(WASHINGTON) — Less than a month after Victoria Waldo recovered from COVID, she woke up drunk.
Dizzy and slurred, she went to the emergency room to be sent home after routine blood tests came back negative.
The newly engaged 26-year-old, who worked long days in finance at a start-up and taught skiing on the weekends, would spend the next few months hazy on her couch in her apartment in Washington, DC.
Unable to concentrate, she lost her job. At one point, she came across a pair of slippers she liked and asked her fiancé who they belonged to. They were hers, he said, a Christmas present from her sister.
Another time, she forgot what her wedding planner looked like and introduced herself to the woman as if the two had never met.
“I had no idea what was going on. No one diagnosed me with anything. Everyone said I was fine based on my labs. Someone asked me if I had my period,” she said.
Now, at an age when many young professionals are considering financing a home, traveling or starting a family, Waldo is weighing his options. Her employer didn’t offer disability insurance with her job — a benefit she didn’t think she needed in her twenties. So she waits to see if her condition improves over time – and burns her savings in the meantime.
“I think in a parallel universe where none of this happened, we would do it now,” she said of finding a home. But “instead, I’m kind of like, ‘Oh, I want to see if we can get away with that cheap rent again.”
“A mass disabling event”
More than two years into COVID, millions of survivors say they still don’t feel well. Brain fog, difficulty breathing and intense fatigue are among the symptoms they say still linger in their bodies, upsetting their ability to work and derailing their financial independence.
The government estimates that 7 million to 23 million people are affected by long COVID, and a Census Bureau survey suggests that of those who have been infected, one in five still have persistent symptoms.
Vaccination is expected to significantly reduce the risk of a person developing long COVID. This immunity wanes over time, however, and doctors say some people — like Waldo who was fully vaccinated but days away from a booster shot when she caught the virus — can still be young and healthy when they get sick.
Proponents have called this phenomenon a “mass disabling event” that insurers and the federal government have yet to reckon with. Data on disability claims with private insurers related to the long COVID is not publicly available. And while disability claims with the federal government’s Social Security program currently remain flat for now, at least one economist says it may not last long.
“This is a $3.5 trillion problem,” said David Cutler, an economics professor at Harvard University, whose calculations factor in lost income, medical care and decline in quality of life.
“And there are very few of the 3.5 trillion issues that we know about as little as we know about them,” he said.
“It’s not in their head”
Doctors and scientists have long suspected that viral infections could be the cause of other chronic or debilitating diseases and conditions with mysterious origins, including multiple sclerosis, rheumatoid arthritis and chronic fatigue syndrome.
Then came COVID, triggering a wave of 93 million viral infections in the United States in just two years. Hospitals soon began to see patients like Waldo showing up to ERs and doctor’s offices with symptoms they couldn’t explain.
Dr. Alba Azola, who helps lead the post-acute COVID team at Johns Hopkins Hospital in Baltimore, Maryland, said she may see half a dozen or more other specialists to rule out other causes. before diagnosing someone with long COVID. After that, she says, her team will have to go back and forth with insurers and employers to help their patients find housing.
“It’s not in their head,” Azola said of her patients. “It’s not something that’s just to get out of work or a disability scam. These patients just want to be themselves again.
One of Azola’s patients, Jazmin Holcombe, is among the luckiest when it comes to her professional life. After four months in hospital with COVID, the 29-year-old was able to get back to work working from her home office in marketing. She had not been vaccinated when she contracted the virus last year because, she said, she had been nervous about a new vaccine and stayed home most of the time.
But she is still far from her old self. Now, rather than planning trips or going to concerts like before, Jazmin spends much of her time doing physiotherapy in the hospital, taking an oxygen cylinder with her wherever she goes. She said her doctors hoped to have a better idea by the end of the year of her prognosis.
“Nobody knows yet,” she said.
“No man’s land”
This uncertainty in the lives of young long-haulers and its impact on the economy has caught the attention of senior officials and scientists.
