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One coronavirus survivor manages her medical bills in color-coded folders: green, red and tan for different types of documents. A man whose father died of the virus last fall uses an Excel spreadsheet to organize the outstanding debts. It has 457 rows, one for each of his father’s bills, totaling over $1 million.
These are people who are facing the financial version of long-haul Covid: They’ve found their lives and finances upended by medical bills resulting from a bout with the virus.
Their desks and coffee tables have stacks of billing documents. They are fluent in the jargon of coronavirus medical coding, after hundreds of hours of phone calls discussing the charges with hospitals, doctors and insurers.
“People think there is some relief program for medical bills for coronavirus patients,” said Jennifer Miller, a psychologist near Milwaukee who is working with a lawyer to challenge thousands in outstanding debt from two emergency room visits last year. “It just doesn’t exist.”
Americans with other serious illnesses regularly face exorbitant and confusing bills after treatment, but things were supposed to be different for coronavirus patients. Many large health plans wrote special rules, waiving co-payments and deductibles for coronavirus hospitalizations. When doctors and hospitals accepted bailout funds, Congress barred them from “balance-billing” patients — the practice of seeking additional payment beyond what the insurer has paid.
Interviews with more than a dozen patients suggest those efforts have fallen short. Some with private insurance are bearing the costs of their coronavirus treatments, and the bills can stretch into the tens of thousands of dollars.
“There are things I’ve researched, and known I should do, but I have a fear of being blindsided by the bills,” said Lauren Lueder, a 33-year-old teacher who lives in Detroit. She has depleted $7,000 in savings to pay for treatment so far. “You end up with a battery of tests, and every single thing adds up. I don’t have the disposable income to constantly pay for that.”
For 10 months, The New York Times has tracked the high costs of coronavirus testing and treatment through a crowdsourced database that includes more than 800 medical bills submitted by readers. If you have a bill to submit, you can do so here.
Those bills show that some hospitals are not complying with the ban on balance billing. Some are incorrectly coding visits, meaning the special coronavirus protections that insurers put in place are not applied. Others are going after debts of patients who died from the virus, pursuing estates that would otherwise go to family members.
Hospitals and insurers say that they have tried to adapt to the different billing guidance for the pandemic, but that confusion can arise when new charge codes are created and new rules set up quickly.
Coronavirus patients face significant direct costs: the money pulled out of savings and retirement accounts to pay doctors and hospitals. Many are also struggling with indirect costs, like the hours spent calling providers and insurers to sort out what is actually owed, and the mental strain of worrying about how to pay.
Ms. Miller, like many other patients, described trying to sort out her complicated medical charges — in her case in color-coded folders — while also battling the mental “brain fog” that affects as many as half of coronavirus long-haul patients.
“I have a Ph.D., but this is beyond my abilities,” she said. “I haven’t even begun to look at my 2021 bills because we’re still dealing with 2020 bills. When the bills come nonstop, you can only deal with so much.”
The United States is estimated to have spent over $30 billion on coronavirus hospitalizations since the pandemic began, according to Chris Sloan, a principal at the health research firm Avalere. The average cost of each hospital stay is $23,489. Little research has been published on how much of that cost is billed to patients.
“The government is focused on getting the vaccine out, but it doesn’t look like there is anyone out there thinking more about the long-term impacts on the people experiencing unusually high costs from Covid,” said Nancy-Ann DeParle, a former Obama administration health policy adviser and co-chair of the Covid Patient Recovery Alliance, a new nonprofit that plans to study the issue.
Patients who have tried to take advantage of their insurers’ cost waivers are sometimes finding themselves thwarted by hospitals and providers that don’t code their bills as related to coronavirus. Without the right coding, the patients’ normal deductibles and co-payments apply.
One coronavirus patient in Chicago recounted spending 50 hours trying to get the coding for an M.R.I. scan changed, to show it was related to coronavirus. His insurer will pay the entire bill if that happens — but if not, he is responsible for $1,600. So far, the issue is still unresolved.
