America Is Trapped in a Pandemic Spiral

https://www.theatlantic.com/health/archive/2020/09/pandemic-intuition-nightmare-spiral-winter/616204/

America Is Trapped in a Pandemic Spiral - The Atlantic

As the U.S. heads toward the winter, the country is going round in circles, making the same conceptual errors that have plagued it since spring.

Army ants will sometimes walk in circles until they die. The workers navigate by smelling the pheromone trails of workers in front of them, while laying down pheromones for others to follow. If these trails accidentally loop back on themselves, the ants are trapped. They become a thick, swirling vortex of bodies that resembles a hurricane as viewed from space. They march endlessly until they’re felled by exhaustion or dehydration. The ants can sense no picture bigger than what’s immediately ahead. They have no coordinating force to guide them to safety. They are imprisoned by a wall of their own instincts. This phenomenon is called the death spiral. I can think of no better metaphor for the United States of America’s response to the COVID-19 pandemic.

The U.S. enters the ninth month of the pandemic with more than 6.3 million confirmed cases and more than 189,000 confirmed deaths. The toll has been enormous because the country presented the SARS-CoV-2 coronavirus with a smorgasbord of vulnerabilities to exploit. But the toll continues to be enormous—every day, the case count rises by around 40,000 and the death toll by around 800—because the country has consistently thought about the pandemic in the same unproductive ways.

Many Americans trusted intuition to help guide them through this disaster. They grabbed onto whatever solution was most prominent in the moment, and bounced from one (often false) hope to the next. They saw the actions that individual people were taking, and blamed and shamed their neighbors. They lapsed into magical thinking, and believed that the world would return to normal within months. Following these impulses was simpler than navigating a web of solutions, staring down broken systems, and accepting that the pandemic would rage for at least a year.

These conceptual errors were not egregious lies or conspiracy theories, but they were still dangerous. They manifested again and again, distorting the debate around whether to stay at home, wear masks, or open colleges. They prevented citizens from grasping the scope of the crisis and pushed leaders toward bad policies. And instead of overriding misleading intuitions with calm and considered communication, those leaders intensified them. The country is now trapped in an intuition nightmare: Like the spiraling ants, Americans are walled in by their own unhelpful instincts, which lead them round and round in self-destructive circles.

“The grand challenge now is, how can we adjust our thinking to match the problem before us?” says Lori Peek, a sociologist at the University of Colorado at Boulder who studies disasters. Here, then, are nine errors of intuition that still hamstring the U.S. pandemic response, and a glimpse at the future if they continue unchecked. The time to break free is now. Our pandemic summer is nearly over. Now come fall, the season of preparation, and winter, the season of survival. The U.S. must reset its mindset to accomplish both. Ant death spirals break only when enough workers accidentally blunder away, creating trails that lead the spiraling workers to safety. But humans don’t have to rely on luck; unlike ants, we have a capacity for introspection.

The spiral begins when people forget that controlling the pandemic means doing many things at once. The virus can spread before symptoms appear, and does so most easily through five P’s: people in prolonged, poorly ventilated, protection-free proximity. To stop that spread, this country could use measures that other nations did, to great effect: close nonessential businesses and spaces that allow crowds to congregate indoors; improve ventilation; encourage mask use; test widely to identify contagious people; trace their contacts; help them isolate themselves; and provide a social safety net so that people can protect others without sacrificing their livelihood. None of these other nations did everything, but all did enough things right—and did them simultaneously. By contrast, the U.S. engaged in …

1. A Serial Monogamy of Solutions

Stay-at-home orders dominated March. Masks were fiercely debated in April. Contact tracing took its turn in May. Ventilation is having its moment now. “It’s like we only have attention for only one thing at a time,” says Natalie Dean, a biostatistician at the University of Florida.

As often happens, people sought easy technological fixes for complex societal problems. For months, President Donald Trump touted hydroxychloroquine as a COVID-19 cure, even as rigorous studies showed that it isn’t one. In August, he switched his attention to convalescent plasma—the liquid fraction of a COVID-19 survivor’s blood that might contain virus-blocking antibodies. There’s still no clear evidence that this century-old approach can treat COVID-19 either, despite grossly misstated claims from FDA Commissioner Stephen Hahn (for which he later apologized). More generally, drugs might save some of the very sickest patients, as dexamethasone does, or shorten a hospital stay, as remdesivir does, but they are unlikely to offer outright cures. “It’s so reassuring to think that a magic-bullet treatment is out there and if we just wait, it’ll come and things will be normal,” Dean says.

