The Washington Post – December 2021

Author: Christopher Rowland

Before the coronavirus ruined her plans, Tiffany Patino expected to be back at work by now. She and her boyfriend intended to move out of a basement in suburban Maryland, where his grandmother lets them stay for free, so they could raise their infant son in a place of their own. Maybe get a new car.

But Patino got sick with covid-19 more than a year ago. Instead of getting better, chronic exhaustion and other symptoms persisted, delaying her return to a restaurant joband swamping her goal of financial independence. After reaching what she calls her “hell-iversary” last month, Patino remains unable to rejoin the workforce. With no income of her own, she’s exhausted, racked with pain, short of breath, forgetful, bloated, swollen, depressed.

At 28 years old, she can barely take her baby to the playground. “I go on a walk, and I have to use the stroller like a walker,” she said. “Whatever life I have right now, it’s more like surviving. I’m not living my dream. I’m living a nightmare.”

Across America, many of the nearly 50 million people infected with the coronavirus continue to suffer from some persistent symptoms, with a smaller subset experiencing such unbearable fatigue and other maladies that they can’t work, forcing them to drop out of the workforce, abandon careers and rack up huge debts.

Hard data is not available andestimates vary widely, but based on published studies and their own experience treating patients, several medical specialists said 750,000 to 1.3 million patients likely remain so sick for extended periods that they can’t return to the workforce full time.

Long covid is testing not just the medical system, but also government safety nets that are not well suited to identifying and supporting people with a newly emerging chronic disease that has no established diagnostic or treatment plan. Insurers are denying coverage for some tests, the public disability system is hesitant to approve many claims, and even people with long-term disability insurance say they are struggling to get benefits.

Employers are also being tested, as they must balance their desire to get workers back on the job full time with the realities of a slow recovery for many patients.

“They are suffering in dramatic ways, and in ways that have altered their lives and placed them in financial peril,” said Harlan Krumholz, a cardiologist and scientist at Yale University and Yale New Haven Hospital.

The Washington Post interviewed more than 30 people around the country experiencing the sudden financial slide caused by the long form of the disease. They have been laid off and fired, quit jobs, shuttered businesses. They described falling behind on rent, mortgages and car payments. Some worried about losing their housing.

Depression and anxiety that are part of the brutal mix of long covid symptoms are exacerbated by despair over vanishing income. From health-care professionals and small-business operators to government employees and warehouse supervisors, the patients expressed fears about never being able to return to work.

Often referred to as “long haulers,” they experience mild symptoms to begin with, then get stuck with months of chronic fatigue, shortness of breath, confusion and memory loss, erratic and racing heartbeats, radical spikes in blood pressure, painful rashes, shooting pains and gastrointestinal problems.

The government calls it post-acute sequelae of SARS-CoV-2, or PASC. The National Institutes of Health is spending $1.15 billion to study the syndrome. The symptoms sometimes subside, lulling long haulers into a false sense of relief, only to come roaring back after performing simple chores like vacuuming a living room or raking leaves.

Patino is afraid to carry herson for too long, worried she will drop him. She takes naps every day. If she did return to work as a server or host in a restaurant, she fears she would quickly get fired for missing work.

“I just feel so old. I feel so tired. When you are dealing with so many symptoms, every day it’s like a lottery pick,” Patino said.

Doctors treating long haulers say the symptoms cut across race and class lines.

“I have hundreds of patients who have had to take time off for long periods of time, quit their jobs, or get fired from their jobs, or take lesser-paying jobs” because of long covid, said Janna Friedly, vice chair for clinical affairs at the Department of Rehabilitation Medicine at the University of Washington School of Medicine, where she and her team are helping long haulers build strength and return to work.

On top of the loss of income, some patients lose their employer-sponsored health insurance when they can’t work. “I’ve seen patients who have gone from fully insured to not being able to come back and see me in clinic in the middle of our treatment because they have lost their job and no longer can afford to seek care,” Friedly said.

Even for those who do have insurance, treating long covid can be unusually complicated and costly, since it’s a new disease without an established diagnostic or treatment plan and coverage for certain tests may be denied.

Health insurance companies,citing the blizzard of tests being ordered, say they are waiting for data-driven protocols to emerge so they can match insurance coverage with the best testing and treatment strategies for long covid.

