'I felt powerless': Black Americans suffering from long COVID say they have trouble accessing care

Throughout the pandemic, Black Americans have made up a disproportionate share of cases, hospitalizations and deaths compared to any other racial or ethnic group.

Now, doctors and advocates are warning the Black community is facing another barrier: access to long COVID care.

Long COVID occurs when patients who were infected with the COVID-19 virus have lingering symptoms for more than four weeks after recovering. In some cases, these symptoms can persist for months or even years.

It's unclear what causes people to develop the condition, but research is ongoing.

According to data from the U.S. Census Bureau Household Pulse Survey, with the latest update conducted between Jan. 4 and Jan. 16, 28.7% of Black respondents said they currently have or have had long COVID.

By comparison, 27.6% of white adults reporting having or having had long COVID. Hispanic adults were the only racial/ethnic group with a higher percentage reporting long COVID at 31.7%.

However, when it came to adults currently with long COVID who are suffering from significant limitations, Black patients had the highest share of people reporting, the survey shows.

Data shows 34.6% of Black Americans with long COVID report severe limitations on their ability to perform day-to-day activities. Hispanics had the second highest rates of severe physical limitations at 32% and those who reported being multiple races or another race were 30.5%.

'Nobody wanted to listen to me'

One of those people is Chimére Smith, a 40-year-old former middle school English teacher from Baltimore, Maryland.

Smith said she contracted COVID in late March 2020. Her symptoms started off with a scratchy throat and soon progressed to a myriad of symptoms including extreme fatigue, a persistent cough, fogginess, headaches, nausea, diarrhea and spinal pain.

"I remember trying to do some type of social media dance with my partner and after like two minutes, I had to sit down because the world was spinning," she told ABC News. "And so, within those first few days, as I said to my partner, 'I think I have COVID.'"

Smith said she went to two hospitals in the Baltimore area, both of which were familiar with her medical history, but doctors refused to test her for COVID-19.

"They told me that my symptoms were not profound enough to test," she said. "They told me that they didn't have enough tests. They told me that I was fine and that I was just being anxious because we were out of school for the unforeseeable future. I got a lot of doctors telling me I was anxious, and that I was okay."

However, Smith's symptoms continued for several weeks and even months, to the point where she lost vision in her left eye and was left unable to work or drive.

Smith said she paid more than a dozen visits to doctors and hospitals asking for help, but she said she was discharged after every visit with no treatment plan in place.

Smith said she had never been dismissed by a doctor before and felt discouraged.

"I felt extremely frustrated," she said. "I was incredibly sad and depressed about that. I felt very despondent. I had several white male doctors sit at my bedside and ask me, 'Are you sure there's nothing personal going on in your life? Are you sure? Is it a relationship issue? Was it a job issue?'"

She continued, "But nobody wanted to listen to me. And so, it was infuriating. I felt powerless. The way that some of those doctors talk to me, I can tell they were talking to me that way because I was a Black female patient, who they assumed did not know anything about what was happening to her body."

In April 2021, Smith testified before the U.S. House Energy and Commerce Subcommittee on Health on the lingering effects of COVID-19.

Implicit bias in the medical field

There is a history of distrust when it comes to the Black community and the health care system due to beliefs among patients that doctors won't treat them as well as their white counterparts. A 2012 meta-analysis found Black patients were 22% less likely than white patients to receive any pain medication.

There is also a fear of being used as guinea pigs in clinical research or other studies as what occurred during the Tuskegee experiments from 1932 to 1971.

Black men were injected with syphilis to track progression of the sexually transmitted in infection, but the study was conducted without informed consent and patients never received treatment for the disease.

What's more, eugenics movements in the 20th century saw many women across communities or of color forcibly sterilized.

Dr. Panagis Galiatsatos, an assistant professor and physician in pulmonary and critical care medicine at the Johns Hopkins University School of Medicine, told ABC News there is unconscious and implicit bias in the medical field that may lead to doctors dismissing Black patients compared to white patients.

"I can tell you, for a lot of affluent patients coming to our clinic or white patients, what got them to this clinic is that their doctor took their symptoms seriously and got him to our clinic," Galiatsatos, a member of the Johns Hopkins Post-Acute COVID-19 Team, said. "Counter that with disadvantaged patients from a socioeconomic standpoint or Black/African-American patients, it took them several doctors to listen to what they're experiencing before someone took them seriously."

During the period when she thought no one was listening to her, Smith said she felt like she was going to die before anyone figured out what was wrong.

It wasn't until a year and two months after Smith's symptoms first began that she visited a doctor who told her she believed that Smith was suffering from long COVID.

"I had a doctor's appointment on May 20, which was my 39th birthday, and on that day was when a physician, a Black woman said to me, for the very first time, 'I believe you,'" she said. "And when she said that I cried like a baby. Because I could not believe somebody was actually telling me, 'I believe you. Everything that you're saying to me, convinces me that you had COVID.'"

Trouble accessing care

It's not just a matter of getting doctors to believe Black patients. There's also trouble accessing care among the Black community.

"So, with my own eyes, my colleagues and I have seen it in our own clinic, where those that are so economically disadvantaged, those of minority race, their persistence of symptoms by the time they get to our clinic have been going on for a little over a year," Galiatsatos said. "When we counter that versus populations of higher socioeconomic status or the white race, for instance, those individuals usually catch us well within three to six months."

There are several factors at play. Black Americans traditionally have less access to insurance -- let alone quality insurance -- allowing them to see a doctor at a post-COVID clinic.

"So many of our patients that we've taken on have had to go through several insurance authorizations just to get a referral to come to us, and that's what they will say is part of their delay," Galiatsatos said.

Additionally, despite several clinics opening up across the country, Black patients are more likely to rely on public transportation, meaning less access to clinics. Galiatsatos said fewer than 10% of the patients he sees at the post-COVID clinic are Black.

Black households are also less likely to have internet. According to the Joint Center for Political and Economic Studies, 34% of Black adults in the U.S. do not have home broadband, meaning they may not have information about long COVID or know where to go to receive care.

What's more, a 2022 study found Black Americans make up about 15% of the U.S. workforce, but are much more likely than white Americans to hold frontline or essential jobs, accounting for 30% of bus drivers and 20% of food service workers, for example.

"A day missed of work is a day missed of income," Galiatsatos said. "If those patients have long COVID, they're going to decide between a paycheck and their health every day and that's not fair to them."

To close the racial gap in long COVID care, Galiatsatos recommends more regular implicit bias training among doctors and more telemedicine so patients can access specialized clinics.

Smith, the long COVID patient, said school buildings, historically black colleges and universities, churches and other community organizations can be used to educate Black communities on the effects of COVID and long COVID.

While Smith is able to cook and drive again, she still is unable to work and experiences several symptoms including brain fog, short-term memory loss, joint pain, gastrointestinal inflammation and headaches.

She hopes her story will help educate others and convince them to be their own advocate if they get pushback from physicians.

"This has been my reality for three years," she said. "I would rather be in a classroom with 40 kids, talking about how to write a great essay, than sitting here talking to you. Three years later, and I still get no comfort. I love telling my story to inspire other Black people and Black families, but I don't get any joy."