covid long haulers testing status infographic

In June, during his second week of having Covid-like symptoms, Andrew Ficker took a turn for the worse. His left arm went numb, he had pain in his chest and he felt dizzy. He went to the emergency room, fearing that he was in the middle of a heart attack.

Over the next month and a half, Ficker, a web designer based in Orlando, Fla., went to the E.R. another six times with similar symptoms, and at some points with completely new ones (at one point he went to the E.R. because his legs went completely numb). Ficker is a Covid-19 “long-hauler” — a patient whose symptoms from the virus persisted for months. He also does not have health insurance.

His first trip to the E.R. set him back $1,000. Another particularly bad episode required two nights in the hospital — that visit resulted in a nearly $5,000 bill. After all of his visits to the emergency room, Ficker, 28, owed the hospital around $10,000, all of which he had to pay out of pocket.

Ficker is part of a slice of the long-hauler community whose struggle is twofold — alongside the persistent symptoms and struggle to be taken seriously by doctors that most long-haulers endure, they also worry about paying for their treatment.

Uninsured people understand the long and often financially crippling bills that come with emergency treatment and scans. Long-haulers — whose illness is largely unstudied, and whose symptoms are mysterious and numerous — often look to doctors for insight and assurance. So, in many cases the overlap between these two groups leads to a tug of war between health and financial well-being. Many avoid treatment, in the process risking their health.

As the many and varied forms of long-term symptoms show, the future is unpredictable. Some patients have experienced long-lasting neurological, respiratory and circulatory issues, intensifying the need for all-too-expensive care. While the number of known long-haulers grows, so too does the number of uninsured people as the Affordable Care Act comes under attack in the courts and high unemployment strips insurance from millions of Americans.

The plight of a long-hauler

Covid-19 long-haulers have long bouts of illness that often include odd and constantly changing symptoms. While the early description of Covid-19 illness includes fevers, coughing and shortness of breath, long-haulers have documented a plethora of other symptoms — and some never have these three so-called primary symptoms.

Symptoms are often most severe during the first several weeks of illness, but persist in a more mild form for an extended period — some have symptoms for five months or longer. Some say it’s worse for them in the long term than it was in the short term. Some have relapses every several weeks.

Body Politic, a wellness company, runs a Slack support group for long-haulers with over 14,000 members worldwide. Body Politic conducted a survey of 640 long-haulers and compiled a list of 62 symptoms common to the group early in the pandemic, completing its work in May. The list includes typical symptoms as well as unusual ones — including tingling or numbness in extremities, tachycardia and vertigo. The survey is currently being updated. Read more about symptoms here.

Another support group — the Covid Long-Haulers Discussion Group on Facebook, with nearly 6,000 members — administered its own survey of members’ symptoms. The group now has a list of over 100 symptoms reported by members.

Long-haulers often face skepticism from doctors and friends about whether their symptoms are truly related to Covid. It doesn’t help that many long-haulers have never had a positive nasal swab test for active infection — the Body Politic survey found that 27.5 percent of respondents tested negative and 47.8 percent were never tested at all.

But, Body Politic found that 60 of 62 symptoms documented in the survey were experienced equally by those who received positive and negative tests — the only symptoms more common in positive people were a loss of smell and taste. Body Politic suggests in its analysis of the survey that “current testing practices are not capturing a large subset of Covid-19 patients and that more investigation into this is required.”

Current testing in the U.S. has its own problems — the tests are plagued with faulty results even now. Plus, for long-haulers who first contracted the virus early in the pandemic, tests were only available in hospitals and emergency rooms, so they had no access to testing until weeks after their first symptoms.

Ficker received two negative Covid-19 tests for evidence of active infection, but later tested positive for antibodies for the virus, suggesting that he had been exposed sometime in the past  despite his negative results. His roommate tested positive for Covid-19 and had mild symptoms, so Ficker reasons that he must have been exposed.

Cutting corners to cut costs

Long-haulers without insurance often do whatever they can to avoid the costs of medical care — even when that means ignoring terrifying symptoms.

When Ficker thought he might be having a heart attack before his first visit to the E.R., he tried to convince himself that it was nothing serious. He chewed a few aspirin — he had heard that that can help.

“At first I was gonna call 911 but then I said, ‘Ok, you don’t have insurance. Think about this. Is this an emergency?’” Ficker said in a phone interview with ClearHealthCosts. A quick phone conversation with a friend convinced him that it was indeed an emergency.

Ficker had a friend drive him to the E.R. For later episodes of more severe symptoms, he opted to take an Uber rather than an ambulance.

