Falling into defeat about long COVID

https://www.theatlantic.com/health/archive/2022/06/pandemic-protections/661378/

AMERICA IS SLIDING INTO THE LONG PANDEMIC DEFEAT

In the face of government inaction, the country’s best chance at keeping the crisis from spiraling relies on everyone to keep caring.By Ed Yong

JUNE 27, 2022, 7 AM ET

in 2018, while reporting on pandemic preparedness in the Democratic Republic of Congo, I heard many people joking about the fictional 15th article of the country’s constitution: Débrouillez-vous, or “Figure it out yourself.” It was a droll and weary acknowledgment that the government won’t save you, and you must make do with the resources you’ve got. The United States is now firmly in the débrouillez-vous era of the COVID-19 pandemic.

Across the country, almost all government efforts to curtail the coronavirus have evaporated. Mask mandates have been lifted on public transit. Conservative lawmakers have hamstrung what public-health departments can do in emergencies. COVID funding remains stalled in Congress, jeopardizing supplies of tests, treatments, and vaccines. The White House and the CDC have framed COVID as a problem for individuals to act upon—but action is hard when cases and hospitalizations are underestimated, many testing sites have closed, and rose-tinted CDC guidelines downplay the coronavirus’s unchecked spread. Many policy makers have moved on: “We’re heading into the midterms, and I think there’s a real desire to show confidence that they’ve solved this,” Céline Gounder, an infectious-disease specialist and the editor at large for public health at Kaiser Health News, told me.

But COVID is far from solved. The coronavirus is still mutating. Even at one of the lowest death rates of the pandemic, it still claims the lives of hundreds of Americans daily, killing more than twice as many people as die, on average, in car accidents. Its costs are still disproportionately borne by millions of long-haulers; immunocompromised people; workers who still face unsafe working conditions; and Black, Latino, and Indigenous Americans, who are still dying at higher rates than white Americans. When Kirsten Bibbins-Domingo, an epidemiologist and physician at UC San Francisco, works with low-income, Black, and Latino communities in the Bay Area, their concerns are less about returning to normal and more about “how to keep themselves safe,” she told me. “Take it from a tuberculosis activist that you can lose political will, public attention, and scientific momentum and still have a disease that kills over a million people each year,” Mike Frick of the Treatment Action Group told me. “We’re seeing the TB-ification of COVID start.”

For any disease, there is a moral case against neglecting those who are most vulnerable; for COVID, there’s also still a self-interested case for even the privileged and powerful to resist the pull of neglect. For more than a year, the U.S. has focused on using vaccines and drugs to avert severe disease and death, while deprioritizing other means of preventing infections, such as masks and ventilation. To a degree, this strategy is working: Cases and hospitalizations recently spiked again, while ICU admissions rose gently and deaths have remained stable. And yet, infections still matter, and are affecting all of American society, including the vaxxed-and-done. The coronavirus periodically takes waves of educators and health-care workers out of action; the entire health-care system is now perpetually overburdened and unable to provide its former standard of care. People are still being disabled by long COVID, often without ever landing in the hospital. And uncontrolled infections are a gift to the virus, which keeps birthing new variants that could prolong the current level of crisis or send it spiraling back into a greater level of disruption.

https://5cea70e4b7b9d8e95b03f7069b6909ed.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Many sensible policies—say, mask mandates that toggle on in grocery stores, public transport, and other essential spaces when community transmission is high—seem unlikely in this political climate. What, then, is still on the table? Right now, “I feel like I’m screaming into the wind,” Matifadza Hlatshwayo Davis, the health director for St. Louis, told me. But while others get to simply say “We’re screwed” and move on, she said, “I have to drive into work and figure it out.” Débrouillez-vous, indeed.

I have interviewed dozens of other local officials, community organizers, and grassroots groups who are also swimming furiously against the tide of governmental apathy to push some pandemic response forward, even if incrementally. This is an endeavor that all of American society would benefit from; it is currently concentrated among a network of exhausted individuals who are trying to figure out this pandemic, while living up to public health’s central tenet: Protect the health of all people, and the most vulnerable especially. The late Paul Farmer, who devoted his life to providing health care to the world’s poorest people, understood that when doing such work, victories would be hard-won, if ever won at all. Referencing a line from The Lord of the Rings, he once said, “I have fought the long defeat.” In the third year of the COVID pandemic, that fight will determine how America fares against the variants and viruses still to come.

in a study of 177 countries, people’s level of trust—in the government and especially in one another—predicted COVID infection rates and vaccine uptake. In America, trust is in short supply, and accordingly, the country has underperformed throughout the pandemic despite its considerable resources. This problem is getting worse: A poll from Januaryfound that only 44 percent of respondents trusted the CDC’s statements on COVID, down from 55 percent in 2020—a decline that spanned the political spectrum.

