Long Covid Costs

When a search to heal cripples your financial security

Medical bankruptcy has become a defining part of American life. The major cause of bankruptcy is illness or injury, followed close behind by one’s inability to pay the high cost of medical bills.  Six in ten Americans making less than $30,000 consider medical bills to be considerable. One in five families struggle to pay medical bills and this is more common among parents, people of color, and low-income families. These trends are amplified when a family member becomes sick—particularly if it’s a chronic condition. 

Long Covid presents another chronic condition to the American mix. It is a condition for which people experiencing symptoms feel dismissed by clinicians and impoverished by bills for both medical care and the search for alternative therapies. On the one hand, many patients describe frustration because their clinicians don’t believe their symptoms are real. Ja’Mia Hewitt, a Long Hauler and Nurse, said it this way: “This healthcare system is like pulling teeth. It is insane in the U.S. how awful our healthcare system is, how minimal our providers do in order to truly get proper diagnoses [for patients with complex chronic conditions] and be more proactive versus reactive for patient care.” On the other hand, people become so disabled by their symptoms that their lives are turned upside down: losing friends, jobs, financial security, and health. While many people have improved Long Covid symptoms with rest and time, many others have relapses after they have improved and think their life is back in order.

Dr. Dahlene Fusco, an infectious disease clinician-researcher at Tulane who has studied Long Covid patients since 2020, explained, “What I generally find is that it’s not a straight line of improvement, it’s a jagged trend of relapses. The general trends is that people are getting better.” Michael Sieverts, a Long Hauler who has long worked on projects of national health science and policy, explained how people living with Long Covid are adapting to living with the condition rather than returning to their pre-covid health. For instance, he has a colleague who paced her way back to work—coming back part and then full time. But to do this, she has to spend every Saturday in bed. And, even though it looks like she’s resumed her work life, that life is very different than the one she led before she got sick. In part because of this winding road, many Long Covid patients have foregone conventional medical care in search for their own remedies that address syndromic conditions.  

In a time of unprecedented access to information, patients with the highest income and access to resources have gone to extraordinary measures to understand what is causing their radical change in health and what to do about it to rediscover some semblance of pre-COVID normalcy. These “healthcare wanderers” are willing to pay for any test to understand what is going on in their bodies and any remedies that improve their symptoms. Many people simply want to get back to their families, jobs, and social lives in a way that is safe, energized, and familiar.

Pay to Play: An Athlete Searching for a Cure

Ty Godwin got COVID in January of 2020 when nobody knew what it was. When he was finally diagnosed with Long Covid nearly a year later at Mayo Clinic, he went with his wife to the hospital cafeteria and cried. He was in his late fifties—both engaged in busy and successful careers with their grown children out of the house. The last thing he expected was to be stalled at this peak of life by a debilitating illness. He said, “there were gaslighters and deniers even then, but there are more today.” Medical doubt is one of the main drivers for Ty’s Long Covid recovery journey. He has left no stone unturned, exploring myriad tests, trials, and cures for his heart and brain that have been severely damaged. Ty has recorded some of this journey on his blog. I describe some of Ty’s story here to illuminate the extraordinary cost of seeking recovery. Ty would be the first to say that his Long Covid exploration is in part because of his financial security—and few people have the opportunity to sample tests and treatments as he has.    

Ty’s body was once “a vision of perfect health”—at one point, Ty was frequently running with a special needs kid through Team Hoyt San Diego. But the symptoms got worse. He pushed on with work throughout 2020, trying to overcompensate for increasing brain fog and memory loss. He was worried about what he’d do if he lost his health insurance. The good thing was that he had a well-paid job and was able to file for disability and get private disability coverage approved. If you file disability while still employed—they have to cover you till retirement age. He still gets that benefit. And that company funded a social security disability attorney. The private insurance company was financially motivated to do so because Social Security would backdate to the date of disability; and pay benefits accrued. Regardless, this financial security has been fundamental for Ty’s ability to seek the tests and treatments for Long Covid that have been central to his life over the past three years.

Ty was recently awarded social security disability which is quite rare with Long Covid. He describes how it would have been nearly impossible to work through the application without a lawyer and emphasized how his work privilege enabled him to do so, suggesting that if you have limited funds and lose your job, it would be nearly impossible to fight for social security disability. This has enabled him to enroll in Medicare Advantage, which is more cost effective than private plans that have been overwhelming.

