From the earliest days of the COVID-19 pandemic, people of color have been hardest hit by the virus. Now, many doctors and researchers are seeing big disparities come about in who gets care for long COVID.
Long COVID can affect patients from all walks of life. But many of the same issues that have made the virus particularly devastating in communities of color are also shaping who gets diagnosed and treated for long COVID, says Alba Miranda Azola, MD, co-director of the Post-Acute COVID-19 Team at Johns Hopkins University School of Medicine in Baltimore.
Nonwhite patients are more apt to lack access to primary care, face insurance barriers to see specialists, struggle with time off work or transportation for appointments, and have financial barriers to care as co-payments for therapy pile up.
“We are getting a very skewed population of Caucasian wealthy people who are coming to our clinic because they have the ability to access care, they have good insurance, and they are looking on the internet and find us,” Azola says.
This mix of patients at Azola’s clinic is out of step with the demographics of Baltimore, where the majority of residents are Black, half of them earn less than $52,000 a year, and 1 in 5 live in poverty. And this isn’t unique to Hopkins. Many of the dozens of specialized long COVID clinics that have cropped up around the country are also seeing an unequal share of affluent white patients, experts say.
It’s also a patient mix that very likely doesn’t reflect who is most apt to have long COVID.
During the pandemic, people who identified as Black, Hispanic, or American Indian or Alaska Native were more likely to be diagnosed with COVID than people who identified as white, according to the CDC. These people of color were also at least twice as likely to be hospitalized with severe infections, and at least 70% more likely to die.
“Data repeatedly show the disproportionate impact of COVID-19 on racial and ethnic minority populations, as well as other population groups such as people living in rural or frontier areas, people experiencing homelessness, essential and frontline workers, people with disabilities, people with substance use disorders, people who are incarcerated, and non-U.S.-born persons,” John Brooks, MD, chief medical officer for COVID-19 response at the CDC, said during testimony before the U.S. House Energy and Commerce Subcommittee on Health in April 2021.
“While we do not yet have clear data on the impact of post-COVID conditions on racial and ethnic minority populations and other disadvantaged communities, we do believe that they are likely to be disproportionately impacted … and less likely to be able to access health care services,” Brooks said at the time.
The picture that’s emerging of long COVID suggests that the condition impacts about 1 in 5 adults. It’s more common among Hispanic adults than among people who identify as Black, Asian, or white. It’s also more common among those who identify as other races or multiple races, according survey data collected by the CDC.
There’s some evidence that treatment for long COVID may differ by race even when symptoms are similar. One study of more than 400,000 patients, for example, found no racial differences in the proportion of people who have six common long COVID symptoms: shortness of breath, fatigue, weakness, pain, trouble with thinking skills, and a hard time getting around. Despite this, Black patients were significantly less likely to receive outpatient rehabilitation services to treat these symptoms.
Benjamin Abramoff, MD, who leads the long COVID collaborative for the American Academy of Physical Medicine and Rehabilitation, draws parallels between what happens with long COVID to another common health problem often undertreated among patients of color: pain. With both long COVID and chronic pain, one major barrier to care is “just getting taken seriously by providers,” he says.
“There is significant evidence that racial bias has led to less prescription of pain medications to people of color,” Abramoff says. “Just as pain can be difficult to get objective measures of, long COVID symptoms can also be difficult to objectively measure and requires trust between the provider and patient.”
Geography can be another barrier to care, says Aaron Friedberg, MD, clinical co-lead of the Post-COVID Recovery Program at the Ohio State University Wexner Medical Center. Many communities hardest hit by COVID – particularly in high-poverty urban neighborhoods – have long had limited access to care. The pandemic worsened staffing shortages at many hospitals and clinics in these communities, leaving patients even fewer options close to home.
“I often have patients driving several hours to come to our clinic, and that can create significant challenges both because of the financial burden and time required to coordinate that type of travel, but also because post-COVID symptoms can make it extremely challenging to tolerate that type of travel,” Friedberg says.