Editor’s note: Find the latest long COVID news and guidance in Medscape’s Long COVID Resource Center.
It’s a devastating series of setbacks for long COVID patients. First, they get the debilitating symptoms of their condition. Then they are forced to give up their jobs, or severely curtail their work hours, as their symptoms linger. And next, for many, they lose their employer-sponsored health insurance.
While not all long COVID patients are debilitated, the CDC’s ongoing survey on long COVID found a quarter of adults with long COVID report it significantly affects their day-to-day living activities.
Estimates have shown that long COVID has impacted the lives of anywhere from 16 million to 34 million Americans between the ages of 18 and 65.
While hard data is still limited, a Kaiser Family Foundation analysis found that more than half of adults with long COVID who worked before getting the virus are now either out of work or working fewer hours.
According to data from the Census Bureau’s Household Pulse Survey, out of the estimated 16 million working-age adults who currently have long COVID, 2 million to 4 million of them are out of work due to their symptoms. The cost of those lost wages ranges from $170 billion a year to as much as $230 billion, the Census Bureau says. And given that approximately 155 million Americans have employer-sponsored health insurance, the welfare of working-age adults may be under serious threat.
“Millions of people are now impacted by long COVID, and oftentimes along with that comes the inability to work,” says Megan Cole Brahim, PhD, an assistant professor in the Department of Health Law, Policy, and Management at Boston University and co-director of the school’s Medicaid Policy Lab. “And because a lot of people get their health insurance coverage through employer-sponsored coverage, no longer being able to work means you may not have access to the health insurance that you once had.”
The CDC defines long COVID as a wide array of health conditions, including malaise, fatigue, shortness of breath, mental health issues, problems with the part of the nervous system that controls body functions, and more.
Gwen Bishop was working remotely for the Human Resources Department at the University of Washington Medical Centers when she got COVID-19. When the infection passed, Bishop, 39, thought she’d start feeling well enough to get back to work – but that didn’t happen.
“When I would log in to work and just try to read emails,” she says, “it was like they were written in Greek. It made no sense and was incredibly stressful.” .
This falls in line with what researchers have found out about the nervous system issues reported by people with long COVID. People who have survived acute COVID infections have reported lasting sensory and motor function problems, brain fog, and memory problems.
Bishop, who was diagnosed with ADHD when she was in grade school, says another complication she got from her long COVID was a new intolerance to stimulants like coffee and her ADHD medication, Vyvanse, which were normal parts of her everyday life.
“Every time I would take my ADHD medicine or have a cup of coffee, I would have a panic attack until it wore off,” says Bishop. “Vyvanse is a very long-acting stimulant, so that would be an entire day of an endless panic attack.”
In order for her to get a medical leave approved, Bishop needed to get documents by a certain date from her doctor’s office that confirmed her long COVID diagnosis. She was able to get a couple of extensions, but Bishop says that with the burden that has been placed on our medical systems, getting in to see a doctor through her employer insurance was taking much longer than expected. By the time she got an appointment, she says, she had already been fired for missing too much work. Emails she provided showing exchanges between her and her employer verify her story. And without her health insurance, her appointment through that provider would no longer have been covered.
In July 2021, the U.S. Department of Health and Human Services issued guidance recognizing long COVID as a disability “if the person’s condition or any of its symptoms is a ‘physical or mental’ impairment that ‘substantially limits’ one or more major life activities.”
But getting access to disability benefits hasn’t been easy for people with long COVID. On top of having to be out of work for 12 months before being able to qualify for Social Security Disability Insurance, some of those who have applied say they have had to put up a fight to actually gain access to disability insurance. The Social Security Administration has yet to reveal just how many applications that cited long COVID have been denied so far.
David Barnett, a former bartender in the Seattle area in his early 40s, got COVID-19 in March 2020. Before his infection, he spent much of his time working on his feet, bodybuilding, and hiking with his partner. But for the last nearly 3 years, even just going for a walk has been a major challenge. He says he has spent much of his post-COVID life either chair-bound or bed-bound due to his symptoms.
He is currently on his partner’s health insurance plan but is still responsible for copays and out-of-network appointments and treatments. After being unable to bartend any more, he started a GoFundMe account and dug into his personal savings. He says he applied for food stamps and is getting ready to sell his truck. Barnett applied for disability in March of this year but says he was denied benefits by the Social Security Administration and has hired a lawyer to appeal.
He runs a 24-hour online support group on Zoom for people with long COVID and says that no one in his close circle has successfully gotten access to disability payments.
Alba Azola, MD, co-director of Johns Hopkins School of Medicine’s Post-Acute COVID-19 Team, says at least half of her patients need some level of accommodations to get back to work; most can, if given the proper accommodations, such as switching to a job that can be done sitting down, or with limited time standing. But there are still patients who have been more severely disabled by their long COVID symptoms.
“Work is such a part of people’s identity. The people who are very impaired, all they want to do is to get back to work and their normal lives,” she says.
Many of Azola’s long COVID patients aren’t able to return to their original jobs. She says they often have to find new positions more tailored to their new realities. One patient, a nurse and mother of five who previously worked in a facility where she got COVID-19, was out of work for 9 months after her infection. She ultimately lost her job, and Azola says the patient’s employer was hesitant to provide her with any accommodations. The patient was finally able to find a different job as a nurse coordinator where she doesn’t have to be standing for more than 10 minutes at a time.
Ge Bai, PhD, a professor of health policy and management at Johns Hopkins Bloomberg School of Public Health, says the novelty of long COVID and the continued uncertainty around it raise questions for health insurance providers.
“There’s no well-defined pathway to treat or cure this condition,” Bai says. “Right now, employers have discretion to determine when a condition is being covered or not being covered. So people with long COVID do have a risk that their treatments won’t be covered.”
CDC: “Long COVID Household Pulse Survey,” “Long COVID or Post-COVID Conditions.”
Brookings Institution: “New data shows long Covid is keeping as many as 4 million people out of work.”
Kaiser Family Foundation: “What are the Implications of Long COVID for Employment and Health Coverage?” “2021 Employer Health Benefits Survey.”
Therapeutic Advances in Chronic Disease: “Neurological manifestations of long-COVID syndrome: a narrative review.”
U.S. Department of Health and Human Services: “Guidance on ‘Long COVID’ as a Disability Under the ADA, Section 504, and Section 1557.”
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