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While long Covid is known to affect millions of Americans, patients and advocates say it has not gained the attention, funding and medical research needed to understand what causes it and treat people affected. With so many people affected, the question is why?

One possible factor: White Americans feared Covid much less early in the pandemic, after they learned that the disease struck communities of color harder than White communities, academic studies found.

Could the same thing be happening with long Covid? Is it not in the spotlight because it affects communities of color more than white communities? And are the “so-what” responses to the current surge in Covid perhaps affected by these same racial factors?

Allison Skinner-Dorkenoo, a University of Georgia psychologist, is one of several scholars who studied topic of racial disparities early in the pandemic. “What we found was that the more people perceived there to be racial disparities, the less fearful they were of COVID-19, and the less they supported safety precautions to prevent the spread,” she told NPR.

A recent study of New York patients by Weill-Cornell investigators documented what many have long thought: Black and Hispanic Americans are more likely than White Americans to have symptoms of long Covid.

The New York study can’t explain why there were differences in risk levels or symptoms among racial and ethnic groups, said one author, Dhruv Khullar. More studies are needed to understand the causes, and to see if similar differences exist in other parts of the country. In the meantime, Dr. Khullar encouraged clinicians to try to mitigate the impact of disparities in long Covid by ensuring equitable access to care and enrolling diverse cohorts of patients in clinical trials.

Patient groups are begging for attention and funding. As many as 10 percent to 30 percent of those who contract Covid still have some symptoms after a month, with varying degrees of severity — and some are still severely disabled, three and a half years later. One issue that complicates diagnosis and treatment is that there are as many as 200 different symptoms — among them brain fog, depression, anxiety, tinnitus, extreme fatigue, muscle and joint aches and pains, gastrointestinal malfunctions, sexual dysfunction, and post-Covid acquisition of a number of other conditions like lupus and diabetes. The science about why long Covid exists is not well developed.

People with long Covid have a hard time finding doctors who understand the condition, and they complain that they are often dismissed by clinicians. Treatment options are not consistent, and patients say studies have not led to successful courses to mitigate the illness. There has also been a consistent thread of Covid denialism since the beginning of the pandemic, including the Great Barrington Declaration by public figures urging a return to “life as normal” in October 2020 — one example of the deep division in American society about Covid and issues like masks, closures, vaccine mandates and so on, and the “it’s just like a cold” dismissal. Or the revisionist history from “Covid contrarians” about the value of school closings early in 2020.

Attitudes differ by race

In a phone interview, Skinner-Dorkenoo said she was motivated to do the initial study about race and Covid by some social media posts and reactions to them: “Can we see a link between these things, that maybe the White population, which also makes up the majority of powerful decision makers and the people who will be able to make policy determinations and things like that? Is it leading to a tendency to minimize and discount and be less concerned about COVID and safety precautions?”

In her study, “Highlighting COVID-19 racial disparities can reduce support for safety precautions among White U.S. residents,” published in spring of 2022, Skinner-Dorkenoo worked with Apoorva Sarmal, Kasheena G. Rogbeer, Chloe J. André, Bhumi Patel and Leah Cha. They wrote:

“U.S. media has extensively covered racial disparities in COVID-19 infections and deaths, which may ironically reduce public concern about COVID-19. … We examined whether perceptions of COVID-19 racial disparities predict White U.S. residents’ attitudes toward COVID-19. … We found that those who perceived COVID-19 racial disparities to be greater reported reduced fear of COVID-19, which predicted reduced support for COVID-19 safety precautions. In Study 2, we manipulated exposure to information about COVID-19 racial disparities (N = 1,505). Reading about the persistent inequalities that produced COVID-19 racial disparities reduced fear of COVID-19, empathy for those vulnerable to COVID-19, and support for safety precautions. These findings suggest that publicizing racial health disparities has the potential to create a vicious cycle wherein raising awareness reduces support for the very policies that could protect public health and reduce disparities.”

I asked her if she thought the same thing might be happening with long Covid. She said “it’s it’s kind of hard to think that that wouldn’t be playing a role here.”

If that’s true, what can be said or done that would make any difference? Should we stop all public health education if it is making this problem worse?

