March 28, 2023 – Over and over, Mesha Liely was told that it was all in her head. That she was just a woman prone to exaggeration. That she had anxiety. That she simply needed to get more rest and take better care of herself.
The first time an ambulance rushed her to the emergency room in October 2021, she was certain something was seriously wrong. Her heart raced, her chest ached, she felt flushed, and she had numbness and tingling in her arms and legs. And she had recently had COVID-19. But after a 4-day hospital stay and a battery of tests, she was sent home with no diagnosis and told to see a cardiologist.
More than a dozen trips to the emergency room followed over the next several months. Liely saw a cardiologist and several other specialists: a gastroenterologist; an ear, nose, and throat doctor; a vascular doctor; and a neurologist. She got every test imaginable. But she still didn’t get a diagnosis.
“I believe more times than not, I was dismissed,” said Liely, 32, who is Black. “I am female. I am young. I am a minority. The odds are up against me.”
By the time she finally got a diagnosis in May 2022, she felt like a bobble-head with weakness in her arms and legs, rashes and white patches of skin along the right side of her body, distorted vision, swelling and discomfort in her chest, and such a hard time with balance and coordination that she often struggled to walk or even stand up.
“I was in a wheelchair when the doctor at Hopkins told me I had long COVID,” Liely said. “I just broke down and cried. The validation was the biggest thing for me.”
Stark racial and ethnic disparities in who gets sick and who receives treatment have been clear since the early days of the pandemic. Black and Hispanic patients were more likely to get COVID than white people, and, when they did get sick, they were more likely to be hospitalized and more apt to die.
Now, an emerging body of evidence also suggests that Black and Hispanic patients are also more likely to have long COVID – and more likely to get a broader range of symptoms and serious complications when they do.
One study recently published this year in the Journal of General Internal Medicine followed more than 62,000 adults in New York City who had COVID between March 2020 and October 2021. Researchers tracked their health for up to 6 months, comparing them to almost 250,000 people who never had COVID.
Among the roughly 13,000 people hospitalized with severe COVID, 1 in 4 were Black and 1 in 4 were Hispanic, while only 1 in 7 were white, this study found. After these patients left the hospital, Black adults were much more likely than white people to have headaches, chest pain, and joint pain. And Hispanic patients were more apt to have headaches, shortness of breath, joint pain, and chest pain.
There were also racial and ethnic disparities among patients with milder COVID cases. Among people who weren’t hospitalized, Black adults were more likely to have blood clots in their lungs, chest pain, joint pain, anemia, or be malnourished. Hispanic adults were more likely than white adults to have dementia, headaches, anemia, chest pain, and diabetes.
Yet research also suggests that white people are more likely to get diagnosed and treated for long COVID. A separate study published this year in the journal BMC Medicine offers a profile of a typical long COVID patient receiving care at 34 medical centers across the country. And these patients are predominantly white, affluent, well-educated, female, and living in communities with great access to health care.
While more Black and Hispanic patients may get long COVID, “having symptoms of long COVID may not be the same as being able to get treatment.,” said Dhruv Khullar, MD, lead author of the New York City study and a doctor and assistant professor of health policy and economics at Weill Cornell Medical College in New York City.
Many of the same issues that made many Black and Hispanic patients more vulnerable to infection during the pandemic may now be adding to their limited access to care for long COVID, Khullar said.
Nonwhite patients were more apt to have hourly jobs or be essential workers without any ability to telecommute to avoid COVID during the height of the pandemic, Khullar said. They’re also more likely to live in close quarters with family members or roommates and face long commutes on public transit, limiting their options for social distancing.
“If people that are going out of the home that are working in the subways or grocery stores or pharmacies or jobs deemed essential were disproportionately Black or Hispanic, they would have a much higher level of exposure to COVID than people who could work from home and have everything they needed delivered,” Khullar said.
Many of these hourly and low-wages workers are also uninsured or underinsured, lack paid sick time, struggle with issues like child care and transportation when they need checkups, and have less disposable income to cover copays and other out-of-pocket fees, Khullar said. “They can get access to acute urgent medical care, but it’s very hard for a lot of people to access routine care like you would need for long COVID,” Khullar says.
These longstanding barriers to care are now contributing to more long COVID cases – and worse symptoms – among Black and Hispanic patients, said Alba Miranda Azola, MD, co-director of the Post-Acute COVID-19 Team at Johns Hopkins University School of Medicine in Baltimore.
“They basically push through their symptoms for too long without getting care either because they don’t see a doctor at all or because the doctor they do see doesn’t do anything to help” said Azola, who diagnosed Mesha Liely with long COVID. “By the time they get to me, their symptoms are much worse than they needed to be.”
In many ways, Liely’s case is typical of the Black and Hispanic patients Azola sees with long COVID. “It’s not unusual for patients have 10 or even 15 visits to the emergency room without getting any help before they get to me,” Azola said. “Long COVID is poorly understood and underdiagnosed and they just feel gaslit.”
What sets Liely apart is that her job as 911 operator comes with good health benefits and easy access to care.
“I started to notice a pattern where when I go to the ER and my co-workers are there or I am in my law enforcement uniform, and everyone is so concerned and takes me right back,” she recalled. “But when I would go dressed in my regular clothing, I would be waiting 8 to 10 hours and nobody would acknowledge me, or they would ask if I was just here to get pain medicines.”
Liely can easily see how other long COVID patients who look like her might never get diagnosed at all. “It makes me mad but doesn’t surprise me,” she says.
After months of long COVID treatment, including medications for heart issues and muscle weakness as well as home health care, occupational therapy, and physical therapy, Liely went back to work in December. Now, she has good days and bad days.
“On the days I wake up and feel like I’m dying because I feel so bad, that’s when I really think it didn’t need to be like this if only I had been able to get somebody to listen to me sooner,” she said.