“In many cases, the kitchen sink approach is not helping,” said Michael Sherman, chief medical officer of Point32Health, a nonprofit insurance company in Massachusetts formed from the merger of Harvard Pilgrim and Tufts health plans. Until research is published into what tests and treatments work, he said, “there’s a lack of evidence that anyone can look to.”

‘This virus took my career’

The cognitive and emotional impacts also make it difficult for patients to navigate the bureaucratic tangles required to keep health insurance and file disability claims after a job loss.

John Buccellato, 64, an emergency medicine doctor at an urgent care clinic on Manhattan’s Upper East Side, was hospitalized with the virus in March 2020, in the same hospital where his mother died of covid.

In a matter of days, he went from treating patients at a busy clinic to being engulfed in a health crisis as covid attacked his lungs and vascular system.Severe cognitive and emotional strain left him unable to manage his day-to-day affairs.

Overwhelmed by brain fog and the sense of loss over his career, he frequently sobbed on the phone as he described his strugglesin an interview,including the loss of his employer-sponsored insurance.

A clinical neuropsychologist treating him, Gudrun Lange, said Buccellato experienced brain bleeds and a tumor. He repeats himself and seems easily confused.

“He starts getting emotional, involuntary crying, and there’s nothing he can do about it,” she said.

Buccellato said he has tens of thousands of dollars in unpaid medical bills that accumulated when he first lost his health insurance.He has some property and savings, but no weekly cash flow, he said. He signed up for COBRA, which provides a continuation of health insurance after a job loss, but after congressionally approved waivers that made it free expired in September, it now costs $922 a month, he said.

Garage operators briefly impounded his Lexus because he could no longer pay the $400 a month to park the car, he said.Now it’s on the street, accumulating tickets.

Buccellato said he recognizes his career is prematurely over, but he can’t figure out how to dig himself out of his worsening financial predicament. A lawyer helped him file a disability claim with the Social Security Administration, which a member of his support team said was recently successful. Because he left work for medical reasons, he was not eligible for unemployment insurance.

“This virus took my career away. I can’t do anything in the medical field right now. Nobody is going to hire me,” he said.

Other patients who experienced a similar plunge in income with the loss of their professional careers described their new reliance on government aid.

Chimere Smith, 39, a middle school teacher in Baltimore who has testified in Congress about covid’s impact on her life, has not worked since she caught the virus in the early weeks of the pandemic.

She has blown through $12,000 in savings and is on food stamps.

She said the sense of loss is profound because she worked her way up from a childhood in a poor area of Washington, D.C. Before she got sick, she had hoped to become a school principal.

“I was following the trajectory of what I was told for years to be successful and Black in the world,” she said, “and to have it all taken away by illness is a loss that I don’t think I’ll ever recover from. Even using the word devastation doesn’t really capture the full scope of my experience.”

She also plans to apply for disability assistance.

But many patients applying for disability insurance benefits are initially denied and require lengthy appeals, according to patients, doctors and lawyers, in part because the medical community is still grappling with how to diagnose their symptoms.

The Social Security Administration said in an email that it has received 16,000 covid-related disability claims since December 2020, but the agency would not disclose how many of those were approved or denied.

Patients, advocates and lawyers said private disability insurers, which offer long-term disability coverage through employee benefit plans, have also been denying many claims.

For individuals who said they can’t work, the denials are frustrating. Michael Heidenberg, 48, of White Plains, N.Y., was unable to return to his $60,000 a year job as an academic adviser at Berkeley College, a regional for-profit college that kept him on for four weeks beyond the 12 weeks of unpaid leave required by the Family Medical Leave Act requirement. The college said it could not keep him on the books longer because it would create a hardship for his department, he said.

Heidenberg had purchased long-term disability insurance through his former employer, which promised a benefit of $3,100 a month, up to $150,000.

But Reliance Standard, the insurance carrier, recently denied his first application, saying he could do his job sitting down.

Heidenberg said that does not take into account his inability to concentrate for long periods and the dangerous spikes in his blood pressure since he contracted covid last year. Asked to discuss the denial, Reliance Standard said it would not comment on an individual claimant.

While he prepares for an appeal, Heidenberg said he and his wife, Alexis, are trying to figure out how to keep their apartment, which costs $1,700 a month, and cover COBRA health insurance, which is $1,200. He opted for COBRA over Medicaid or the Affordable Care Act exchanges because COBRA covers all the doctors he needs, he said.