Other strategies have merit, but are wrongly dismissed for being imperfect. In July, Carl Bergstrom, an epidemiologist and a sociologist of science at the University of Washington, argued that colleges cannot reopen safely without testing all students upon entry. “The gotcha question I’ve handled most from reporters since is: This school did entry testing, so why did they get an outbreak?” he says. It’s because such testing is necessary for a safe reopening, but not sufficient. “If you do it and screw everything else up, you’ll still have a big outbreak,” Bergstrom adds.

This brief attention span is understandable. Adherents of the scientific method are trained to isolate and change one variable at a time. Academics are walled off into different disciplines that rarely connect. Journalists constantly look for new stories, shifting attention to the next great idea. These factors prime the public to view solutions in isolation, which means imperfections become conflated with uselessness. For example, many critics of masks argued that they provide only partial protection against the virus, that they often don’t fit well, or that people wear them incorrectly. But some protection is clearly better than no protectionAs Dylan Morris of Princeton writes, “X won’t stop COVID on its own is not an argument against doing X.” Instead, it’s an argument for doing X along with other measures. Seat belts won’t prevent all fatal car crashes, but cars also come with airbags and crumple zones. “When we layer things, we give ourselves more wiggle room,” Dean says.

Several experts I’ve talked with have been asked: What now? The question assumes that the pandemic lingers because the U.S. simply hasn’t found the right solution yet. In fact, it lingers because the familiar solutions were never fully implemented. Despite claims from the White House, the U.S. is still not testing enough people. It still doesn’t have enough contact tracers. “We have the playbook, but I think there’s a confusion about what we’ve actually tried and what we’ve just talked about doing,” Dean says. A successful response “is never going to be one thing done perfectly. It’ll be a lot of different things done well enough.” That resilience disappears if we create…

2. False Dichotomies

A world of black and white is easier to handle than one awash with grays. But false dichotomies are dangerous. From the start, COVID-19 has been portrayed as a disease that mostly causes mild symptoms in people who quickly recover, and occasionally causes severe illness that leads to hospitalization and death. This two-sided caricature—severe or mild, sick or recovered—has erased the thousands of “long-haulers” who have endured months of debilitating symptoms at home with neither recognition nor care.

Meanwhile, as businesses closed and stay-at-home orders rolled out, “we presumed a trade-off between saving lives and saving the economy,” says Danielle Allen, a political scientist at Harvard. “That was foolishness of the most profound degree.” The two goals were actually aligned: Epidemiologists and economists largely agree that the economy cannot rebound while the pandemic is still raging. By treating the two as opposites, state leaders rushed to reopen, leading a barely contained virus to surge anew.  

Now, as winter looms and the pandemic continues, another dichotomy has emerged: enter another awful lockdown, or let the virus run free. This choice, too, is false. Public-health measures offer a middle road, and even “lockdowns” need not be as overbearing as they were in spring. A city could close higher-risk venues like bars and nightclubs while opening lower-risk ones like retail stores. There’s a “whole control panel of dials” on offer, but “it’s hard to have that conversation when people think of a light switch,” says Lindsay Wiley, a professor of public-health law at American University. “The term lockdown has done a lot of damage.” It exacerbated the false binary between shutting down and opening up, while offering …

3. The Comfort of Theatricality

Stay-at-home orders saved lives by curtailing COVID-19’s spread, and by giving hospitals some breathing room. But the orders were also meant to buy time for the nation to ramp up its public-health defenses. Instead, the White House treated months of physical distancing as a pandemic-ending strategy in itself. “We squandered that time in terms of scaling up testing and contact tracing, enacting policies to protect workers who get infected on the job, getting protective equipment to people in food-processing plants, finding places for people to isolate, offering paid sick leave … We still don’t have those things,” says Julia Marcus, an infectious-disease epidemiologist at Harvard Medical School and regular Atlantic contributor. The country is now facing the fall with many of the same problems that plagued it through the summer.

