The seemingly endless COVID-19 illness gripping Ronald Gaca offers him little hope of ever returning to the workforce, let alone the road construction job that supported his family.
Since his infection in March 2020, the 59-year-old New Yorker’s chronic fatigue and breathing struggles have kept him mostly homebound. His hand tremors can last hours, raising concerns about a rare COVID-19 symptom, or Parkinson’s disease.
Amid the medical saga, Gaca’s household budget stayed afloat through unemployment benefits – about $800 a week. But the payments recently expired, leaving few options for a manual laborer who now can barely make it up a flight of stairs carrying a laundry basket.
“I’ve been doing construction and pouring concrete since I graduated from high school, and I don’t know anything about computers,” said Gaca, who lives in the Rust Belt town of Lancaster, just east of Buffalo.
“I don’t know If I’ll be able to do anything else,” he added, “and it’s kind of scary.”
The uncertainty prompted Gaca to file for federal disability benefits, part of the first wave of Americans eligible to apply because they have suffered COVID-19 symptoms for at least a year. The disability fight ahead is only part of the massive web of financial struggles facing the millions of Americans suffering from COVID-19 symptoms that could last months, even a lifetime.
The USA TODAY Network interviewed dozens of long-haul COVID-19 sufferers, medical professionals and economic experts, who talked of the daily economic woes and long-term financial ramifications of a disease that, in many ways, remains a mystery.
“Long-haul COVID-19 is a manifestation of just so many social and economic issues,” said Dr. Amanda Johnson of New York City’s Take Care Program for COVID-19 survivors. “It is also about what is the larger impact on lost years from the workforce, as well as who is going to step up and support them.”
The safety nets set up to provide that support – workers’ compensation and disability – are far from guaranteed.
President Joe Biden vowed in late July to prevent discrimination against them.
“We’re bringing agencies together to make sure Americans with long COVID who have a disability have access to the right resources that are due under the disability law,” Biden said.
Yet odds are that many will be turned down; the Social Security Administration denies more than half of disabled worker applications. In-person services were closed for 17 months to limit pandemic risks, leaving claims backlogged.
Long-term COVID-19 illnesses also remain new to medicine and difficult to diagnose, further muddying the road to government aid. Regulators issued emergency guidance in April on how to process the complex disability claims, establishing rules for determining how severely COVID-19 had affected applicants.
“There are some people who will spend many years going through the process before they are approved,” said Stacy Cloyd, a policy expert with the National Organization of Social Security Claimants’ Representatives. “There are those who – despite having real and significant long-lasting effects of COVID – will not qualify for disability.”
For Gaca, news came Sept. 7 that his disability claim was being approved. It followed more than three months of legal wrangling by his attorney. He is still waiting for details about the benefits and fretting about his financial and professional future.
“At least it’ll be money coming in that I can count on,” he said. “And I don’t have to worry about killing myself trying to get back to work.”
Across the country, a common theme emerged: The cost of long-term COVID-19 reaches far beyond those battling the illness.
Experts warn the pandemic may trigger a generational financial downturn in communities of color. More Black and brown people living in crowded housing and working high-risk jobs in industries such as hospitality and meatpacking contracted the virus, so they also are expected to disproportionately suffer from long-haul COVID-19.
Latinos, for instance, accounted for more than 33% of coronavirus cases but just 18% of the population, according to studies earlier this year.
“The impact on the Latino community of COVID is it puts the brakes on incredible economic gains that were being made pre-COVID,” said Noreen Sugrue, The Latino Policy Forum’s research director.
The pandemic's economic wreckage is amplified for undocumented workers with limited options beyond high-risk jobs in agriculture and food processing while they are excluded from government aid and benefits.
Fiscal pitfalls endanger Latinos battling long-haul COVID-19, Sugrue said, and threaten to unravel decades of hard-fought progress in homeownership and educational attainment, sending shock waves through the U.S. economy.
“Think about long-term consequences in terms of what COVID broke,” she said. “This is not a ripple, this is a tsunami.”
That tsunami continues to crash over Esperanza Wolffis, 49, a Hispanic fuel pump factory worker in Michigan who caught COVID-19 in December.
Before the infection, Wolffis took pride in overcoming chronic pain from her fibromyalgia to log more than 60 hours many weeks. The virus seems to have exploited her preexisting condition, she said, causing her body to go haywire.
“It’s affected me in so many ways, and I feel foggy and unsure of myself,” she said. “My pain is unspeakably worse … and I have bouts of extreme fatigue, where just trying to take a shower takes my breath away.”
Wolffis lives with her husband, a heavy-equipment operator, in Muskegon, a small port city west of Grand Rapids. She has been out of work most of this year, receiving employer-sponsored short-term disability payments that fall more than 50% below her prior earnings – wages plus overtime.
