News Release

Long Covid and Public Policy: A writer on chronic illness speaks out

“Two years into the pandemic,” writes Meghan O’Rourke in Scientific American’s special report in the magazine’s March 2022 edition, “long COVID remains one of the biggest threats it poses.” Yet public health messaging and Covid policies still generally do not highlight the risks and consequences of long Covid cases. Though the Biden administration released a joint guidance explaining that long Covid can be a disability under sections of the Americans with Disabilities Act and the Affordable Care Act, O’Rourke contends that further shifts are needed to address the concerns of the newly disabled.

An analysis of U.S. Bureau of Labor Statistics data, released in early February by the Center for American Progress, concludes that the pandemic has led to 1.2 million more people being identified as having a disability in 2021 than in 2020. As Laura Spinney put it in Nature last month, “A burden of future disability is being created that could have been prevented, or reduced… Rampant spread not only raises the risk of more troublesome variants evolving, it also sets more people up for long-term health problems – especially those who are already marginalized – and it limits the lives of millions for whom vaccines are unavailable or ineffective.”

Available for interviews:

MEGHAN O’ROURKE, meghan@meghanorourke.com, @meghanor.
O’Rourke is the editor of the Yale Review. Her most recent book is The Invisible Kingdom: Reimagining Chronic Illness.

O’Rourke writes that long Covid was “rarely discussed in public health messaging during the Delta and Omicron waves; officials focused on acute severe disease and death and largely ignored the debilitating – and life-altering – long-term effects that the virus has on so many people. We’ve had even fewer conversations about the societal responsibilities we have toward a growing generation of sick people, many of whom are between the ages of 30 and 50.”

When asked why she thinks it took so long for some experts to recognize and legitimize long Covid, O’Rourke responded: “We don’t understand [long COVID] well yet; it looks different in different people; we are working on understanding what biomarkers may or may not characterize it. And finally, it is the case that the term may be an umbrella under which several possibly distinct categories of diseases fall: conditions like dysautonomia and POTS; autoimmune disease triggered by SARS-COV-2 infection; micro-blood clots; ME/CFS or something like it; or all of the above, and more. I understand why researchers want to start to bear down on what long Covid means, and try to identify who has, say, autoimmune disease. That is all well and good and could bring knowledge that will help patients. But I also find a pernicious reflex at work: our uncertainty about the condition – the current unavoidable slipperiness of the term – is being turned into evidence against the ‘reality’ of this condition in strange and irrational ways. [Researchers like Adam] Gaffney go quickly to the idea that long Covid may in fact be triggered by anxiety, without talking much about the literature on infection-associated conditions such as POTS or dysautonomia. I think it’s really, really important for public accuracy that science’s real need to try to identify whether there might in fact be different forms of long Covid not be – irrationally! – equated too quickly with “and therefore it is likely overblown/caused by anxiety/stress etc.”

Policy decisions to address long Covid need to include “more patients’ voices and patient-led input,” O’Rourke said. “Deep, authentic thought put into making patients’ lives better in three-dimensional ways, even if a therapeutic proves initially elusive. A sense of authentic engagement with the scope of the problem. Right now, too often one sees a desire to pretend this problem doesn’t quite exist. Media accounts often talk about the reduction in risk that Covid leads to death, but we should also be grappling with the risk of long Covid in our policy decisions. It doesn’t kill you, but it can ruin your life.”