As the pandemic has revealed, even powerful biomedical tools such as vaccines sputter in practice if disadvantaged people can’t access them, or if distrusting people refuse to use them. America’s recurring mistake is to create such technofixes at warp speed, while neglecting the systems that actually deploy those tools. Those systems—the country’s social infrastructure—are so porous that a multitude of smaller projects are necessary to patch each and every hole. Once lost, trust is hard to regain at scale. But it can slowly be rebuilt.

America actually has an entire workforce that specializes in earning trust: community health workers. They’re hired for their empathy, their strong local ties, and their personal experience with hardship. Breanna Burke, a community health worker in Bristol, Tennessee, where she has lived since she was 3, told me that her job is to “get to the root cause of ongoing health issues,” with the understanding that a person’s circumstances constrain their choices. For example, she helped one of her diabetic clients plan a budget to keep their power on so they could keep their insulin cold; another time, she figured out that a patient whose pain wouldn’t stop had been sleeping on a hardwood floor for nine months, and contacted a local women’s club to raise money for a mattress.

When COVID hit, Burke provided people with emergency food supplies so they could weather quarantine in safety, and talked others through their hesitancy over getting vaccinated. She can do that because her nonjudgmental approach and shared life experience make her trustworthy—the secret to community health workers’ extraordinary effectiveness. In three randomized trials involving people living in poor parts of Philadelphia, Shreya Kangovi, a physician at the University of Pennsylvania, showed that people who see community health workers spend 66 percent fewer days in the hospital than those who receive usual care. In her research, Kangovi also found that every dollar invested in said workers returns $2.47 to the average Medicaid payer. If their work on COVID prevention fulfills even part of that promise, it could be a crucial lifeline for the badly stretched health-care system.

Such efforts are part of a long-standing tradition. In the early 20th century, public health was a broader enterprise than it is now. It included not just physicians and scientists, but also labor-union leaders, housing reformers, and social activists, who attempted to right big societal problems such as unsafe workplaces and dilapidated neighborhoods. Even as the field professionalized, pockets of people with no official qualifications repeatedly stepped up to protect their communities’ health. Alongside their more radical activities, the Black Panther Party and the Young Lords provided vital health services for Black and Puerto Rican communities in the 1970s. In the ’80s and ’90s, ACT UP—the AIDS Coalition to Unleash Power—fought for the creation of HIV treatments, and changed the legal definition of AIDS and the way the FDA approved new drugs.

More recently, Stephen B. Thomas, a health-policy professor at the University of Maryland who has turned Black barbers and stylists into health-care advocates, worked with those shops and salons to provide COVID vaccines. And in early 2021, the sociologist Elizabeth Wrigley-Field and a small group of volunteers began setting up their own vaccination events at local mosques, for the many East African refugee and immigrant families in their neighborhood of Seward, Minnesota. The community had been heavily targeted with vaccine misinformation for more than a decade, but the group, the Seward Vaccine Equity Project, included trusted local figures—Inari Mohammed, an Oromo epidemiology student and long-standing member of a neighborhood mosque; Saida Mohamed, a gregarious Somali pharmacy owner whose store doubles as a social hub; and Ramla Bile, an experienced Somali civil-rights organizer. They identified local leaders, including a soccer coach and a local union staffer, and recruited attendees through conversations at Section 8 house towers and immigrant-owned small businesses. Ultimately, they delivered more than 500 vaccine doses. That might seem insignificant when 73 million Americans remain unvaccinated, but several hundred Seward residents are now substantially safer, which Wrigley-Field counts as a win.

