First they get a long COVID, then they lose their health care

October 13, 2022 – It’s been a devastating series of setbacks for patients with prolonged COVID. First, they get the debilitating symptoms of their condition. They are then forced to quit their jobs or severely reduce their working hours as their symptoms persist. And then, for many, they lose their employer-sponsored health insurance.

Although not all prolonged COVID patients are debilitated, the CDC current study of long-term COVID found a quarter of adults with long-term COVID reported to significantly affect their daily living activities.

Projections show that long-term COVID has affected lives everywhere 16 million to 34 million Americans between the ages of 18 and 65.

Although hard data is still limited, the Kaiser Family Foundation analysis found that more than half of adults with prolonged COVID who were working before contracting the virus are now either out of work or working fewer hours.

According to data from the Census Bureau’s Household Pulse Survey, of the estimated 16 million working-age adults who currently have prolonged COVID, 2 million to 4 million of them are out of work because of 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 approx 155 million Americans have employer-sponsored health insurance, the well-being of working-age adults may be under serious threat.

“Millions of people are now affected by prolonged COVID, and often with that comes the inability to work,” says Megan Cole Brahim, PhD, assistant professor in the Department of Health Law, Policy and Management at Boston University and co-director of the school’s Policy Lab at Medicaid. “And since many people get their health insurance coverage through employer-sponsored coverage, not being able to work anymore means you may not have access to the health insurance you once had.”

The CDC defines long-term COVID as a wide range of health conditions, including malaise, fatigue, shortness of breath, mental health problems, 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 became ill with COVID-19. When the infection cleared, Bishop, 39, thought she would start to feel well enough to return to work — but she didn’t.

“When I would come into work and just try to read emails,” she says, “it was like they were written in Greek. It didn’t make sense and it was incredibly stressful.” .

This is consistent with what researchers have found about nervous system problems reported by people with long-term COVID. People who have experienced acute COVID infections have reported persistent problems with sensory and motor function, brain fog, and memory problems.

Bishop, who was diagnosed with ADHD when she was in elementary school, says another complication she got from her long COVID was a new intolerance to stimulants like coffee and her ADHD medication, Vyvanse, which had been a normal part of everyday life. her

“Every time I took my ADHD medication or had a cup of coffee, I would have a panic attack until it went away,” says Bishop. “Vyvanse is a very long-acting stimulant, so it would be a full day of endless panic attacks.”

In order to be approved for medical leave, Bishop had to receive documents by a certain date from her doctor’s office confirming her long-standing COVID diagnosis. She was able to get several extensions, but Bishop says that with the burden placed on our medical systems, getting into a doctor through her employer insurance is taking much longer than expected. By the time she gets an appointment, she says she’s already been fired for not having too much work. Emails she provided showing exchanges between her and her employer corroborate her story. And without her health insurance, her appointment through that provider would no longer be covered.

In July 2021, the US Department of Health and Human Services manual issued recognizing long-term 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 isn’t easy for people with long-term COVID. In addition to having to be out of work for 12 months before they could qualify for Social Security Disability, some of those who applied say they had to fight to get actual disability access. The Social Security Administration has not yet disclosed how many applications that cite long COVID have been denied so far.

David Barnett, a former bartender in the Seattle area in his early 40s, became ill with COVID-19 in March 2020. Before contracting the disease, he spent much of his time working out on his feet, bodybuilding and hiking with his partner you are But for the past nearly 3 years, even just going for a walk has been a big challenge. He says he has spent much of his post-COVID life either confined to a chair or bed 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 he could no longer work as a bartender, he opened 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 prolonged COVID and says no one in his inner circle has successfully accessed disability payments.

Alba Azola, MD, co-director of the Post-Acute COVID-19 Team at Johns Hopkins School of Medicine, says at least half of her patients need some level of adjustment to return to work; most can if appropriate conditions are provided, such as switching to work that can be done in a sitting position or with limited time standing. But there are still patients who have been more severely disabled because of their long COVID symptoms.

“Work is such a part of people’s identity. People who are very impaired, all they want is to get back to work and their normal lives,” she says.

Many of Azola’s long-term COVID patients are unable to return to their original jobs. She says they often have to find new positions better suited to their new realities. One patient, a nurse and mother of five who previously worked in a facility where she contracted COVID-19, was out of work 9 months after contracting it. She eventually 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 another job as a nurse coordinator where she did not have to stand for more than 10 minutes at a time.

Dr. Ge Bai, a professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health, says the novelty of the long COVID and the continued uncertainty surrounding it raises questions for health insurance providers.

“There is no well-defined path to treatment or cure for this condition,” Bai says. “Currently, employers have a discretion to determine when a condition is met or not. So people with long COVID are really at risk of not having their treatment covered.”

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