USA TODAY International Edition

Not a ripple: ‘ This is a tsunami’

Long- haul illnesses carry an untold economic cost

- David Robinson

The seemingly endless COVID- 19 illness gripping Ronald Gaca offers 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 afloat through unemployme­nt benefits – about $ 800 a week. But the payments recently expired, leaving few options for a manual laborer who now can barely make it up a flight 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 Buffalo.

“I don’t know If I’ll be able to do anything else, and it’s kind of scary.”

The uncertaint­y prompted Gaca to file for federal disability benefits, part of the

Ronald Gaca has been unable to work and largely confined to home after getting

first wave of Americans eligible to apply because they have suffered COVID- 19 symptoms for at least a year. The disability fight ahead is only part of the massive web of financial struggles facing the millions of Americans suffering from COVID- 19 symptoms that could last months, even a lifetime.

The USA TODAY Network interviewe­d dozens of long- haul COVID- 19 patients, medical profession­als and economic experts, who talked of the daily economic woes and long- term financial ramifications 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,” he said.

Yet odds are many will be turned down; the Social Security Administra­tion denies more than half of applicatio­ns from disabled workers. 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 difficult 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 affected 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 significant long- lasting effects 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 benefits and fretting about his financial 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 financial 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 suffer 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 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 amplified for undocument­ed workers with limited options beyond high- risk jobs in agricultur­e and food processing while they are excluded from government aid and benefits.

Fiscal pitfalls endanger Latinos battling long- haul COVID- 19, Sugrue said, and threaten to unravel decades of hardfought 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 Wolffis, 49, a Hispanic fuel pump factory worker in Michigan who caught COVID- 19 in December.

Before the infection, Wolffis took pride in overcoming chronic pain from her fibromyalgia 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 affected 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.”

Wolffis 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, Wolffis sought care in late July 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 this month.

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,” Wolffis said.

The long- haul survivors

While debt and financial adversity are heavy burdens for many suffering the aftereffects 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 flood of layoffs. 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 intubation­related 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.”

Federal relief aid and COBRA shortterm health insurance covered some of Kong’s initial 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 gets 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 officer 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 afford health insurance.

Even after COVID- 19- related blood clots nearly killed him, he remains uninsured, finding even Affordable Care Act plans too expensive. A mobile health clinic helped him secure a free bloodthinn­er 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 benefits and additional leave offered 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 he didn’t need to use oxygen anymore and could return to work.

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 financial 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 find a job. And if I was on oxygen, who wants somebody who’s on oxygen?”

Lengthy legal battles

Americans seeking workers’ compensati­on benefits after the highly infectious disease ravaged their workplaces have stepped into another battlegrou­nd. As with disability claims, experts anticipate lengthy legal fights 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 difficult 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 essential jobs – police, firefighters, health care workers – face limited opposition to accessing workers’ compensati­on benefits 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 official who is also a primary care physician, called diagnoses at this phase of long- term COVID- 19 murky but expressed confidence she can make the case.

“It just takes time,” she said.

One of those counting on the assistance is Caitlin Barber. She was a 27year- 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.

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 workweek.

“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, fighting a lengthy legal battle with the New York State Workers’ Compensati­on Board over her medical costs, facing more than $ 75,000 in medical bills.

“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 financial stuff.”

Impact on health spending

While tales of Americans battling COVID- 19 illnesses mount, one story of the pandemic’s economic damage can be told through hospital finances.

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 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 offset the losses.

Buried in the avalanche of COVID- 19related financial analysis is a glimpse of the potential effect of long- term COVID- 19 patients on the health system, including a spike in outpatient care in the first 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 prepandemi­c levels, Hall said. While part of that increase reflects people catching up on treatments deferred the year before, it likely also suggests an influx in longhaul 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 fiscal impact as people were vaccinated, Hall said.

“We’re kind of at that inflection point where we’re seeing a first set of data as the vaccinatio­n era has come about,” he said at the time.

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 illnesses among first 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, first responders and their families have registered for the September 11th Victim Compensati­on Fund, a federal program that offers 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 financial 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.”

 ?? SETH HARRISON/ USA TODAY ?? More than a year after Lucy Kong, 47, an accountant in the New York City borough of Queens, contracted COVID- 19, she still carries the scars of the disease. “If I hear anything about COVID, I start crying,” she says.
SETH HARRISON/ USA TODAY More than a year after Lucy Kong, 47, an accountant in the New York City borough of Queens, contracted COVID- 19, she still carries the scars of the disease. “If I hear anything about COVID, I start crying,” she says.
 ?? KELLY MARSH FOR THE USA TODAY NETWORK ?? Caitlin Barber of Saugerties, New York, is caught in a legal battle over her more than $ 75,000 in medical bills.
KELLY MARSH FOR THE USA TODAY NETWORK Caitlin Barber of Saugerties, New York, is caught in a legal battle over her more than $ 75,000 in medical bills.
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