Legislators, unions, and patient advocates are divided over the possible creation of registries for COVID-19 long-haulers. The registries would:

• Provide scientists with a broader, deeper, and more accurate picture of the ongoing epidemic and its consequences
• Educate doctors and other healthcare professionals about long COVID diagnoses and treatments
• Establish a database where patients can share and access information that would help them make productive decisions about obtaining care and seeking state or federal benefits

Approximately 10 percent of those infected have experienced long-term complications, and many of these patients have encountered frustrating barriers to treatment and when qualifying for disability, unemployment, and workers’ compensation. 

Controversy and Inequality

Like the 9/11 registry, which was created for survivors and first responders who developed chronic illnesses following the World Trade Center attacks, the COVID-19 registry would provide for voluntary participation, which means that patients would be responsible for registering and sharing their health information. While the idea has many supporters, not everyone is on board.

Historically and statistically, “Very poor, disenfranchised people don’t opt-in, and very wealthy, educated people also don’t opt-in,” said Kavita Patel, a Brookings Institution fellow and physician who has worked on medical registries in both Congress and the White House. “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.” Patel advocates for a system that would automatically pull data from digital medical records, and let patients opt-out if they choose. 

Support for a Voluntary Registry

Despite some opposition, the proposed legislation has considerable support from influencers in high places, including President Biden’s chief medical advisor, Anthony Fauci, and union leaders in New York, one of the states hardest hit by the pandemic. 

While some COVID survivors may be hesitant to entrust the government with their medical information, Rep. Don Beyer (D-Va.), lead author of the new bill, said the voluntary aspect of the proposed registry should help allay concerns about privacy. No one is obligated to participate, though all could potentially benefit from such a treasure trove of pooled data. 

As things now stand, significant numbers of patients are experiencing misdiagnosis or even dismissal of their symptoms by doctors in various healthcare settings. Obtaining care has been particularly challenging for those who believe they contracted the virus early in the pandemic but were unable to receive a diagnosis because the tests were not yet widely accessible. 

Why a Registry Could Be Important

Substantial research efforts are already underway to understand:

• Frequency of Long COVID Symptoms
• Reasons for Linger Symptoms among Certain Types of Patients
• Likelihood of Patients Developing New Symptoms after Recovery

Labor and patient advocacy groups insist, however, that a national registry would be more comprehensive, and provide an invaluable supplement to individual studies. 

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.

*Ollstein, A. M. and Goldberg, D. (2021, May 16). Desperate for Treatment, COVID ‘Long Haulers’ Push for 9/11-Style Health Registry. Politico. https://www.politico.com/news/2021/05/16/coronavirus-health-registry-488410?cid=apn