When I asked Ty if he can pay all his bills on private insurance disability and social security disability, he said he’s making 40% of the income that he was making before he got sick. It was a “serious haircut” of gross monthly income. He uses the word fortunate—which is a difficult word to use in this context. In comparison to many friends living with Long Covid who he has met online, he says he has been able to weather the storm. His wife is a small business owner, too. Many others have lost homes, jobs, and social lives along with their health.

To date, Ty has had more than 200 doctor’s appointments to figure out what happened to his body. When he started to conduct his own research on Long Covid, he noticed that his biology mapped on to those of other people with Long Covid. He was diagnosed years ago with ankylosing spondylitis, an inflammatory disease that can cause some of the bones of the neck and spine to fuse. Ty wonders if this condition along with a diagnosis of Sjogrens (another autoimmune disease)  is one reason his Long Covid has been so persistent—as some theorize people with autoimmune diseases are more likely to develop Long Covid.

What is extraordinary about Ty’s Long Covid journey is the depth of research and care-seeking he has sought. While he has a clinician he trusts at a large hospital in Denver, he has sought care widely throughout the United States not only to manage his symptoms but also to understand the underlying biological reality of his condition. Ty flew out four times to the Mayo Clinic to work closely with Long Covid Specialists. He’s flown to Oregon for testing and treatment at RTHM, a progressive clinic that uses research, testing, and innovation to care for people suffering from Long Covid and ME/CFS. (Some of this long term care is through telehealth visits.) Ty will soon fly to Boston to participate in a new research study that might provide some answers around cognitive issues through a brain study. Ty has also engaged in various alternative therapies: acupuncture, cognitive behavioral therapy (which has since become controversial in the Long Covid community,) neurofeedback therapy, and he is exploring a hyperbaric chambers (HBOT).

I asked Ty estimate what his medical expenses have been over the past three and a half years. I’ve included a Table here that Ty and I assembled together.  The first items listed are the medical expenses he’s incurred since 2020; while they vary each year, this cost alone is $27,574.28. When he considers what he’s paid in medical premiums—especially when he had to move to Cobra with high premiums—he has spent more than $38,000.

Ty’s costs, however, far exceed medical expenses and medical premiums. He has spent $18,000 flying around the country to seek answers from experts who take his conditions seriously and have potential solutions to improve his health. Along the way, he has spent another $11,000 on alternative therapies (like neurofeedback mapping and therapy). He’s also spent more than $3,000 on additional tests to better understand his biology and interrogate what potentially is at the heart of his radical change in health.

Ty estimates that will lose nearly one million dollars in lost wages. Obviously Ty’s affluence provides a type of privilege to explore his biological underpinnings to better understand his condition. For instance, he found out the other day his mitochondria is malfunctioning. He bemused that he couldn’t do much about it but it was interesting to know. I believe that this deep dive into his individualized healthcare journey will be a powerful draw once more effective anti-virals are available and people are enrolled in large RCTs.

It was fascinating to think about Ty’s journey this week when I also interviewed a grandmother living in Alabama on a shoestring. Theresa (pseudonym) drove a bus for 24 years but had to quit after her husband died because the pay was too small. Right before the pandemic, her husband choked and died unexpectedly—she said it was traumatic but she’s relieved he didn’t have to endure the pandemic years. She got a job at the casino in town right before everything shut down—she was coughing all over her orientation sessions and a few months later she took an antibody test that showed her intense cold was COVID. She’s had COVID four times and with each infection, her chronic conditions worsened. Like many people I’ve interviewed, she’s gained a great deal of weight because she reserves her energy for her most important task: taking care of her grandchild. She’s in the process of adopting her granddaughter, too, which is both an added stress and benefit. It’s clear how important her granddaughter is in her life and how Theresa is constantly caring for the family at 60 years age.

Now she’s on disability and Medicaid. The most frustrating part of this is that she lost her insurance and now cannot see the doctor she’s seen for thirty years because he won’t take Medicaid. She is counting down the days until she’s eligible for Medicare so she can go back to the doctor she adores. Her medications have escalated from four to twenty in two years, but her clinicians still won’t agree with her that she has Long Covid. She smiles and describes how lucky she is to live next to her best friend from high school: they spend time together every day. Although the doctors don’t believe in her illness, Theresa feels supported by her community.

These two treatment journeys – although small snippets into both Ty’s and Theresa’s lives—demonstrate how finances drive who has access to what knowledge about their health. While Ty’s sought answers across the country, Theresa cannot meet with her doctor of thirty years because she lost her jobs and subsequently her insurance. Understanding these disparities when talking about what biomedicine does and who seeks alternative therapies and why (and how) is a crucial thinking point.