It’s well-known now that people of color have shouldered a disproportionate burden in the Covid-19 pandemic. Now researchers and clinicians are increasingly concerned that history is repeating itself in the case of long Covid.
Long Covid — one name for the mysterious multitude of problems that persist after Covid-19 infections have cleared — affects all populations to some degree; it also afflicts people regardless of whether they had mild or even no symptoms, or needed ICU care to survive.
But researchers and health care clinics fear that the same reasons that caused certain racial and ethnic groups to experience higher infection rates and illness severity may be responsible for driving disparities in the treatment of long Covid. Many vulnerable communities lack access to quality care, or face heightened burdens to convince providers that their conditions are real.
“If you are from a community such as myself, it’s bad enough when you have to go to the doctor and you might have experienced discrimination or just unwillingness to be heard,” said Monica Lypson, a Black physician who is the co-director of the Covid-19 Recovery Clinic at George Washington University Medical Faculty Associates in Washington, D.C. “Now that you have these kind of nonspecific symptoms, it’s even harder to try to say, ‘OK, I’m a go and advocate for myself and be willing to browbeat the system to hear me.’”
It’s unclear whether people of color are more likely overall to develop long Covid.
“Just as with acute Covid, data on race and ethnicity at the beginning was not being reported accurately,” said Sabrina Assoumou, an infectious diseases physician at Boston Medical Center. “And it still isn’t reported as accurately as you want: first of all, who is getting tested, who’s getting diagnosed, and who is getting long Covid in terms of racial and ethnic breakdown.”
John Brooks, chief medical officer on the Covid-19 response at the Centers for Disease Control and Prevention, acknowledged both the dearth of demographic information and the likelihood that disparities persist.
“While we do not yet have clear data on the impact of post-Covid conditions on racial and ethnic minority populations and other disadvantaged communities, we do believe that they are likely to be disproportionately impacted by these conditions as they are more likely to acquire SARS-CoV-2 and less likely to be able to access health care services,” he said at a congressional hearing last month. “While [post-acute Covid care] clinics are a critical resource for those suffering from post-Covid conditions, many people do not have access to them due to geographic location or insurance status.”
About 60 clinics devoted to caring for long Covid patients have opened up over the last several months across the United States, bringing together specialists in more than a dozen disciplines, from pulmonary and cardiovascular diseases to psychiatric and neurologic disorders to gastrointestinal and musculoskeletal conditions. Many clinics are based at academic medical centers where research is also being conducted to one day understand what causes these lingering problems, predict who is vulnerable, and devise the best treatments.
For months, doctors, nurses, and therapists in these clinics have been underscoring how important it is just towhen they say they can’t catch their breath or clear their brain fog or shed the fatigue that keeps them from working. For people of color who have borne a disproportionate burden of Covid-19 infections and severe illness, not being believed is nothing new.
Chimére Smith, a middle school English teacher in a low-income neighborhood in Baltimore, started last year like the four years before. Then Covid-19 and its aftermath robbed her of a respected career, a home, and money in the bank, in her words, transforming her into “a Black woman in America who doesn’t know enough words to convince doctors and medical staff to take my bout with long Covid seriously,” she said at the congressional hearing. “Long Covid is not just a white woman’s condition.”
Vanessa Trespalacios, an internal medicine physician and medical director of the Post-COVID Recovery Program at Saint Barnabas Medical Center in West Orange, N.J., said that when it comes to outcomes for people with long Covid, the differentiator is access to care. The New Jersey health care system, which includes 12 hospitals as well as medical group practices, reflects the population it serves in its long Covid clinic, which opened in October. That means by race, 49% of patients are white, 29% Black, 4% Asian, 1% Pacific Islander, and 17% other. By ethnicity, 72% are non-Hispanic and 28% are Hispanic.
“We’re seeing patients of color, of different ethnicities, of different socioeconomic classes, and everyone is included,” she said, and outlined plans to expand those efforts to smaller satellite locations to ease any transportation difficulties for patients. “But I think that is why they have been disproportionately affected in those communities: It’s due to access to health care.”
At Mount Sinai’s Center for Post-Covid Care, which opened the first U.S. clinic dedicated to long Covid last April, people who agreed to enroll in Covid research studies do reflect the population served by the hospital system: 20% of participants are Black and 20% are Hispanic, said Juan Wisnivesky, a pulmonologist and clinical epidemiologist whose research focuses on people of color. Culturally sensitive approaches work to increase enrollment, and the baffling nature of Covid may be making people more eager to join research. “Compared to other studies, I think there’s a bit more responsiveness of some patients being willing to participate.”