The impact of community work can feel small in the face of a pandemic’s scale, as if people are merely mopping up the stragglers left behind by national initiatives. In fact, such work is foundational. It creates a bedrock of trust and solidarity, without which public health cannot operate. The problem isn’t that community work is trivial; it’s that there hasn’t been enough of it. And for many of the people I spoke with, such work acts as a vaccine against nihilism. The pandemic has fostered beliefs that people are inherently selfish or permanently polarized. Neither is true, Wrigley-Field told me: Despite the persistent myth that unvaccinated people today are all unreachable holdouts, “every time we organize an event, people come,” she said. She and her team were still giving people their first doses this January. Her goal is now simple: “Do something that helps, even when it’s very small,” she said. “I believe that doing the small stuff now is setting us up for bigger things.”

going bigger means ultimately compelling state or federal governments to commit to some kind of sustained COVID response. Over the past two years, tranches of concerned Americans have begun to coalesce into new interest groups, for whom public health is a top priority, to push for better pandemic protections. Public-health professionals often lament that the field has been consistently underfunded because it lacks a vocal constituency. But as the historian Amy Fairchild of Ohio State University and her colleagues have noted, public health had more political power in the early 20th century, partly because it allied itself with a broader coalition of organizations. It now has a rare chance to rebuild those alliances.

After Kristin Urquiza’s father died of COVID in June 2020, she founded the nonprofit Marked by COVID—a group of activists united in their grief and their desire to permanently memorialize America’s 1-million-plus COVID deaths. The group now has about 100,000 members, Urquiza told me. In 2017, when the longtime activist Paul Davis helped coordinate a nationwide campaign to save the Affordable Care Act, he thought his database of 7,000 people was “huge,” he told me. Now he is the policy director of Right to Health Action, an advocacy group that formed in the spring of 2020, and his database of COVID activists “is about 150,000,” he said. Other groups represent the millions of long-haulers who have been wrestling with the debilitating symptoms of long COVID, or communities that have been disproportionately harmed by the pandemic. A mixed team of public-health practitioners, health-care workers, educators, and others created the People’s CDC to “push back on harmful narratives that we don’t need COVID protections,” such as testing and masks, Lucky Tran, an activist and a science communicator, told me.

Though disparate, these groups share many qualities. Many feel abandoned by their government. Many feel that they cannot return to “normal,” and that a better normal can be fashioned instead. Many aren’t interested in shaming people over individual choices, but want structural changes that will make society safer for everyone. And most, to be blunt, are really pissed. In this, they could be successors to ACT UP, which was immensely effective despite staying relatively small: “A few thousand people were able to win lifesaving AIDS treatments for millions,” Davis, who is an ACT UP alumnus, told me. The pandemic activists he now works with dwarf that old community in numbers, and to his mind are just as motivated. Long-haulers have already won important victories, including pressing institutions such as the World Health Organization and the CDC to formally recognize long COVID, and so securing substantial research dollars for long-COVID research from the National Institutes of Health and private philanthropists. Their symptoms often keep them depleted physically and mentally, but although this work only adds to their strain, they feel they have no choice but to do it. “Our pain, grief, and disability isn’t going away,” Lisa McCorkell, a long-COVID advocate and co-founder of the Patient-Led Research Collaborative, told me.

Groups of impassioned but inexperienced activists can often struggle to do little beyond merely existing. Achieving power in the U.S. requires more than angry individuals, Jane McAlevey, an organizer and the author of A Collective Bargain, told me; it needs “a well-built organization that can actually channel people’s rage effectively,” she said. ACT UP did that by drawing wisdom fromits predecessors, and becoming “involved with basically every community that was vulnerable at the time,” as the historian Sarah Schulman once said. Similarly, several of the newly formed pandemic groups have already started working with one another, veterans of ACT UP, organizations advocating for chronic illnesses like myalgic encephalomyelitis, and health-care workers’, teachers’, and labor unions.

These groups vary considerably in their goals, which include permanent COVID memorials, better funding for long COVID, global vaccine equity, and more. These goals aren’t mutually exclusive, but the protoplasmic coalition still “needs a skeleton, an organizing principle to tie it together,” Gregg Gonsalves, a Yale epidemiologist and ACT UP alumnus, told me. That could be as simple as a push for a robust public-health system that centers the needs of the most vulnerable people. ACT UP achieved its many concrete victories without insisting that its members conform to specific messages, uniting instead around the idea that HIV deserved more public attention.

