March 28, 2023 – Mesha Liely was repeatedly told that it was all in her head. That she was just a lady who tended to exaggerate. That she was afraid. That she simply needed more rest and to take higher care of herself.
When she was first taken to the emergency room by ambulance in October 2021, she was sure something was seriously incorrect. Her heart was racing, her chest hurt, she felt flushed, and had numbness and tingling in her legs and arms. And she had recently had COVID-19. But after a four-day hospital stay and a battery of tests, she was sent home with out a diagnosis and instructed to see a cardiologist.
Over the following few months, greater than a dozen visits to the emergency room followed. Liely went to a cardiologist and several other other specialists: a gastroenterologist, an ENT doctor, a vascular specialist and a neurologist. She had every test possible done. But she still didn't get a diagnosis.
“I think I've been turned away in most cases,” said Liely, 32, who's black. “I'm a woman. I'm young. I'm a minority. The odds are stacked against me.”
When she was finally diagnosed in May 2022, she felt like a bobblehead with weakness in her legs and arms, rashes and white patches of skin on the fitting side of her body, distorted vision, swelling and discomfort in her chest, and such problems with balance and coordination that she often had trouble walking and even standing 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 confirmation was the greatest thing for me.”
Since the start of the pandemic, large racial and ethnic disparities in who gets sick and who gets treatment have been evident. Black and Hispanic patients have been more prone to get COVID than whites, and once they did get sick, they were more prone to be hospitalized and die.
Meanwhile, a growing body of evidence suggests that black and Hispanic patients usually tend to develop Long COVID – and are also more prone to experience a wider range of symptoms and severe complications.
A study published this 12 months in Journal of General Internal Medicine followed greater than 62,000 adults in New York City who had COVID between March 2020 and October 2021. The researchers tracked their health for as much as 6 months and compared them with nearly 250,000 individuals who had never had COVID.
Among the roughly 13,000 people hospitalized with severe COVID, one in 4 were black and one in 4 were Hispanic, while just one in seven were white, that study found. After those patients left the hospital, black adults were way more likely than white people to experience headaches, chest pain and joint pain. And Hispanic patients were more prone to experience headaches, shortness of breath, joint pain and chest pain.
Racial and ethnic disparities also existed amongst patients with milder cases of COVID. Among individuals who weren't hospitalized, black adults were more prone to have blood clots within the 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.
But research also suggests that white individuals are more prone to receive a diagnosis and treatment for Long COVID. A separate study published this 12 months within the journal BMC Medicine offers a profile of a typical long-COVID patient being treated at 34 medical centers across the country. And these patients are predominantly white, affluent, well-educated, female, and live in communities with good access to health care.
While more black and Hispanic patients may develop Long COVID, “the presence of Long COVID symptoms may not be the same as the possibility of treatment,” said Dhruv KhullarMD, lead writer of the New York study and a physician and assistant professor of health policy and economics at Weill Cornell Medical College in New York City.
Many of the identical issues that made many black and Hispanic patients more vulnerable to infection through the pandemic may now be contributing to their limited access to take care of long-COVID patients, Khullar said.
Nonwhite patients usually tend to have hourly jobs or be essential employees and didn't have the choice to work at home to avoid COVID through the height of the pandemic, Khullar said. They are also more prone to live in close quarters with members of the family or roommates and endure long rides on public transportation, limiting their opportunities for social distancing.
“If the people leaving home and working at the subway, the grocery store, the pharmacy or in jobs deemed essential were disproportionately black or Hispanic, they would be at much higher risk of COVID than people who could work from home and have everything they need delivered,” Khullar said.
Many of those hourly and low-wage employees even have little or no insurance, aren't eligible for paid sick leave, struggle with issues like child care and transportation to checkups, and have less disposable income to pay copayments and other out-of-pocket costs, Khullar said. “They can get access to acute emergency medical care, but for many people, it's very difficult to get routine care like what would be needed for Long COVID,” Khullar said.
These long-standing barriers to treatment at the moment are contributing to more long COVID cases – and worse symptoms – in black and Hispanic patients, said Alba Miranda AzolaMD, co-director of the Post-Acute COVID-19 Team at Johns Hopkins University School of Medicine in Baltimore.
“They basically endure their symptoms for too long without getting treatment, either because they don't see a doctor at all or because the doctor they see doesn't do anything to help,” said Azola, who diagnosed Mesha Liely Long COVID. “When they come to me, their symptoms are much worse than they need to be.”
In some ways, Liely's case is typical of the black and Hispanic patients Azola treats with long COVID. “It's not uncommon for patients to have to go to the emergency room 10 or even 15 times without getting help before they come to me,” Azola said. “Long COVID is poorly understood and underdiagnosed, and they just feel manipulated.”
What sets Liely apart is that her job as a 911 operator comes with good medical health insurance advantages and quick access to care.
“I noticed a pattern: When I went to the emergency room and my colleagues were there or I was wearing my police uniform, everyone was so concerned and would take me right back in,” she recalled. “But when I went in my normal clothes, I would wait 8 to 10 hours and no one would acknowledge me or they would ask if I was just there to get pain medication.”
Liely can well imagine that other long-COVID patients who appear like her may never get a diagnosis. “It makes me angry, but it doesn't surprise me,” she says.
After months of long COVID treatment, including medication for heart problems and muscle weakness, in addition to home nursing, occupational therapy and physical therapy, Liely went back to work in December. Now she has good days and bad days.
“On the days when I wake up and feel like I'm going to die because I'm so miserable, I really think that if only I had found someone to listen to me sooner, it wouldn't have had to be this way,” she said.