The National Institutes of Health has launched a $1.5 billion study to identify causes and find treatments for long COVIDs. And, the Biden administration has added long COVID as a condition that qualifies as a disability under the Americans with Disabilities Act — a ruling that requires employers to provide workplace accommodations.
Additionally, the Labor Department has partnered with the Centers for Disease Control and Prevention and the Office of the Surgeon General to gather insights from the public on “workplace challenges” related to the long COVID.
Taryn Williams, assistant secretary of labor for disability employment policy, said she hopes to have an analysis of that effort in the coming months. In the meantime, she said, people can go to www.covid.gov/longcovid to see what benefits they might be eligible for. They can also get free advice through the Job Accommodation Network at askjan.org, she said.
“We do not yet know the extent of the impact of long COVID on the economy or the workforce. But we know public health and safety is essential to a healthy economy, which is why we’re so focused on it,” Williams said.
For now though, accommodations for employers may still be scarce, especially without legal aid.
Mark DeBofsky, a disability attorney and professor of law at the University of Illinois at Chicago John Marshall Law School, said people should know that many lawyers, including himself, won’t charge their clients until they win a deal. He said he advises his clients to keep any medical documents they have and to take statements from family members about how they might have changed.
Keeping detailed logs of their symptoms can also be a good idea, he said.
“I think it’s still a mixed bag,” DeBofsky said of insurance companies and employers responding to long COVID patients.
“Every disability claim is very complex, and I don’t blame the insurance companies for really doing their due diligence,” he added.
But even people who keep detailed records can be dismissed, like Frantz Dickerson, a 55-year-old sales manager who worked during the pandemic for a company that sold and repaired elevators. Dickerson’s job was to travel to Philadelphia where he stood on rooftops or climbed the elevator shafts of high-rise buildings and hospitals to provide security and order fixes.
After being diagnosed with long COVID — a mental state he describes as feeling like his brain was going from a 10-lane highway to two lanes — his doctors suggested he take time to rebuild his cognitive abilities and physical.
But according to her employer’s disability insurer, Dickerson could still work in sales. This is because the insurer defined a sales job as primarily sitting at a desk, even though that was not an accurate description of what he was doing. His former employer did not respond to requests for comment and his insurer said it would not discuss individual cases due to confidentiality concerns.
“I was kind of in this no man’s land,” Dickerson said of his rejection. “Insurance says I’m not disabled, but my work says, ‘no, you can’t come back until your doctor releases you completely.’ And my doctors weren’t completely releasing me because they understood COVID for a long time.
Dr. Benjamin Abramoff, who treated Dickerson as head of PennMedicine’s post-COVID care clinic and confirmed details of his case, said he would often spend hours filling out paperwork for patients. Abramoff said he knows of other doctors and clinics who have pulled out of the specialty because they don’t have the staff or the resources to do so.
Abramoff said he wants more data on effective treatments and is closely monitoring ongoing studies. But he would also like insurers to agree to use the same standardized forms.
“It’s a big administrative burden,” he said. Insurers “send the forms and the forms are rejected for technical details (like) a box that was not filled in correctly. And then it has to come back to be filled in or edited again.
Dickerson eventually switched jobs from sales to fully remote work. After several months of therapy, he says he’s better now that he’s learned to pace himself and take breaks if he needs to, including playing the guitar, which his doctor has encouraged him to do. to do.
As for Waldo, she finally landed an official long COVID diagnosis: “Post COVID-19 Condition ICD10 code U09.9” — a medical code that didn’t exist until about a year ago.
But she’s about to use up her once-impressive savings of $70,000 to pay for medical treatment and living expenses — money she hoped to use to buy a house one day and maybe travel.
In the meantime, she still plans to get married next year. But everything else, including starting a family, is on hold for now.
“I just don’t know what my body can handle,” she said.
ABC News producers Vika Aronson, Kelly Terez, Iru Ekpunobi and Cate Barbera contributed to this report.
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