After burning through their modest $5,000 savings and seeing limited improvement in her health, Wolffis in late July sought care at the nearest long-term COVID-19 clinic, an hour from her home. She was placed on a waitlist and expects to begin specialized physical therapy in mid-September.
Meanwhile, the summer humidity wreaked havoc on her pain and breathing problems, and she dreaded the looming out-of-pocket costs for the clinic – expected to be anywhere from $100 to $300 per visit based on her prior care.
“It’s like a nightmare that has not ended,” Wolffis said.
The long-haul COVID-19 survivors
While debt and financial adversity are heavy burdens for many suffering the after-effects of COVID-19, they can be crushing for those who were the sickest.
Lucy Kong, an accountant in Queens, ended up in a coma and on a ventilator last spring after contracting COVID-19. About two months after she woke up in mid-April 2020, the 47-year-old single woman joined the flood of pandemic-related layoffs. Her employer attributed it to slumping business, not her health challenges.
Kong’s low point came in September 2020, when she had an emergency tracheostomy because of intubation-related scarring.
A year later, she still has the tracheostomy tube and she is still out of work, facing more rounds of corrective surgery, brain fog and debilitating social anxiety.
“If I see nurses, I start crying. If I hear anything about COVID, I start crying,” she said. “It’s just been really hard for someone who had everything, and now I don’t leave the front of my house.
“When I go out, people stare because it’s not very common to see people that have a trach,” she said, “so that’s really hard as well.”
Federal relief aid and COBRA short-term health insurance covered some of Kong’s initial medical costs, but the bills keep piling up – now about $10,000. Beyond the cost of doctor visits and physical therapy, she rents medical devices for post-tracheostomy care and attends therapy for post-traumatic stress disorder.
Kong credited the government assistance, $30,000 from a GoFundMe campaign started by a friend and support from family with fueling her painstakingly slow recovery. Despite all the trauma, she still feels grateful to be alive after COVID-19 killed so many others.
“Things are very sad for me, but I’m one of the lucky sad people,” Kong said.
For Steve Smith, 62, a retired police officer in rural Tennessee, a near-death COVID-19 illness underscored gaps in the American health care system that preceded the pandemic.
Before contracting COVID-19 at a funeral in November, Smith was living alone on $650 a month from his pension in a one-story home he owns, unable to afford health insurance or a major hospital visit.
Even after COVID-19-related blood clots nearly killed him, he remains uninsured, finding even Affordable Care Act plans too expensive. A mobile health clinic helped him secure a free blood-thinner drug prescription, but he still faces a daunting medical bill of $2,100 for the emergency room visit and testing that saved his life.
“We had two billionaires just travel to outer space. I mean, come on,” Smith said. “If you work and pay taxes, if you pay into the system … you should have health care.”
A doctor’s visit in July was all that separated Bruce Colbert, a self-described workaholic, from his job driving an Oklahoma City bus. He was particularly partial to the route headed to Norman, the college town about 20 miles south of the state’s capital city.
COVID-19 had sent him to the hospital in January and kept him home ever since. He struggled with shortness of breath and fatigue – a walk to the kitchen could leave him winded. For months he relied on an oxygen tank.
By the time of the July 19 appointment, Colbert had exhausted his Family and Medical Leave Act benefits and additional leave offered by his employer. That aid could be extended, but it was not guaranteed.
The doctor monitored the levels of oxygen in his blood as Colbert walked around the exam room.
“It was one of those things that I was saying, ‘Lord, either I will get healed and go back to work, or we are going to be in dire straits,’ ” Colbert said.
After some tense moments, the doctor told him that he didn't need to use oxygen anymore and could return to work.
Bruce told his employer, which required a return-to-work physical that also included a walk and oxygen-level test and a drug test. He passed, and his first day back was July 26.
Back behind the wheel of the city bus, Colbert spends a lot of time thinking about other long-haul COVID-19 patients still facing health and financial uncertainty.
“That’s what scared me the most,” Colbert said. “The precipice of going over that cliff into the unknown.
“I understood that if I lost my job, I’m 50 trying to find a job. And if I was on oxygen, who wants somebody who’s on oxygen?”
Long-haul COVID-19 and workers' compensation
Americans seeking workers’ compensation benefits after the highly infectious disease ravaged their workplaces have stepped into another COVID-19 battleground.
As with disability claims, experts anticipate lengthy legal fights await many long-haul COVID-19 patients who may struggle to make the case they contracted the virus on the job.
“Unless you’re someone who is kind of a hermit and only goes back and forth to work, or there is a workplace that has a major outbreak, it is perhaps one of the more difficult types of cases to prove,” said Aaron Halstead, a Wisconsin-based attorney specializing in workers' compensation.
