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CDC is asked to release race, gender and age data on long-term COVID-19

Tiffany Patino, who has struggled with long-haul COVID-19 symptoms for a year, wears a pulse oximeter to monitor her vitals as she walks up the stairs at her boyfriend’s grandmother’s home where she lives in Rockville, Md., on Dec. 2. (Carolyn Van Houten/Washington Post)
By Christopher Rowland Washington Post

WASHINGTON – A pair of Democratic House members asked the Centers for Disease Control and Prevention in a letter Tuesday to release data on the number of Americans who suffer lingering symptoms of coronavirus infection, including breakdowns along race, gender and age.

The National Institutes of Health and the CDC have launched detailed studies of long-term COVID-19, often shortened to just long COVID, but those examinations are expected to take years. In the meantime, policymakers lack good information about how many people in the U.S. and worldwide suffer from long-term, debilitating effects of the disease.

“People suffering from long COVID have been ignored and overlooked for far too long. Collecting and publishing robust, disaggregated demographic data will help us better understand this illness and ensure that we are targeting lifesaving resources to those who need them most,” Rep. Ayanna Pressley, D-Mass., who co-signed the letter Tuesday to the CDC, said in an emailed statement.

“We’re calling on the CDC to publicly report this data because that which gets measured gets done – and we can’t have an equitable recovery from this pandemic without it.” Rep. Don Beyer, D-Va., who has sponsored legislation to fund studies of long COVID, co-signed the letter with Pressley.

The CDC did not immediately respond to the letter. The agency tracks and publishes data on coronavirus infections and vaccinations, but it has not yet begun posting information on how many people suffer from symptoms lasting more than a few weeks. It has said it is conducting surveillance to estimate prevalence through health networks, surveys and digital medical records, but it is not clear what progress it has made in developing solid estimates.

Health care providers say governments and health systems don’t have solid information on how many people are plagued by various combinations of fatigue, pain, racing heartbeat, spiking blood pressure, brain fog, shortness of breath, gastrointestinal disorders and other lingering problems months or even a year or more after their initial infection.

Estimates have put the number of people with the disorder who are too sick to work at 750,000 to 1.5 million. A recent analysis published by the Brookings Institution estimated, based on data from various studies, that long COVID could account for 15% of America’s 10.6 million unfilled jobs.

Pressley’s letter cited studies showing women appear to suffer from long COVID more than men. “Further, we know that COVID-19 has disproportionately harmed certain communities more than others, and we suspect long COVID will mirror this trend,” the letter said.

Estimates of the total number of people infected with coronavirus who experience lasting COVID-19 symptoms vary widely, from 10% to perhaps much higher. The nature, severity and duration of long-term effects also differ greatly.