Georgia long COVID patients fight for benefits, legitimacy

“If you knew me two months before COVID and then you knew me now,” he said, “you would say I was a different person, in the way I talk, the way I communicate and the way I present myself, even walk.”

Most people who are infected with COVID-19 recover within weeks. But studies estimate that between 10% and 30% develop at least one symptom that persists after the virus leaves their body, even if they had only a mild case of COVID-19. By that metric, roughly 4.7 million to 14 million Americans — including some 160,000 to 480,000 Georgians — could be considered long-haulers.

For many, the symptoms can be debilitating. Some are in such severe pain that they can’t work, focus or carry out everyday tasks like showering or grocery shopping.

Yet these long COVID patients must navigate a health care system that’s still learning the basics of their condition and can be dismissive of their symptoms. Then there are the friends, family and bosses who can be skeptical of the severity of their pain and the insurers who can deny their disability claims.

“There hasn’t been a day that I haven’t woken up in the morning and cried,” said Sandi Keiser-Zack of Roswell, who keeps a stack of binders filled with medical notes, disability paperwork, bills, articles, research studies and test results at home. “No one knows what to do.”

Treating a new condition

Part of the problem is that long COVID is so new. Medically known as PASC, or post-acute sequelae SARS-CoV-2 infection, doctors don’t understand how these long-haul symptoms arise from a COVID infection or if they could lead to long-term health problems. Nor is there an agreed-upon method for diagnosing or treating the syndrome.

Researchers have identified more than 100 symptoms among long-haulers. Among the most common are shortness of breath, fever, headaches, sleep problems, dizziness after sitting or standing up and severe fatigue.

“My goal right now is to walk outside of my house for five continual minutes without stopping,” said Adrienne Levesque, a 49-year-old Loganville accountant who before catching COVID loved golfing and group fitness classes. The once simple acts of showering, doing her hair and applying makeup can now take her hours, they exhaust her so much.

Credit: rhorne@ajc.com

Credit: rhorne@ajc.com

Dr. Alex Truong, an Emory assistant professor who co-runs a long COVID clinic, said that the syndrome can look different in individual patients.

“We are still struggling to figure out who gets what, why is it that certain patients have more symptoms than others and who gets better and who doesn’t,” he said.

Another common symptom is “brain fog,” where people report forgetting words in the middle of a sentence or losing track of what they’re doing.

For Levesque, it tends to manifest when she’s cooking dinner or completing work tasks that used to be routine. Stephanie Mikesell, a mother of three from East Cobb, recently pointed to pumpkins and called them apples and referred to the dishwasher as the garbage.

“I can’t think of the words that I’m trying to say,” Mikesell said. It’s “a weight, almost a heaviness that I carry around.”

Figuring out the breadth of someone’s symptoms can be a challenge in itself.

Whenever Dr. Joel Rosenstock, medical director of Absolute Care in Buckhead, gets a new long COVID patient, he’ll spend two hours assessing their symptoms.

Among the checks he performs is a sit-stand test to measure for postural orthostatic tachycardia syndrome, or POTS, a blood circulation disorder that’s a common symptom of long COVID. A cognitive test administered via iPad helps measure brain fog. And he’ll use what’s essentially an elaborate scratch and sniff test to measure how much a patient has lost their sense of smell.

Credit: Jenni Girtman

Credit: Jenni Girtman

Rosenstock is no stranger to treating new, nebulous and often misunderstood illnesses. He spent much of his career caring for HIV and AIDS patients when there was still major stigma surrounding them. Many of the long-haulers who come to his clinic, he said, have already seen three to six other doctors.

“If you had to pin me down and say what are we really doing for these folks, the main thing is we validate their symptoms,” he said. “Many of their families, loved ones and physicians they may have seen just say ‘oh suck it up, get back to work. Your blood tests and chest x-rays are fine.’ We don’t say that. We tell them these things are real.”

There’s no known cure for long COVID, and some patients’ conditions improve with time while others haven’t.

Rosenstock develops care plans to manage his patients’ symptoms while trying to improve their sense of smell, sleep and cognitive brain function. He’ll also frequently point patients to behavioral health specialists who can help with anxiety and depression, which are also very common among long-haulers.

Seeking disability

Another critical component of Rosenstock’s long COVID clinic is administrative. His team spends a significant amount of time filling out disability and Family and Medical Leave Act paperwork for his patients.

Many long-haulers are unable to work. A survey of more than 3,700 long COVID patients published this summer in the respected medical journal The Lancet found that more than 45% needed a reduced work schedule. Another 22% said they were not working at all.

For Keiser-Zack, the Roswell resident, it became clear almost immediately that she couldn’t perform her job. The elementary school teacher has contended with a torrent of symptoms over the last 10 months that includes inflammation, tremors and dizziness. Some days the pain is so severe that she can’t get out of bed, much less command a classroom of wiggling kindergarteners.

“Generally it’s really day-to-day,” Keiser-Zack said. “I never know what’s going to happen or what’s going to trigger it.”

Smith initially thought he could work around his symptoms until his situation improved. But he grew scared of making mistakes that could harm his company and, with the support of his doctor, family and employer, opted to go on short-term disability earlier this fall. He’s taking three months away to focus on his recovery.

Others are less lucky, struggling to secure any workplace accommodations.

The Biden Administration issued federal guidance in July clarifying that long COVID patients could qualify for federal disability protections.

But that still requires patients to prove they have a physical or mental impairment that “substantially limits one or more major life activities” using medical assessments or health records.

That can be problematic because some symptoms don’t always show up in tests. Similarly, some who caught COVID early in the pandemic can’t produce positive coronavirus tests since they were in such short supply at the time.

