Long COVID, big financial impact: Working difficult or impossible for some patients

Patrice Piretti used to feel her best when she was pushing herself — rising before 5 a.m., swimming laps at full speed for an hour before work and winning promotions as a nurse and manager.

That was before she contracted COVID-19 in March 2020.

Less than a year later, crippling fatigue, brain fog, vertigo and other lingering health problems made it impossible for her to keep up with her job duties. The symptoms brought her 25-year nursing career to an abrupt and unwelcome end in January 2021, she said.

“I'm a nurse — you go to work, you take care of your patients, that's what we do,” the 62-year-old Huntington Station resident said.

But, she said, now “I’m no longer a nurse…. I’m a patient.”

The change has taken an emotional toll — and a financial one. Piretti, who holds a master’s degree in health care management and had been promoted in spring 2020 to help oversee case management at two hospitals in the Northwell Health system, has scuttled her plans to work into her late 60s, along with her hobbies of tennis, golf and hiking. Her low point came when her memory failed in front of someone who told her she had "Swiss cheese for a brain," she said. Piretti went to her car and cried. Not long after, she reluctantly went out on medical leave and never returned.

“My six-figure salary and my matching 401(k) are no longer happening,” she said. Her husband Robert, 76, who had retired as a social worker before the pandemic, has gone back to working five days a week, she said. The pair have cut back on expenses such as traveling and buying gifts for their four children and two grandchildren.

Piretti is one of millions of Americans suffering COVID-19 symptoms long after their initial infection. Many find working has become difficult or impossible even as they face rising health care costs and other expenses.

The federal census bureau’s most recent Household Pulse Survey reported that an estimated 17.3 million working-age Americans still had fatigue, brain fog, difficulty breathing, heart palpitations or dizziness at least three months after COVID-19 infection. Of those, 13.7 million said their symptoms limited their day-to-day activities. In New York, 2 million people ages 18 to 64 reported symptoms of what has come to be known as long COVID, with nearly 840,000 saying they’ve cut back on daily activities.

Roughly 2 million to 4 million Americans are out of work due to long COVID, with an estimated $105 billion to $230 billion annual hit to their incomes, an August report by the Brookings Institution found.

Downward spiral

At Stony Brook Medicine’s Post-COVID Clinic, Dr. Sritha Rajupet said she has helped patients fill out paperwork to take medical leave or apply for disability benefits due to long COVID symptoms.

“That's been a hard change for many from a financial standpoint, and especially from an emotional standpoint, to say that I’ve studied, I've worked so hard, I've come this far in my career, and I'm taking a step back, not out of choice,” said Rajupet, who directs the clinic. “A lot of people have leaned on family support, some of my younger patients have moved in with their parents again. Others have lost their home, they've lost their insurance, and it becomes this downward spiral, right? Because now you don't have health insurance, you can't afford payments [for] doctor's office visits. ... One virus, one illness has turned their life upside down.”

'One virus, one illness has turned their life upside down.'

- Dr. Sritha Rajupet, director of Stony Brook Medicine’s Post-COVID Clinic

Credit:Morgan Campbell

The impact of long COVID on employment is especially severe for those whose jobs require manual labor and cannot be done remotely.

For many workers, “their employment and their ability to care for themselves is limited because they could have persistent symptoms – it’s hard to breathe, some people told us their memories are shot,” said David Nemiroff, president and chief executive of Long Island FQHC Inc., a federally qualified health center.

The center charges sliding-scale fees for its low-income patients, many of whom have jobs in construction, warehouses, child care, entry-level health care and other low-paying industries, Nemiroff said. The pandemic “exacerbates an existing challenge that they already had, where they were struggling to pay the bills, they were struggling to be healthy,” Nemiroff said.

Among the center’s clients is Francisco Ramirez Urbina, 68, who had been working in construction in early 2020 to support his wife and their two college-age sons in his native Peru. Before COVID-19, he said in Spanish, “I would calmly climb scaffolds, ladders all the time.”

'I would calmly climb scaffolds, ladders all the time ... Now, I try climbing a small ladder with 10 or 15 steps, and I start shaking.'

-Francisco Ramirez Urbina

Credit: Newsday/Alejandra Villa Loarca

He came down with COVID-19 at the start of the pandemic, with a case so severe he was hospitalized and given supplemental oxygen. At one point he called one of his sons to say goodbye: “I felt like I was dying,” he recalled.

'I'm not the same person'

He recovered and returned to work in July 2020. But he still had difficulty breathing and suffered pain and weakness. It is not unusual for such ailments to persist months after the initial infection. Indeed, the Centers for Disease Control and Prevention estimates that roughly one in five COVID-19 patients will still experience symptoms for at least three months, if not longer. The agency estimates 40% of Americans have been infected with COVID-19.

Urbina injured his shoulder in an accident on the job. Now out of work and receiving worker’s compensation, he said, “I’m not the same person I was before.”

“Now, I try climbing a small ladder with 10 or 15 steps, and I start shaking. They tell me it could be a consequence of COVID,” the Hempstead resident said. He said he didn’t know how he would have gotten through the crisis without help from a community health worker who helped him get financial assistance and brought him groceries.

Like Urbina, many long COVID patients now struggle to keep up with work that once came easily. 

The number of people with disabilities has increased by 1.7 million since the pandemic began, and the number of disabled workers rose by nearly 1 million, the Federal Reserve Bank of New York reported last month. One study found that long COVID’s severity was equivalent to Crohn’s disease or moderately severe traumatic brain injury, the New York Fed reported. And in a study of nearly 4,000 long COVID patients, 45% cut back on their work hours, the California-based nonprofit group Solve ME/CFS Initiative and its Solve Long COVID Initiative reported.