Many states have established new regulations and laws that ensure key essential jobs – such as police, firefighters and health care workers – face limited opposition to accessing workers’ compensation benefits for COVID-19-related illnesses.
The legal debate hinges in part on doctors properly diagnosing long-term COVID-19 cases and linking them to workplace infections. Johnson, the New York City health official who is also a primary care physician, called diagnoses at this phase of long-term COVID-19 murky but expressed confidence that she can make the case.
“It just takes time,” she said.
One of those counting on the assistance is Caitlin Barber. She was a 27-year-old newlywed in Saugerties, New York, before COVID-19 landed her in a wheelchair last year.
Barber and her husband moved back in with parents in the Hudson Valley north of New York City during a grueling recovery.
“We needed every single body to try to wash me and care for me,” she said. “We relied heavily on my parents’ help. They kept us fed and did everything for us.”
In April, Barber returned to work as a nursing home dietician in Rhinebeck. Months later she still struggled to make it through a 40-hour work week.
“Pre-COVID, I was a marathoner and would go to work for eight hours before coming home to train for three hours of running,” she said. “Now, I’m just completely exhausted all the time.”
Barber has found herself in a sort of post-COVID-19 triathlon, fighting a lengthy legal battle with the New York State Workers’ Compensation Board over her medical costs, facing more than $75,000 in medical bills and still coping with her physical recovery.
“Having these things while you’re sick is so stressful,” she said. “You don’t have the energy to function in life, let alone trying to do all this financial stuff.”
Long-haul COVID-19’s impact on health spending
While tales of Americans battling lengthy COVID-19 illnesses mount, one story of the pandemic’s economic damage can be told through hospital finances.
At least 39% of hospitals nationally are expected to operate in the red this year based on the latest industry analysis in March. Total hospital revenue in 2021 was also predicted to fall $53 billion to $122 billion from pre-pandemic baselines, according to Kaufman, Hall & Associates studies prepared for the American Hospital Association.
Much of the financial losses at hospitals stemmed from a mix of providing costly COVID-19-related care, including to millions of uninsured and underinsured patients, while Americans afraid of contracting the disease deferred other care.
It could have been even worse had the federal CARES Act not provided $178 billion to offset the losses.
Buried in the avalanche of COVID-19-related financial analysis is a glimpse of the potential effect of long-term COVID-19 patients on the health system, including a spike in outpatient care in the first half of 2021, according to Dale Hall, managing director of research at the Society of Actuaries.
The category of health care not requiring overnight hospital stays – ranging from elective surgeries to physical therapy – was up 15% to 20% from pre-pandemic levels, Hall said. While part of that increase reflects people catching up on treatments deferred the year before, it likely also suggests an influx in long-haul COVID-19 patients seeking care.
Before the delta variant triggered a fourth wave of coronavirus infections this summer, researchers were tantalizingly close to getting a clearer picture of long-term COVID-19’s fiscal impact amid rising vaccinations, Hall said.
“We’re kind of at that inflection point where we’re seeing a first set of data as the vaccination era has come about and looking pretty specially for what trends are for outpatient services,” he said at the time.
The prospect of millions of Americans once again deferring care or facing long-term COVID-19 symptoms, however, extends the timeline for determining the true financial toll.
Aaron Wesolowski, American Hospital Association’s vice president of policy research, analytics and strategy, expanded on the uncertainty.
“In terms of when we’re going to get back to something resembling baseline, it’s really hard to say,” he said.
A growing list of health systems are opening clinics focused exclusively on long-term COVID-19. The treatments include some of the costliest aspects of health care, from neurology and cardiac specialists to life-long physical therapy needs. Just diagnosing long-term COVID-19 can require the full array of high-tech medicine – from echocardiograms to CT, MRI and PET scans.
Dr. Juan Wisnivesky is tracking about 1,000 long-haul COVID-19 patients at Mount Sinai Health System in New York, a federally funded project. He compared the pandemic recovery era to the aftermath of 9/11, when the health care system struggled to diagnose and treat sometimes mysterious illnesses among first responders and others who spent time at Ground Zero.
“There are obviously parallels with the consequences of the World Trade Center exposure, an acute event that we spent years trying to understand the health impacts of,” he said.
More than 113,000 survivors, first responders and their families – from that event have registered for the September 11th Victim Compensation Fund, a federal program that offers compensation for an injury, illness or death tied to the attacks.
As of April 30, the fund had awarded nearly $8.4 billion, with more than 37,500 claims approved for compensation, more than half of those submitted.
Millions of Americans may need various degrees of financial help related to long-haul COVID-19 conditions that require further study, Wisnivesky said.
“Those kinds of problems and challenges,” he said, “will take time to study and be understood.”
Contributing: Vincent Gabrielle and Dana Branham of the USA TODAY Network.