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.