Ready or not, here it comes: We are unprepared for long COVID

The recent disclosure by Sen. Tim Kaine (D-Va.) that he still suffers from COVID-19 symptoms nearly two years after being diagnosed underscores the fact that concerted efforts in science, public health and policy helped to mitigate some of the worst outcomes of acute COVID but did little to help the estimated 23 million Americans whose symptoms still linger.

Long C deserves the same sense of urgency, focus, funding and communication as the acute form of the disease. What is needed now is an aggressive focus on treatment of long C to overcome the potential physical, emotional and economic impacts to our society. 

Recent global research shows long COVID describes a wide array of symptoms that persist more than two months after infection and differ among COVID variants.

Long C affects all ages and can follow even mild acute COVID, with an incidence as high as 57 percent of hospitalized patients. Long C affects more women than men and has a younger age distribution than acute COVID. Several findings during acute infection appear to raise the risk of long C.

Even before the first wave of omicron, the Centers for Disease Control and Prevention (CDC) estimated that over 146 million Americans had been infected by SARS-CoV-2. Unfortunately, reinfection with new variants is common and adds to the number of long C sufferers.

The country is witnessing a “second-order pandemic” from COVID that has impaired far more people than those who died of the acute infection. Many sufferers are so compromised that they cannot return to work. Brookings Institution research suggests that over 15 percent of unfilled jobs are related to long COVID.

Additionally, the emotional and psychological impacts of long C are significant and further stress an already overburdened U.S. mental health care system.

Researchers have identified clear biomarkers of long COVID, but there are no clinically available and validated tests to confirm that diagnosis. Some symptoms, such as altered senses of smell or taste, are unpleasant but mostly manageable. Others, such as fatigue, shortness of breath and cognitive impairment, often are severe enough to be disabling, preventing people from resuming pre-illness leisure and professional activities.

One disturbing finding is that brain inflammation and loss of brain cells continue to progress long after the acute infection. In addition, recent research from the Department of Veterans Affairs shows that the risk of developing cardiovascular disease and diabetes is significantly higher in those with a prior diagnosis of COVID-19. 

Vaccines have reduced the spread of acute COVID, the severity of disease, and the risk of acquiring long C. Yet the misguided spread of vaccine disinformation is rampant.  

Further compounding the problem, Congress recently defunded vaccinations for the uninsured. Many state representatives are reportedly concerned that congressional gridlock is shifting the financial burden from the federal government to individual states.

While many therapies have proven effective in preventing and treating acute COVID, the lack of comparable therapies for long C has left millions of sufferers increasingly frustrated with the apparent failure to accelerate research and therapy on long C. The American Medical Association in July 2021 advocated for more support for those suffering from long COVID.

Though the White House recently announced a comprehensive plan to address long C, the country is unprepared for the potentially massive wave of long COVID. Government, administrators, policymakers and health agencies must act now — or risk being overwhelmed. 

Resistance to mandatory measures has obscured the much-needed communication about how everyone can reduce the risk of not only acute infection but also the disabling effects of long C. Many Americans remain unaware that even mild cases of COVID can lead to prolonged and debilitating long C.

There must be more comprehensive and compassionate care for long C sufferers, and better education for the medical community about the counter-therapeutic effects of minimizing their complaints.

While several institutions, including Northwestern Medicine, University of California-Davis and Mt. Sinai, have implemented long C clinics, access is limited. Treatment is almost exclusively supportive and includes advice about how to minimize and adapt to symptoms.

Health care systems must begin to track affected individuals so that as new therapies are made available, they can be administered quickly to sufferers. Medical diagnostic companies must accelerate their efforts to translate research on long C into practical and affordable diagnostic tests to confirm the disease and monitor progress with emerging therapies.

Several anecdotal reports of “cures” of long C following either monoclonal antibodies or antiviral drugs are encouraging and should be followed up with larger-scale conventional therapeutic trials. It is also crucial that business and political leaders reexamine and reformulate sick leave, disability and insurance policies to adapt to the new circumstances.

Government and private industry must collaborate on how best to fund and execute a program of research on prevention, detection and treatment of long C. A group of nearly 70 researchers and physicians recently appealed to the U.S. Food and Drug Administration to require more focus on the role of T-cells in the immune response to COVID, and this research is likely to inform better approaches.

Current policy guidance focuses on reduced hospitalization and death, while neglecting the need to reduce the burdens of long C, both clinically and economically. Until there is a cure for long C, policymakers and health care institutions must advocate for continued vigilance to minimize spread of the virus through proven benefits of vaccination, high-quality masks, and social distancing.

The temptation to move past COVID is sometimes irresistible, but a sober, realistic assessment of the situation reveals that the chronic aftermath of long COVID poses a significant threat to the health and well-being of individuals, families, communities, institutions and economies.

Bruce L. Lambert, Ph.D., is a professor in the Department of Communication Studies and director of the Center for Communication and Health at Northwestern University. John Mattison, M.D., is chief medical information officer and chairs the health tech advisory board at Arsenal Capital Partners, and formerly was chief medical information officer with Kaiser Permanente, Southern California. Both are members of Northwestern’s COVID-19 Vaccine Communication and Evaluation Network.