Patients Are Desperate for Better Long COVID Treatments

Ty Godwin loved marathons. The dedicated runner got COVID-19 in January 2020 and was diagnosed with long COVID a year later.

Ty's journey in search of recovery has been recorded on the blog he originally started to document his frequent running with a child with special needs through Team Hoyt San Diego. Initially, symptoms were mild, so he continued to train. He also continued working through the following year, despite the increasing brain fog and memory loss that now defined his life. He now says that “overdoing it” in 2020 was the reason his long COVID symptoms are so bad now.

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Searching for a Care

Ty has had more than 200 doctors' appointments as he works to restore his health to what it was. 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 Sjogren’s (another autoimmune disease) and Epstein-Barr virus (EBV) markers—is another reason why he developed long COVID and the heart and brain fog symptoms have not dissipated.

While he has a team of doctors in Denver, Ty has sought care widely throughout the United States. He has flown for appointments at Mayo Clinic and RTHM, a progressive clinic in Oregon that uses research, testing, and innovation to care for people suffering from long COVID and ME/CFS. He’s traveled also to Boston to participate in a new study exploring his cognitive issues through a brain study at Mass General Hospital and Harvard University. Dr. Dahlene Fusco, an infectious disease clinician-researcher at Tulane who has studied long COVID patients since 2020, confirms that “it’s not a straight line of improvement, it’s a jagged trend of relapses.”

Alternatives Are Available, But Expensive

In part because of this winding road, many long COVID patients have foregone conventional medical care in search of their own remedies. These healthcare "wanderers” pay out of pocket for tests and treatments to understand and improve their symptoms. So, Ty has also pursued alternative therapies: acupuncture, cognitive behavioral therapy (which has since become controversial in the long COVID community,) neurofeedback therapy, “triple therapy” for micro clots, and he is trying a hyperbaric chamber (HBOT) and IV treatments.

Ty says that one of the primary blocks to his recovery is “gaslighters and deniers” in the medical profession. This is no surprise. Long COVID patients often describe frustration because their clinicians don’t believe their symptoms are real. Ja’Mia Hewitt, a COVID long-hauler and nurse, said it this way: “This health care system is like pulling teeth,” and described how most clinicians need to be “more proactive versus reactive for patient care” for long COVID patients. Alternative practitioners are often more able and willing to provide this quality of care—at some cost.

Ty estimates his medical expenses over the past three and a half years are over $100,000, and when he considers what he’s paid in medical premiums—especially when he had to move to insurance with high premiums—he has spent more than $46,000. Along the way, he has also spent another $11,000 on alternative therapies (like neurofeedback mapping and therapy). He’s also spent more than $3,000 on additional tests not covered by insurance.

Ty received disability payments from his company that will cover him until retirement age, and then Social Security Disability (which is rare with long COVID). His wife is a small business owner, which helped too. He notes that many others have been much worse off financially, with lost homes, jobs, and social lives accompanying their ill health. But without adequate recovery, Ty estimates that he will lose nearly $1 million dollars in lost wages. Medical costs have become a major cause of bankruptcy in the United States. 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 like long COVID.

Ty is just one case of many where a lack of trust in the medical establishment—of feeling unheard and unseen in the struggle to get well—is pushing people toward alternative treatments that amplify their financial stressors. It reminds that adequate treatment for long COVID is still a long way from being either available or affordable.