The Biden administration recently announced that it would acknowledge long COVID as a disability, providing long COVID sufferers legal protection under the Americans with Disabilities Act (ADA), and earlier this year, the National Institutes of Health (NIH) announced it is investing $1.15 billion over the next four years in long COVID research.
In another important, although perhaps less headline-grabbing development, the World Health Organization (WHO) assigned long COVID its own defined ICD-10 code, the system of diagnostic codes that health care practitioners use for reimbursement from patients’ medical insurance companies, which are critical to providing patients with access to treatment. Without standard codes, patients have been hit with unexpected bills and left to navigate the bureaucracy of medical insurance reimbursement on their own. The medical establishment has also acknowledged the need for further research and the scope of long COVID as a public health crisis, as articulated in a recent editorial by The Lancet.
These are all promising developments, which accelerate medical research and grant access to much needed resources and protections for long haulers. Legal protections and access to disability benefits through the Social Security Administration are especially critical, as many long haulers have been unable to work at times, and often require accommodations from their employers.
Perhaps equally important, they help to reframe the issue of long COVID as a serious population-wide public health crisis. Too long dismissed by physicians, long COVID is now understood to affect about a third of people who recover from initial infection with COVID-19. A recent paper in The Lancet showed that 68% of some of the earliest hospitalized COVID-19 patients in Wuhan, China experienced one or more COVID symptom six months after their initial infection.
In my own research and treatment experience with long COVID patients, many are unable to work and are overwhelmed by routine daily tasks. They experience symptoms ranging from fatigue, shortness of breath, “brain fog,” sleep disorders, fevers, gastrointestinal symptoms, anxiety, and depression. Nearly all were initially dismissed by a family practice or other physician who suggested their symptoms were “all in their head.”
Fortunately, scientists and physicians are working hard to characterize long COVID, and we’re now beginning to understand that it is a unique and distinct medical condition of its own. Research shows that long COVID occurs when spike proteins of the SARS-CoV-2 virus remain in a person’s body, in reservoirs of the immune system. The spike proteins are not able to reproduce, as they lack the genetic material required, but they do cause inflammation as the body’s immune system reacts to them.
The spike proteins spread around the body, especially during exercise, and cross the blood-brain barrier, which likely accounts for the exercise intolerance of many long haulers, as well as the neurological effects. We are also able to reliably diagnose long COVID patients in a non-subjective way by analyzing patterns in cytokines, different types of proteins produced by a person’s immune system, to identify a long COVID immune system “fingerprint.” And with better understanding, new treatment approaches are emerging that address the underlying causes of the disease, not just the symptoms.
While the institutional recognition of long COVID is very encouraging, and research is shedding more light on the nature of — and treatment pathways for — long COVID, greater awareness among ordinary people, their physicians and scientists is needed. More than 35 million Americans have been infected with COVID 19, and estimates suggest as many as 10 million or more may be experiencing long COVID symptoms. Organizations like the Long COVID Alliance can help to provide patients and their families with resources and support, but more professional dialog among doctors and collaboration among researchers is critical to ensuring they have access to the research and medical support they need.
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Unfortunately, long COVID is going to be a public health issue for the foreseeable future; we need to come together and help each other through it.
Bruce Patterson is the CEO of IncellDx, where he is developing a new paradigm for predicting, identifying and treating long COVID-19 and other viral pathogens that impair the immune system’s ability to function effectively. He previously served as Medical Director of Diagnostic Virology at Stanford University School of Medicine. A version of this piece was originally published in the San Francisco Chronicle. Numerous resources are available to people experiencing long COVID, including CovidLongHaulers.com.