Opinion: We Are Not Treating Long COVID With the Urgency it Deserves

For many years, scientists have suspected that multiple sclerosis may be a post-viral illness. The newly discovered relationship between MS and the Epstein-Barr virus reveals a common thread between the MS and long COVID.
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By: Andrew Wylam

President, Pandemic Patients

During the coronavirus pandemic, researchers of various disciplines around the world made several groundbreaking discoveries. One of the most consequential scientific achievements occurred when researchers at Harvard and Stanford concluded that the Epstein-Barr virus is a possible trigger of multiple sclerosis (MS). As a result, we learned that when the immune system attacks the virus to clear it from the body, it also targets a protein that is found on the insulating myelin sheath that protects the body’s nervous system. These nerves are responsible for sending signals between the brain and the rest of the body and damage to them results in many of the typical symptoms of MS, including fatigue, loss of balance or coordination, muscle spasms, muscle weakness, and numbness. For many years, scientists have suspected that multiple sclerosis may be a post-viral illness. The newly discovered relationship between MS and the Epstein-Barr virus reveals a common thread between the MS and long COVID.

As of April 2022, over 80 million Americans have experienced a confirmed COVID-19 infection, which represents over one-fifth of the country’s total population. On April 26, 2022, the U.S. Centers for Disease Control and Prevention (CDC) released seroprevalence data suggesting that most Americans have had COVID-19 at least once. The American Medical Association estimates that, among people who have recovered from an acute COVID-19 infection, 10 to 30 percent will continue to experience lingering symptoms, also known as “long COVID.” As of March 2022, the U.S. Government Accountability Office estimates that the current number of long COVID patients is between 7 and 20 million Americans.

The symptoms of long COVID include shortness of breath, joint and muscle pain, fatigue, brain fog, and many others. How these symptoms change over time varies from person to person: some people’s symptoms slowly improve, some people’s symptoms fluctuate between improving and worsening, and some people’s symptoms have not yet shown signs of improvement, or they have gotten worse. This disease course mirrors how multiple sclerosis can progress, which is characterized by either the progressive worsening of symptoms or symptoms that get worse during individual relapses and then temporarily improve. In addition to how the symptoms manifest, these two conditions share one other distinct feature: they both affect women more than men.

Regardless of the disease course that each multiple sclerosis patient experiences, it is inevitable that, without treatment, the condition will continue to progress, symptoms will continue to get worse, and a patient’s level of disability will accumulate. For many, the accumulation of disability chips away at people’s ability to engage in activities they enjoy. This includes spending time with friends and loved ones, maintaining gainful employment, pursuing hobbies, traveling, and for some, even their ability to walk and effectively communicate. We have not yet seen evidence that long COVID is a progressive condition that results in steadily accumulating disability, but it may be too early to tell. For MS patients, disease progression can take years or decades following the initial diagnosis. With long COVID, we have only been aware of the condition’s existence for about two years and there is so much that we do not know about it.

The total population of patients living with MS in the United States is nearly 1 million. In comparison to the total country’s population, that is a small number. However, in 2019 the National MS Society estimated that MS patients in the United States represent an economic burden exceeding $85 billion per year, with per-person medical costs exceeding $65,000 annually. The majority of these costs are driven by the exorbitant cost of treating MS and the economic burden associated with patients’ limited employment opportunities and reduced earnings as consequences of their disability. Some studies estimate that the lifetime medical costs per MS patient are over $4 million, with individual patient costs growing steadily as their disability accumulates. This places MS as one of the most expensive conditions to treat in the United States, second only to congestive heart failure. In terms of costs incurred by their reliance on the social safety net, the National MS Society estimates that roughly 40 percent of people living with MS rely on some form of disability insurance, including Social Security Disability Insurance, for their income. These figures demonstrate how even a small population of patients who are diagnosed with a chronic, progressive condition can have long-lasting impacts on our collective resources and they should caution us against underestimating the threat presented by long COVID.

Many Americans dismiss the threat of COVID-19 as a mild inconvenience. Others point to the falling hospitalization and mortality rates to justify letting their guard down. They are ignoring the mounting evidence that shows how COVID-19 damages nearly every organ in the body. We now know that even an asymptomatic case of COVID-19 can result in long COVID, which makes hospitalization and mortality rates irrelevant when assessing the long-term consequences presented by long COVID. We also know that getting vaccinated reduces your risk of developing long COVID after recovering from COVID-19, but it does not eliminate the risk entirely. That alone is reason enough to continue making every effort to avoid being exposed to the coronavirus, even if you are fully vaccinated. That includes being vigilant about wearing a face mask and social distancing.

If the experience of people living with MS is any indicator, long COVID will result in an extraordinary economic burden for this country, and we are simply not prepared for it. We are already seeing patients with long COVID leaving the workforce because of their disability, which is a precursor for the economic burden that long COVID patients may soon represent. For many Americans living with long COVID, they are also facing challenges securing eligibility for disability benefits as they leave the workforce, which is creating economic distress for many who, before now, never had to question their ability to provide for themselves and their family. As more people discover the true long-term consequences of COVID-19 and how it affects them personally, this emerging public health and economic crisis will truly take shape.

We have had decades of experience with multiple sclerosis to understand how it affects the human body and what we can do to mitigate the damage that it causes. In contrast, we have extremely limited experience with COVID-19 and long COVID. More importantly, the virus continues to mutate, the threat that it presents continues to evolve, and we are still no closer to the pandemic being over. We may soon find that people who have recovered from COVID-19 begin to experience a whole new array of debilitating symptoms that defy explanation or treatment. We may also find that long COVID becomes a progressive condition that leads to the accumulation of disability that is associated with excessive lifetime medical costs for patients. Tragically, we may learn these things while people are still being infected with COVID-19 because they underestimate the consequences of being exposed to the virus.

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