The need for official data from the Centers for Disease Control (CDC) is crucial to the study of Long Covid, as well as the effort to fund the Long Covid research. Today, Bloomberg Law reported on the expected two-year delay in the public availability of that data, and how private research is filling the knowledge gap.
In an exclusive report, “Official U.S. Long Covid-19 Data Two Years Away, Hurts Research,” Bloomberg Law shared data from an upcoming Solve Long Covid Initiative white paper that estimates 21.3 million* adults have Long Covid.
In the coming weeks, more comprehensive data from our white paper will be released, including state-by-state figures on Long Covid prevalence and its economic impact.
In January, Representatives Ayanna Pressley and Don Beyer authored a letter to CDC Director Dr. Rochelle Walenksy asking the CDC to make Long Covid demographic data publicly available. The letter specifically called for an official estimate of how many people experience Long Covid and calls for the disaggregated demographic data on the prevalence of Long Covid to be shared with Congress.
The advocates spearheading the effort included the Long COVID Alliance (co-founded by Solve M.E.) and the COVID-19 Longhauler Advocacy Project. Solve M.E. authored a letter of support, voicing our agreement with the request.
CDC representatives later told Rep. Beyer that the CDC “would not internally have a dataset from which they could publicly post disaggregated data for two years.”
In the absence of official CDC Long Covid data, the Solve Long Covid Initiative has used mathematical models, population and serology data, patient-led research, and the published natural histories of other post-infection illnesses, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to estimate prevalence and impact.
As Solve M.E. Vice President of Advocacy and Engagement Emily Taylor noted, “Having access to this data is key in supporting communities that are more vulnerable to Long Covid and other infection-associated diseases, like ME/CFS. We have to understand the scope of this public health crisis to respond in a way that ensures no patient is left behind. This data will help us advocate for further research, educate policymakers, and catalyze real change for those with Long Covid and post-infection diseases.”
Stay tuned for more information on our upcoming white paper. Please click here for more on our Long Covid Initiative.
*This data has been updated since publication of the Bloomberg Law article.