Even as the U.S. remains in the throes of the deadly pandemic, medical experts, health care advocates, and policy makers are turning their attention to a profound challenge: how to provide care and economic security for potentially millions of Americans facing long-term COVID-19-related disability. 

As of this week, some 34.5 million Americans are confirmed to have contracted COVID-19 since the pandemic began – the number could be significantly higher. New, emerging studies show one –fourth or more of the people who contract the virus suffer from some form of “long covid.” Manifestations of long COVID-19 might include respiratory problems, “brain fog,” cardiac, renal and gastrointestinal issues; and loss of smell and taste. 

For many, these issues may in time go away. For others, they may not — which raises disturbing health care and economic policy implications.  

“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 workers’ compensation and disability insurance programs and support services,” writes Dr. Claire Pomeroy, an infectious disease specialist and President of the Lasker Foundation, in a recent issue of Scientific American. “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.” 

Dr. Pomeroy adds that it is too early to assess what the health care and disability costs of caring for “long” COVID-19 patients will be. 

“How many ‘long haulers’ will never be able to return to work?” she asks. “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.” 

New, emerging studies show one –fourth or more of the people who contract the virus suffer from some form of “long covid.”

Dr. Pomeroy writes that long-term COVID-19 costs – in addition to personal suffering – include increased health care costs, reduction or loss of employment, and economic strain on worker’s compensation and disability support programs. She says it has been estimated that as much as 30 percent of the COVID-19 health burden could arise from COVID-induced disability. And she quotes physician and University of Massachusetts Medical Professor Steven Martin, who 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.” 

This week, at least 11 newly formed groups who came together to support COVID-19 patients and their loved ones are fanning out across the U.S. Capitol, meeting with at least 90 members of Congress or their staffs. Their goal is to plant the needs of those who have suffered from the pandemic clearly on the public agenda. 

One of those groups is Marked By Covid, co-founded by Kristin Urquiza after her father, a Trump supporter, contracted and died from COVID-19 in June 2020 after Arizona’s governor opened up the state too soon. She said she and about 200 volunteers are participating in a mix of in-person and virtual meetings on Capitol Hill this week, asking lawmakers to memorialize the pandemic and to do more to address disparities affecting communities of color. 

There is evidence that Urquiza and her allies might have found an ear in the Biden Administration. Earlier this week, President Biden announced that long-term symptoms of COVID-19 could be considered a disability under federal civil rights laws. 

“Many Americans seemingly recovered from the virus still face lingering challenges like breathing problems, brain fog, chronic pain and fatigue,” Biden said at a Rose Garden ceremony in which he commemorated the anniversary of the Americans With Disabilities Act. “These conditions can sometimes rise to the level of a disability. So we’re bringing agencies together to make sure Americans with long covid, who have a disability, have access to the rights and resources that are due under the disability law, which includes accommodations and services.” 

Even before Biden made his comments, the Biden Administration this week issued guidelines clarifying that “long covid” could be considered a disability under various federal civil rights laws that would afford protections against discrimination in employment, housing, and other areas. But it clarified that long covid is not automatically a disability and that an “individual assessment” is required to determine whether a person’s long-term symptoms “substantially limits a major life activity.”

It is certainly a positive step that discrimination against people with long covid will not be allowed. But it is clear that more steps will need to be taken to ensure that, for example, Social Security disability payments and other types of payments such as workers’ compensation flow to those in need in a timely manner. 

“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,” Dr. Pomeroy writes. “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.”