A sharp tingle shoots through Terrell Harris’ leg. He pops a pill for the pain, but his nerves will act up again when the medicine wears off.
His legs are so weak and unpredictable he uses a walker to get around. At least, after weeks of physical therapy and medication, he’s now able to make it up stairs.
Before the pandemic, the 26-year-old Flint, Michigan, resident thought it would be decades before pill organizers, walkers and neuropathy became everyday life. But COVID-19 changed that.
“My breathing still isn’t 100% yet,” Harris said.
Harris is one of an ever-growing population of COVID-19 survivors who, months later, are still living with the aftermath of their infections. Some have lingering lung damage or must rebuild muscles that became weak after they spent weeks on a ventilator. Others were not even hospitalized, yet still struggle with fatigue, heart palpitations, brain fog or other lingering symptoms.
Harris is also Black, a member of a community that in Flint and across the country has been hit especially hard by the coronavirus, thanks to a long list of pre-existing conditions: poverty, lack of health insurance, reliance on “essential” service jobs that can’t be done remotely. Black Americans have been more likely than whites to test positive for COVID-19, data from the Centers for Disease Control and Prevention show, almost four times as likely to be hospitalized, and nearly three times as likely to die of the disease.
Those disparities make way for a scary possibility, one that researchers are just beginning to study: that the communities already most battered by virus deaths and illness will also struggle the most with life-altering, long-term health effects from COVID-19. The pandemic could make the nation’s most vulnerable people even more vulnerable. And that could have ramifications for years.
For Harris, those ramifications started in April, when he was admitted to Flint’s McLaren hospital, unable to breathe.
Long recoveries for COVID patients
Harris was working at a group home and said he believes he contracted the virus from one of his bosses.
When his mother, Tanea Harris, first learned her son had COVID-19, she was too devastated to process the news. But then reality hit.
“I didn’t believe it. But once I seen how bad he was doing in the hospital, I was like, ‘Oh, this is really real,’” she said.
After he was hospitalized, doctors diagnosed him with COVID-19 and gave him oxygen. It wasn’t enough, so they put him on a ventilator. He was in an induced coma for 34 days. When he finally woke up, he couldn’t move or talk because the trach tube had damaged his throat.
“They gave me a 1% chance of living,” Harris said, adding that doctors didn’t tell him that until after he recovered.
Tanea wasn’t allowed to see her son for months. But while Harris was comatose, nurses held their phones near him, on speakerphone, and allowed Tanea to talk to him. Those conversations, although one-way, gave Tanea hope that she’d see him again.
Doctors have known for years that the ICU is not the end of the journey for patients who survive ventilator treatment. “Post-intensive care Syndrome” can include muscle weakness, brain dysfunction, nightmares and insomnia. It can take critical care patients a year to recover fully, according to the Society of Critical Care Medicine.
“Some of the people who recover are going to require medical care for things which have arisen from the pandemic for years. Indefinitely,” said William Hanage, a Harvard epidemiologist. “The pandemic is not just killing a lot of people. It’s going to have long-term health consequences going decades into the future.”
Fewer coronavirus patients now are ventilated than early in the pandemic, when about 5% ended up in intensive care, many of them on ventilators. But even as treatments have improved, cases have surged, and the total number of patients navigating post-ventilator recovery continues to grow. Ventilators, which essentially breathe for patients whose lungs are drowning in wreckage caused by the virus, can save lives, but come with a long list of potential downsides, such as vocal cord injury or long-term muscle weakness.
In addition to those who survived severe COVID-19, a growing number of people, known as “long-haulers,” are reporting long-term symptoms even though their initial brush with the virus was mild. Doctors have created specialty clinics, such as the Center for Post-COVID Care at New York’s Mount Sinai Health System, to treat these patients, many of whom are finding each other and offering support via Facebook groups. Their symptoms vary widely: One July survey of more than 1,500 coronavirus survivors reported everything from dizziness to dry eyes. The Centers for Disease Control and Prevention this autumn listed fatigue, shortness of breath, cough, joint pain and chest pain as the most common long-term symptoms of COVID-19.
It’s not clear how many coronavirus patients go on to be long-haulers. One early study found that out of 150 patients who showed up to a hospital for treatment for COVID-19 but did not need critical care, two-thirds were experiencing symptoms — such as loss of smell, difficulty breathing or lack of energy — two months after they first became ill. A British study found that 10% of coronavirus patients had long-term symptoms. A CDC survey found that 35% of coronavirus patients who showed symptoms had not fully recovered two or more weeks after being tested.
There’s much research left to do. At a seminar in December hosted by the National Institutes of Health, scientists underscored the need for more studies of the “long COVID” phenomenon. It’s been a common refrain for months.
“We know almost nothing about any of this,” David Tuller, a senior fellow in public health and journalism at the University of California-Berkeley Center for Global Public Health, said in the fall. “There’s just so many issues that will need to be worked out in ongoing research.”
One thing researchers do know from studying people who have suffered from other post-viral syndromes: Such conditions can come with profound tolls, such as jobs lost, friendships frayed, anxiety and depression piled on top of chronic illness.
