Sept. 12, 2022 – 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.
It’s hard to say how accurate this snapshot is because researchers need to do a better job of identifying and following people with long COVID, says Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the COVID-19 Recovery Clinic at the University of Texas Health Science Center at San Antonio. A major limitation of surveys like the ones done by the CDC to monitor long COVID is that only people who realize they have the condition can get counted.
“Some people from historically marginalized groups may have less health literacy to know about impacts of long COVID,” she says.
Lack of awareness may keep people with persistent symptoms from seeking medical attention, leaving many long COVID cases undiagnosed.
When some patients do seek help, their complaints may not be acknowledged or understood. Often, cultural bias or structural racism can get in the way of diagnosis and treatment, Azola says.
“I hate to say this, but there is probably bias among providers,” she says. “For example, I am Puerto Rican, and the way we describe symptoms as Latinos may sound exaggerated or may be brushed aside or lost in translation. I think we miss a lot of patients being diagnosed or referred to specialists because the primary care provider they see maybe leans into this cultural bias of thinking this is just a Latino being dramatic.”
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.
Even though the complete picture of who has long COVID – and who’s getting treated and getting good outcomes – is still emerging, it’s very clear at this point in the pandemic that access isn’t equal among everyone and that many low-income and nonwhite patients are missing out on needed treatments, Friedberg says.
“One thing that is clear is that there are many people suffering alone from these conditions,” he says.