Showiness is often mistaken for effectiveness. The coronavirus mostly spreads through air rather than contaminated surfaces, but many businesses are nonetheless trying to scrub and bleach their way toward reopening. My colleague Derek Thompson calls this hygiene theater—dramatic moves that appear to offer safety without actually doing so. The same charge applies to temperature checks, which can’t detect the many COVID-19 patients who don’t have a fever. It also applies to the porous and inefficient travel bans that Trump and his allies still tout as policy successes. These tactics might do some good—let’s not conflate imperfect with useless—but they cause harm when they substitute for stronger measures. Theatricality breeds complacency. And by emphasizing solutions that can be easily seen, it exacerbated the American preference for …

4. Personal Blame Over Systemic Fixes

SARS-CoV-2 spread rapidly among America’s overstuffed prisons and understaffed nursing homes, in communities served by overstretched hospitals and underfunded public-health departments, and among Black, Latino, and Indigenous Americans who had been geographically and financially disconnected from health care by decades of racist policies. Without paid sick leave or a living wage, “essential workers” who earn a low, hourly income could not afford to quarantine themselves when they fell ill—and especially not if that would jeopardize the jobs to which their health care is tied. “The things I do to stay safe, they don’t have that as an option,” says Whitney Robinson, a social epidemiologist at the University of North Carolina at Chapel Hill.

But tattered social safety nets are less visible than crowded bars. Pushing for universal health care is harder than shaming an unmasked stranger. Fixing systemic problems is more difficult than spewing moralism, and Americans gravitated toward the latter. News outlets illustrated pandemic articles with (often distorted) photos of beaches, even though open-air spaces offer low-risk ways for people to enjoy themselves. Marcus attributes this tendency to America’s puritanical roots, which conflate pleasure with irresponsibility, and which prize shame over support. “The shaming gets codified into bad policy,” she says. Chicago fenced off a beach, and Honolulu closed beaches, parks, and hiking trails, while leaving riskier indoor businesses open.

Moralistic thinking jeopardizes health in two ways. First, people often oppose measures that reduce an individual’s risk—seat belts, condoms, HPV vaccines—because such protections might promote risky behavior. During the pandemic, some experts used such reasoning to question the value of masks, while the University of Michigan’s president argued that testing students widely would offer a “false sense of security.” These paternalistic false-assurance arguments are almost always false themselves. “There’s very little evidence for overcompensation to the point where safety measures do harm,” Bergstrom says.

Second, misplaced moralism can provide cover for bad policies. Many colleges started their semester with in-person teaching and inadequate testing, and are predictably dealing with large outbreaks. UNC Chapel Hill lasted just six days before reverting to remote classes. Administrators have chastised students for behaving irresponsibly, while taking no responsibility for setting them up to faila pattern that will likely continue through the fall as college clusters inevitably grow. “If you put 10,000 [students] in a small space, eating, sleeping, and socializing together, there’ll be an explosion of cases,” Robinson says. “I don’t know what [colleges] were expecting.” Perhaps they fell prey to …

5. The Normality Trap

In times of uncertainty and upheaval, “people crave a return to familiar, predictable rhythms,” says Monica Schoch-Spana, a medical anthropologist at the Johns Hopkins Center for Health Security. That pull is especially strong now because the pandemic’s toll is largely invisible. There’s nothing as dramatic as ruined buildings or lapping floodwater to hint that the world has changed. In some circles, returning to normal has been valorized as an act of defiance. That’s a reasonable stance when resisting terrorists, who seek to stoke fear, but a dangerous one when fighting a virus, which doesn’t care.

The powerful desire to re-create an old world can obscure the trade-offs necessary for surviving the new one. Keeping high-risk indoor businesses open, for example, helps the virus spread within a community, which makes reopening schools harder. “If schools are a priority, you have to put them ahead of something. What is that something?” says Bill Hanage, an epidemiologist at Harvard. “In an ideal world, they would be the last to close and the first to open, but in many communities, casinos, bars, and tattoo parlors opened before them.” A world with COVID-19 is fundamentally different from one without it, and the former simply cannot include all the trappings of the latter. Cherished summer rituals like camps and baseball games have already been lost; back-to-school traditions and Thanksgiving now hang in the balance. Change is hard to accept, which predisposes people to …

6. Magical Thinking

Back in April, Trump imagined the pandemic’s quick end: “Maybe this goes away with heat and light,” he said. From the start, he and others wondered if hot, humid weather might curb the spread of COVID-19, as it does other coronavirus diseases. Many experts countered that seasonal effects wouldn’t stop the new virus, which was already spreading in the tropics. But, fueled by shaky science and speculative stories, people widely latched on to seasonality as a possible savior, before the virus proved that it could thrive in the Arizona, Texas, and Florida summer.

