COVID-19’s long-term harms: What we don’t know yet could hurt us

Infectious diseases have afflicted humans for hundreds of thousands of years, shaping communities and cultures. The ways pathogens affect human health have been studied extensively for decades. We have learned that any given microorganism can be protean, or capable of changing, in its manifestations — from patients who experience no symptoms at all, to those who become acutely ill yet recover fully, to those who suffer chronic infection and live with the ever-present threat of deteriorating health. 

In stark contrast, we have coexisted only one year with severe acute respiratory syndrome coronavirus 2, the virus that causes coronavirus disease 2019 (COVID-19), and are still learning the diverse ways this novel virus affects human health. During the first week of December, the National Institutes of Health convened a two-day workshop involving public health officials, medical researchers and patients dedicated to discussing the post-acute health consequences of COVID-19. One of the primary goals of the meeting — to provide a definition for the long-term sequelae, or health consequences and symptoms, following acute COVID-19 — proved elusive. Variably termed “chronic COVID-19,” “long haulers” and “long COVID-19” by physicians, patients and the media, whatever you call it, the protracted symptom complex following COVID-19, seemingly affecting all organ systems, has emerged as an unanticipated, devastating outcome of the pandemic. 

The earliest data out of Europe and the United States painted a concerning picture: The majority of hospitalized patients remained symptomatic weeks or months after their acute illness, the most common symptoms being fatigue and shortness of breath in approximately half of patients studied. Even patients who were never hospitalized had persistent symptoms several weeks later. Over the ensuing months, the full gamut of persistent symptoms emerged, ranging from chronic fatigue, sleep disturbance, cognitive impairment, fast heart rates and exercise intolerance. The exact incidence of these symptoms and their time course cannot be accurately gleaned from the existing data because the studies differ greatly with respect to the severity of the acute illness, the site at which the patients were initially treated (whether in an inpatient or outpatient setting), and the limited follow-up time frame. 

Additionally, there is no consensus yet on when the “acute” and “convalescent” phases of illness end and the “chronic” period begins. Consequently, it is too early in our experience to predict with confidence which symptoms will resolve with time and which will persist. 

The good news is that, in our anecdotal experience, we do see some of these symptoms slowly improving over time in our patients. However, on the precipice of a second wave, the prospect of millions more people infected with coronavirus with even a small percentage of that cohort emerging with incapacitating lingering symptoms represents, according to Anthony Fauci, the nation’s top infectious disease doctor, “a significant public health issue.”

During the first wave of the pandemic, academic medical centers across the country recognized the post-acute care crisis that loomed. Centers with existing post-intensive care unit clinics focused their attention on survivors of COVID-19, while other centers established new programs. At Massachusetts General Hospital in Boston, we established the Coronavirus Recovery (CORE) Clinic to care for and study survivors of COVID-19. The multidisciplinary nature of the clinic provides a platform for optimal patient care and synergizes with research efforts to characterize the long-term health consequences of COVID-19. Complementary programs have emerged across Boston, spearheaded by clinicians in pulmonology, critical care, infectious disease, neurology, and physical medicine and rehabilitation, highlighting the multi-system nature of the disease. 

While we anticipated the majority of our patients to have been hospitalized with COVID-19, approximately 44 percent were never hospitalized, of which a substantial proportion are health care workers, many of whom have been unable to return to work because of the debilitating nature of their symptoms. The toll on our patients has been devastating. Beyond the daily lived experience of their chronic symptoms, many have felt dismissed by employers — their experiences trivialized — and left feeling helpless, told by well-meaning medical teams that there is nothing to be done but wait things out. 

However, there are countless patients who suffer silently without access to adequate follow-up care. The pandemic has exacerbated preexisting health disparities in our nation, and disparities in the post-acute COVID period are only anticipated to grow. As health systems navigate caring for patients recovering from COVID-19, every effort must be made to consider how systems and programs perpetuate disparities and how resources can be deployed directly into the most vulnerable communities. 

Unfortunately, there is no consensus on what to term the post-acute COVID-19 syndrome, let alone explain the mechanisms underlying the persistent symptoms. A growing body of literature is emerging, but as hospital systems face the reality of surging cases and capacity constraints, resources may not be adequately allocated to continue to care for and study survivors of the first wave. Thus, it is imperative that federal support be directed to academic medical centers to fund clinical and research programs to study the long-term consequences of COVID-19. Federal legislation should be pursued to establish “Centers of Excellence” that integrate multidisciplinary collaborations across institutions to promote pandemic preparedness and response, clinical care and research, and promote health equity. 

Even if the novel coronavirus were to magically vanish tomorrow, a substantial proportion of the population would continue to face the daily challenges of its lingering effects. Like many disasters, long after the inciting event has disappeared from the front page, there will be many whose lives are irrevocably altered and need ongoing support. We must remain open to learning the full spectrum of long-term consequences following COVID-19 and address lingering questions informed by science and data. 

George A. Alba, M.D., is a pulmonary and critical care physician at Boston’s Massachusetts General Hospital, an associate director of its CORE Clinic, and an instructor of medicine at Harvard Medical School. 

Leo C. Ginns, M.D., is director of the Center for Advanced Lung Disease and of the CORE Clinic at Massachusetts General Hospital, a pulmonary and critical care physician, and an associate professor of medicine at Harvard Medical School.

Mark C. Poznansky, M.D., Ph.D., FIDSA, is director of the Vaccine and Immunotherapy Center, Division of Infectious Diseases Medicine, and Steve and Debbie Gorlin Research Scholar at Massachusetts General Hospital and an associate professor of medicine at Harvard Medical School.