Until recently, Stephanie Williams-Crosby could shake off a cold in a day or two on the rare occasions she got sick. The 55-year-old mother of five and grandmother of eight was such a dynamo that people called her “Roadrunner.”
“I was always out and about,” said Williams-Crosby, who once owned a restaurant.
Today, Roadrunner uses the motorized cart in the supermarket, too exhausted to browse the aisles on her feet. A few ordinary chores can flatten her. She has intermittent bouts of headaches, sinus congestion, coughing, and a sore throat that once grew so painful that she went to the emergency room barely able to speak or swallow.
“It’s just been a revolving door of stuff,” Williams-Crosby said.
Williams-Crosby doesn’t know what’s wrong. She only knows that it all started in November when she came down with COVID-19.
Williams-Crosby, who is Black, may be part of a silent epidemic of “long COVID” among people of color and others hardest hit by the pandemic.
A little-understood syndrome of symptoms that linger for months after the initial sickness, long COVID is estimated to affect 10 percent to 30 percent of people who catch the virus. Dozens of clinics treating what they call PASC, for Post-Acute Sequelae of SARS CoV-2, have sprung up around the country to treat people suffering with long COVID’s puzzling effects, which include extreme fatigue, brain fog, difficulty breathing, and heart palpitations.
But these clinics say they’re seeing mostly middle-class white women, not the poor people and people of color who bore a disproportionate share of COVID-19.
“We know certain communities are hit harder by COVID — marginalized communities … Black, Hispanic, Native American,” said Dr. Monica Verduzco-Gutierrez, a San Antonio rehabilitation physician leading a national effort to promote equity in long COVID care. “This is not what a lot of the [long COVID] clinics are seeing for sure.”
The reasons for the apparent disparity are similar to those that led to the high COVID-19 rates in disadvantaged communities, said Dr. Cassandra M. Pierre, an infectious diseases physician at Boston Medical Center: lack of sick pay and long working hours leave little time to seek care, and many don’t have primary care doctors and don’t even know where to turn for help.
Many poor and disadvantaged people have other health conditions that started long before COVID-19, and their symptoms may be blamed on those preexisting illnesses, Pierre said. If someone already suffered from asthma, for example, breathing difficulties may be seen as “more of the same,” Pierre said. “They feel like this is normal, this is what people experience.”
When Williams-Crosby went to the emergency room in December with her painfully tightening throat, doctors ruled out strep and flu and gave her steroids for her symptoms. But no one, including Williams-Crosby herself, connected the dots to her COVID-19 infection.
As community engagement director for a Roxbury social service agency, Williams-Crosby can work at her Norwood home most of the time, and her employer has accommodated her need to rest. Many others are not so lucky, and the inability to get off from work is another obstacle to diagnosing and treating long COVID.
Subtle prejudice also can play a role when the chief symptom is severe fatigue, noted Linda Sprague Martinez, an associate professor at the Boston University School of Social Work, who is gathering information from Black and Latino communities on how they’re experiencing the aftermath of COVID-19.
“There are populations we are very quick to judge,” Sprague Martinez said. When a Black person, or a Latino person, or a poor person speaks of fatigue, they are often dismissed as lazy, she said.
Many people may be unable to distinguish long COVID symptoms from everything else they’re dealing with, including trauma from the pandemic, said Frederica Williams, chief executive of the Whittier Street Health Care Center in Roxbury. “If you are overwhelmed with so many issues, people may not even notice that this neurological deficit and the brain fog is happening, because you’re dealing with the trauma,” Williams said.
Data is lacking on how many people — and which groups of people — get long COVID. But what little is known points to the likelihood of inequities.
It’s well-documented that Black and Latino people, and people living in crowded housing or poorer neighborhoods, have been more likely to come down with COVID-19. Even before the pandemic, Black people who suffered injuries or strokes were less likely to receive physical rehabilitation services. From this information, Verduzco-Gutierrez said, one can extrapolate that it’s likely many people with long COVID are being overlooked.
At Boston Medical Center’s long COVID clinic, about half the patients are Black — but based on the COVID-19 patients that the hospital treated, Pierre said she would expect them to make up 70 to 80 percent.
Dr. Jason H. Maley, director of Beth Israel Medical Center’s Critical Illness and COVID-19 Survivorship Program, estimates that about 60 to 65 percent of the clinic’s last 300 patients were white. Only about 8 to 10 percent were Hispanic, compared with 30 to 40 percent of those who came to the hospital with severe COVID-19, Maley said.
The University of Washington’s Post-COVID-19 Rehabilitation and Recovery clinic, in Seattle, is one of the few to gather detailed demographic data. Among patients seen over the past six months, 96 percent speak English as their primary language, even though one-quarter of the population in the county the hospital serves is foreign-born; 83 percent of patients are white, compared with 66 percent of the county’s population.
The Seattle hospital also found that 69 percent of the clinic’s patients are between the ages of 30 and 60, and 75 percent are women, said Dr. Janna L. Friedly, who heads the clinic.
There may be biological explanations for the preponderance of women and people between the ages of 30 and 60. Some long COVID symptoms are thought to be caused by an overreaction of the immune system. Both women and people in midlife tend to be more susceptible to such problems, Verduzco-Gutierrez said. But that’s just a theory.
And there is no biological reason for the racial and ethnic disparities.
Verduzco-Gutierrez, who heads a post-COVID recovery clinic at the University of Texas Health Science Center at San Antonio, is leading an effort to ensure that equity concerns are incorporated into the guidance on long COVID treatment that the American Academy of Physical Medicine and Rehabilitation is developing.
A key aspect has to be raising awareness in the affected communities, so people recognize their symptoms may be due to long COVID, Verduzco-Gutierrez said. That will require going into the affected communities, similar to the vaccination efforts carried out by community groups.
“It has to be in communities,” agreed Dr. Nahid Bhadelia, a Boston University infectious diseases specialist who is leading the long COVID research effort by the Massachusetts Consortium on Pathogen Readiness. “People need to hear it from people they trust.”
Reaching out to vulnerable communities will be a key focus for the six Boston-area hospitals participating in a national study seeking to better understand long COVID. The hospitals, led by Brigham and Women’s, on Monday announced their participation in the National Institutes of Health’s RECOVER study that will enroll about 900 participants in the Boston area. The study leaders are setting up partnerships with local groups to engage people in the communities hardest hit by COVID-19.
But even if more people recognize long COVID and seek care, they will face many obstacles in a health system ill-equipped to manage complex, chronic conditions.
Dr. Julie Silver, a physical medicine specialist at Mass General Brigham and Harvard Medical School, noted that “exponentially” more people have been disabled by COVID-19 than have died from it. COVID-19 is probably the largest “mass disabling event” since the polio epidemic, she said.
Maley’s long COVID clinic at Beth Israel is currently treating about 600 patients and has a monthslong waiting list. “There’s not enough capacity anywhere in the health system,” he said.