In November, The Covid Tracking Project stopped reporting recovery figures for the United States as a whole, and yesterday we also removed many, though not all, of the state-level “recovered” values from our website. We want, above all, to provide accurate and meaningful information. Unfortunately, when it comes to recovery data at both the national and state levels, accurate and meaningful information is hard to come by.
There are several reasons to remove these data from our website. First, several states and territories, including large states like California and Florida, don’t report any kind of recovery data, and it doesn’t make sense to report a national total that excludes so much of the country. A second and crucial reason is that “recovered” has no standard definition, and states report it in many different ways. Just as important, many people who have had COVID-19 and have lived to tell the tale—and many of whom are categorized as “recovered”—don’t consider themselves to have actually recovered.
COVID-19 can have many long-term health consequences, and none of the definitions for counting people who have “recovered” from COVID-19 accounts for latent or ongoing health issues that can be caused by COVID-19. Children who develop multisystem inflammatory syndrome because of COVID-19 and “long-haulers,” who continue to suffer worrying symptoms months after first falling ill with COVID-19, are often wrongfully included in recovery statistics, since not all pandemic-burdened public-health departments have the resources to do the individual follow-up investigations that they would ordinarily do for an infectious disease. Moreover, when public-health offices do conduct individual case investigations, many COVID-19 patients do not respond to inquiries, leaving case investigators in the dark about the process of convalescence—the sometimes slow and always individual voyage back to health. Determining how many people have recovered from COVID-19, then, is currently more like trawling with a net than fishing with a pole: Every attempt dredges up a lot of scaly things we don’t want.
The CDC has not provided an official definition of what it means for a COVID-19 patient to recover, in the sense of returning to a pre-COVID-19 state of health, but it does provide some guidance on when COVID-19 patients no longer need to be isolated. In its guidance for “discontinuation of Transmission-Based Precautions” for persons with COVID-19, the CDC recommends using a “symptom-based strategy,” which calls for releasing people with mild cases of COVID-19 from isolation 10 days after their illness began, if and only if their symptoms have improved without the need of medication. Those who are asymptomatic or immunocompromised should still be tested to see if they have any remaining virus in their system, but they should consult with local health experts instead of relying only on negative test results.
A key aspect of these CDC guidelines is that they are aimed at controlling infection, not at judging health. This is an important distinction, especially given the demonstrable long-term health effects of COVID-19 that extend beyond the respiratory symptoms stated in the guideline. Many states use these CDC definitions to inform their own reported data of how many people have “recovered” from COVID-19, which means that states are really reporting the number of people who are no longer infectious, not the number of people who have returned to a pre-COVID state of health.
In the absence of federal guidance, and as with many other COVID-19 metrics, different U.S. jurisdictions rely on different definitions for reporting recoveries. Some states and territories have still not adopted the CDC’s mid-July recommendation to primarily take symptom improvement into consideration when estimating how many people are no longer infectious, some states have begun tracking recovery data for “probable” cases of COVID-19 identified by rapid antigen tests, and several states that once reported recovery data have recently stopped.
Among the 48 jurisdictions that have reported a version of a “recovered” value, available definitions generally fall into one of four categories: days since diagnosis/onset; symptom improvement; hospital discharged; or definitions that are unclear. The first category bases “recovery” on a certain number of days—generally between 14 and 30—after a positive test result or symptom onset where the patient has not died. This is the most common type of recovery definition among U.S. states and territories; 18 jurisdictions have provided definitions that include similar criteria. Definitions in the second resemble the CDC’s multilevel guidance for releasing patients from isolation and include information about whether a patient’s COVID-19 symptoms have improved. The third category simply refers to people diagnosed with COVID-19, hospitalized, and then discharged from the hospital; it does not include the majority of people who contract COVID-19, because most people with COVID-19 are never hospitalized. States in the final category report a “recovery” figure but do not provide any publicly available definitions. Unfortunately, all of these definitions still do not capture the complete spectrum of health issues experienced by COVID-19 patients.
Six states that once reported recovery statistics have stopped, many citing their difficulties with collecting complete or reliable data. And eight jurisdictions have never provided any recovery statistics. This could be due to many factors, including a lack of understanding of the disease or the difficulty of collecting relevant data, as many cases experience mild symptoms or no symptoms at all. Washington, for example, has never reported recovery data, and according to The Seattle Times, the Washington Department of Health “doesn’t track how many people have recovered … because so little is known about what recovery looks like.” Similarly, Rhode Island estimates recovery figures but does not publish them, due to the lack of a standard definition. The state also attributes difficulties in reporting this figure to the fact that many of those who were infected were not tested.
It became clear to us months ago that reporting this incomplete patchwork of unlike statistics at the national level would be a distortion. We believe that under the current lack of standardization and complete reporting, the total number of people in the U.S. who have actually recovered from COVID-19 cannot reasonably be inferred.
While we collect thousands of data points about COVID-19, these numbers cannot capture the varied experiences of the more than 22 million people who have tested positive in the U.S. to date. Since March, more than 371,000 people have died, and different individuals who are said to have “recovered” based on states’ definitions may be in dramatically different states of health. One study found that people with severe cases of COVID-19 continued to suffer related health problems three months after being discharged from the hospital. Most or even all such cases would likely be considered recovered by CDC and U.S. state definitions.
Similarly, the impressive group of researchers born out of the Body Politic support group for “long COVID” patients points out in a summary of its patient-led research that “recovery is volatile, includes relapses, and can take six or more weeks.” The group asked people who had tested positive for COVID-19 to define “recovery” for themselves—partly because of the lack of a clinical definition, and partly as a way to honor the lived experience of people who actually got the disease. In their report, “What Does COVID-19 Recovery Actually Look Like?,” the researchers wrote that in the future, they hope to create a standardized definition of recovery based on the types of symptoms and the severity of the illness.
As we approach the one-year anniversary of the first COVID-19 diagnoses in the United States, few public-health departments have had the capacity to follow up on each case and assemble an accurate picture of how many people in a given jurisdiction have genuinely recovered. Good recovery data for the first year of the U.S. pandemic are—and will likely remain—impossible to produce.
Many people at The COVID Tracking Project contributed research and data-compilation for this story, including Jennifer Clyde, Elizabeth Eads, Rebecca Glassman, Kate Hurley, Nicole King, Daniel Lin, Michal Mart, Barb Mattscheck, Daria Orlowska, Kara Schechtman, and Erika Thomson.
This article has been adapted from its original version, which can be read in full at The COVID Tracking Project.