Ficker moved to Orlando six months ago to work at a start-up. Although his old job provided insurance, his new gig does not — it’s his first time living without insurance in his life. He said that he figured not having insurance would not be a significant issue. Even when the pandemic hit, he was not panicked — he had heard that young people have an easy time with the virus, after all.

Over two months since he was infected, Ficker still experiences symptoms. He has fatigue and brain fog (a lack of sharp mental focus or memory), and he often wakes up in the middle of the night with numb limbs. He said he even occasionally hallucinates sounds.

His employer was understanding — Ficker was allowed to take as much time off as he needed while remaining on the payroll. He is taking on more remote working hours now, but his brain fog makes him feel slow.

Ficker has been able to cover the costs of his E.R. visits by digging into his savings and with a GoFundMe created by his sister.

Resisting care

Amanda Finley, one of the administrators of the Covid Long-Haulers Discussion Group on Facebook and a long-hauler herself, has also had to rely on alternatives to insurance.

“I don’t have a GoFundMe right now, but maybe I should,” she said in a video interview with ClearHealthCosts. Finley has posted fundraisers on Facebook to raise money to cover costs.

Finley, 43, an archaeologist from Kansas City, first developed symptoms in early March. She has asthma, and within several days developed symptoms that she recognized as pneumonia. At a community health clinic she knew would accept uninsured people, Finley received an X-ray that confirmed her suspicions (which she has not received the bill for yet). Still, the doctor would not order a Covid-19 test because she had not been to China.

Amanda Finley (left) with her son

Finley fears that she may have blood clots like other long-haulers, but cannot afford the blood work necessary to find out. Like Ficker, she feared that she was having a heart attack at one point — she had a “knotting feeling” in her chest that radiated down her arm. She didn’t call an ambulance because of the cost.

“If it wasn’t a heart attack, then that’s a lot of money,” she said. So, she waited it out. She went on social media and told her friends: “Never stop telling my son I love him.” After a while, her symptoms subsided.

There were other moments where Finley thought she might need to go to the hospital for shortness of breath, but resisted. She reasoned that they might put her on a ventilator, which is expensive.

Finley helped launch the Facebook page to establish a community that would help her and others like her. Though she only hoped to find 50 people in situations like hers, the group now has 5,800 members.

Finley has not had any work for her archaeology job since March, and she says her fatigue would make it difficult for her anyway. Before the pandemic, she worked for a food delivery service on the side, but has stopped because of her illness and the potential risk for reinfection. Finley lost her two sources of income — she has lived off of unemployment during the pandemic.

Undetected complications

For some, long-hauler status can mean unpleasant complications down the road. Without insurance to cover scans and visits, many did not find out about these complications for many months.

Mary Lee, an insurance agent from Richmond, Va., first contracted the virus in mid-March. She had classic Covid-19 symptoms at first: shortness of breath, a dry cough and a loss of taste. The only tests available at the time were in hospitals, and she knew the costs that came with E.R. stays. She has since tested positive for antibodies.

Lee’s job at an insurance call center does not come with insurance, and she cannot afford to buy it herself. She rents a single room in a house for herself, rides a scooter to work and was helping her daughter pay her way through college — the first member of her family to do so in two generations — until that daughter graduated in June.

At one point early in her illness, Lee, 56, woke up in the middle of the night feeling like she couldn’t breathe. Her lips were blue and she felt dizzy, but she laid back down rather than calling an ambulance — she knew she couldn’t handle the steep cost without insurance. Two hours later, the feeling of suffocation returned. Her blood oxygen saturation on her pulse oximeter read 82 percent — a reading below 85 percent likely merits a trip to the hospital, and a reading below 80 can mean damage to vital organs.

“I was going to incur the cost of an ambulance because I thought that I was going to die,” Lee said in a phone interview with ClearHealthCosts. “In retrospect, I think it’s by the grace of God that I’m still here.” Despite her willingness to take the cost, Lee was too dizzy to dial 911. No one was nearby to help.

Now, Lee continues to have symptoms — brain fog, fatigue and hair loss. She said she can hardly walk 50 yards, and the summer humidity in Virginia makes it hard to breathe. She says that hair loss is the worst of it — “I’m a natural redhead. My hair is my warning label,” she joked.

On July 31, she saw a doctor for the first time since her symptoms began. Lee went to Patient First Urgent Care Center, which caps visit charges at $299 for uninsured patients. A chest x-ray found blood clots in her lungs and an EKG was abnormal — Lee believes both findings are linked to coronavirus. There is preliminary evidence that patients with severe Covid-19 are at risk for blood clotting.

Lee was referred to a cardiologist at a Virginia Commonwealth University clinic. She is going back soon to receive a pulmonary function test and a cardiac stress test — Lee worries that there is more wrong than the doctors found initially. As for the cost of the tests, the clinic has uninsured patients apply for Medicaid within 45 days of treatment and — fortunately for Lee —  the clinic covers the costs even if Medicaid denies the patient.