This brand of magical thinking, in which some factor naturally defuses the pandemic, has become a convenient excuse for inaction. Recently, some commentators have argued that the pandemic will imminently fizzle out for two reasons. First, 20 to 50 percent of people have defensive T-cells that recognize the new coronavirus, because they were previously exposed to its milder, common-cold-causing cousins. Second, some modeling studies claim that herd immunity—whereby the virus struggles to find new hosts, because enough people are immune—could kick in when just 20 percent of the population has been infected.

Neither claim is implausible, but neither should be grounds for complacency. No one yet knows if the “cross-reactive” T-cells actually protect against COVID-19, and even if they do, they’re unlikely to stop people from getting infected. Herd immunity, meanwhile, is not a perfect barrier. Even if the low thresholds are correct, a fast-growing and uncontrolled outbreak will still shoot past themPursuing this strategy will mean that, in the winter, many parts of the U.S. may suffer what New York City endured in the spring: thousands of deaths and an untold number of lingering disabilities. That alone should be an argument against …

7. The Complacency of Inexperience

When illness is averted and lives are spared, “nothing happens and all you have is the miracle of a normal, healthy day,” says Howard Koh, a public-health professor at Harvard. “People take that for granted.” Public-health departments are chronically underfunded because the suffering they prevent is invisible. Pandemic preparations are deprioritized in the peaceful years between outbreaks. Even now, many people who have been spared the ravages of COVID-19 argue that the disease wasn’t a big deal, or associate their woes with preventive measures. But the problem is still the disease those measures prevented: The economy is still hurtingmental-health problems are growing, and educational futures have been curtailed, not because of some fearmongering overreaction, but because an uncontrolled pandemic is still afoot.

If anything, the U.S. did not react swiftly or strongly enough. Nations that had previously dealt with emerging viral epidemics, including several in East Asia and sub-Saharan Africa, were quick to take the new coronavirus seriously. By contrast, America’s lack of similar firsthand experience, combined with its sense of exceptionalism, might have contributed to its initial sloppiness. “One of my colleagues went to Rwanda in February, and as soon as he hit the airport, they asked about symptoms, checked his temperature, and took his phone number,” says Abraar Karan, an internist at Brigham and Women’s Hospital and Harvard Medical School. “In the U.S., I flew in July, and walked out of the airport, no questions asked.”

Even when the virus began spreading within the U.S., places that weren’t initially pummeled seemed to forget that viruses spread. “In April, I was seeing COVID patients in the ER every day,” Karan says. “In Texas, I had friends saying, ‘No one believes it here because we have no cases.’ In L.A., fellow physicians said, ‘Are you sure this is worse than the flu? We’re not seeing anything.’” Three months later, Texas and California saw COVID-19 all too closely. The tendency to ignore threats until they directly affect us has consigned the U.S. to …

8. A Reactive Rut

In March, Mike Ryan at the World Health Organization advised, “Be fast, have no regrets … The virus will always get you if you don’t move quickly.” The U.S. failed to heed that warning, and has repeatedly found itself several steps behind the coronavirus. That’s partly because exponential growth is counterintuitive, so “we don’t understand that things look fine until right before they’re very not fine,” says Beth Redbird, a sociologist at Northwestern. It’s also because the coronavirus spreads quickly but is slow to reveal itself: It can take a month for infections to lead to symptoms, for symptoms to warrant tests and hospitalizations, and for enough sick people to produce a noticeable spike. Pandemic data are like the light of distant stars, recording past events instead of present ones. This lag separates actions from their consequences by enough time to break our intuition for cause and effect. Policy makers end up acting only when it’s too late. Predictable surges get falsely cast as unexpected surprises.

This reactive rut also precludes long-term planning. In April, Michael Osterholm, an epidemiologist at the University of Minnesota, told me that “people haven’t understood that [the pandemic] isn’t about the next couple of weeks [but] about the next two years.” Leaders should have taken the long view then. “We should have been thinking about what it would take to ensure schools open in the fall, and prevent the long-term harms of lost children’s development,” Redbird says. Instead, we started working our way through a serial monogamy of solutions, and, like spiraling army ants, marched forward with no sense of the future beyond the next few footsteps.

