Since the start of the pandemic, around 142 million people have recovered from COVID-19 globally, but for many of the survivors, beating the initial sickness may be just the first of many battles. Many recovered patients report fatigue, breathlessness, body pain, depression, and poor functioning in their lungs, heart, and liver even after being considered free from the virus.

An estimated 10 percent of infected people experience long-term complications. Tracking and figuring out the long-term effects could inform governments, doctors, researchers, and policymakers to understand how Covid-19 affects human health in the long run and study any trends or treatments that might benefit patients.

Keeping this in mind, several state and federal lawmakers, with the support of unions, are urging COVID-19 survivor registries, modeled after the 9/11 registry for helping people suffering from debilitating long-term symptoms of Covid-19.

This would allow the long-haulers to make informed decisions about their care and help them qualify for state or federal benefits.

What is the 9/11 Health Registry model?

WTC or 9/11 Health Registry is the largest registry in the history of the United States to track the health effects of a disaster. This registry tracks the health of people who lived, worked, or went to school in the area where the 9/11 disaster happened. The registry also covers those involved in rescue and recovery efforts. The enrolment in this registry is totally voluntary, and the data gathered from this registry allows health professionals to compare the health of the survivors to the health of the general population.

Several states are mulling COVID-19 registries modeled after the 9/11 registry, but New York is the first to draft legislation. It would create a voluntary COVID-19 registry, where the COVID-19 survivors would opt-in and provide information related to their sickness, recovery, and long-term effects. This data would be used to study any trends or treatments that might benefit patients.

The lawmakers supporting the registry argue that it would give researchers a more precise idea of a growing national epidemic. The sponsors are pushing to attach the legislation to President’s infrastructure package.

Anthony Fauci is in support of the registry, but he also expressed his concerns about the privacy issues.

Although several studies are being conducted to understand why some people are more susceptible to long COVID symptoms, labor and patient advocacy groups argue that the national Covid registry would be more comprehensive than those individual studies.