Long COVID has forced millions of Americans to exit the workforce, leaving many scrambling to pay everyday expenses. The U.S. government formally recognizes long COVID as a disability and offers support services, but trying to access benefits is often a road filled with barriers.*

Out of work and struggling

According to a report by the Brooking Institute, 2-4 million Americans are out of work because of debilitating Long COVID symptoms.

Josephine Cabrera Tavera, mom of two in Brooklyn, New York, was infected with COVID-19 in 2020. Two years later, she says continuous breathing difficulties and other Long COVID symptoms have forced her to quit her job as a full-time nanny. With a mountain of bills piling up, her family now faces eviction.

Amanda Martin also became infected with COVID-19 in the spring of 2020 and had to give up her job as a U.S. Navy subcontractor after experiencing long-term symptoms. She says she has spent most of the past two years on bed rest, and while food stamps and Medicaid have helped, no assistance has come for other everyday expenses such as gas.

Both Tavera and Martin have applied for Social Security benefits, but both have been denied.

Assistance is available but not always accessible

The U.S. Department of Health and Human Services recognized Long COVID as a disability under the Americans with Disabilities Act (ADA) in 2021. The White House released a statement summarizing what support and services are available for those affected, including Social Security benefits.

Unfortunately, the guidance under the ADA was not extended to the Social Security Administration. Under the ADA, people with Long COVID are able to request appropriate accommodations at work, such as a flexible schedule or changes in their work setting. To get disability benefits through the Social Security Administration, however, people must prove their condition is so severe that they are unable to work.

“The application process is very demanding, very confusing for patients,” says patient advocate Alison Sbrana. “It also entirely depends on you having this substantial breadcrumb trail of medical evidence.”

Further complicating the process is the fact that there is still no standard for diagnosing Long COVID. Even Social Security officials are left without specific guidelines to process Long COVID claims. 

Advocates say that most applications are denied during the first attempt. After appealing the decision, a second denial usually follows, and at that point, applicants can ask for their case to be heard in court. This process typically goes on for over a year and often requires the help of a lawyer.

Fighting for a better way

Patient advocacy groups, like Body Politic, are fighting for a faster, more efficient process, with clear guidance for the officials who determine benefit eligibility. The organizations also offer support, shared resources, and sometimes even financial support for those affected by Long COVID.

*Ladyzhets, B. (2022, November 9). People With Long Covid Face Barriers to Government Disability Benefits. Kaiser Health News. https://khn.org/news/article/long-covid-barriers-government-disability-benefits/