“Finding doctors who are well-versed in treating post-covid patients has been incredibly difficult,” Heidenberg said.

Still, his COBRA eligibility will expire in March 2022 and he will need to find new insurance. Mike and Alexis have a GoFundMe page, which has raised $12,000. Alexis receives $988 a month in federal disability benefits because of a fibromyalgia diagnosis. That is currently their only income.

If they have to sell their apartment, they fear they will be priced out of White Plains, where they both grew up. Heidenberg expects his financial problems will get worse.

“It’s just this incredibly scary freight train coming right at us,” Heidenberg said. “You blame yourself. I was the primary breadwinner, and now we’re struggling because I got sick.”

In Kaufman, Tex., a small town 20 miles outside of Dallas, Angie Smith, 44, has slipped behind on $750-a-month payments on her Nissan Frontier pickup truck, which she bought when she was making more than $50,000 a year as an orthodontist assistant.

She said she was laid off in March 2020. Shegot covid eight months later and has been plagued by fatigue, shortness of breath, joint pain and spikes in body temperature ever since.

Unemployment checks that kept her financially afloat ended in September.

She said she had $150 in her checking account in mid-November and $1,400 in rent due in December. Friends from church have helped her hunt for jobs she can do over the phone from home.

“If I lose my house, then I could possibly set up my computer at someone’s house. If I lose my truck, I can still work from home,” she said. “I have so many of these scenarios going on in my head that I don’t know what to do.”

Nearly all of the patients interviewed by The Post said they wanted to return to work but could not figure out how to get back on the path to productivity.

“Employers are not used to dealing with this kind of work situation. Patients are often told, ‘Just come back when you’re 100 percent,’ which could be a really long time out,” said Greg Vanichkachorn, a family physician and occupational medicine specialist at the Mayo Clinic who is treating long-haul patients.

Employers and patients need to understand that many long haulers should return to work on a limited, part-time basis, perhaps working from home, while they slowly work on building strength, he said.

Seattle resident Eileen Hood thought she was ready to begin earning money again.

Hood got sick with covid in October 2020, forcing her this year to close the small business she had run with a friend for 15 years, selling wigs, specialized clothing and other needs for cancer patients. Hood’s attempt to return to the job she loved ended in frustration.

“Forty minutes into my last wig-fitting, with a lovely lady, I just simply did not have enough air or energy to finish,” she said.

The $70,000 per year she drew from the shop has evaporated, cutting her family’s income in half.

She is 53 years old and wants to get back to work. Hood said she went to a job interview in October but was forced to cancel her appointment for the second interview in November.

“I went out and raked some leaves and made dinner for my family, and the next day, I couldn’t get out of bed,” she said. “It’s the roller coaster of living with long covid.”

Feeling ‘worthless’

At the onset of the shutdowns in March 2020, Patino lost her job as a server at Firebirds Wood Fired Grill in suburban Maryland. Her boyfriend was laid off from another restaurant around the same time.

“We had to sign up for unemployment, and I was pregnant,” Patino said.

Two months after the September birth of her baby, Leon, she tested positive for the coronavirus.

Her symptoms were moderate, but she could no longer nurse her baby. She was first told she was probably suffering from postpartum depression, she said. She went for a second opinion and staff found signs of the classic “ground-glass” pneumonia in her lungs, she said.

“Almost a month later, right before Christmas, I was still feeling crappy, still feeling tired,” she said. By January, she went back to the hospital and was told she might be a “long hauler.”

“The doctor’s like, ‘In a few months, by March, by April, by the summer, you should be much better,’ ” Patino said.

But as summer passed into fall, with no more unemployment checks and winter approaching, her symptoms persisted, some of them strange: “I got my taste back and smell is still iffy. It comes and goes. I will smell smoke; I will smell gasoline. Sometimes I smell feces.”

Patino said she endures an isolated and depressing existence, knowing that many people are returning to normal while her plans remain on hold. She has considered trying an office job where she could work while seated but worries she would have to call in sick too often. Getting an apartment and a new car to replace their 2007 Kia remain out of reach, she said.

“I just feel like kind of a worthless person,” she said. “I can’t even do something like taking care of my child, cooking dinner, doing laundry and typical stay-at-home mom stuff.”

With long covid, she said, “my world shattered, and everything just came crumbling down.”