We’ve only just begun to examine the racial disparities of long covid
Liza Fisher is getting ready for a busy day. Her mother will drive her to the clinic where she will receive IV fluids as well as iron treatments for her anemia. It will take her about an hour. After the IV bag is empty she will head to an adaptive gym where she will wear compression pants and take a class designed for people with disabilities. She will also consult with a therapist who is familiar with postural Tachycardia Syndrome, which causes her heart rate to race when she stands.
Fisher is a former flight attendant. Her life is now dominated by daily therapies and exercise, as well as the care provided by her mother, a registered nurse who moved from Ohio to care for her. This is how it’s been for more than a year, after she contracted covid-19 and developed chronic symptoms of long covid.
Of the many people who have had covid, about one in five develop chronic symptoms. The term “long covid”–credited to Elisa Perego, a University College London archeologist who used it in a tweet–refers to a condition, formally known as post-acute sequelae of SARS-CoV-2, defined by symptoms that can last weeks or months after a person contracts covid. It doesn’t seem to matter how severe an infection was. And it can manifest in many ways–common symptoms include inability to concentrate, difficulty breathing, and stomach problems.
Many researchers are trying to understand long covid better, determine who is most at-risk, how it progresses and how to treat. They are also trying to determine if it is a burden on people of color.
Recording a crisis
Researchers suspect that some populations are being hit especially hard by long covid because of disparities in health care. This is exactly what happened to covid. According to the US Centers for Disease Control and Prevention, Black people in the US are more than twice as likely as white people to be hospitalized for covid and almost twice as likely to die. Black women, who have a high rate of preexisting conditions and are overrepresented in occupations where exposure to the virus is more likely, are particularly vulnerable: a study published last year showed they are three times as likely to die of covid as white men.
“Covid-19 disproportionately affects minority communities in the number of cases,” says Luis Ostrosky, an infectious disease specialist and epidemiologist at the University of Texas Health Science Center at Houston. He adds that the mortality rate and morbidity are higher. This means that there are more deaths and higher case rates in white communities than in other areas.
In January, two Democratic members in Congress, Ayanna and Don Pressley, asked the CDC for statistics on long covid. They also requested that numbers be broken down by demographic categories such as race, age, and any previous disability. “We know that covid-19 has disproportionately harmed certain communities more than others, and we suspect that long covid will mirror this trend,” they wrote in the letter to CDC director Rochelle Walensky.
Until early June, there was no nationwide tally of how many people have experienced or are experiencing long covid. The CDC worked with the US Census Bureau to add questions about the condition to the Household Pulse Survey, an ongoing assessment of the impact of the covid-19 pandemic on American households. According to the survey, one in five adults who have had covid-19 have also experienced long covid symptoms.
The National Institutes of Health is also collecting data on people with long covid through a four-year nationwide research project called RECOVER, which aims to recruit 20,000 participants across 200 sites. According to steering committee member Leora Horwitz, as of the end of August, nearly 8,000 people had enrolled in the study, 17% of them Black.
Many Black people tend to shy away from participating in research studies, because of historic abuses as well as ongoing medical mistreatment.
Nevertheless, Horwitz, who is also a RECOVER principal investigator, believes the study will give a clearer view of the impact of long covid on Black people. Gregorio Millett is vice president and director for policy for amfAR (the Foundation for AIDS Research). Millett, who is an epidemiologist, coauthored the first research paper to point out that Black people were contracting covid-19 disproportionately in the US. He claims that there are enough Black participants to conduct comparative analyses with other races RECOVER is still recruiting participants. The recruitment period , will end and the project can begin to answer the big questions about long-covid and its effects on subgroups like Black Americans. The disease has already impacted millions of people’s daily lives in the third year of the pandemic. If government officials or clinicians want to promote equality in a system that discriminates against people of color, it is crucial to understand the impact of long covid as both an illness and an economic event.
As of early August, more than 93 million covid cases had been reported in the US–though the number of actual cases is believed to be far higher. Covid vaccinations and boosters reduce infection risk, but they offer no guarantees. (It is thought, however, that vaccines reduce the risk of developing long covid after a breakthrough infection by 15%. )
When Ostrosky treats patients recovering from covid, he finds they tend to fall into one of “three buckets.” Some are recovering from severe symptoms and organ failure; others acquired a chronic illness, such as diabetes, during their covid infection; and then there are those with long covid.
” These are the most difficult patients to treat,” he said of long covid patients. “They have serious symptoms, but they can’t be found any underlying disease Some have struggled for many years. Fisher remembers the day her long covid symptoms started: August 11, 2020. Her handwriting changed. Her right foot started shaking. The next morning, her right foot began shaking.
Doctors placed implants in her spine to deliver electrical stimulation to calm her tremors in her lower and upper extremities. She can now open her door and apply her makeup. She can now move short distances using a wheelchair and leg braces after months of using it. She can’t work. Fisher says she is fortunate to have access to quality medical care and insurance. She also remembers the dismissiveness and condescension she felt from some medical personnel. Before her symptoms could be taken seriously, she had to return to the ER several times. This is not uncommon for Black women, who are more likely to have negative experiences in medical settings and more likely to be permanently injured or die because of them.
Many watched in horror in late 2020 as Susan Moore, a Black doctor who posted a video online from her hospital bed, recounted having to beg her doctors to treat her covid symptoms. She died shortly after she was transferred to another hospital. Earlier that year, Rana Zoe Mungin, a beloved teacher at a Brooklyn charter school, was denied covid testing twice in her local ER, being told that her breathing difficulty was a panic attack. She died in a matter of weeks after she received the help she needed.
In the past, Moore and Mungin’s deaths might have gone unnoticed by their loved ones. But social media and smartphones have given millions a glimpse at the medical mistreatment Black women are subject to.
Cynthia Adinig, an equity policy advocate based in Northern Virginia, used her cell phone to document about 20 of the visits she made to the ER to get help with mysterious symptoms, including an anaphylaxis-like reaction to ingesting food, that arose after a mild bout of covid in 2020. During one recorded visit, Adinig showed that even though she’d reported cardiac symptoms, there was no heart monitor in her room. After she was discharged, she was escorted by a security guard out of the ER. She requested her medical records to better understand her experience. During a few of her ER visits, she discovered that she had been tested positive for street drugs.
These cases of misdiagnosis or mistreatment show that even the most thorough studies can underestimate the impact of long covid’s effects. This is because racism and sexism in the medical system may have left some people undiagnosed.
It’s impossible to describe the full impact of a widespread, debilitating illness without talking about the economic consequences. Many people suddenly become unable to work. The medical bills start to mount up. Financial consequences can affect entire communities as well as individual households.
Black communities in the US were already economically vulnerable before the pandemic. And Black women have been overrepresented in the industries that experienced the largest pandemic-related job losses, such as hospitality, education, and health services.
In a similar way that the pandemic has magnified health-care disparities it has also magnified economic inequality. The economic toll of long covid in America is still being counted.
“We still need better data,” says Katie Bach, a nonresident senior fellow at the Brookings Institution. In January she estimated, in part on the basis of UK labor studies, that there could be the equivalent of 1.6 million full-time people out of work in the US because of long covid–enough to fill approximately 15% of open jobs. Bach was able to update her numbers using figures from the Household Pulse Survey. Bach now estimates that between 2 and 4 million people are no longer employed as a result long-term covid. She warns that the survey has a low respond rate, making it difficult to draw solid conclusions. She also says that it is not clear why the US long covid rate is higher than the UK.
Those who have been disabled by long covid have to try to secure financial support. Although the US government provided some financial support through covid-relief funding, these funds are no longer available for long covid. People who require ongoing support should rely on both government and private disability programs. It can take a long time to be approved. In the case of the federal government’s Social Security Disability Insurance program, which provides a modest monthly income for workers who become disabled and unable to work, it can take two years to qualify.
When asked if long covid symptoms make it difficult to get disability benefits, a representative from the Social Security Administration said that applicants must prove that their disability is preventing them from working, lasts over a year or will cause death. The representative stated that disability evaluations are based on function and not diagnosis. But even after submitting medical records and doctor statements, many applicants are still denied benefits.
Throughout the country, there have been clinics to treat long-term covid. Interviewees for this story claim that they don’t see many people of color in these clinics, despite the fact that long and short covid has impacted Black and Brown communities. “It’s very obvious to me,” Ostrosky says. “Our clinic requires insurance, and many [people of color] are uninsured.” Approximately 20% of Hispanic people and 11% of Black people in the US are uninsured, compared with 8% of white people.
Liza Fisher has insurance, but she owes more than $100,000 in medical expenses. Her symptoms have been “fluctuating like a roller coaster,” and she continues to pay the bills. Fisher sees the pandemic a crisis that is only getting worse because people have stopped taking preventative measures.
“I don’t believe this is going to work out well,” she said. “I hope we can alter the course.”
Elaine Shelly is a freelance journalist based in Atlanta.
This article was supported by the Heising-Simons Foundation, a family foundation based in San Francisco and Los Altos, California, that works to advance sustainable solutions in climate and clean energy, enable groundbreaking research in science, enhance the education of our youngest learners, and support human rights for all people.
I’m a journalist who specializes in investigative reporting and writing. I have written for the New York Times and other publications.