People of color bearing the brunt of Long COVID, doctors say
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September 12, 2022 – People of color have been hardest hit by the virus since the earliest days of the COVID-19 pandemic. Now many doctors and researchers see big differences in who is caring 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 those long diagnosed and treated with COVID, says Alba Miranda Azola, MD, co-director of the Post-Acute COVID-19 team at Johns Medical Faculty at Hopkins University in Baltimore.
Nonwhite patients are more likely to have no access to primary care, face insurance barriers to seeing specialists, struggle with time off work or transportation to appointments, and face financial barriers to care as co-payments for therapy mount.
“We get a very skewed population of affluent Caucasians who come to our clinic because they have access to healthcare, they have good insurance, and they search the internet and find us,” says Azola.
This mix of patients at Azola’s clinic does not fit the demographics of Baltimore, where the majority of residents are black, half of whom earn less than $52,000 a year, and one in five live in poverty. And that’s not just the case with Hopkins. Experts say many of the dozens of specialized long-stay COVID clinics that have popped up across the country are also seeing an uneven proportion of affluent white patients.
It’s also a patient mix that most likely doesn’t reflect who is most likely to have a long COVID.
During the pandemic, people who identified as Black, Hispanic, or Native American or Alaskan 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 serious infections and at least 70% more likely to die.
“Data repeatedly shows the disproportionate impact of COVID-19 on racial and ethnic minorities, as well as other population groups such as people living in rural or border areas, people affected by homelessness, basic and front-line workers, people with disabilities, people with disabilities Substance use disorders, incarcerated and non-US born persons,” said John Brooks, MD, the CDC’s chief medical officer for COVID-19 response, during testimony before the House Health Subcommittee on Energy and Commerce in Apr 2021 .
“While we do not yet have clear data on the impact of post-COVID conditions on racial and ethnic minorities and other disadvantaged communities, we believe they will likely be disproportionately affected … and less likely to have access to health care services,” Brooks said at the time.
The emerging picture of Long COVID suggests the condition affects around 1 in 5 adults. It is more common in Hispanic adults than in people who identify as Black, Asian, or White. It’s also more common among those who identify as other races or multiple races, according to survey data collected by the CDC.
It’s hard to say how accurate this snapshot is because researchers need to better identify and track 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 in San Antonio. A major limitation of surveys like those being conducted by the CDC to monitor long-COVID is that they can only count people who realize they have the disease.
“Some people from historically marginalized groups may have less health literacy to know about the impact of a long COVID,” she says.
A lack of awareness can prevent people with persistent symptoms from seeing a doctor, leaving many long-duration COVID cases undiagnosed.
When some patients 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’s probably prejudice among vendors,” she says. “For example, I am Puerto Rican and the way we as Latinos describe symptoms may sound exaggerated or brushed aside or lost in translation. I think we miss a lot of patients being diagnosed or referred to specialists because maybe the GP they see has that cultural bias of thinking this is just a Latino being dramatic.
There is some evidence that treatment for long COVID may differ by race, even if symptoms are similar. For example, a study of more than 400,000 patients found no racial differences in the proportion of people who share six common long-term COVID symptoms: shortness of breath, fatigue, weakness, pain, trouble thinking and difficulty moving. Despite this, Black patients were significantly less likely to receive outpatient rehabilitation services to manage these symptoms.
Benjamin Abramoff, MD, who leads the long-COVID collaboration for the American Academy of Physical Medicine and Rehabilitation, draws parallels between what happens during long-COVID and another common health issue that often goes undertreated in patients of color: pain. In both long-COVID and chronic pain, a major barrier to care is “just being taken seriously by providers,” he says.
“There is significant evidence that racial prejudice has led to fewer painkillers being prescribed to people of color,” says Abramoff. “Just as it can be difficult to obtain objective measures of pain, long-standing COVID symptoms can also be difficult to measure objectively and require trust between the provider and the patient.”
Geography can be another barrier to care, says Aaron Friedberg, MD, co-clinical director of the Post-COVID Recovery Program at Ohio State University’s Wexner Medical Center. Many communities hardest hit by COVID – particularly in neighborhoods with high levels of poverty – have long had limited access to healthcare. The pandemic exacerbated staffing shortages at many hospitals and clinics in these communities, leaving patients with even fewer options closer to home.
“I often have patients who travel several hours to get to our clinic and that can create significant challenges, both because of the financial burden and time commitment required to coordinate these types of trips and because Post-COVID symptoms can make this type of travel extremely difficult to tolerate,” says Friedberg.
While the full picture of who has long had COVID – and who is being treated and having good outcomes – is still emerging, it is very clear at this point in the pandemic that access is not equal for all and that many are low-income and not white patients are missing out on necessary treatments, says Friedberg.
“One thing is clear, many people suffer from these conditions alone,” he says.
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