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See the latest news and updates about COVID-19 and its impact on the Charlotte region, the Carolinas and beyond.

Post-Acute COVID-19 Raises Concerns About Health Care Access

Photo by Jakayla Toney

Conover homeschooling mom, Jessica Frierson, remembers last July 4 weekend well. That was when two of her daughters started to complain their throats hurt. Frierson thought it was just the dry air.

“One by one, the other children started getting it,” she says. It turned out to be COVID-19. “My 4-year-old and my 8-year-old were pitiful, they would lie on the floor and cry, just sob."

Soon, all six children got the virus. Then her husband was admitted to the hospital with double pneumonia after he tested positive. Frierson took care of everyone … until one day last August.

Frierson says she felt like she’d been hit by a train. “It was the flu times 10.” She had difficulty breathing. She felt like there was a heavy weight on her chest; she thought she might die.

Frierson is 46, and she says she’d always been healthy. But an emergency room doctor found blood clots in her lungs and an X-ray revealed some permanent lung damage.

Over time she started to feel better. Then new problems developed. Her heart would race for no reason, she was dizzy, and one day her whole body starting shaking so badly she couldn’t talk.

The worst part, Frierson says, was difficulty thinking. “My family would be guessing what I was saying,” Frierson says. “I would say like I need my you know, the things that you when I’m going to walk outside and they’re like your coat? No, no. Your shoes? Yes, my shoes, I need my shoes."

It turns out rapid heartbeat and memory problems are just two of the symptoms many people start to experience after they’ve begun to recover from the acute infection. Frierson says she figured that out from a national support group of people suffering from post-acute COVID-19 she found online.

Dr. Dayna McCarthy sees patients like Frierson every day at Mt. Sinai Hospital’s post-acute COVID-19 clinic in New York City — one of the first in the country to focus exclusively on the needs of long haulers. She says cognitive problems are common.

“People keep calling it this COVID-19 brain fog,” she says. “They have difficulty focusing, their processing is much slower, their word-finding, their short term memory and they just feel like they have a thick fog that they kind of can’t kind of think through, or see through.”

McCarthy ticks off a list of common problems. Headaches, gastrointestinal problems, fatigue, difficulty breathing, insomnia, even depression is on the list

McCarthy says up to 10% of patients diagnosed with COVID-19 will have post-acute problems. And these long-haulers often aren’t the oldest or sickest patients. They tend to be young — 20 to 40 years old, they were in good health before COVID-19, and frequently they had relatively a mild case of the virus.

But many have been too sick to work since the pandemic hit in March. McCarthy says patients have told her, “I wish I got severely sick and didn’t survive. I’d rather have that than the way I’m feeling right now.”

Mt. Sinai helps patients connect with specialists. McCarthy — a rehabilitation doctor — says her patients often improve with complete rest, and she helps them manage their nutrition, stress and activity levels.

But for Jessica Frierson, a lot of treatments are out of reach because she doesn’t have health insurance. Even though her family earns less than the poverty level, she doesn’t qualify for Medicaid because the value of her second car — $3,000—puts her over the $2,000 limit on assets. She says she needs the car because there are eight in her household.

North Carolina Rep. Carla Cunningham of Mecklenburg County is concerned there are a lot of people like Frierson out there, and the number will continue to grow because of pandemic-related job and coverage losses.

Cunningham worries long haulers may not have coverage to pay for months of treatment. And that could affect their entire families. “If you don’t have a healthy parent then your household is not healthy and you know it jeopardizes your entire health of your entire household,” she says.

Cunningham, who is also a nurse, believes post-acute COVID-19 makes it necessary for the state to expand Medicaid coverage to more people. She raised the issue of at the Dec. 4 meeting of the North Carolina Council on Health Care Access. “Where are we going to be once COVID settles down?” she asked, and some with post-acute symptoms are “disabled or unable to work?”

Insurance companies on the Obamacare exchange will cover treatment, says Mark Van Arnam. He works with the North Carolina Navigator Consortium, which helps people find Affordable Care Act policies.

But Van Arnam worries about those who’ve had COVID-19 and are now shopping for health insurance. Coverage that isn’t ACA-compliant — like short-term policies and health care sharing ministries — can refuse to pay for treatment for long-term health problems if they find COVID-19 is a preexisting condition. And they frequently impose annual spending caps that limit coverage for the long-term care which long-haulers might need.

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Dana Miller Ervin is a reporter at WFAE, examining the U.S. health care system.