Lawmakers Try to Help Long-Haulers

by Jan Frazier

Washington, D.C. (Washington Insider Magazine)   With thousands of people still with the “often-debilitating long-term symptoms of Covid-19,” state as well as federal lawmakers – with the support of local and state unions – “are now looking to survivor registries created after 9/11.”

These efforts by the lawmakers are centered on data acquired from the survivors of 9/11 so that long-haulers of the Covid pandemic could access the data and be able to “make informed decision about their care, allow medical providers to study the coronavirus’ still mysterious long-term effects on the body, and help them qualify for state or federal benefits.”

However, some of the public health experts say that patients from minority groups “who have been disproportionately affected by Covid will be less likely to know about these efforts and have less access to care.”

Brookings Institution Kavita Patel, a physician who has previously worked on medical data in Congress as well as in the Obama White House, claimed, “Very poor, disenfranchised people don’t opt-in, and very wealthy, educated people also don’t opt-in. When you have a bell curve, you miss the insights you get from the outliners and the extremes.”

Nearly 10 percent of all people infected with the Covid-19 virus experienced long-term effects; however, there are not yet guidelines for either treatment or diagnosis. A few of the symptoms are “brain fog, shortness of breath, or depression.” Patients with any of the symptoms have had problems accessing treatment or qualifying for any benefits. For example, unemployment, disability, or workers’ compensation have not be used.

New York lawmakers have drafted legislation to help. They have “modeled their bill after a city registry of 9/11 survivors and first responders who developed chronic illnesses following the World Trade Center attacks.” If officials would follow this procedure, it could “create a voluntary Covid registry that would help New York’s health department to collect data to study any trends or treatments that might benefit patients.”

Lawmakers in Washington, D.C., who are supporting this federal registry say that “it would give scientists a most accurate picture of a growing national epidemic.” The new legislation would give the government $100 million for data and material to educate doctors about “long Covid.” In addition, it would include $30 million “to establish a database for patients to voluntarily share information about long-running symptoms.”

Anthony Fauci, Biden’s chief medical adviser, told Politico, “I’m all for it.” Union leaders in New York – which was one of the hardest-hit states – “are getting behind the push for a Covid registry, noting that many of their members never had the option to work from home and are now suffering from lingering symptoms.”


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