In communities of color, long-covid patients are tired of being sick and neglected

A mild COVID infection at the start of the pandemic has thrown Jeanine Hays’s immune system out of whack, she said, as her husband ticked off ailments the way drug commercials list side effects.

Chronic hives. Hair loss. Tinnitus. Severe nerve pain. Extreme fluctuations in blood pressure. Allergic reactions to synthetic fabrics and processed foods.

In every room of their house, the couple keep an air purifier and EpiPen, both things they travel with, too. And Hays always carries an extra set of clothes just in case what she’s wearing becomes unbearably itchy. “I definitely still feel like a toddler in that way,” she said.

“Bryan and I are learning to live with long COVID,” the 45-year-old said of her high school sweetheart turned husband. “Our way of life is much different.”

It has been four years since COVID began burdening people with lingering symptoms often dismissed by mystified medical providers who were dubious and unwilling to help — especially when treating patients of color, according to clinicians and public health researchers.

For patients of color, it is an all-too-familiar — and maddening — story.

Health-care experts and medical studies have found that racist myths about Black people having higher pain tolerance, coupled with physicians’ biases, mean Black patients are more likely to be seen as drug-seeking and described negatively in electronic medical records. That is true when it comes to routine diagnoses, and clinicians and public health researchers believe the same to be true with long COVID, even as its definition remains very much a work in progress.

It’s bad enough patients of color are coping with a debilitating illness, they said. It’s all the more devastating, they said, to feel like they’re being erased — from medical records, public imagination and policy considerations. Researchers say that in many cases, people are not even being formally diagnosed, meaning they’re suffering and not getting help.

Estimates of long COVID’s prevalence vary widely. A recent report from the Centers for Disease Control and Prevention showed about 1 in 14 adults said in 2022 that they had ever experienced long COVID.

While the coronavirus wreaked havoc on communities of color — especially at the dawn of the pandemic — research has suggested that the misery of long COVID is more equally visited upon various communities. A 2023 analysis of nearly 5 million U.S. patients by The Washington Post and research partners found virtually no difference among the percentages of Black, White and Latino patients who sought medical care for symptoms associated with long COVID within several months of being infected.

But public health experts caution that those numbers almost certainly don’t tell the full story. The data, they warned, may say as much about who is believed by their provider, who can doctor-shop until they are taken seriously and who has the language to describe their symptoms to medical personnel.

“People had all these things happening in their body, but they hadn’t heard the term ‘long COVID’ from a provider,” said Linda Sprague Martinez, a professor and health equity researcher who has studied the impact of long COVID on Black and Latino communities in Massachusetts.

As part of her research, Sprague Martinez’s team conducted 11 focus groups last year: two in English and nine total in Spanish, Portuguese, Haitian Creole and Cape Verdean Creole. In the focus groups not conducted in English, she said, they found that most people had not heard of long COVID before that day. The main culprit, she said: a lack of medical information in languages other than English, and language barriers at health-care facilities and online.

“They were going to the doctor and sometimes weren’t being taken seriously,” she said, adding that some people were told to get on with their lives but not given help to do so. “You need a doctor who believes you, who thinks you’re not just being lazy,” she said. Even if a provider who wants to help can be found, patients might lack the money or time off to receive a specialist’s care.

Sprague Martinez said data at the time found that most patients seeking care at long-COVID clinics and recovery centers in Massachusetts were White people who spoke English, had private insurance and were from out of state.

“Who gets diagnosed with long COVID, it’s socially and economically skewed,” said Sprague Martinez, who now runs the Health Disparities Institute at UConn Health in Connecticut. “If we are only engaging White, middle-class, English-speaking America in treatment, we don’t yet understand the full impact.”

Jacqui Lindsay, a consultant working with the National Institutes of Health’s RECOVER study on long COVID, said the national research pool continues to inadequately represent Black, Latino, Native American, rural, immigrant, LGBTQ+ and disability communities and that health equity has not been sufficiently addressed.

“It’s just like the early days of COVID. The data infrastructure is not there. A coordinated communication strategy is not there,” said Lindsay, who represents the Boston COVID Recovery Cohort as part of the NIH initiative. “And, as a consequence, the infrastructure for clinical care and support is not there.”

Kanecia Zimmerman, who oversees the RECOVER Clinical Trials Data Coordinating Center at Duke University, said measures have been taken in the research to try to ensure that diverse communities are represented at every level of the research ecosystem.

