Long-covid patients of color are tired of being sick and neglected

In communities of color, long-covid patients are tired of being sick and neglected It has been four years since coronavirus infections began burdening people with lingering symptoms often dismissed by medical providers. Akilah Johnson The Washington Post

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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.

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.

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.”

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