Building a stronger public-health system demands an unfettering of the moral imagination: Americans need to believe that their government should invest in systems that keep everyone safer from disease—and to trust that such systems are even possible. But throughout his decades-long career, Gonsalves has witnessed social safety nets being repeatedly shredded, leading to “a collapse of any faith in the state to do good,” he told me. That faith eroded further when public institutions buckled during the pandemic, and when two successive administrations failed to control the coronavirus. The resulting “pandemic fatigue” is not just a craving for the status quo, but a deep cynicism over the possibility of something better. In one study, most Americans preferred a better, fairer post-pandemic future, but mistakenly thought a “back-to-normal” one was more popular—and so more likely. “People can imagine a world with crypto-banking and the metaverse, so why is it so hard to imagine a world with less disease and death?” Céline Gounder of Kaiser Health News said.

even in the débrouillez-vous era, the nascent COVID constituency can still push for big policies that would prevent disadvantaged groups from suffering a disproportionate burden of disease and death. In December 2021, as Omicron swept the U.S., then–White House Press Secretary Jen Psaki replied sarcastically when a reporter asked why rapid tests weren’t widely available. “Should we just send one to every American?” Psaki said. But after two weeks of public outcry, the administration announced plans to do just that. To date, every household has been able to order up to 16 free tests—still insufficient, months too late, but invaluable nonetheless for families that can’t afford these expensive products. Several people I talked with mentioned the rapid-test turnaround as a rare and recent example of a positive, nationwide pandemic policy—and a sign that such policies are still achievable.

Similarly, the government could still promote the use of masks even if it won’t mandate them when the risk of transmission is high. In the 2000s, as HIV faded from public concern, health departments responded by making condoms as accessible as possible; New York City alone distributes tens of millions every year to bars and nightclubs. As Jay Varma, a physician at Weill Cornell Medicine who advised the New York City mayor’s office during the pandemic’s first year, has suggested, states and cities could follow the same playbook now, flooding public indoor spaces with free, high-quality masks, such as KF94s, KN95s, or N95s. Doron Dorfman, a disability-law expert at Syracuse University College of Law, is also leveraging the court system in favor of masking. He argues that requiring people to wear masks around immunocompromised students or employees—who may still have higher risks of infection and illness despite being vaccinated—counts as a reasonable accommodation under the Americans With Disabilities Act; the Eighth Circuit Court of Appeals accepted this argument, as did a federal district court in Virginia.

“Even if you get crumbs from the federal government, the scale is such that even crumbs save a lot of lives,” Matthew Cortland, a disabled policy analyst and lawyer at Data for Progress, told me. Cortland and others see the greatest potential in improving the air we breathe. The coronavirus spreads primarily through shared air, making indoor spaces riskier than outdoor ones. After misguidedly focusing on surface-cleaning hygiene theater, both the government and industry leaders are now starting to grasp the importance of ventilation and filtration. The White House has launched a Clean Air in Buildings Challenge (but falls short of actually mandating businesses to take action or providing dedicated funding). Varma and Cortland have both pitched officials the idea of assigning public buildings letter grades for air quality, just as there are grades for food safety in restaurants; that would tell immunocompromised people which essential spaces are safer in the absence of mask mandates. “People really like being able to breathe! Across the political spectrum!” Cortland told me, dryly. What’s missing, Cortland said, are detailed checklists of the kind that tell businesses how to make physical spaces accessible to disabled people; nothing similar exists for indoor air. “Businesses are telling me they need granular guidance, and it’s not there,” Cortland said. “But it could be.”

Cities and counties can also act in the face of sluggish national policy. The antiviral Paxlovid is effective only when taken shortly after symptoms first appear, so New York City created a free, same-day home-delivery system for the drug, and the city’s hotline also works for people who don’t have a regular doctor. Manhattan Borough President Mark Levine has been working on COVID safety bags—tests, high-quality masks, and Paxlovid information—that can be sent to every home or distributed via community groups. Alameda County, in California, recently reinstated an indoor mask mandate because of growing hospitalizations, and other left-leaning areas could follow suit: Polling by Data for Progress found that 80 percent of Democratic voters support mask mandates on public transportation, for instance. “Maybe that’s a place where local public-health activism can make an impact,” Cortland told me.

Activist groups can also push for grander upgrades to the U.S. public-health system, and longer-term funding to safeguard them. During the pandemic, the U.S. plastered over the wounds of its bleeding institutions with “taped-together systems of volunteers” and temporary scale-ups of important services such as testing and contact tracing, Amy Kapczynski, a global-health expert at Yale Law School, told me. When these Band-Aids fall off, the wounds beneath them reopen. What the U.S. needs, instead, is to rebuild its “infrastructure of care,” Kapczynski said, so that its epidemic responses aren’t subject to boom-and-bust cycles of emergency funding, and so that vulnerable populations aren’t left in the lurch whenever attention and resources wane.

