Three years after the start of the pandemic, millions of working age people still suffer from long COVID-19 and some lawmakers and advocates, including people with long COVID, say not enough is being done to protect their well-being and ensure they can continue to be employed.

Proposed federal legislation, better workplace accommodations, and more federal funding could make a difference, advocates say. The mitigation of COVID spread would also serve to prevent more people from getting long COVID or worsening the health of those who already experience it.

Long COVID has a wide variety of symptoms, including fatigue, dizziness, rapid heart rate, and brain fog, and for some people those symptoms can come and go. The challenges in receiving a diagnosis, due to the similarity in other medical conditions and other barriers, can make it hard to document their illness for employers.

“There’s a lack of consistency in how long COVID is defined and diagnosed and that can directly impact whether accommodations are provided because employers often are not sure how to proceed,” said Tracie DeFreitas, director of training, services and outreach for the Job Accommodation Network (JAN), a consulting service for employers funded by the U.S. Labor Department. “… People may have a wide variety of symptoms that could come from other medical conditions and health care providers are sort of excluding other types of medical conditions first.”

DeFreitas said JAN’s practical guidance is for employers not to get stuck in determining whether someone’s long COVID is a disability through a diagnosis, since federal agencies including the Department of Health and Human Services and the Equal Employment Opportunity Commission have made it clear that it can be disability. Employers should instead focus on making accommodations for workers, she said.

With roughly 16 million people of working age reported to have some symptoms of long COVID, economists say there are long-term implications for the U.S. economy if workplace needs are not addressed.

The total cost of long COVID to the U.S. economy is a fluid figure. Last year, a Harvard University economist upped his initial estimate by roughly a trillion dollars to $3.7 trillion, with $997 billion of that amount being from lost earnings. In addition, studies have found that people with long COVID work 50% fewer hours and earn on average 18% less over the course of a year because of their illness.

Meanwhile, a January report from the New York State Insurance Fund analyzing its compensation claims found that  31% of claimants were experiencing long COVID or had had long COVID. The data, according to the report, highlighted an “underappreciated reason for the many unfilled jobs and the declining labor participation rate since the emergence of the pandemic.”

Those lost earnings, of course, can lead to reduced household spending, while the decline in labor participation caused many employers to raise wages, which has helped to fuel inflation.

Katie Brach, with the Brookings Institution, makes the case for more policy initiatives and workplace accommodations to enable long COVID sufferers to increase work hours, writing “long COVID is already a meaningful drag on U.S. economic performance and household financial health. And absent intervention, the situation is likely to worsen.”

Don’t abandon pandemic accommodations

Shelby Seier runs her own consulting practice in Omaha, Nebraska, All Kinds Accessibility Consulting, where she advises employers on how to provide accommodations, including for people with long COVID. Seier, who is disabled and chronically ill, has had firsthand experience with long COVID after getting COVID-19 last year.

“On a personal level, it was very mentally debilitating to have to rearrange my plans and just consistently wake up and not be able to do the things I wanted to do,” she said. “It’s a very heartbreaking experience and totally isolating, and it is emotionally compounding where if you have several days in a row of just not being able to stay on top of emails, which was a task that I could do prior, it just feels awful.”

Seier, who said she has suffered from post-viral illnesses since she was a teenager, said that running her own business allowed her to build accommodations for her own needs. Her experience informs her work with clients; showing them how to make the accommodations that previous workplaces did not provide her.

“A lot of my work is convincing people not to abandon all of the great accommodations that they so easily, or perhaps not easily, implemented early in the pandemic, like flexible work schedules, virtual options, and reducing the amount of labor that your team does,” she said.

Seier added that disability awareness and inclusion training can be a crucial step for employers to prevent poor communication and ableism in the workplace.

“The team needs to know how to communicate with a person who has fluctuating abilities and there needs to be capacity-building about learning to understand an onset of acute illness,” she said. “Without those crucial educational components, I often see that resentment builds within an organization, if a team member can no longer do what they were previously able to do.”