These errors crop up in all disasters. But the COVID-19 pandemic has special qualities that have exacerbated them. The virus moved quickly enough to upend the status quo in a few months, deepening the allure of the hastily abandoned past. It also moved slowly enough to sweep the U.S. in a patchwork fashion, allowing as-yet-untouched communities to drop their guard. The pandemic grew huge in scope, entangling every aspect of society, and maxing out our capacity to deal with complexity. “People struggle to make rational decisions when they cannot see all the cogs,” says Njoki Mwarumba, an emergency-management professor at the University of Nebraska at Omaha. Full of fear and anxiety, people furiously searched for more information, but because the virus is so new, they instead spiraled into more confusion and uncertainty. And tragically, all of this happened during the presidency of Donald Trump.

Trump embodied and amplified America’s intuition death spiral. Instead of rolling out a detailed, coordinated plan to control the pandemic, he ricocheted from one overhyped cure-all to another, while relying on theatrics such as travel bans. He ignored inequities and systemic failures in favor of blaming China, the WHO, governors, Anthony Fauci, and Barack Obama. He widened the false dichotomy between lockdowns and reopening by regularly tweeting in favor of the latter. He and his allies appealed to magical thinking and steered the U.S. straight into the normality trap by frequently lying that the virus would go away, that the pandemic was ending, that new waves weren’t happening, and that rising case numbers were solely due to increased testing. They have started talking about COVID-19 in the past tense as cases surge in the Midwest.

“It’s like mass gaslighting,” says Martha Lincoln, a medical anthropologist at San Francisco State University. “We were put in a situation where better solutions were closed off but a lot of people had that fact sneak up on them. In the absence of a robust federal response, we’re all left washing our hands and hoping for the best, which makes us more susceptible to magical thinking and individual-level fixes.” And if those fixes never come, “I think people are going to harden into a fatalistic sense that we have to accept whatever the risks are to continue with our everyday lives.”

That might, indeed, be Trump’s next solution. The Washington Post reports that Trump’s new adviser—the neuroradiologist Scott Atlas—is pushing a strategy that lets the virus rip through the non-elderly population in a bid to reach herd immunity. This policy was folly for Sweden, which is nowhere near herd immunity, had one of the world’s highest COVID-19 death rates, and has a regretful state epidemiologist. Although the White House has denied that a formal herd-immunity policy exists, the Centers for Disease Control and Prevention recently changed its guidance to say that asymptomatic people “do not necessarily need a test” even after close contact with an infected personThis change makes no sense: People can still spread the virus before showing symptoms. By effectively recommending less testing, as Trump has specifically called for, the nation’s top public-health agency is depriving the U.S. of the data it needs to resist intuitive errors. “When there’s a refusal to take in the big picture, we are stuck,” Mwarumba says.

The pandemic is now in its ninth month. Uncertainties abound as fall and winter loom. In much of the country, colder weather will gradually pack people into indoor spaces, where the coronavirus more readily spreads. Winter also typically heralds the arrival of the flu and other respiratory viruses, and although the Southern Hemisphere enjoyed an unusually mild flu season, that’s “because of the severe precautions they were taking against COVID-19,” says Eleanor Murray, an epidemiologist at Boston University. “It’s not clear to me that our precautions will be successful enough to also prevent the flu.”

Schools are reopening, which will shape the path of the pandemic in still-uncertain ways. Universities are more predictable: Thanks to magical thinking and misplaced moralism, the U.S. already has at least 51,000 confirmed infections in more than 1,000 colleges across every state. These (underestimated) numbers will grow, because only 20 percent of colleges are doing regular testing, while almost half are not testing at all. As more are forced to stop in-person teaching, students will be sent back to their communities with COVID-19 in tow. “I expect this will blow up outbreaks in places that never had outbreaks, or in places that had outbreaks under control,” Murray says. Further spikes will likely occur after Thanksgiving and Christmas, as people who yearn to return to normal (or who think that the country overreacted) travel to see their family. Despite that risk, the CDC recently dropped its recommendation that out-of-state travelers should quarantine themselves for 14 days.