Zimmerman, a pediatrician and internist who began working with the federal initiative in 2022, said sites in communities of color with a diverse workforce were identified to help enlist clinical trial participants. She said researchers created bilingual recruitment materials, including outreach videos, in English and Spanish, and made sure study participants were paid at research sites so they were compensated as fast as possible.

“We’re not where we want to be,” Zimmerman said. “We should be trying to reach rates of enrollment within the Black community and within the Hispanic community that are consonant with COVID rates. We have not reached those targets.”

For Hays and her husband, Bryan Mason, their journey began in March 2020 when they got COVID about the same time. Back then, Mason was the sicker of the two. His lungs filled with so much fluid that one “was pushing the other one out of alignment,” he said. Meanwhile, his wife thought she had just a stomach bug.

Her husband recovered, but Hays started developing what she called “very strange symptoms.” When she stepped out of the shower and onto the tile floor, “it felt like my feet were on fire,” she said.

She started breaking out in hives. Then came the anaphylactic reactions to foods she’d eaten most of her life, and difficulty breathing the air inside their prewar Brooklyn apartment. Eventually, they were forced to move.

Then, at the end of 2020, things took a turn for the worse. She developed sores in her throat and on her tongue and lost the ability to eat and speak. “There’s still parts that are missing for me because of brain fog,” she said.

Mason was calling doctor after doctor, becoming an amateur medical researcher and patient-care coordinator. Hays was able to get an appointment with a notable allergist, but that ray of hope was dashed. The doctor wouldn’t let Mason accompany his wife to the appointment, so she went alone with notes he’d jotted down because “I had a lot of holes in terms of things I remembered,” she said.

Then, the doctor, a White woman, insisted Hays had herpes.

“I was like, ‘Wait. What?’” she recalled, wondering if “maybe she’s doing some study on Black women with herpes.”

Not that it mattered, she said, because “clearly she wasn’t caring at all about what was going on with me. She just kept going, ‘No, I really think that you have herpes. Take Benadryl. You’ll be fine.’” The doctor, however, never tested her for the viral illness, Hays said, adding that “I was in tears.”

It wasn’t until she began to receive care — and a long-COVID diagnosis — at the Center for Post-COVID Care at Mount Sinai in New York in March 2021 that things began to turn around, Hays said. The couple’s ordeal exemplifies the unpredictable nature of the damage the coronavirus can cause, with some people getting very sick while others show no symptoms at all. Now, Hays is able to walk again. Physical therapy keeps at bay the immobilizing feeling of “bees inside your body buzzing all the time,” she said.

It can be difficult to determine just how many people in the United States have long COVID — a wide-ranging constellation of symptoms that can persist for months or years — as it remains an underdiagnosed condition that researchers and clinicians still struggle to understand.

New or worsening symptoms lasting two to three months tend to be “the magic number” when determining if someone has long COVID, said Daniel Lewis, a California internist who founded and leads the Black Physicians Council of Providence Facey Medical Group, which provides care to the Santa Clarita, San Fernando and Simi valleys in California.

A 2023 study showed that more than 65 million people worldwide — at least 15 million of them working-age Americans — had endured long COVID. Most were 36 to 50 years old, and most experienced only mild COVID cases that didn’t require hospitalization.

For millions of patients of color, the pandemic was a mass disabling event — a fact many felt was widely ignored by policymakers, employers and society writ large. Long-COVID sufferers say their pain has been dismissed. Their experiences downplayed. Their isolation intensified.

Chimére Sweeney said she was sure that’s what her medical records reflected after a two-year odyssey that started with the fight to have her initial coronavirus infection noted in her records, a battle she repeated with long COVID.

The former Baltimore middle school teacher said she was told in March 2020 that her symptoms — sore throat, stuffy nose, headache, back pain — couldn’t be COVID because she didn’t have a fever, cough or shortness of breath.

“I wasn’t tested,” she recalled. “I was told, ‘Oh, it’s a sinus infection.’”

And that’s how it went during repeated trips to the doctor and emergency room, with providers insisting she didn’t have COVID even as they told her to quarantine for 14 days just in case. When she insisted that something was wrong, Sweeney said, she was told that “you’re just anxious because you can’t teach” or that “I needed a psychiatric evaluation.”

Meanwhile, she said, her symptoms worsened, leaving her unable to drive, barely able to see and 30 pounds lighter. Things improved, she said, only when she started emailing community leaders begging for help and hired a patient advocate.

