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Experts warn of racial disparities in diagnosis and treatment of long COVID

A line outside a New York City Health and Hospitals COVID-19 testing site in the Lower East Side neighborhood of New York in December 2021.Angus Mordant/Bloomberg

It has long been clear that Black Americans have experienced high rates of coronavirus infection, hospitalization and death throughout the pandemic.

But those factors are now leading experts to sound the alarm about what may come next: a prevalence of long COVID-19 in the Black community and a lack of access to treatment.

Long COVID — with chronic symptoms like fatigue, cognitive problems and others that linger for months after an acute COVID-19 infection has cleared up — has perplexed researchers, and many are working hard to find a treatment for people experiencing it. But health experts warn that crucial data is missing: Black Americans have not been sufficiently included in long COVID trials, treatment programs and registries, according to the authors of a new report released Tuesday.

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“We expect there are going to be greater barriers to access the resources and services available for long COVID,” said one of the authors, Dr. Marcella Nunez-Smith, director of Yale University’s health equity office and former chair of President Joe Biden’s health equity task force.

“The pandemic isn’t over; it isn’t over for anyone,” Nunez-Smith said. “But the reality is, it’s certainly not over in Black America.”

The report, called the State of Black America and COVID-19, outlines how disinvestment in health care in Black communities contributed to Black people contracting COVID at higher rates than white people. Black people were more likely to face serious illness or death as a result.

The Black Coalition Against COVID, the Yale School of Medicine and the Morehouse School of Medicine were authors of the report, which also offers recommendations to policy leaders.

In the first three months of the pandemic, the average weekly case rate per 100,000 Black Americans was 36.2, compared with 12.5 for white Americans, the authors wrote. The Black hospitalization rate was 12.6 per 100,000, compared with 4 for white people, and the death rate was also higher: 3.6 compared with 1.8.

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“The severity of COVID-19 among Black Americans was the predictable result of structural and societal realities, not differences in genetic predisposition,” the report said.

Black Americans were overrepresented in essential worker positions, which increased the risk of exposure to the virus, the authors wrote. And they were also more likely than white Americans to live in multigenerational homes or crowded spaces, be incarcerated, or live in densely populated areas.

Many Black Americans who contracted the coronavirus experienced serious illness because of preexisting conditions, such as obesity, hypertension and chronic kidney disease, which themselves were often the result of “differential access to high-quality care and health promoting resources,” the report said.

The authorization of the first coronavirus vaccines was seen by many experts as a light at the end of the tunnel, but new disparities emerged, driven by both vaccine hesitancy and limited access to the shots.

Although the gap in vaccinations has since narrowed — 80% of Black Americans were fully vaccinated as of January, compared with 83% of white Americans, the report said — disparities persist.

“We understand that there remains unfinished work yet to do to save and protect our communities from the COVID-19 pandemic,” wrote Dr. Reed Tuckson, who in April 2020 co-founded the Black Coalition Against COVID.

And when it comes to unfinished work, long COVID is top of mind.

“So much of even getting a long COVID diagnosis is tied to having had a positive test right at the beginning,” said Nunez-Smith, adding that early on in the pandemic, many Black Americans “weren’t able to secure a test and in some cases were denied testing.”

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She emphasized the importance of investing adequate resources into studying long COVID.

“Like everything else, without intentionality, we’re not going to get to equity there,” she said.