NIH Uncovers Racial Disparities in Long COVID Symptoms, Diagnosis Rates

Two preliminary investigations of long COVID are indicating that there are health disparities in the long-term illness, just as there were disparities in coronavirus infections at the start of the pandemic, according to the National Institutes for Health (NIH).

Particularly, the pair of studies showed that Black and Hispanic people are more likely to report symptoms of long COVID than their White peers but that White people are more likely to have a documented case of the illness.

“This new evidence suggests that there may be important differences in how long COVID manifests in different racial and ethnic groups,” Mitchell S.V. Elkind, MD, a professor of neurology and epidemiology at Columbia University, New York City, and chief clinical science officer for the American Heart Association, said in a press release.

“However, further research is needed to better understand the mechanisms for these differences in symptoms and access to care, and also if diagnostic codes assigned by clinicians may play a role,” Elkind added.

Long COVID refers to a patient's lingering symptoms after a COVID-19 infection. Long COVID has become a catch-all term, the researchers said, for any of the related symptoms a patient might feel. Common long COVID symptoms include brain fog, respiratory, and gastrointestinal issues.

Black and Hispanic patients are far more likely to report those symptoms, the first study reported in the Journal of General Internal Medicine. The researchers looked at health records for over 62,000 adults who received a positive COVID-19 test at one of the five academic facilities in New York City between March 2020 and October 2021.

After tracking the health of those individuals for six months and comparing health and well-being to more than 200,000 adults who never had COVID-19, the researchers found that around 13,000 had severe long COVID symptoms.

And of that 13,000, the vast majority were Black or Hispanic.

Specifically, one in four severe long COVID patients was Black, one in four was Hispanic, and one in seven was White, the researchers reported.

That severe long COVID resulted in downstream health complications, the researchers added. Black adults with severe disease were more likely to receive a diabetes diagnosis, experience headaches, have joint pain, or have chest pain. Black adults were less likely to have sleep disorders, cognitive problems, or fatigue, the team pointed out.

For Hispanic patients with severe long COVID, the risk for headaches, shortness of breath, joint pain, and chest pain were all higher than for their White counterparts. Like Black patients, Hispanic patients were less likely to have sleep disorders, cognitive problems, or fatigue.

Similar trends emerged for those with mild or moderate long COVID. For Black people, there was an increased risk of blood clots in their lungs, chest pain, joint pain, anemia, and malnourishment. For Hispanic people, there was an increased risk for dementia, headaches, anemia, chest pain, and diabetes. White patients remained most likely to experience cognitive impairment.

Across all patients with long COVID, the researchers found impacts on the nervous system, respiratory function, circulation, fatigue, and joint pain.

“It’s not clear what's behind these symptom variations,” Dhruv Khullar, MD, a study author, physician, and assistant professor of health policy and economics at Weill Cornell Medicine, stated publicly. “We hope this work draws attention to possible differences across racial and ethnic groups, stimulates research into the potential mechanisms, and sparks discussion among patients, clinicians, and policymakers.” 

The second study, published in BMC Medicine, indicated that many cases of long COVID are actually being missed.

The researchers combed through digital health records for just shy of 34,000 adults with a long COVID diagnosis who received care at one of 34 US healthcare organizations. Each patient in the study was given the specific diagnosis “Post COVID-19 condition, unspecified,” a code created in October 2021.

Interestingly, the population for which the long COVID diagnosis code was most prevalent were non-Hispanic White women who lived in low-poverty areas with high healthcare access.

That’s not exactly a profile for the most vulnerable COVID patient, numerous separate studies have shown. Older adults, populations of color, and low-income folks have been at higher risk for COVID-19 since the pandemic’s outbreak in 2020. It would be logical for these populations to also be at higher risk for long COVID, but this study showed that is not the case.

The NIH researchers said these findings might indicate that diagnoses of long COVID are likely being missed.

Emily Pfaff, PhD, a study author and assistant professor in the Division of Endocrinology and Metabolism at the University of North Carolina, Chapel Hill, said those missed diagnoses could be the credit of differences in healthcare utilization and health literacy.

Women are more likely to access healthcare than men, she noted, and those from low-poverty areas might have greater health literacy plus the time and resources needed to get care for long COVID.

“You can see all the different ways these diagnostic codes can provide insight, but they can also skew the whole story,” Pfaff said in a statement.

The researchers uncovered other patterns that could provide insight into long COVID. For example, most documented cases of long COVID indicate milder infection, with long-term symptoms usually falling into one of a few categories: cardiopulmonary, neurological, gastrointestinal, and coexisting conditions.

Different age groups were predisposed to different kinds of long COVID. Teens, for example, were more likely to experience gastrointestinal and upper respiratory symptoms. Young adults ages 21 to 45 tended to report neurological problems, like brain fog. The oldest long COVID patients were more likely to report coexisting problems that the researchers said were likely more the result of age than long COVID.

“This research contributes to our understanding of symptom clusters in long COVID that may be differentiated by race, ethnicity, and influenced by social determinants of health,” Gary H. Gibbons, MD, director of the National Heart, Lung, and Blood Institute, said of both studies. “It also provides vital insights into the utility, as well as the constraints, of the diagnostic code now in use for long COVID.”