Her long-COVID diagnosis arrived in April 2022, she said.

“I cried that day because I was like, ‘Thank you, God!’” she said. “Having that diagnosis got the ball rolling on everything else for me — Social Security, this retirement. Because I was poor. I went from making $65,000 to nothing.”

The 41-year-old said she has not stepped back into the classroom because extreme fatigue, brain fog and migraines persist. Because she’d invested five years in the public school system, Sweeney said, she was able to retire with full benefits, including long-term disability.

This comes as researchers with the Urban Institute have found that about 40% of adults with long COVID don’t have enough to eat and about a quarter struggle to pay rent and utilities.

For those patients — insured or not — who find themselves in front of neurologist Joey R. Gee, there’s one treatment that’s more compassionate than clinical. And that, he said, is “to validate how they feel.”

Gee, who works at Providence Mission Hospital in Orange County, Calif., said he sees a common denominator in the experiences of patients of color seeking pain management and treatment for long COVID: “A huge disparity in treatment. The most common symptoms … whether it be pain, fatigue, brain fog or pulmonary symptoms were not really looked at seriously.”

Instead, he said, referring doctors tend to take a wait-and-see approach, which can be “very invalidating.”

Gee experienced debilitating, long-term effects from multiple coronavirus infections. His vocal cords hemorrhaged after his first infection, leaving him unable to speak for four months.

Researchers and clinicians have found that COVID can turn once-manageable conditions into debilitating ailments, he said. Compounding the problem, he added, are insurers “who don’t really feel it’s a real condition to handle. That is a huge barrier.”

Gabriel San Emeterio knows all too well what it’s like trying to battle insurers to cover the cost of care for debilitating illnesses. For years, San Emeterio was a Medicaid recipient who received treatment at a clinic dedicated to helping low-income patients with HIV.

“It’s not bad in terms of HIV,” San Emeterio said about care provided at the clinic. But that was not necessarily the case for San Emeterio’s other conditions — chronic fatigue, psoriatic arthritis, fibromyalgia and Lyme disease — which San Emeterio now believes include long COVID.

The 43-year-old, who now has employer-based insurance but continues with the same doctors at the clinic, avoided a coronavirus infection until summer 2022. Nearly a year later, San Emeterio still hadn’t returned to baseline and started experiencing new symptoms. Light sensitivity. Dizziness when scrolling webpages. Daily headaches. Intense pain. Brain fog.

So San Emeterio went to the doctor, who “tells me I’m prediabetic. So I was like, ‘Could it be long COVID? I’m still struggling, and my health is not the same.’”

The concern was casually dismissed, San Emeterio recalled, adding that the doctor said, “Well, you already had a lot going on before you got COVID, so do we really need to put long COVID” in your electronic medical records?

San Emeterio said it remains unclear whether the medical records reflect a diagnosis of long COVID even after a second bout of COVID in December. This time, at least, the doctor offered up “a long list of specialists” — even if it wasn’t accompanied with a formal diagnosis.

Angela Meriquez Vázquez said she pays out of pocket for most of the medicines she needs because of long COVID. Vázquez said she’s allergic to changes in temperature and air pressure, most foods and the preservatives in manufactured medicine, which is why she has hers specially compounded.

The sun, she said, gives her a rash that feels “like someone lit a match under my skin.” So, she receives a four-hour IV infusion of Benadryl weekly, she said, “just so my immune system doesn’t freak out.”

Vázquez got COVID early in the pandemic when tests were hard to come by and people were discouraged from seeking care unless critical. “It was wild,” she said. “I would forget what people were saying as they were saying it.”

It was also a time, said the 36-year-old from Los Angeles, when she experienced discrimination like never before. In the days after her COVID infection waned, new symptoms materialized. She was dizzy, short of breath and suffering from heart palpitations.

She went to the emergency room several times, only to be scolded for taking resources from “people who are really sick,” she recalled, adding that providers were more focused on her confusion and inability to communicate than complaints “that my feet are swollen purple and warm.”

“I was asked by a nurse if I needed an interpreter,” said Vázquez, who identifies as Chicana. “I don’t speak with an accent. Eventually, I spent the night in the hospital for what was later diagnosed to be a series of ministrokes.”

Now, she has a “life-or-death fear of the medical system” and worries that physicians have found a new reason to dismiss her concerns — her medical diagnosis of long COVID.