Candace Taylor, a 39-year-old who works in the business office of an Atlanta hospital, did have documentation from an infectious disease specialist. Yet she fought for more than a year to secure disability payments.

“The third-party company my employer used was saying I had a psychosomatic illness, that it was all in my head,” she said.

Taylor was approved for short and long-term disability only after she retained an attorney and CBS News did a story on her situation this summer. And she’s still fighting for Social Security.

In some ways, though, the disability aid was too little, too late. Taylor — who has contended with some 20 symptoms— is unable to work her job, and she lost her her health insurance and her independence. Unable to keep up with her bills or pay her rent, she faced two evictions as she waited for aid.

“I’ve had to ask people to pay my utility bills, buy me groceries as I’ve fought for disability,” Taylor said. Now she’s staying with family until she can get back on her feet.

Lisa Smith Siegel, an Atlanta-based disability lawyer, isn’t surprised that long-haulers are being denied coverage for now.

She said it takes time — often years — for insurers and the Social Security Administration to come to grips with novel health conditions.

“It’s just a little too new,” she said of long COVID.

In the meantime, disability lawyers are trying to get around the regulatory speedbumps by assessing their clients’ individual symptoms to see if they match up with other medical conditions that insurers are more accustomed to, such as respiratory or neurological issues.

Credit: rhorne@ajc.com

Credit: rhorne@ajc.com

Research catching up

Meanwhile, the scientific community is beginning to catch up.

Congress has appropriated more than $1.1 billion for the National Institutes of Health to study the prolonged health consequences of COVID-19.

Earlier this fall, the NIH awarded a nearly $470 million grant for researchers to study long COVID. Led by New York University, organizers of the RECOVER initiative plan to enroll up to 40,000 people at more than 200 sites to study the syndrome and potential treatments.

Four local partners — Emory, Morehouse College of Medicine, the Atlanta Veterans Affairs Healthcare System and Kaiser Permanente of Georgia — are projected to receive nearly $20 million over four years to participate. Close to 1,000 people are expected to be recruited in Atlanta, Emory said.

Other local researchers are studying the connections between COVID long-haulers and people with autoimmune diseases like lupus and rheumatoid arthritis.

A recent study awaiting peer review from Emory researchers found that more than half of the sickest COVID-19 patients had immune systems that were attacking themselves instead of the virus, not unlike people with autoimmune diseases.

The team is investigating whether that helps explain why some COVID patients go on to become long-haulers, said Dr. Matthew Woodruff, an immunologist working under the direction of Dr. Iñaki Sanz, Emory’s chief of rheumatology, and Dr. Frances Eun-Hyung Lee, a pulmonary immunologist.

Their work could also help determine which COVID patients could benefit from treatments currently used for autoimmune diseases and whether those treatments could be used to prevent long COVID in the first place, according to Sanz.

Credit: rhorne@ajc.com

Credit: rhorne@ajc.com

As research continues, doctors caring for long-haulers are learning on the fly. Since patients have so many symptoms, it requires many providers to reach far beyond their expertise or pull in specialists from across the medical field.

Emory’s Truong is a pulmonologist, which means he focuses on the body’s respiratory system. Since the school’s long COVID clinic launched in Aug. 2020, he’s found himself calling friends who are psychiatrists and primary care doctors to learn how to do things like utilize stimulants to treat fatigue and physical therapy for endurance.

“We’re still in the process of learning how to deal with this,” Truong said. “There’s not going to be an easy answer, but hopefully I can make you at least a little bit better tomorrow than you are today.”

‘They have failed us’

The demand for doctors who understand long COVID is immense. Emory’s clinic currently has a two-month waitlist, Truong said.

As many long-haulers have felt rejected by the medical establishment, they’ve organized on social media to trade stories, symptoms, treatments and recommendations for doctors.

Survivor Corps has grown into a bustling group with more than 179,000 members on Facebook and a medical advisory board that includes doctors from Yale, Columbia University, Mt. Sinai and the Mayo Clinic. Locally, Levesque launched the Facebook group Georgia COVID Long Haulers in January that’s since grown to more than 400 members.

Credit: rhorne@ajc.com

Credit: rhorne@ajc.com

“It’s been a great support,” Levesque said. “At least we all know we’re not alone.”

Taylor, the Atlanta hospital worker who battled for disability coverage, said she’s found community online. There are others who can relate to losing their jobs and homes, facing a growing mountain of medical bills and insensitive interactions with doctors and nurses.

“People just think it’s physical trauma,” Taylor said of long COVID, “but it’s mental and financial too. We’ve lost it all and have no help to help us get better. There’s no treatment or cure.”

The social media groups have taught many long-haulers how be proactive in finding their own care.

Indeed, that self-advocacy and research are what brought Smith, the Marietta technologist, to Rosenstock.

While Smith was having issues keeping up at work, it was only after taking the cognitive test that the toll of long COVID on his body became clear. He scored nine standard deviations below the mean for his age and education level.

He’s now on a regimen to try to improve. Smith has changed his diet, is completing cognitive exercises and closely tracks his sleep, fatigue, headache, light sensitivity and speech. Rosenstock gave him what’s essentially an aromatherapy kit with essential oils that Smith smells twice a day to help retrain his body how to detect scent.

Smith said his experience has given him more empathy toward people battling more chronic and less visible health conditions.

“The aftereffects of the virus are serious and they’re real,” he said of COVID-19. “People need to have some compassion for those who are going through it.”

Several medical facilities in metro Atlanta have launched clinics for treating long COVID patients, many pulling in expertise from a variety of specialists. Here are a few in the area:

There are also a variety of online support groups for long haulers: