Liza Fisher is preparing for a busy day. In about an hour, her mother will drive her to a clinic, where she will receive IV fluids and iron treatments for her anemia. When the IV bag is empty, she’ll head to an adaptive gym, where she’ll don compression pants and take a class for people with disabilities. She’ll also consult with a therapist familiar with postural tachycardia syndrome, a condition that causes her heart to race when she stands up.
Fisher, who lives in Houston, was once an athletic flight attendant. Now her life is consumed with daily therapies and exercise as well as care offered by her mother, a nurse who moved from Ohio to take care of 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 appear to matter how severe the infection was. And it can manifest in many ways—common symptoms include inability to concentrate, difficulty breathing, and stomach problems.
Many researchers are working to better understand long covid and determine who is most at risk, how the illness progresses, and how to treat it. But they are also seeking to understand the extent to which it places a particular 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. In fact, that’s exactly what happened with covid itself. 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. “The mortality rate is higher, and so is morbidity,” he adds. That means there are more deaths as well as higher case rates than in white communities.
In January, two Democratic members of Congress, Ayanna Pressley and Don Beyer, called on the CDC to release statistics on people living with long covid and to break out numbers for various demographic categories, including race, age, and 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, vice president and director for public policy for amfAR, the Foundation for AIDS Research, agrees. 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 says there are enough Black participants “to conduct several comparative analyses with other races or ethnicities.”
RECOVER is still recruiting participants. When the recruitment period ends, the project could finally start to answer some of the big questions about long covid and its impact on subgroups such as Black Americans. In this third year of the pandemic, the disease already casts a shadow on the daily lives of millions of people. Understanding the burden of long covid—both as an illness and as an economic event—is crucial if government officials or clinicians hope to foster equality in a health-care system that is already stacked against people of color.
Medical mistreatment
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 to treat,” he says of long covid patients. “They have serious symptoms, but we can’t find anything organically wrong or any underlying disease.”
Some have already struggled for many months. Fisher remembers the day her long covid symptoms started: August 11, 2020. Her handwriting changed. Her right foot started shaking. By the next morning, she was having tremors over her entire body that prevented her from walking or taking care of herself.
Doctors ultimately placed implants on her spine to deliver electrical stimulation and calm the tremors in her upper and lower extremities. She can now unlock her door and apply her own makeup. After months using a wheelchair, she can move short distances with the help of a wheeled walker and leg braces. But she still can’t work.
Fisher she says she’s fortunate to have insurance, access to quality medical care, and a doctor who advocated for her. But she also recalls the condescension and dismissiveness she felt from some medical staff. She had to make repeated ER visits before her symptoms were taken seriously. 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 transferred to another hospital to seek better care but died a few days later. 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. By the time she finally got the help she needed, she had to be placed on a ventilator, and she died within weeks.
In the past, the deaths of Moore and Mungin might have gone unnoticed by anyone other than their loved ones, but the popularity of social media and smartphones has given millions a peek at the medical mistreatment some Black women receive.
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. In another visit, she was escorted out of the ER by a security guard after she was discharged. Wanting to understand her experiences better, she requested her medical records. She discovered that she had been tested for street drugs, without her knowledge, during a couple of her ER visits.
These cases of misdiagnosis and mistreatment suggest that even the best studies may underestimate long covid’s impact because racism and sexism within the medical system have left some people undiagnosed.
Mounting costs
It’s impossible to describe the full impact of a widespread, debilitating illness without talking about the economic consequences. Thousands of people are suddenly unable to work. The medical bills start piling up. The financial consequences affect not only individual households but entire communities.
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.
Similar to the way the pandemic magnified health-care disparities, it has also magnified economic disparities. But the economic toll of long covid in the US 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. Thanks to figures from the Household Pulse Survey, Bach was recently able to update her numbers. She now estimates that 2 to 4 million are no longer working as a result of long covid. But she cautions that the survey has a low response rate, which makes it harder to draw solid conclusions from its statistics. What’s more, she says, it’s unclear why the US rate of long covid is so much higher than the rate in the UK.
Those who have been disabled by long covid have to try to secure financial support. The US government has provided some money through covid-relief funds, but the funds, which are no longer available, were not specifically for those with long covid. People who need ongoing support must rely on private and government disability programs. The wait to get approved can be quite long. 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 the highly varied nature of long covid symptoms makes it difficult to qualify for disability benefits, a Social Security Administration representative said applicants must show that their disability prevents them from working, will last over a year, or will cause death. “Disability evaluations are based on function, not diagnosis,” the representative wrote. But even after submitting medical records and doctor statements, many applicants are still denied benefits.
Meanwhile, clinics have opened throughout the country to treat individuals with long covid. But clinicians interviewed for this story say they see few people of color in those clinics, despite the sense that Black and brown communities have been hard hit by both covid and long covid.
“It’s very clear to me,” says Ostrosky. “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. She has seen her symptoms “fluctuate like a roller-coaster,” and the bills continue to roll in. Fisher sees the pandemic as an unfolding crisis, made all the worse by those who have stopped taking protective measures.
“I don’t think this is going to play out well,” she says. “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.
It was published through MIT Technology Review’s covid inequality fellowships supporting journalism focused on the pandemic’s disparate impacts. For more on this topic, read about what the pandemic meant for Black women at risk of domestic violence and Native communities that are using pandemic relief funds to upgrade their telecom networks.