As Long COVID wreaks havoc on people and the workforce, experts call for more support

In April 2020, Anna VanderLaan, a health care worker in Wyoming outside Grand Rapids, began feeling symptoms of COVID-19 while at work. The next day she tested positive for the virus, and within five days she was in intensive care on a ventilator.

After six weeks and a tracheostomy that allowed her to be taken off the ventilator, VanderLaan was released for inpatient rehabilitation at other hospitals. 

“It was quite a journey to learn to walk again,” VanderLaan recalled.

By June 2020, she was discharged from inpatient rehab but still used a walker as she moved to outpatient therapy. She was easily fatigued and often fell asleep on the way home from therapy.

“It definitely felt like a slow build back. There wasn’t anything that was fast with recovery,” VanderLaan said.

She would not return to full-time work until November 2021.

An estimated 16.3 million working age Americans reportedly had Long COVID, according to the U.S. Census Bureau Household Pulse Survey for June to July 2022. 

Since the beginning of the pandemic, there have been 95.3 million cases reported in the U.S. and 1.06 million deaths.

The National Institutes of Health describes Long COVID as the health problems people experience within a few months of a COVID-19 diagnosis. It is the nation’s third leading neurologic disorder, as people suffer symptoms including brain fog, headache, dizziness, loss of smell or taste and muscular aches and pains. 

While patient recovery experiences vary, experts predict the cost in lost wages could be as much as $230 billion annually. Those suffering from longhaul COVID were more likely to face financial hardship than those without, conditions only exacerbated in the absence of paid sick leave, disability insurance and workplace accommodations.

“The socio-economic impacts of post-acute COVID make it such a public health measure. And, quite frankly, I just don’t think there’s enough programs to help these patients,” said Dr. Thomas Hordt of the Mary Free Bed Medical Group based in Grand Rapids. 

Road to recovery

VanderLaan’s return to her job was a gradual process. By September 2020, she was back with light duty at reduced hours. The next month, she began work-hardening therapy, focused on building the strength and condition of her body. 

“It was never easy; I don’t want to say that,” VanderLaan said. “The therapist would tell me what they wanted me to do and I was like, ‘Well I’ll try it. If I succeed, great. Otherwise, we’ll pull back and keep trying.’”

She said she was fortunate. Because she contracted COVID-19 from work, she received workers’ compensation. Her employer found things for her to do until she could work full-time, when most people would have lost their jobs, VanderLaan said. 

She’s also thankful for her family’s support. When she was discharged from the hospital, she stayed with her mother, who helped care for her and take her to appointments. 

Still, going back to her full-time position in November 2021 wasn’t without challenges. VanderLaan is not sure if her lungs will fully heal, and she still gets short of breath. She still gets fatigued, but says it’s not as bad as it used to be.

While the story is different for every Long COVID patient, Hordt said it’s important to set appropriate expectations.

“Based on the severity of a patient’s symptoms, I may tell them, ‘Listen, I think getting back to work is a good long-term goal, but we’re probably looking at about six months to a year before that’s going to be obtainable based on what you’re able to do now,’” Hordt said. 

Some of Hordt’s patients have been out of work from six months to over a year, placing a financial burden on families. Significant others may have to pick up additional hours, which places a strain on childcare, creating a snowball effect, Hordt said. 

“Some people get better faster, but the overall theme has been this is slower than anyone wants,’’ he said.

The impact of recovery from Long COVID on the country’s labor market is now coming into focus.

Between 1.8 million and 4.1 million full-time equivalent workers are out of the workforce due to Long COVID, Brookings Institute nonresident Senior Fellow Katie Bach projects. 

The annual cost of those lost wages comes out to about $170 billion a year, but could be as high as $230 billion. The workforce has already been battered by COVID with almost 100 million cases, leading to workers taking time off — which, during spikes like the initial omicron wave this winter, led to some temporary business closures for severe staffing issues.