Patient groups have sprung up to share their long Covid experiences and advocate for change, but may not represent the pandemic’s reach. People of all races and ethnicities have felt their symptoms were dismissed, particularly if they fell ill before Covid testing was widespread. At the same hearing where Smith spoke, Natalie Hakala, who is white, said, “People weren’t believed.” Smith also said she was denied testing during the first two weeks she had symptoms and was later told more than a dozen times that she never had Covid after testing negative for the virus and its antibodies.
Carina Marquez, assistant professor of medicine at the University of California, San Francisco, School of Medicine, has long been involved in community-based research, first with HIV and now with Covid-19. She’s been working to increase Latino representation in an observational study on Covid’s long-term impact. “When you think about existing cohorts, a lot of them are more homogeneous in terms of more upper-middle-class or higher-income people, more predominantly white.”
At certain points during the pandemic in San Francisco, Latino people accounted for up to 60% of cases. Many of those people were not English speakers and went without access to medical care. If researchers later draw participants only from people enrolled in health care systems, Marquez said, they will miss this huge population. “It is important that this community, which has been disproportionately affected, is really included in these trials.”
For the UCSF study, Marquez said the goal of 35% Latino representation has been met, which she sees as solving one piece of a bigger puzzle. “I think it is a larger question for all these inequities that were glaringly obvious, ensuring that we are responding to them, linking people to care, and that when they leave care, that there are systems in place to address their health concerns that come up after Covid, whether it be a special clinic or somewhere [else] that someone can go to,” she said.
Lypson, the doctor in Washington, had noticed some patients hoping to be seen in the George Washington clinic there had been turned away at Mount Sinai’s post-Covid center in New York. That speaks volumes about the importance of having an income and the ability to travel for care, she said.
“If you’re an essential employee and gainfully employed, you have to be at work and you’re not teleworking. Finding a Covid recovery clinic throughout the country is probably hard to do and probably not high on your priority list,” Lypson said. “People who were putting our groceries on the shelves, people in the transportation industry like Metro or bus drivers — the idea that you’d be on the phone trying to find a clinic that potentially was an hour to four hours away from you is a lot.”
Assoumou of Boston Medical Center, where the safety-net hospital’s long Covid clinic is relatively new, sees a role for both long Covid clinics and primary care physicians who send their patients to the clinics, where a nurse navigator can direct a person to an evaluation based on symptoms. A primary care physician may know the patient well enough to recognize the need for specialty care. “Another important piece is there’s a lot of data that shows that in terms of improving the care of patients of color, racial concordance between the clinician and patient often makes a big difference,” she said.
Fred Pelzman, an internist in New York who is associate medical director of Cornell Internal Medicine Associates, sees an advantage for patients who have an existing relationship with a primary care provider. But not everyone who has those relationships wants to seek out care for long Covid at a hospital.
“A lot of people came into the hospital reluctant to interact with the health care system and have returned to the community, reluctant to interact more,” he said. “We had an enormous number of people who didn’t want to come to care. They were scared to come to the hospital. They were worried they would lose their job. They would worry they couldn’t pay the bills. They were worried they couldn’t leave a family member at home and managed on their own and never even came to care.”
In the pandemic’s first wave last year in Atlanta, 70% of hospitalized patients were Black and 18% were white, said Alex Truong, a pulmonologist and co-director of the Emory Executive Park post-Covid clinic. The clinic, which opened in August, was designed to treat not just people experiencing difficulty after ICU stays — a better understood condition — but also people whose Covid infections were less severe before after-effects became disabling. Of the people coming into that outpatient post-Covid program, 47% are white, 35% Black, 2% Latino, and 8% unknown, a closer match to the midtown Atlanta community where the clinic is located.
“Everybody’s telling me a very similar story,” Truong said. “They’re extremely fatigued. They have brain fog, they have shortness of breath they can’t figure out. They have limitations in their ability to work.”
Truong estimates 1 in 5 score low enough on a cognitive assessment to qualify as having mild cognitive impairment, which is sobering, but he has found hope in seeing people recover after about six months to something like their pre-Covid selves. The brain fog lifts, but not entirely. Concentration is not as easy, nor is word-finding. And there is still some forgetfulness.
Truong urges patients to get their Covid-19 vaccinations, which is not an easy sell to Black people in particular, who may mistrust the health care system. “I understand the hesitation. I totally understand it,” he said. “But I think that we need to do a much better job at outreaching to them.”
Smith, the Baltimore schoolteacher whose long Covid disabled her, wants to make sure mental health is not left behind. She’s working to create a hub for Black people with long Covid complications, using her church building to provide free mental health and other resources to support patients, their families, and caretakers.
“Clinics cannot do this work alone in urban communities,” she said at last week’s hearing. “I am a Black woman who carries the weight of other Black women who have — with different but no less traumatic conditions — been left misdiagnosed, humiliated, and frightened.”