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

[ahimsa]

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

Regular link: https://www.washingtonpost.com/health/2024/05/28/long-covid-patients-of-color-black-latino/

Gift link (no paywall for 2 weeks): https://wapo.st/3wSGcYO

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.

Further down in the article there's a quote from Chimére Sweeney, a name some folks may recognize from her volunteer work with #MEAction. I think she was a speaker at one of the Millions Missing demonstrations? Anyway, here's a link to one interview that I found:
https://casw.org/news/patient-advoc...sent-more-diverse-perspectives-on-long-covid/

I want to add a note to say that probably almost everyone who gets Long Covid or ME/CFS, regardless of race/sex, has a hard time finding a doctor, getting a diagnosis, and finding any treatment that even partly helps the symptoms.

This article is about how, statistically, there's an extra degree of difficulty for certain groups. And it tells the stories for a few individuals who are in those groups.

When studies find racism or sexism in the health care system it does not mean that white or male individuals have no problems getting health care.

 

[Andy]

This article is about how, statistically, there's an extra degree of difficulty for certain groups. And it tells the stories for a few individuals who are in those groups.

Yep. Work being done here in the UK has shown that as well.

"White individuals were approximately 5-fold more likely to be diagnosed with ME/CFS than others; black, Asian or Chinese ethnicities are associated with particularly low rates of ME/CFS diagnoses. This ethnicity bias is stronger than for other common diseases."

Unequal access to diagnosis of myalgic encephalomyelitis in England, 2024, Ponting and Samms

 

[Andy]

Also see People from ethnic minorities seeking help for Long Covid: a qualitative study 2024 Smyth, Chew-Graham et al