Two House members have written a letter to the Centers for Disease Control and Prevention, asking the agency to publicly release figures detailing how many Americans suffer from “long COVID,” including how many women and people of color are affected. 

Reps. Ayanna Pressley (D-MA) and Don Beyer (D-VA) said it is “critical” for Congress and the American public to have access to data relating to long COVID “in order to inform policymaking and protect the public’s health.” 

“Preliminary studies indicate that women are uniquely vulnerable to Long COVID,” Pressley and Beyer wrote, adding that Black, Latino, and Indigenous people are at least twice as likely as white people to be hospitalized and die from COVID-19. 

“These communities have historically faced racial discrimination and inequities in social determinants of health, contributing to greater risk of COVID infection,” they wrote. “Accordingly, these communities of color are at greater risk of suffering from Long COVID.” 

The National Institutes of Health and the CDC have launched detailed studies of long COVID, but those studies are expected to take years. In the meantime, doctors and other public health officials have no idea how many people suffer from the malady, much less how to treat and prevent it. 

“Congress needs disaggregated demographic data on the presence of Long COVID,” Pressley and Beyer wrote. “CDC must publish findings on race, ethnicity, age, gender, previous disability, and other demographic characteristics. People across the country are experiencing long-term symptoms of COVID-19, and Congress deserves answers on the size and scope of this crisis.” 

People suffering from long COVID, often referred to as “long-haulers,” are plagued by various combinations of fatigue, pain, racing heartbeat, spiking blood pressure, brain fog, shortness of breath, gastrointestinal disorders and other lingering problems for months or even a year or more after their initial COVID-19 infection. Estimates have put the number lost full-time employees who are too sick to work (or who had to reduce hours because of the illness) at  1.5 – 1.6 million. 

Estimates of the total number of people infected with COVID-19 who experience lasting symptoms vary widely, from 10 percent to perhaps much higher. Last year, the Biden Administration officially recognized long COVID as a disability requiring workplace accommodations. 

In a statement, Pressley said public statistics from the CDC are needed because without this information, it is more difficult to target resources to address this chronic illness. “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,” she said.