And with more than 1 million Americans dying of COVID since 2020, that’s had a profound impact on families and the labor force, as well. 

In order to limit long COVID’s impact on the labor force, we need policy action and a better understanding of the disease and its impact on specific industries, said Jonathan Tsao, research and evaluation project manager for the Center for Health and Research Transformation. 

The Michigan COVID-19 Recovery Surveillance Study (MICReSS) released in June found that of 2,703 responses, 21.4% indicated they had 90-day Long COVID. It was more prevalent among women, Hispanic and poorer people as well as those over age 75. Also reporting a higher prevalence of the disease were those with pre-existing conditions, including emphysema, cancer, heart disease and chronic obstructive pulmonary disease (COPD).

“The impact of Long COVID has been overlooked for a long time,” said Nancy Fleischer, an associate professor of epidemiology at the University of Michigan and the survey’s principal investigator. 

“Even though we, as a society, perhaps are moving on from the day-to-day, high levels of anxiety around COVID infection, many people are continuing to suffer from ongoing struggles with Long COVID,” Fleischer said.

A need for more data

Another survey conducted by the Center for Health and Research Transformation (CHRT) puts into perspective the financial toll on people with Long COVID. 

It found 63% of participants said they had a hard time making money last as long as needed in the last year, compared to 31% of people who had COVID-19 but no Long COVID symptoms and 37% of people who had not contracted the virus. 

In the center’s Cover Michigan Survey, 138 people out of 1,000 responses reported a COVID-19 diagnosis. Of those people, roughly 1 in 3 identified themselves as COVID longhaulers.

Still, measuring the impact of Long COVID on the workforce is difficult with data in short supply, Tsao said.

Because Long COVID has only been in existence for roughly two years, experts haven’t studied the disease for long. And more research requires more resources and funding. While the National Institutes of Health is opening up funding streams, it’s going to take time to get better numbers, Tsao said.  

Bach also acknowledged the limitations of the available data in her own report, noting the Census’s Household Pulse Survey had a low response rate. 

She suggested adding questions about Long COVID’s impact on work to the household pulse survey, as well as the current population survey put out by the U.S. Census Bureau and the Bureau of Labor Statistics. 

Bach also recommended partnerships with National Institutes of Health researchers and Long COVID patient advocacy programs to focus the questions on information policymakers need to know. 

It will be critical to create support for patients, such as expanded paid sick leave and access to Social Security disability insurance, to issuing recommendations for employers on improving accommodations for employees.

“My point on this is kind of two-fold. One, we know enough to know [the impact is] big. We need to start doing something about it. We don’t need more proof that this is a problem,” Bach said. “But we live in a society of finite resources, and we actually do need to know the cost of things. So we do need to collect better data.’’

In Michigan, Gov. Gretchen Whitmer’s newly created Center for Data Analytics in the Department of Technology, Management and Budget could serve as one solution, bringing data from multiple sources under one roof, said Melissa Riba, the center’s research and evaluation director.

“I think what COVID showed us is that this is truly a cross sector issue. It’s not just for one State Department or one area like health care to consider,” Riba said. 

Tsao noted the importance of cross-sector partnerships in promoting acceptance of Long COVID as a disability. According to the U.S. Department of Health and Human Services, Long COVID can qualify as a disability under the Americans with Disabilities Act of 1990. 

Accomodations can still be hard to find in certain fields, Bach said, citing low-wage service jobs and certified nursing assistants as examples. 

While workplace accommodations and benefits can be difficult to come by, Hordt said he’d experienced less pushback from employers than expected. 

“I have no problems or qualms about making very specific restrictions as patients start to get back into work. So you know, that may be reduced hours, that may be reduced hours and days, that may be limited duties,” Hordt said.

“I can get super hyper focused with my recommendations and in my communication with patient’s employers,’’ he said.” I can’t really recall [a moment] off the top of my head where I was banging my head against the wall because an employer was just so resistant.”