‘Greater recognition of systemic racism’

She said her view, based on new research, is that “educating people about historical issues related to race” can make a difference. Most people have a very shallow understanding of race, she said. Some work in her lab has indicated that giving people a deeper understanding of issues like the history of voter suppression — literacy tests, poll taxes, felony disenfranchisement, and more modern developments like not allowing distribution of water to voters waiting in lines — makes information about voter suppression more meaningful. “When you put it in the context of this whole history and systems of what has happened, then it can look different,” she said.

“In the context of health, things like where did these health disparities come from? What is the history of our healthcare system and the ways in which this is part of a much broader pattern?

“What we’ve found in in doing some of this initial research is that, at least in the short term, we’re seeing that when we educate people about this stuff, they do seem to have a greater recognition. When I say people, we look to people of all races, but our sample was predominantly White. And that resulted in a greater recognition of systemic racism operating within that context, but also greater support for policy reform to address the inequities that exist today.

“With this type of work, which we’re continuing to do, I’m optimistic that that could be a way that maybe if we can fill in some of these gaps in people’s education, and the misinformation about some of the history, and then give them the space and encouragement to really engage with that information and to think about it and integrate it into how they think about things. That that may be a way to move things forward.”

Raising awareness reduces support

Skinner-Dorkenoo and her co-authors concluded in their early study: “Our findings suggest that alerting the public to racial health disparities (such as those observed with COVID-19) has the potential to perpetuate systemic racial inequalities — by reducing White U.S. residents’ concerns about public health issues and support for policies aimed at protecting public health. Political and social power remains concentrated among White U.S. residents; thus, their attitudes toward public health issues have considerable implications for the establishment of public health policy.

“Our findings show that when COVID-19 racial disparities are highlighted, it can decrease White U.S. residents’ willingness to engage in safety precautions themselves and support for policies protecting public health. Thus, publicizing COVID-19 racial disparities could reduce support for the very policies that aim to limit the toll of the pandemic, creating a vicious cycle wherein raising awareness of systemic racial health disparities results in public responses that actually exacerbate these disparities.

“Given these findings, we argue that care should be taken when considering how to talk about racial disparities and that additional research is needed to determine how to productively alert the public to racial health disparities.”

Trials launched but doubts persist

The focus of research and money on long Covid has been discussed by patients and journalists. Stat reported in early August: “More than 2.5 years after the National Institutes of Health received a $1 billion mandate from Congress to study and treat long Covid, the agency has finally launched clinical trials for the often-debilitating condition. But both scientists who study long Covid and patients who have struggled with it say the trials are unlikely to deliver meaningful treatments, suggesting the federal government’s landmark Covid research effort may have been wasted. …

“Congress provided the NIH with $1.15 billion to help patients in December 2020 — and the agency has now spent most of that funding, according to a detailed new budget breakdown shared with MuckRock and STAT, with the majority going towards observational research rather than clinical trials.

“Among the trials announced so far, the NIH’s long Covid initiative, called RECOVER, is studying only a handful of pharmaceutical treatments, along with several behavioral options. These treatments will not address the underlying biological issues of long Covid, say scientists and patient advocates who reviewed the newly public details about the studies.”

Reporting on the NIH moves, The Washington Post quoted Hannah Davis, co-founder of the Patient-Led Collaborative, a group of patients also involved with research, as saying “more than 50 medications are waiting to enter clinical trials, and ‘the patient community is concerned that [NIH] is only trying one or two’ in the trials announced” in late July.

In a major Covid-related funding announcement Aug. 22, the Department of Health and Human Services said it would devote $1.4 billion to vaccines and therapeutics for Covid. But long Covid was conspicuously absent from the funding announcement.

White supremacists in the U.S. and Brazil

Another study of race and Covid attitudes, this one done by a team of scientists from the United States, Germany and Brazil in 2021 and published in 2023, found similar results.

“As COVID-19 began to take hold in the U.S., White supremacists discussed strategies to spread the illness in non-White neighborhoods (Sheth, 2020),” wrote the authors, Chad A. Miller and Clara L. Wilkins of the University of Washington;  Clara de Paula Couto of Friedrich Schiller University Jena, Germany; Jéssica Farias of the University of Brasília, Brazil; and Jaclyn A. Lisnek of the University of Virginia at Charlottesville, in the study, “Anti-Black attitudes predict decreased concern about COVID-19 among Whites in the U.S. and Brazil.” “Similarly, in Brazil, there have been institutional efforts to spread the virus among Indigenous, Black, and mixed-race populations (CEPEDISA/FSP/USP & Conectas Direitos Humanos, 2021). How then did ‘everyday’ White people respond to learning that COVID-19 was disproportionately affecting racial minorities?