Bryon Bass, senior vice president workforce absence and disability practice leader at Sedgwick, a global business solutions business, said it is likely that many people with long COVID will meet the requirements under the ADA, where a mental or physical impairment prevents participation in one or more major life activities, including work. Restructuring someone’s job through flexible work hours would be one way to accommodate someone with long COVID.

Some employers can provide intermittent leave as an ADA accommodation when workers with long COVID say they feel sick and need time off, according to a guide from JAN and the Employer Assistance and Resource Network on Disability and Inclusion. If an employee is no longer qualified for their current position, employers could also train them for a different one so that they can remain employed at the company.

A March 9 webinar from Bass, DeFreitas, and other accommodation experts, included solutions for addressing memory deficits, such as providing written instructions, using voice recorders, creating the minutes of meetings and training, and making flowcharts to show the steps for a particular task. But most of all, many experts on accommodations say to go straight to the source, the worker, and ask what they need help with and what could work best for them.

In addition to JAN’s services for employers and guidance on long COVID as a disability, the Department of Health and Human Services created a guide in August on services and support for the long-term impacts of COVID-19, which also provides information for employers. In April, the department released a comprehensive fact sheet on defining Long COVID, workplace interventions, and research on Long COVID.

Federal legislation proposed

The Biden administration also proposed $130 million for Long COVID programs in fiscal year 2024 and $130 million for diagnosing and treating long Covid in fiscal year 2025 in his budget request.

Some lawmakers are intent on providing more resources and guidance to workers with long COVID as well as their employers. U.S. Sen. Tim Kaine, a Virginia Democrat, reintroduced the Comprehensive Access to Resources and Education (CARE) for Long COVID Act in March with Sens. Tammy Duckworth, D-Illinois, and Ed Markey, D-Massachusetts. Kaine has long COVID himself and said during his reintroduction of the bill that his symptoms included intense nerve tingling for three years.

Kaine’s bill, which hasn’t made progress in the Senate since it was reintroduced, would authorize $30 million to be spent for each of the fiscal years from 2024 to 2026 to create and disseminate information about long COVID to employers on the rights of people with disabilities as well as educational materials for school administrators, school nurses, and other school staff on support services and students’ rights.

It would also support long COVID research, interagency coordination to educate the public, and “recommendations to streamline the process of applying for benefits through the Social Security Administration.” The bill creates a grant program to support partnerships that help people with long COVID find health care services and legal assistance.

“Millions of Americans have had to step back from work or school due to Long COVID. This hurts families, communities, and our economy as a whole,” Kaine said to States Newsroom in an email. “… I’ve heard from many Virginians who have been sidelined from work by their debilitating Long COVID symptoms about the barriers they face seeking accommodations in the workplace, in schools, and applying for Social Security disability benefits. Barriers applying for benefits include long applications, difficulties accessing in-person appointments, a lack of clear-cut eligibility criteria, long appeals times, and an overly complex system.”

When asked how Seier pushes back when employers question the immediate costs involved in providing accommodations, she said employers can’t afford not to focus on them, as well as on measures preventing the spread of COVID, such as improving air quality.

“‘I want you to do the mental math of thinking about how much it costs to hire someone to replace anyone on your team,’ and just helping them understand that a post-COVID illness can happen to anyone at any time after infection … I also let them know that aging is often the experience of the onset of disability, so if you’re investing in accommodations now you’re going to allow people to stay with you for a longer period.”

Seier added that she doesn’t believe the government is doing enough to address Long COVID or the spread of COVID-19 in general. She said she’d like to see more resources spent on making schools, workplaces, and places of public accommodation safer, such as improving ventilation systems.

“I would like the government to do anything more than the bare minimum that they’re doing right now and I think ‘bare minimum’ is generous. I think we are witnessing the complete abandonment of the disability community at an alarming and inexcusable rate from all levels of government and elected leadership.”