III of the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973 and Section 1557 of the Patient Protection and Affordable Care Act.
What is Long COVID and Who are “Long Haulers”?
Now referred to by the U.S. National Institutes of Health as post-acute sequelae of COVID-19, long COVID affects around 10 to 30 percent of people with coronavirus. Doctors aren’t sure why some people become “long haulers” and why some recover from COVID-19 without further symptoms. But, they do know now that long COVID is real and making people more seriously ill than originally thought.
Individuals with long COVID are called long haulers because they suffer serious health issues for months after their initial COVID-19 infection. Some common symptoms that long haulers report include:
- Extreme fatigue
- Rapid heart beat (tachycardia)
- Continuing (or worsening) chest discomfort/chest tightness
- Difficulty breathing/shortness of breath
- Joint/back/body pain
- Brain “fog” (inability to concentrate/focus/access short term/working memory)
- Severe anxiety and depression
- Tinnitus/buzzing noises in the head
- Loss of smell and taste
- Various degrees of heart, lung, circulatory and/or kidney damage
- Restless leg syndrome
- Tingling and numbing in the extremities (hands, feet, fingers)
This is not an exhaustive list of long COVID symptoms. Less common but more disturbing symptoms of long COVID involve schizophrenia and other psychiatric disorders. Researchers think a serious viral infection like COVID-19 can overwhelm the immune system. This results in widespread inflammation that kills brain cells and interferes with brain chemistry. Consequently, some long haulers are reporting debilitating mental illnesses, including major depression and anxiety.
The director of the National Institute of Allergy and Infectious Diseases Dr. Anthony Fauci has stated that long COVID may be similar to chronic fatigue syndrome (CFS). Lyme disease, SARS and mononucleosis are known to trigger CFS in some people. Moreover, symptoms of CFS are comparable to symptoms of long COVID, such as constant fatigue, body pain, brain fog and psychiatric disorders.
How is Long COVID Diagnosed?
A clinical diagnosis of long COVID is necessary to begin the process of applying for disability benefits. A doctor will need to provide documentation that proves a patient has long COVID. In addition to testing for COVID-19 antibodies, doctors must show the patient has not returned to their pre-infection level of health. Moreover, further testing will be needed to prove a long hauler’s symptoms are not due to medical conditions unrelated to long COVID.
Who is More at Risk for Long COVID?
People who are hospitalized due to COVID-19 are more at risk of developing long COVID. One study found that out of 147 patients hospitalized for coronavirus, nearly 90 percent reported long COVID symptoms after they were discharged. Another study reported that 75 percent of hospitalized COVID-19 patients suffer long-COVID symptoms six months after being discharged. Further research indicates that hospitalized COVID patients are also at risk for chronic viral pneumonia and heart inflammation.
How is Long COVID Being Treated by Physicians?
People with long COVID appear to have an abnormal immune system response to the virus. Even after they test negative for coronavirus, their immune systems keep releasing chemicals meant to fight viral and bacterial infections. Consequently, this lengthy, widespread inflammation can cause long COVID symptoms damaging to the body.
Various supportive treatments may be prescribed to long haulers that can help reduce the severity of symptoms. However, these treatments do not “cure” long COVID health issues. For example, glucocorticoid steroids are commonly used to treat general inflammation. Cholesterol drugs called statins can help protect blood vessels from inflammatory damage. Previously prescribed to treat HIV, CCR5 inhibitor medications may decrease the severity of inflammation caused by long COVID.
Supportive treatment will depend on the type of long COVID symptoms. However, doctors may need to provide proof that patients seeking disability have received at least one of these treatments. Failure to respond to treatment should be fully documented in the complete disability application for long COVID.
Filing for Long COVID Disability Under Section 1557, Section 504 and the American Disabilities Act
These laws define who is considered disabled due to having impairments that significantly “limit at least one major life activity”. The DHHS, in conjunction with the DOJ, have determined that long haulers may be eligible for disability benefits.
What are considered major life activities when it comes to applying for disability benefits for COVID? The DHHS and DoJ list the following major life activities:
Being able to interact with others, communicate effectively, concentrate and write are also considered major life activities. Federal government guidance on what is considered to be substantial limitations on these activities can be found at the DHHS. Highlights of the definition of substantial limitations include:
- Impairments do not need to restrict or prevent a person with long COVID from performing major life activities. Limitations do not need to be long-term, permanent or severe.
- Substantial limitations on major daily activities should be determined without the benefits of treatments or medications.
- Even when long COVID symptoms come and go, it is still considered a disability when symptoms limit one or more major life activities.
Rights of Individuals Eligible for Long-COVID Disability Benefits
People qualifying for benefits for COVID disability are protected under the same rights as people with other disabilities, as defined by the American Disabilities Act, Section 1557 and Section 504. According to DHHS, local and state legislators may need to change ways in which they make it easier for long haulers to perform part-time work, take college admission tests, etc.
Reasonable modifications suggested by the DHHS that state governments should consider include:
- Providing help at gas stations for long haulers who cannot pump their own gas
- Ensuring customers with long COVID have a place to sit in long lines without losing their place
- Permitting long haulers to own service animals
For more information about the civil rights afforded to people with long COVID, the Office for Civil Rights, Department of Health and Human Services, has a webpage explaining disability civil rights for COVID long haulers: https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html.
Summarizing New Guidelines for Long Haulers Who Need Benefits for COVID
- The Biden Administration now says that people with long COVID may qualify for disability benefits.
- Long haulers have the same rights afforded to people with non-COVID disabilities.
- The process of applying for long COVID disability benefits is similar to the process of applying for standard disability benefits.
- Eligibility for long COVID disability benefits is determined the same way eligibility for other disabilities is determined.