COVID-19 ‘long-haulers’ push for 9/11-style health registry to help shake the illness

To better understand the mysterious effects of long COVID-19, state and federal lawmakers are looking to health registries similar to those created after 9/11 to help millions of Americans suffering from long-term COVID-19 symptoms, according to a May 16 Politico article.

The health registries would create data troves that patients experiencing long-term symptoms could access to make informed decisions about their care. They would also allow medical providers to study the long-term effects of the illness and help patients qualify for federal or state benefits.

Proposals to build health registries require that patients opt in, instead of the data getting automatically pulled from their health records. In previous registries, disenfranchised people and very wealthy people have not opted in.

Kavita Patel, MD, a physician who previously worked on medical registries in Congress and the White House, said, “When you have a bell curve, you miss the insights you get from the outliers and the extremes, which is unacceptable when we need to understand these symptoms and patterns.”

About 10 percent of people who contract COVID-19 experience long-term symptoms. These patients often face frustrations trying to qualify for benefits like disability, unemployment or workers’ compensation. Some long-haulers didn’t get an original COVID-19 diagnosis due to a lack of testing available at the start of the pandemic. Without evidence of a positive test, some patients are struggling to provide evidence that their symptoms are COVID-19-related.

Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, told Politico that he is on board for this type of registry, but it would have to address privacy concerns.