“People with chronic illness and disability have been talking about these issues for years,” said Fiona Lowenstein, founder of Body Politic, a queer feminist support group for long-haulers, on a webinar in September. “Those people typically just get left behind and forgotten.”
But what happens when those suffering from long-term COVID-19 symptoms were already among the most vulnerable in society?
Black and Hispanic people in the U.S. are more likely to work in food service and other essential jobs, live in crowded neighborhoods or multi-generational homes and lack health insurance. They are therefore, experts say, also more likely to be infected and hospitalized with the coronavirus. They’re also more likely than whites to have underlying conditions that can make COVID worse, such as hypertension or diabetes.
As a result, they’ve borne the heaviest health burdens of the pandemic. And Flint, famous for its water crisis, is no stranger to racial health disparities. In the county home to Flint, Black people have accounted for 30% of the 665 COVID-19 deaths, yet make up just 20% the total population, according to data from the Genesee County Health Department and the U.S. Census Bureau. The disparities are similar across the nation.
But racial data for those suffering long-term symptoms is still incredibly difficult to find. That’s partly because scientists and researchers are still responding to the emergency at hand.
“There are plenty of important questions related to health equity and COVID-19 that we’re not asking and answering, at least not yet,” said Dr. Consuelo Wilkins, vice president for health equity at Vanderbilt University Medical Center. “We’re not focusing on the social determinants of health. We’re just doing the traditional clinical research.”
There’s no reason America shouldn’t also expect to see a disproportionate number of Black and Hispanic people struggling to recover from COVID-19, experts said.
“We have seen such stark inequities in the headline figure, which is deaths. It would be completely unsurprising and expected that you would see these long-term consequences were concentrated within those groups as well,” Hanage said.
Yet there is one harrowing possibility for why racial disparities may not show up in long-term COVID sufferers: Black and brown COVID patients were more likely to die than whites. They may not be around to report brain fog because they didn’t make it out of the hospital.
“There’s really no reason to think that the disparities wouldn’t continue into long-term symptoms except for the awful thought that we lost disproportionate numbers” of high-risk patients, said Dr. Mady Hornig, an epidemiologist at Columbia University who is studying how many COVID-19 patients wind up with chronic fatigue. “It’s a horrible scenario, a chilling scenario to consider.”
Exactly how many people of color are suffering from long-term coronavirus symptoms may remain a mystery forever, experts say, since doctors are more likely to dismiss their concerns. Studies have shown that Black people were already more likely to be disbelieved by doctors regarding pain and are underdiagnosed for sicknesses like chronic fatigue syndrome.
“Medical gaslighting is not new,” Lowenstein said. “This disease is disproportionately impacting communities of color, and we need to be telling those stories.”
Many people of color also may not join the vocal cohort publicly discussing their symptoms. Those struggling with the economic fallout of the pandemic may not have the time and luxury to join online groups to discuss their lingering illness, nor to seek treatment from specialty clinics like Mt. Sinai’s.
Even if they are believed by doctors and correctly diagnosed, Black patients suffering from long-term effects of COVID-19 are more likely to face challenges in getting medical treatment. Black Americans are more likely to be uninsured or underinsured.
In Flint, 63-year-old Valerie Jackson spent 10 days in the hospital with COVID-19 in May; during that time her employer placed her on furlough. After 30 days, when she was still too weak to return to work, they let her go, leaving her without health insurance as she recovered.
“I freaked out,” she said. “I was diagnosed with COVID and now you’re telling me I got no job and I got no health insurance?”
Extending her insurance via COBRA was too expensive, Jackson said. One Flint-area pulmonologist kindly offered not to charge her for appointments when she told him she didn’t have insurance, she said.
But most uninsured COVID-19 survivors aren’t likely to be so lucky.
“My concern is that Black Americans who have been infected and have long-term symptoms will have difficulty accessing care or have difficulty accessing the resources they need to go about their daily activities,” said Dr. Uché Blackstock, founder of Advancing Health Equity, an organization that works with health care providers to improve racial health disparities. “They’re at a disadvantage.”
The way forward
Public health workers need to get the word out to minority communities about possible long-term symptoms of the coronavirus and how to get help for them, Blackstock said. And doctors need to be trained to know what long-term COVID-19 symptoms look like and how to mitigate their own bias when diagnosing it, she said.
But before they can pinpoint a strategy for public health, experts said they will need to get a better understanding of the size and shape of the problem.
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In Michigan, researchers are already working to learn more about both coronavirus survivors and the pandemic’s racial disparities. The Genesee County Health Department is hoping to further refine its data tracking methods to capture COVID cases by race for the City of Flint. And Michigan State University researchers are planning a study of survivors, as well as a closer look at the racial disparities in the state’s deaths, said Debra Furr-Holden, a Michigan State University professor who has spent most of her career researching racial disparities in health care and serves on a state advisory team charged with studying racial inequality in the pandemic.
While scientists study survivorship, Harris is figuring it out day by day. His week consists of doctors appointments: speech therapy on Monday, physical therapy on Tuesday and occupational therapy every other Friday. In between, he rests to gather his strength for the next office visit. He is relearning how to do simple things like walk and use his hands.
“I really don’t take anything for granted now,” Harris said.