But many of the experts I spoke with thought it unlikely that “we’ll have cities going full New York,” as Bergstrom puts it. Doctors are getting better at treating the disease. States like Massachusetts, New York, and New Jersey have managed to avoid new surges over the summer, showing that local leadership can at least partly compensate for federal laxity. A new generation of cheap, rapid, paper-based tests will hit the market and make it easier to work out who is contagious. And despite the spiral of bad intuitions, many Americans are holding the line: Mask use and support for physical distancing are still high, according to Redbird, who has been tracking pandemic-related attitudes since March. “My feeling is that while things are going to get worse, I’m not sure they’ll be catastrophic, because of situational awareness,” Bill Hanage says.

Meanwhile, Trump seems to be teeing up a vaccine announcement in late October, shortly before the November 3 election. Moncef Slaoui, the scientific head of Operation Warp Speed, told NPR that it’s “extremely unlikely” a vaccine will be ready by then, and many scientists are concerned that the FDA will be pressured into approving a product that hasn’t been adequately tested, as Russia and China already have. Many Americans share this concern. A safe and effective vaccine could finally bring the pandemic under control, but its arrival will also test America’s ability to resist the intuitive errors that have trapped it so far. Vaccination has long been portrayed as the ultimate biomedical silver bullet, separating an era when masks and social distancing mattered from a world where normality has returned. This is yet another false dichotomy. “Everyone’s imagining this moment when all of a sudden, it’s all over, and they can go on vacation,” Natalie Dean says. “But the reality is going to be messier.”

This problem is not unique to COVID-19. It’s more compelling to hope that drug-resistant bacteria can be beaten with viruses than to stem the overuse of antibiotics, to hack the climate than to curb greenhouse-gas emissions, or to invest in a doomed oceanic plastic-catcher than to reduce the production of waste. Throughout its entire history, and more than any other nation, the U.S. has espoused “an almost blind faith in the power of technology as panacea,” writes the historian Howard Segal.* Instead of solving social problems, the U.S. uses techno-fixes to bypass them, plastering the wounds instead of removing the source of injury—and that’s if people even accept the solution on offer.

A third of Americans already say they would refuse a vaccine, whether because of existing anti-vaccine attitudes or more reasonable concerns about a rushed development process. Those who get the shot are unlikely to be fully protected; the FDA is prepared to approve a vaccine that’s at least 50 percent effective—a level comparable to current flu shots. An imperfect vaccine will still be useful. The risk is that the government goes all-in on this one theatrical countermeasure, without addressing the systemic problems that made the U.S. so vulnerable, or investing in the testing and tracing strategies that will still be necessary. “We’re still going to need those other things,” Dean says.

Between these reasons and the time needed for manufacturing and distribution, the pandemic is likely to drag on for months after a vaccine is approved. Already, the event is exacting a psychological toll that’s unlike the trauma of a hurricane or fire. “It’s not the type of disaster that Americans specifically are used to dealing with,” says Samantha Montano of Massachusetts Maritime Academy, who studies disasters. “Famines and complex humanitarian crises are closer approximations.” Health experts are burning outLong-haulers are struggling to find treatments or support. But many Americans are turning away from the pandemic. “People have stopped watching news about it as much, or talking to friends about it,” Redbird says. “I think we’re all exhausted.” Optimistically, this might mean that people are becoming less anxious and more resilient. More worryingly, it could also mean they are becoming inured to tragedy.

The most accurate model to date predicts that the U.S. will head into November with 220,000 confirmed deaths. More than 1,000 health-care workers have died. One in every 1,125 Black Americans has died, along with similarly disproportionate numbers of Indigenous people, Pacific Islanders, and Latinos. And yet, a recent poll found that 57 percent of Republican voters and 33 percent of independents think the number of deaths is acceptable. “In order for us to mobilize around a social problem, we all have to agree that it’s a problem,” Lori Peek says. “It’s shocking that we haven’t, because you really would have thought that with a pandemic it would be easy.” This is the final and perhaps most costly intuitive error …

9. The Habituation of Horror

The U.S. might stop treating the pandemic as the emergency that it is. Daily tragedy might become ambient noise. The desire for normality might render the unthinkable normal. Like poverty and racismschool shootings and police brutalitymass incarceration and sexual harassmentwidespread extinctions and changing climate, COVID-19 might become yet another unacceptable thing that America comes to accept.

 

 

 

 

Long-Haulers Are Redefining COVID-19

https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/

Long-Haulers Deal With Symptoms Weeks After Coronavirus Infection ...

Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.

Lauren nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale.