One of the doctors Lee saw said she should quarantine for 14 days pending a negative test because she could be contagious. Her employer asked her to come into work regardless — she refused, opting to follow the doctor’s orders, and was fired.

Skepticism from doctors

Laurie LaCross-Wright, a central Florida-based musician, says she first contracted Covid-19 in mid-January. She said she had a “strange respiratory bug” with fatigue and a dry cough. Because she has no insurance, she avoided going to the doctor.

Laurie Lacross-Wright/By Matt Hallowell

Although LaCross-Wright’s story clashes with the widely accepted timeline for coronavirus in the U.S. — that the virus arrived as early as late January on American shores, and even then only in a few people — she has had symptoms characteristic of Covid-19. Besides her fatigue and dry cough, she also had phantosmia (smelling something that is not actually there), which is a common symptom among long-haulers.

Of course, it’s not impossible that she had the flu or another bug in January and then Covid-19 later on. Many long-haulers express frustration over doctors’ incredulity. Because little is known for certain about coronavirus, long-haulers say that their stories should not be discounted.

In April, while still dealing with fatigue and coughing, LaCross-Wright had a heart attack. She felt pain in her chest and throat that moved to her shoulder and down her arm in waves.

“I held off going to the hospital as long as I could because we are uninsured and I thought, ‘This hospital bill will kill us,’” she said in a phone interview with ClearHealthCosts. “And finally, I decided, ‘Well, I really don’t want to die today.’” Throughout the drive to the hospital, she continued to stress about the cost.

LaCross-Wright had a blocked artery, the doctors told her. When she proposed that it was connected to coronavirus, the doctors were dismissive — without a positive test, they didn’t believe that she had the disease.

LaCross-Wright applied for financial assistance with the bill immediately, but still had a $300 out of pocket cost. She and her husband don’t qualify for Medicaid because their gross income is above the cut-off, but LaCross-Wright said that with all of their expenses as self-employed musicians, they have little money left over to use for insurance. She hopes that they can avoid any more serious issues before they qualify for Medicare in two years.

LaCross-Wright said that she doesn’t think indoor restaurant venues are safe, especially because people often don’t wear masks. She and her husband have played one small venue that they trust — the money they earn from two shows a month is their only income for the foreseeable future.

LaCross-Wright said that she knows musicians who have contracted the virus from indoor venues and later died. It does not make her eager to return to indoor venues any time soon.

Covid tests required

The lack of a positive Covid-19 PCR test provides another hurdle for long-haulers without insurance.

The CARES Act created the Provider Relief Fund, which is meant to cover the costs of Covid-related testing and treatment. But in many cases these funds don’t provide any support for uninsured patients, both long-haulers and others.

According to the Health Resources and Services Administration, which runs the program for uninsured individuals, claims can be reimbursed for Covid-19 testing or for treatment of uninsured individuals with a Covid-19 diagnosis. PCR tests for Covid-19 active infections have been treated as the gold standard for diagnosing patients, so without a positive test, uninsured patients often cannot be reimbursed.

When Ficker first went to the emergency room, he was tested for Covid-19. The hospital told him the bill would probably be covered because it was coronavirus-related. He paid it anyway, not wanting to receive a surprise bill months down the line.

For his six other visits to the E.R., his bills were not covered — because he had tested negative, doctors were skeptical that he ever had the virus.

Early in the pandemic, there were widespread shortages of testing, plus the lion’s share of tests were saved for healthcare and frontline workers. As a result, many with more “mild” cases — meaning non-hospitalized patients — were denied a test. Antibody tests, meant to show past exposure to the virus, are plagued by inaccuracies.

Even insured long-haulers face steep out-of-pocket costs without a Covid-19 diagnosis. One long-hauler, who spoke on condition of anonymity because she is a health insurance financial advocate, received a negative test in the hospital, so her insurance did not cover the visit. She is currently appealing the decision.

“There are so many of us [long-haulers] that don’t have a diagnosis,” she said in a phone interview with ClearHealthCosts. Plus, she said, because so little is known about long-haulers’ disease, doctors tend to perform more tests, and those costs can add up quickly.

For Ficker, a lack of a Covid-19 diagnosis meant that doctors would look for other explanations for his symptoms. After Ficker’s first visit, E.R. doctors began blaming his symptoms on anxiety — they even tried to prescribe him Xanax.

“I was trying to convince them that I’m not crazy, I’m just sick,” Ficker said.

Ben Glickman

Ben Glickman is a student journalist at Brown University with experience with data analysis, investigative tools and audio storytelling. He is passionate about holding power...