Public Health Law and Civil Rights Laws Must Work Together to Rise to the Challenge of Long COVID
By Elizabeth Pendo
Amid the ongoing COVID-19 pandemic, the need for public health laws and policies that align with and reinforce civil rights protections for disproportionately impacted populations is greater than ever. In particular, disability rights laws will be critical for responding to the millions of Americans who experience lasting or recurring symptoms after acute COVID-19 infection (commonly referred to as “long COVID”). This article will discuss the importance of the Americans with Disabilities Act (ADA) in protecting the rights of people with long COVID and other disabilities in the workplace, in health care, and in disability and other benefits in order to chart an equitable path forward.
Long COVID Impacts Millions of Working-Age Americans
While there are multiple definitions of long COVID, the National Research Action Plan on Long COVID establishes a broad working definition of “signs, symptoms, and conditions [that] are present four weeks or more after the initial phase of infection.” These effects may be multisystemic, episodic or progressive, and have severe or life-threatening impact long after infection. Common symptoms include: tiredness or fatigue, difficulty thinking or concentrating (“brain fog”), difficulty breathing, headache, dizziness, fast-beating or pounding heart, chest pain, cough, joint or muscle pain, depression or anxiety, fever, or loss of taste or smell. Some people also experience damage to multiple organs, including the heart, lungs, kidneys, skin, and brain.
Although estimates vary, a large CDC analysis found that one in five adults aged 18 to 65, and one in four adults aged 65 and older, have a health condition related to a previous COVID-19 infection. Federal survey data from 2023 and 2022 indicate that 15 percent of adults in the U.S. reported symptoms of long COVID at some point, and 6 percent reported current symptoms. Adults who are female, Hispanic, or bisexual or transgender were more likely to report currently having long COVID than other adults. In addition, almost 80 percent of people with long COVID reported limitations in daily activities (79 percent) which were often significant (27 percent).
It is not surprising, then, that long COVID has significant implications for the workplace. A 2022 report by the Brookings Institute estimates that of the 16.3 million working age Americans who currently have long COVID, two to four million are out of work due to long COVID.
The Americans with Disabilities Act
The ADA was enacted to address widespread discrimination against people with disabilities and to ensure equal opportunity in all areas of American life. The law protects a large and diverse group of people, which, in 2020, included 1 in 4 adults in the U.S. Title I of the ADA prohibits discrimination based on disability in employment. The law protects individuals with a physical or mental impairment that substantially limits a major life activity, those with a history of an impairment, and those who are regarded as having an impairment. The law’s protections in the workplace have been especially important during the COVID-19 pandemic, which has disproportionately impacted employment for people with disabilities and worsened pre-existing employment disparities they experience.
The Equal Employment Opportunity Commission (EEOC), the agency charged with enforcing the ADA’s employment provisions, has stated that long COVID can be a protected disability under the ADA. Other agencies have issued similar guidance for other disability antidiscrimination laws.
The ADA requires that employers provide reasonable accommodations, which are affirmative steps that enable employees with disabilities to do their jobs, within certain limits. Reasonable accommodation is determined on an individualized basis through a flexible, interactive process between the employer and employee. Because people with long COVID experience a wide range of symptoms at different levels of severity, an employer will need to consider the employee’s specific situation to determine how the ADA’s protections apply. For example, an employee with fatigue may need additional breaks or a different work schedule, while an employee with memory or concentration issues may need written instructions or a scheduling app.
Challenges to Accessing Long COVID Accommodations
Despite the ADA’s protections, people with long COVID symptoms face numerous barriers to accessing workplace accommodations and other benefits. Because standards for diagnosis, prognosis, and treatment of long COVID are still emerging, it may be difficult for individuals to secure sufficient medical documentation of their condition and need for accommodation. Currently, there is no test to diagnose long COVID, and it may be difficult or time-consuming for clinicians to recognize because of the wide range of symptoms. Difficulties in obtaining sufficient documentation and treatment will be compounded for individuals who already experience disparities in access to care and quality of care, including people with disabilities. Treatment of similar conditions in the past, such as chronic fatigue syndrome (now known as ME/CFS) suggests that patients may be met with stereotypes, assumptions, and lack of knowledge about long COVID. For example, some physicians continue to characterize the symptoms of long COVID as primarily psychological, and suggest treatment that is unhelpful or even harmful.
Employers may not be prepared to deal with an increased number of requests for accommodation based on long COVID, especially in industries or workplaces disproportionately affected by COVID-19 infection. As some have noted, employers may reject what they see as insufficient medical documentation of long COVID and needed accommodations. My prior research suggests that lack of knowledge and implicit or explicit bias may lead employers to shift employees with long COVID into private or public disability benefits rather than providing accommodations. The accommodation requirement also is subject to limitations. For example, employers can suggest alternative accommodations, and do not have to provide accommodations that involve significant difficulty or expense (undue hardship) or a significant risk of substantial harm to the employee or others regardless of accommodation (direct threat).
Although it is difficult to know how many people with long COVID request or receive workplace accommodations, a recent survey of nearly 3,800 supervisors found that 40 percent managed employees with long COVID symptoms, and over half (58 percent) of those employees receive some type of accommodation. Additional research is needed to identify how many people with long COVID request accommodations, how many requests are denied and on what basis, and the types and effectiveness of accommodations that are received.
Some individuals with long COVID may be too sick to work, even with accommodations. They must rely on employer-provided sick leave or disability benefits, if available. Individuals who lose their jobs as a result of long COVID may also lose employer-sponsored health insurance coverage and seek other sources of coverage. According to a Kaiser Family Foundation report, claims related to long COVID appear to be rising for disability insurance and workers compensation, and group health insurance, which could ultimately increase costs for employers. People with long COVID who are unable to work for a year or more due to long COVID may face challenges documenting eligibility for federal disability benefits, long wait times, and other obstacles. It is unclear how insurers and program administrators ultimately will respond to claims related to long COVID, but it is likely that individuals with long COVID will face challenges documenting eligibility for these benefits and programs due to the barriers discussed above.
A Call to Action
Although the full impact of long COVID is not yet clear, it poses a daunting challenge in employment. Disability antidiscrimination laws should be used to protect the rights of people with long COVID and other disabilities in the workplace, health care, and disability and other benefits and programs. Health care providers and institutions should receive education and training about developing standards for diagnosis and treatment of long COVID. Education and training on disability-competent care, including legal obligations when caring for patients with disabilities is also needed. Finally, better data is needed to identify and address inequities experienced by people with long COVID and other disabilities, and compounded disparities at the intersections of disability, race, ethnicity, gender, sexual orientation, and other groups.
Elizabeth Pendo is the Joseph J. Simeone Professor of Law and a member of the Center for Health Law Studies at Saint Louis University School of Law.
