People of Color with Long COVID Face Uphill Battle to Be Heard

People of Color with Long COVID Face Uphill Battle to Be Heard

In March 2020, when Los Angeles residents began sheltering in place amid the COVID pandemic, Angela Vazquez and her husband went out shopping for some essentials. A few days later they both experienced mild COVID symptoms: low-grade fever, upset stomach, fatigue, headaches, chills, loss of sense of smell–nothing serious enough for a doctor to order confirmation tests, which were being rationed at the time.

But Vazquez’s condition deteriorated over the following weeks and months. She experienced what she described as stroke-like symptoms. She was unable to walk or maintain her balance.

“I visited the ER several times in one week and was told each time that it was impossible for COVID symptoms to last this long,” says Vazquez, now age 35. She also said that she was once discharged for “shortness in breath.”

The sequelae (or the long-lasting effects) of a temporary COVID-causing viral infection SARS-CoV-2 can last for months –a condition now long COVID Nearly every organ system can be affected by the debilitating symptoms. Its pathology often includes cognitive impairment (“brain fog”) and relentless fatigue that worsens after even minor physical or mental exertion.

Having a debilitating condition which is still a mystery to medical science can be a nightmare for anyone. Vazquez claims that her youth, gender, and ethnicity made convincing doctors that her symptoms were real difficult. “I was seeing mostly white male doctors, and a young Latina presented to the emergency department made it very easy for them to psychopathologize me and dismiss me,” she said.

Today Vazquez is president of Body Politic, an organization that advocates for people with long COVID and offers them an online support group. Vazquez said that many of these people have similar stories of dealing with a confusing new condition and navigating an inept bureaucracy as a person from color. She calls the spread of COVID- a “mass disablement” event. And “we absolutely know that COVID-19 has disproportionately impacted communities of color and immigrant communities,” she says. “But they aren’t showing up in our primary care clinics for a variety reasons, such as systemic low access to health care .

Ashley Jackson is a California-based actress and screenwriter who recounts a similar experience. She says she caught what was likely COVID in January 2020 (before testing was available) and that her doctors told her she should be fine after two weeks. But her symptoms never left.

“By the eighth week, I was like, ‘Something is wrong,'” says Jackson, who is now 23 years old. She eventually caught COVID again in April 2020, this time confirmed by a test, and for a short while lost her ability to breathe easily. Jackson claims that her doctors dismissed her concerns again. “They’re like, You should be fine. They’re like, ‘You shouldn’t be worried after about two weeks. She adds, “You’re testing negative now.” “And I basically just never recovered.”

Jackson, who was diagnosed with COVID for the third time earlier in the year, says she has suffered from constant headaches that have turned into migraines. She also experiences shortness of breath and an increased heart rate. And she has since developed fibromyalgia and Graves’ disease, an autoimmune condition that causes hyperthyroidism. She says, “From beginning to ending, my body is just in shambles.” “Mind you, prior to all of this, I was 100 percent healthy.”

Angela Vzquez during an IV treatment related to long COVID.
Angela Vazquez during an IV treatment related to long COVID. Credit: Angela Meriquez Vazquez

Jackson joined Body Politic after she said that it helped her understand her feelings and kept her going. She now says that she is being treated at UCLA Health Long COVID Program Los Angeles. However, it took her a long while and a lot effort to find doctors who understood her condition. “I believe that being a Black woman in any medical space still leads to historic gaslighting. Jackson says that medical spaces often dismiss our pain.

Samantha Artiga, vice president and director of the Racial Equity and Health Policy Program at Kaiser Family Foundation, co-authored a report earlier this year noting how people of color have borne the overall brunt of the pandemic in multiple ways, such as being at higher risk for infection, illness and death. How that translates to long COVID outcomes is not entirely clear, but many think the answer will further demonstrate yet another racial disparity among many in American health care–one that has received relatively little attention.

” There isn’t enough data to know who’s affected and how,” Artiga states. Data on about 88 million cases collected by the U.S. Centers for Disease Control and Prevention only included race or ethnicity data 65 percent of the time. A 2021 review of studies characterizing long COVID found that just six out of 39 studies, or 15 percent, included ethnicity data.

” To the extent that people are suffering from long COVID, people who are of color will face the same inequalities in accessing health care, as well as potential treatments for long COVID. Artiga agrees. It can be difficult to determine who to contact to help you, and how.

The CDC estimates that one in 13 American adults now has long COVID, defined as symptoms lasting longer than three months after one first contracted SARS-CoV-2. Citing data from the Household Pulse Survey, which the Census Bureau began collecting in collaboration with the National Center for Health Statistics and several other federal agencies in April 2020, the CDC says that between late July and early August, 9.2 percent of Hispanic or Latino adults reported they currently had long COVID, while 7.4 percent of white adults and 5.4 percent of Black adults did so. Asian adults accounted for 4.6 percent.

Unfortunately, these are the only data currently available in this area and don’t give much insight into who is receiving adequate or appropriate COVID treatment. Officials may be finally acknowledging the problem, though some steps remain tentative. On April 5 President Joe Biden issued a “Memorandum on Addressing the Long-Term Effects of COVID-19” as part of the White House’s “efforts to prevent, detect, and treat” long COVID. In it, he pledged to “advance our understanding of the health and socioeconomic burdens on individuals affected by long COVID, including among different race and ethnicity groups.”