“Because news about COVID-19 was almost immediately tied to racial disparity information, we explore the possibility that racial attitudes predicted responses to the disease. Specifically, we propose that greater anti-Black attitudes, as operationalized by modern racism (McConahay, 1986), are associated with lower concern about COVID-19, less social distancing, and fewer health-maintenance behaviors for White Americans and White Brazilians. Thus, seemingly race-neutral personal decisions (such as whether to wear a mask, stay home, or become vaccinated), may actually be guided by anti-Blackness.”

They conclude: “White racists may exacerbate the pandemic by underestimating its severity, behaving in ways that enable disease spread, and by resisting efforts to eliminate structural causes of disparities. Although we would expect concern about COVID-19 to be highest where incidence is highest, our findings, that racists underestimate the pandemic’s severity, are even more striking given that areas with more racism are actually more affected by the pandemic (Cunningham and Wigfall, 2020). Moreover, our research contextualizes this disparate county-level incidence by revealing individuals’ racism predicts decreased COVID-19 concern and decreased intentions to engage in preventive behaviors.”

“Finally, this research suggests, as Shellae Versey et al. (2019) argue (see also Metzl, 2020), that racism (internalized racial oppression) is bad for both dominant (White) and non-dominant (non-White) groups. If anti-Blackness decreases healthy responses to a global pandemic, it means the health of society more broadly will suffer. Individuals’ attitudes and choices shape the health of all; therefore, even if dominant groups do not consciously connect race disparity information with desire to spread disease, racism nevertheless predicts their behavior. It also means that efforts to combat bias will likely improve the health and lives of society overall.”

Wilkins sent a response to my query that she didn’t have anything to add to this paper, and no research on long Covid.

Public health campaigns may make it worse

Another scholar, LaFleur Stephens-Dougan of Princeton University, published a study, “White Americans’ Reactions to Racial Disparities in COVID-19,” in the Cambridge University Press in 2022. (Stephens-Dougan sent a response to my query saying that she is on sabbatical and not responding to media or other queries until the fall of 2024.)

“I fielded a survey experiment on a nationally representative sample of 591 White Americans to test whether exposure to information about the disparate impact of COVID-19 on Black people influenced White Americans’ opinion about COVID-19 policies. I found that racially prejudiced White Americans who were exposed to the treatment diminished the importance of wearing a face mask. They also became more supportive of outdoor activities without social distancing guidelines, more likely to perceive shelter-in-place orders as a threat to their individual rights and freedoms, and less likely to perceive African Americans as following social distancing guidelines.

“Conversely, White Americans who did not endorse an anti-Black stereotype were less likely to perceive shelter-in-place orders as a threat to their individual rights and more likely to perceive African Americans as following social distancing guidelines. These findings highlight that well-intentioned public health campaigns may inadvertently exacerbate existing race-based health disparities.”

She wrote: “Throughout the pandemic, African Americans have been more likely to contract, be hospitalized for, and die from the coronavirus than White Americans — facts that have been publicized by the media. However, little attention has been devoted to what influence publicizing these disparities might have on White Americans’ opinions about COVID-19. Because the race-based disparities associated with the coronavirus align with one of the most salient social cleavages in American politics — race — I ask whether drawing attention to COVID-19 racial disparities attenuates support for COVID-19 safety precautions among racially prejudiced whites. …

“It would be valuable to learn whether similar results hold for other racial groups who have also been disproportionately affected, such as Latinos. … Might providing respondents with the information that African Americans are more likely to be essential workers mitigate the negative effect associated with sharing COVID-19 racial disparities information?

“Because racial disparities in COVID-19 outcomes are unlikely to dissipate anytime soon, it is imperative that we learn more about how to communicate to the public about the disparate effects of COVID-19. Unfortunately, the results of the present study suggest that efforts to slow the spread of the pandemic may be hampered by the knowledge that African Americans bear a disproportionate burden of the pandemic. The societal implications are staggering.”

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...