“I’ve heard so many stories of people being completely stymied filling out reimbursement forms and trying to get insurance to cover them,” said Senator Tina Smith, Democrat of Minnesota, the lead sponsor of a bill to make coronavirus care free. “It’s almost as if the system is designed to make it hard to get reimbursed.”
Congress mandated that insurers make coronavirus testing free last spring, but never wrote a similar requirement for treatment coverage — in part because insurers were volunteering to waive patient costs, she said.
Insurers are now starting to wind down those special protections: Aetna, Anthem and UnitedHealthcare — three of the country’s largest health plans — have ended some portion of their waivers this year. They have decided to treat the virus the same as the many other diseases that send patients to doctors’ offices and hospitals.
Some emphasized they are now focused on ensuring patients get Covid vaccines without facing any costs.
“There was a feeling that many private plans were initially covering treatment, but now that is petering out and leaving people on the hook,” Senator Smith said.
Some Covid financial long-haulers never became ill themselves, but are overwhelmed by the bills that deceased loved ones left behind.
Rebecca Gale, 64, lost her husband of 25 years, Michael, to coronavirus last summer. Their insurance fully covered most of the “big stack” of medical bills that Ms. Gale received after his death. But it paid only a small portion of the $50,009 air ambulance bill for Mr. Gale’s transport between hospitals when his condition was deteriorating.
“I cry every day; this is just another thing that breaks my heart, that on top of losing my husband I have to deal with this,” Ms. Gale said.
The family’s health insurance plan limits its coverage of air ambulances to $10,000, and the air ambulance company spent months pursuing an additional $40,009 from Mr. Gale’s estate. Ms. Gale retired last year, from a job at an Ohio automotive factory stamping car parts, anticipating she would get to spend more time with her husband. After he died and the bills started to show up, she considered looking for a part-time job to help pay the charges.
Health care companies have discretion over what to do about the debts of deceased patients, sometimes pursuing their estates for reimbursement.
The air ambulance company, PHI Medical, declined to comment on Mr. Gale’s bill but said in a statement that it “followed the regulatory requirements” for billing coronavirus patients. It did cancel the charges, however, after The Times inquired about the bill.
Shubham Chandra left a well-paying job at a New York City start-up partly to manage the hundreds of medical bills resulting from his father’s seven-month hospitalization. His father, a cardiologist, died from coronavirus last fall.
For months he has spent 10 to 20 hours a week working through the charges, using his mornings for reading through new bills, and his afternoons for calls to insurers and hospitals. His spreadsheet recently showed 97 bills rejected by insurance with a potential of over $400,000 the family could owe. Mr. Chandra tells providers that his father is no longer alive, but the bills continue to accumulate.
“A large part of my life is thinking about these bills,” he said. “It can become an impediment to my day-to-day. It’s hard to sleep when you have hundreds of thousands of dollars in outstanding debts.”
Some coronavirus patients are postponing additional medical care for long-term side effects until they can resolve their existing debts. They are finding that long-haul coronavirus often requires visits to multiple specialists and many scans to resolve lingering symptoms, but they worry about piling up more debt.
Irena Schulz, 61, a retired biologist who lives in South Carolina, became ill with coronavirus last summer. She has multiple lingering side effects, including problems with her hearing and her kidneys. She recently received a $5,400 bill for hearing aids (to help with coronavirus-related hearing loss) that she had expected her health insurance to cover.
She has eschewed trips to the emergency room when feeling ill because she worries about the costs. She’s managing her kidney-related pain by herself, at home, until she feels she can afford to see a specialist.
“I keep on with Tylenol and drinking a lot of water, and I’ve noticed it does help if I drink a lot of pineapple juice,” she said. “If the pain gets past a certain threshold, I’ll see a doctor. We’re retired, we’re on a fixed income, and there are only so many things you can accumulate on the credit card.”