More recently the administration released two Department of Health and Human Services reports on long COVID–one that details services and support for treating the condition and another that outlines strategies for conducting research. While the reports touch on the subject, they do not go into detail about racial disparities, or provide specifics on how to address them.

“While racial disparities in Long COVID are relatively unexplored, it is well understood that some racial and ethnic minority communities are disproportionately impacted by COVID-19,” states one of the reports, The National Research Action Plan on Long COVID.Both reports were released in early August.

In December 2020, Congress provided the National Institutes of Health with $1. 15 billion over four years to study long COVID. The project, called RECOVER (Researching COVID to Enhance Recovery), launched in February 2021. It involves “more than 100 researchers who are leading studies on Long COVID at more than 200 places around the country,” according to its website.

So far RECOVER has recruited around 8,600 adults with prior COVID infection–a number somewhat lower than the program’s stated goal of enrolling 17,680 long COVID patients. Demographic background material provided by Catherine Freeland, RECOVER’S communications and engagement program director, reported that study participants are 16 percent Black, 7 percent Asian, 3 percent Native American or Alaska Native, 15 percent Hispanic, 0.5 percent Native Hawaiian or other Pacific Islander and 63 percent white.

There is little information about patients receiving treatment, and there is not much data on long COVID patients. Artiga states that “we know that people of color have a lower likelihood of having health insurance coverage which can lead to increased barriers to accessing healthcare.” “There is also really limited data available to date in terms of how COVID-19 treatments are being distributed and who’s receiving them.”

A study published in July poured through more than 400,000 lab-confirmed COVID cases in a database of more than 50 U.S. health care organizations assembled by TriNetX, a privately run network of such organizations around the world. The researchers identified 8,724 cases where people sought outpatient rehabilitation, which many experts recommend to help treat long COVID.

Despite accounting for severity of symptoms, sex, and comorbidities the study found that Black patients were more likely to seek outpatient rehabilitation than other races. “Racial differences in outpatient rehabilitation use and potentially unmet needs during recovery may further exacerbate the disproportionate harm COVID-19 has wrought on African American/Black individuals and communities in the United States,” the study authors wrote.

“Sometimes not seeing a group of people in your clinic might be a disparity,” says Giv Heidari-Bateni, a cardiologist who works at Loma Linda University Health’s COVID-19 Heart Clinic. Heidari-Bateni claims that he has seen more Hispanic patients than white patients, but far fewer Black patients. Heidari Bateni wonders if this means that they are more likely to have this happen, or if they don’t come to my clinic they have less access. It’s hard for him to answer without additional data. He also points out that there may be a role for lack of public information in potential disparities.

“Long CoVID is still a relatively new term and many of my patients aren’t familiar with it,” Heidari Bateni explains. “People might experience [heart] palpitations. These people may not be aware that the COVID they have just acquired can cause palpitations. Now the question is: “Do we have education freely available and easily accessible for all people?” Probably no .”

The California Department of Public Health (CDPH) has been collecting data on long COVID but has encountered a lack of “studies that adequately examine the impact upon communities of color,” a CDPH spokesperson wrote in an e-mail to Scientific American. “We hope to be in a position to identify differences in how long COVID impacts communities.

The spokesperson also wrote that CDPH has partnered with more than 200 community-based organizations to deliver “key messages in a culturally relevant” manner via ad campaigns, webinars, web pages, social media platforms such as Twitter and Instagram, multilingual handouts–even a WhatsApp chatbot in Spanish and English. When texted about long COVID, that bot returns a link to California’s long COVID information portal, which includes videos in both languages.

I think we still need to do a lot to identify our burden of long-term COVID,” says Jennifer Chevinsky. Jennifer was an Epidemic Intelligence Service officer with the CDC and was the first to recognize long-term COVID as a chronic condition. Using feedback from Body Politic and other long COVID support groups, including Survivor Corps and the Patient-Led Research Collaborative, Chevinsky wrote the CDC’s interim guidance for health care providers evaluating and caring for patients with post-COVID conditions.

Chevinsky, currently a deputy public-health officer at Riverside University Health System Public Health, which serves Riverside County in California. She has been working to prioritise the issue of possible racial disparities in the state’s long COVID response. This has involved tens of thousands of follow-up calls to learn about patient experiences after testing COVID-positive, teaching implicit bias courses to local health care providers and hosting training sessions on long COVID for “promotores“–community health workers serving the Latino population, including migrant and agricultural workers.

” How COVID affects different people from different demographic groups is an area we need to work on. Chevinsky states that we will likely see disparities and can respond accordingly. It is still a fight. We need more resources and more funding. We are working to improve the services we have. There’s still much to be done

This article was produced as a project for the University of Southern California Annenberg Center for Health Journalism‘s 2022 California Fellowship.

ABOUT THE AUTHOR(S)

    Troy Farah is an independent journalist from California who covers science, drug policy, public health, insects, and more f

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