Recent data have brought more bad news about long COVID-19. Roughly 18 million American adults (7 percent of the adult population) have at least one symptom that has lasted 12 weeks after infection. Now 14 million of them say their long COVID symptoms limit their daily activities, including 4.5 million who say their activities are limited “a lot.” The most common symptoms are fatigue, shortness of breath, difficulty concentrating, and muscle aches.
Long COVID costs at least $60 billion up to as much as $100 billion a year in just lost wages. The annual cost of medical care for these patients may be another $100 billion. And those numbers don’t factor in decreased productivity from people working with severe fatigue and brain fog, or family members of long COVID patients who must reduce their work hours to take on caretaker roles. Acute COVID is a pandemic; long COVID could be a mass disabling event.
Despite the scale, lack of patient tracking means that much less is known about long COVID than ought to be. Long COVID can involve a few weeks of mild symptoms, disabling chronic illness, or elevated mortality risk from the effects of high levels of inflammation. Researchers and policy makers still don’t know exactly how long COVID impacts daily life or people’s ability to work. And they don’t know how long people stay sick, though a recent study finds little change in overall long COVID recovery rates 6, 12, and 18 months after infection.
This lack of knowledge might be ascribed to the fact that long COVID is new. But long COVID is not the first infection-associated chronic illness. Myalgic encephalomyelitis/chronic fatigue syndrome, usually triggered by a viral infection, is a chronic illness that impacts 840,000 to 2.5 million Americans — many of whom can’t work. In fact, many long COVID patients meet the diagnostic criteria for ME/CFS.
But ME/CFS has been ignored and underfunded for years. The National Institutes of Health has dedicated less than $20 million a year to research on ME/CFS — a startlingly small amount for an illness of that prevalence and severity. As a result, scientists have made relatively little progress in understanding its underlying mechanisms and testing treatments.
The scale of long COVID means health officials can no longer afford to ignore infection-associated chronic illness. Incremental steps are not enough; the United States needs a radically different approach to understanding and addressing these illnesses.
First, access to affordable treatment must be expanded. Few doctors treat infection-associated chronic illnesses due to a combination of stigma (ME/CFS has historically been dismissed as a “yuppie flu”) and challenges with insurance reimbursement. To get more doctors involved, the federal government should support multidisciplinary long COVID (and ME/CFS) clinics, as proposed by US Representative Ayanna Pressley of Massachusetts, combined with alternative reimbursement model pilots for Medicare or Medicaid. Training is also key: Medical schools need to add infection-associated illnesses to their curriculums.
Second, the scale, scope, and speed of research must be expanded. With no validated long COVID treatments and scant support for clinical trials, patients are turning to the Internet and each other, comparing notes on untested treatments. One challenge to driving more research is that infection-associated chronic illnesses do not fit well in any of the traditional medical research areas. That is why we endorse an idea put forward by long COVID patient advocacy groups: Create an NIH institute dedicated to long COVID and other infection-associated chronic illnesses. The government should provide the institute funding on par with diseases with similar burdens — perhaps $2 billion per year — with at least a quarter earmarked for clinical trials.
Third, there needs to be support for patients to keep working or get back to work. This entails more research and guidance on the types of accommodations that work for infection-associated chronic illness (such as the ability to work sitting vs. standing, longer or more frequent breaks, flexible hours, and remote work) and an understanding of which job types allow for those accommodations.
Fourth, there are many long COVID patients for whom workplace accommodations are unlikely to suffice — especially low-wage service workers like nursing aides or baristas, whose jobs are physically demanding and ineligible for remote work. These patients need a better social safety net, which Congress needs to support: federally funded short-term disability insurance to allow long COVID patients early in their disease to rest and, hopefully, recuperate; adjusted Supplemental Security Income/Social Security Disability Insurance guidance and expedited review processes for infection-associated illness patients, who need a different standard of “proof” of disability and for whom early rest may be crucial to recovery; and a waiver of the 24-month Medicare waiting period for those on disability, in the hope that early care will shorten disease duration.
Long COVID is a wake-up call that the nation’s status quo on infection-associated chronic illnesses has failed workers, families, and the economy. But it may also be the prod needed to build medical, employment, and social support systems that work for millions of suffering Americans.
Katie Bach is the author of multiple reports on the economic impact of long COVID. David Cutler is a professor of economics of Harvard University.