It could, for example, massively expand its corps of community health workers, who are often overlooked because they “tend to be rural people, people of color, and women, without a lot of letters behind their name,” Kangovi, the UPenn physician, told me. In the U.S. there are just 61,000 of them, in contrast to roughly 1 million physicians—a ratio indicative of a health-care system that “waits for people to get sick and feeds them to us to make a livelihood off of,” Kangovi said. For years, doctors and nurses have been called frontline workers, and therein lies the problem: If emergency rooms are the front lines of a nation’s pandemic response, that response has already failed. The real front lines are in people’s homes—the places where community health workers operate.

The Biden administration has committed $226.5 million to training another 13,000 community health workers, which still feels insufficient for a country that spent $4.1 trillion on health care in 2020. Had a bigger system been in place before COVID arrived, “it would have made a real difference,” Kapczynski said, echoing many others I interviewed. Several of America’s biggest pandemic problems—plateauing vaccination rates, the mental-health toll, the erosion of trust—are exactly the problems that community health workers are good at solving. Scaling up their numbers could effectively be an Operation Warp Speed for trust—a way of making face-to-face solutions work at a national scale.

the débrouillezvous phase of the pandemic will be as patchwork as those that preceded it. And there are limits to what local officials can do in the absence of “anything even remotely resembling a national coordinated response,” Lindsay Wiley, a health law expert at UCLA, told me. Philadelphia, for example, reinstated an indoor mask mandate in April as local case numbers rose, only to rescind it four days later. There used to be “a clear understanding that locals would implement the CDC’s guidance in a way that worked best in their community,” Theresa Chapple, a local public-health official in the Chicagoland area, told me. “Now, if you’re doing anything different, it’s seen as going against the CDC.” Matifadza Davis, the St. Louis health director, told me the city has the authority to reinstate a mask mandate, but that it’s hard to use that power when surrounding counties won’t—or risk being sued by the state’s attorney general if they try. “Getting sued like that is exhausting, and we have a country full of health officials who’ve spent years dealing with lawyers and judges,” Wiley said. “There’s a chilling effect.”

States also can’t spend at a deficit; only the federal government can. Only federal leaders have the power and pockets to approve new vaccines and buy them at scale; to distribute vaccines to poorer countries that still desperately need them; to force a systematic improvement in indoor air; to push for universal paid sick leave and other measures that would allow vulnerable workers to protect their health without risking their income; and to truly create what the U.S. so sorely needs—a sustainable infrastructure that can keep more people from getting COVID, regardless of their social circumstances.

Such a world is always possible. The 1960s and ’70s saw a bloom of bold public-health initiatives—the passage of the Clean Air Act, the Clean Water Act, Medicare, and Medicaid, and the creation of the Environmental Protection Agency, the Occupational Health and Safety Administration, and what are now called federally qualified health centers. Upcoming decades could still witness a similar blooming.

“What’s standing in the way? It’s our political will—the way we think about our society and ourselves,” Beatrice Adler-Bolton, who co-hosts Death Panel, a podcast about the political economy of health, told me. “As we’ve gone through the pandemic, and our hope for policies has been ratcheted down, there still needs to be room for big ideas.” As a disabled person who studies disability, she has had to repeatedly renew her own sense of worth in the face of social structures that dismiss her value. That has made her practiced at hoping and calling for transformative policies. She echoes the organizer and abolitionist Mariame Kaba in saying “hope is a discipline”—not a fuzzy emotion, but the product of effortful work. And “in the process of imagining what could be better, I find hope,” Adler-Bolton said.

Ed Yong is a staff writer at The Atlantic. He won the Pulitzer Prize for Explanatory Reporting for his coverage of the COVID-19 pandemic.

One thought on “Falling into defeat about long COVID

  1. Dear Ann

    Covid 19 is the ‘flu re-branded to make more money for big pharma etc.

    Tests are pointless as they are, if anything at all testing the wrong thing.

    Masks are pointless against the ‘flu.

    Vaccines are at best pointless, at worst harmful or even deadly as are most big pharma drugs.

    The true pandemic is vitamin D deficiency which many people are beginning at last to understand.

    This does not make much money for big pharma etc. so they are not keen on it.

    Kind regards

    Like

Leave a Reply to alphaandomega21 Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.