COVID-19 registries: Solution to understanding the virus?

Would creating a national registry of survivors of COVID-19 be an effective tool to better understand what has happened to millions of Americans who suffer from the long-term systems of the virus? That is a question currently under consideration by state and federal lawmakers seeking to establish such a resource.

Proposed legislation has received applause from labor and patient advocacy groups but brought some consternation among people concerned about privacy and as to whether such a registry would be skewed and incomplete because many people would opt out of the voluntary nature of it.

Will They Qualify For Benefits?

A few states have pondered whether to create COVID-19 registries, but New York drafted the first such legislation. Lawmakers in Washington also are on the same track. New York’s bill is patterned after a registry of 9/11 survivors who came down with illnesses after the World Trade Center bombings in September 2001.

Some lawmakers are optimistic that such a registry would provide a comprehensive database with numerous benefits. Here are some of the highlights:

• “Long-haulers” – those who continue to have health issues months after contracting the virus — could gain better access to information about their care.
• Medical providers and scientists would gain a more accurate picture of the long-term effects the virus has had on people.
• The data would prove invaluable in potentially helping long-haulers qualify for state and federal benefits such as disability, unemployment and workers’ compensation.

Estimates suggest that 10% of people with COVID-19 experience long-term health complications that may include depression, brain fog and respiration issues. Just maybe such a registry may help these patients overcome their frustrations and lead to them qualifying for and securing disability benefits.