Long COVID patients who work also must take time off for medical visits, which can get tricky, said Kacey Farber, a social worker and program manager at Northwell Health’s Huntington Hospital, who founded a free, online support group for people experiencing long COVID.

“Being sick is not good for one's career, but constantly going to doctors, especially in the city where there might be a two-hour travel time to and from, also is not good for your career,” Farber said.

Not fully accepted

Making matters worse, long COVID “has not been fully accepted. It is not fully believed. It's also not fully understood," she said.

“Every single person I've worked with would love to be able to work full time and be able to function,” but in some cases they face skepticism about their symptoms and need for accommodations, she said.

For many long COVID patients, the hit to their wages comes as their expenses mount.

That has been the case for Bonnie Soukup, 40, who lives in Bohemia with her husband Ian and 6-year-old son. Before she came down with COVID-19 in late December 2020, she worked four days a week as a therapist, lifted heavy weights with a personal trainer and loved to go on hikes and take her son to parks and activities.

Now she suffers from such severe weakness and fatigue that she sometimes uses a wheelchair to get around. Her short-term memory has suffered, she experiences severe headaches – “it felt like an ax was cutting my skull,” she said – and she has had to reduce her working hours by 5 to 10 hours a week.

Her husband also has cut back his working hours to help care for her and their son since she is often too weak to do so on her own. The family’s income has fallen by about 20% as a result, she said.

“The financial impact was significant,” she said.

The Soukup Family

$12,000
Out-of-pocket medical costs for Bonnie Soukup in 2021

$120/day
Cost of babysitting for their child

20%
Reduction in the family’s income due to long COVID

Credit: John Roca

At the same time, the family has had to pay high costs for out-of-network visits with medical specialists who do not accept their Fidelis insurance, along with expensive procedures such as MRIs, which her insurance denied coverage for multiple times before finally approving the brain scan, she said. A recent scan showed spots on her brain that her doctors said could indicate that she has experienced mini-strokes, she said. She has been prescribed medication for dementia, she said.

They’ve also had to hire babysitters at times when relatives and friends were not available to help, at a cost of up to $120 a day, she said.

“In 2021, we had to spend over $12,000 in medical expenses out of pocket,” Soukup said. “If we weren't able to have our mortgage deferred, we could have lost our house, we would not have been able to pay our mortgage and all of these medical expenses.”

For years, many patients and employers have been seeking ways to bring down medical expenses by choosing health insurance plans that charge lower premiums but have deductibles of $5,000 or $6,000, said Dr. Frank Coletta, chief of critical care and co-director of pulmonary care at Mount Sinai South Nassau in Oceanside.

That worked well while they were healthy, but patients with long COVID can easily spend thousands on medical care, he said. “Those are unanticipated expenses ... a lot of their disposable income is now going to cover their very high deductibles.”

“Most practitioners say that it could take up to a year for some of the long COVID symptoms to improve … but there are some that even go beyond that,” Coletta said.

For patients who cannot find a cure, many “almost feel guilty that they are unable to perform as they used to,” he said. “They look for remedies and ways to improve this without having any return on that.”

In some cases, makers of alternative treatments set their prices high “to make people believe that they may be of quality and value,” and desperate patients can spend hundreds of dollars on the treatments without results, he said.

For some patients who must leave the workforce or cut back their hours, neurological impairments can make it difficult to complete the paperwork needed to apply for disability benefits, Huntington Hospital’s Farber said. “Filling out pages and pages of documentation and being on the phone for hours, that is not something they are able to do,” she said.

That can add to the difficulties facing anyone seeking disability benefits. The Social Security Administration imposes a five-month waiting period before its disability benefits kick in, said Jonathan R. Klee, managing partner with Klee, Woolf, Goldman & Filpi LLP in Mineola.

Some patients get approved for benefits fairly easily if their application includes strong medical evidence, but others face repeated denials that can drag the process out for years, Klee said. “When someone's not working, and they're unable to pay for general necessities, like housing and food, it can be extremely difficult for them,” he said.

At the start of the pandemic, some patients who contracted COVID-19 at work were able to get worker’s compensation, but that has become more difficult, he said.

'People want to work'

With so many workers experiencing the disorder, employers will need to make accommodations such as schedule changes or remote work when possible, said Bach, with the Brookings Institution.

“Most people who work want to work,” Bach said. “People aren't excited at the thought of staying home for some paltry disability payment. So let's help them get back to work.”

Those who cannot work at all, or whose jobs cannot be modified, will need a “safety net,” she said.

Piretti, the former nursing manager, said she is “redefining my life to find a new normal.” Earlier in the pandemic, she donated blood plasma to help patients who might benefit from its antibodies, and on an especially hard day she got a phone call from a blood bank worker who credited her donation with saving a doctor's life, she said.

She also takes comfort from a recent conversation she had with a former nursing student.

“My career is done. … It’s over,” Piretti recalled telling her former student.

The former student “said, ‘No, it’s not over. ... You planted seeds,’” Piretti recalled, her voice breaking. “She said, ‘we're all out there, you helped us all, and your career is continuing through us.'”

With Alfonso Castillo

By Maura McDermott

maura.mcdermott@newsday.commauramcdermott

Maura McDermott is a reporter on the investigations desk. Since starting at Newsday in 2012, she has also covered real estate and the business of health care.