Even as U.S. policy makers and business leaders seek to put the COVID pandemic in the rearview mirror with the help of highly effective vaccines, a fundamental policy and planning gap is looming. Many who survive the initial viral illness suffer debilitating long-term sequelae. Unlike the common cold or even influenza, this virus causes a bewildering array of symptoms that persist long after the acute illness is resolved and can render some affected unable to resume their usual activities. As scientists and clinicians continue to delineate the “long-haul” course of COVID, policy makers and planners must anticipate and prepare for the impact of this new cause of disability, including its implications for federal and private worker’s compensation and disability insurance programs and support services.

Consider the numbers we know. At least 34 million Americans (and probably many more) have already contracted COVID. An increasing number of studies find that greater than one fourth of patients have developed some form of long COVID. (In one study from China, three quarters of patients had at least one ongoing symptom six months after hospital discharge, and in another report more than half of infected health care workers had symptoms seven to eight months later.) Initial indications suggest that the likelihood of developing persistent symptoms may not be related to the severity of the initial illness; it is even conceivable that infections that were initially asymptomatic could later cause persistent problems.

Common long-term symptoms include fatigue; respiratory problems; “brain fog”; cardiac, renal and gastrointestinal issues; and loss of smell and taste. Surprising manifestations continue to emerge, such as the recent realization that infection may precipitate diabetes.

For some, symptoms have now continued for many months with no apparent end in sight, with many survivors fearing that they will simply have to adjust to a “new normal.” More and more sufferers have not been able to return to work, even months after their initial illness. While the number of patients with persistent illness remains undetermined this early in the pandemic, estimates suggest that millions of Americans may enter the ranks of the permanently disabled.

The related health care and disability costs are also still unknowable. How many “long haulers” will never be able to return to work? How many will need short-term disability payments? How many will be permanently disabled and become dependent on disability programs? As increasing numbers of younger people become infected, will we see an entire generation of chronically ill? We must actively work to better understand the size and scope of the problem and begin planning now.

In addition to the personal suffering, long-term disability comes with a staggering price tag—including increased health care costs; reduction or loss of employment; and economic strain on worker’s compensation and disability support programs. It’s been estimated that as much as 30 percent of the COVID health burden could arise from COVID-induced disability. As physician and University of Massachusetts medical professor Steven Martin recently told NPR, “If we end up with a million people with ongoing symptoms that are debilitating, that is a tremendous burden for each of these individuals, but also for our health care system and our society.”

Current U.S. disability programs appear ill-equipped to deal with this new stream of patients with chronic disability. Patients and employers alike can be overwhelmed by the inherent bureaucracy of the system, including worker’s compensation, Social Security disability, and private disability insurance. For example, it is extremely difficult to pinpoint if workers contracted infection at their place of employment or in the community; limited access to testing means that many sufferers are unable to document their initial infection; and the Social Security Administration (SSA) requirements that the impairments must last or be expected to last at least 12 months and prevent “substantial, gainful” activity are daunting. But we cannot be short-sighted; barriers to disability support can exacerbate the severity of the medical problems and prolong the time in which patients are unable to return to their normal activities.

Here’s what we need now:

  • Research to better understand disability inflicted by long COVID. Scientists are partnering with patient groups such as Survivor Corps to better define these syndromes, and the NIH has called for proposals supported by the $1.15 billion in funding recently provided by Congress. We need to prioritize health economics studies to determine the financial implications of disability associated with the virus.
  • Clinical services to manage long COVID. Clinics to care for “long haulers” are being opened, but must be adequately staffed and funded. Both the CDC and AMA recently released guidelines for care. Coordinated collection of data on a national (and global) level will accelerate insights.
  • Worker’s compensation programs and private disability insurance. A national consensus on criteria for qualifying for payments is key. Insurance plan administrators should use health economics research to prepare for future costs.
  • Federal disability programs. Analysis of the likely number of patients who will require short- and long-term disability payments and services should be at the front of the SSA’s agenda, followed by modeling of the funding needed to support them. Requirements (including types of medical documentation and waiting periods) to quality for aid also need to be reexamined.

It’s understandable that we don’t yet have all the issues related to COVID-associated disability figured out; we haven’t fully grasped all the implications of this pernicious (and still somewhat mysterious) malady. After all, since early 2020, we’ve been struggling to address the immediate crisis and how to deal with the new problems that arise day by day. But the time has come to proactively plan for what will certainly be the enormous new impact that long-haul COVID will have on our disability programs.

This is an opinion and analysis article; the views expressed by the author or authors are not necessarily those of Scientific American.