Tens of thousands of people, collectively known as “long-haulers,” have similar stories. I first wrote about them in early June. Since then, I’ve received hundreds of messages from people who have been suffering for months—alone, unheard, and pummeled by unrelenting and unpredictable symptoms. “It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today,’” says David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers.

Of the long-haulers Putrino has surveyed, most are women. Their average age is 44. Most were formerly fit and healthy. They look very different from the typical portrait of a COVID-19 patient—an elderly person with preexisting health problems. “It’s scary because in the states that are surging, we have all these young people going out thinking they’re invincible, and this could easily knock them out for months,” Putrino told me. And for some, months of illness could turn into years of disability.

Our understanding of COVID-19 has accreted around the idea that it kills a few and is “mild” for the rest. That caricature was sketched before the new coronavirus even had a name; instead of shifting in the light of fresh data, it calcified. It affected the questions scientists sought to ask, the stories journalists sought to tell, and the patients doctors sought to treat. It excluded long-haulers from help and answers. Nichols’s initial symptoms were so unlike the official description of COVID-19 that her first doctor told her she had acid reflux and refused to get her tested. “Even if you did have COVID-19, you’re 32, you’re healthy, and you’re not going to die,” she remembers him saying. (She has since tested positive.)

Long-haulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia and myalgic encephalomyelitis, also known as chronic fatigue syndrome. A British group—LongCovidSOS—launched a campaign to push the government for recognition, research, and support.

All of this effort started to have an effect. More journalists wrote stories about them. Some doctors began taking their illness seriously. Some researchers are developing treatment and rehabilitation programs. Representative Jamie Raskin of Maryland introduced a bill that would allow the National Institutes of Health to fund and coordinate more research into chronic illnesses that follow viral infections.

It’s not enough, argues Nisreen Alwan, a public-health professor at the University of Southampton who has had COVID-19 since March 20. She says that experts and officials should stop referring to all nonhospitalized cases as “mild.” They should agree on a definition of recovery that goes beyond being discharged from the hospital or testing negative for the virus, and accounts for a patient’s quality of life. “We cannot fight what we do not measure,” Alwan says. “Death is not the only thing that counts. We must also count lives changed.”

Only then will we truly know the full stakes of the pandemic. As many people still fantasize about returning to their previous lives, some are already staring at a future where that is no longer possible.

A few formal studies have hinted at the lingering damage that COVID-19 can inflict. In an Italian study, 87 percent of hospitalized patients still had symptoms after two months; a British study found similar trends. A German study that included many patients who recovered at home found that 78 percent had heart abnormalities after two or three months. A team from the Centers for Disease Control and Prevention found that a third of 270 nonhospitalized patients hadn’t returned to their usual state of health after two weeks. (For comparison, roughly 90 percent of people who get the flu recover within that time frame.)

These findings, though limited, are galling. They suggest that in the United States alone, which has more than 5 million confirmed COVID-19 cases, there are probably hundreds of thousands of long-haulers.

These people are still paying the price for early pandemic failures. Many long-haulers couldn’t get tested when they first fell sick, because such tests were scarce. Others were denied tests because their symptoms didn’t conform to a list we now know was incomplete. False negatives are more common as time wears on; when many long-haulers finally got tested weeks or months into their illness, the results were negative. On average, long-haulers who tested negative experienced the same set of symptoms as those who tested positive, which suggests that they truly do have COVID-19. But their negative result still hangs over them, shutting them out of research and treatments.

Several studies have found that most COVID-19 patients produce antibodies that recognize the new coronavirus, and that these molecules endure for months. Their presence should confirm whether a long-hauler was indeed infected. But there’s a catch: Most existing antibody studies focused on either hospitalized patients or those with mild symptoms and swift recoveries. By contrast, Putrino told me that in his survey of 1,400 long-haulers, two-thirds of those who have had antibody tests got negative results, even though their symptoms were consistent with COVID-19. Nichols, for example, tested negative for antibodies after twice testing positive for the coronavirus itself. “Just because you’re negative for antibodies doesn’t mean you didn’t have COVID-19,” Putrino said.

Organizations and governments have been slow to recognize what long-haulers call “long COVID.” In July, the U.K. allocated $11 million (£8.4 million) for research into the long-term consequences of COVID-19, but “to be eligible, you have to have been admitted into hospital,” says Trisha Greenhalgh, a primary-health-care professor at the University of Oxford. “That makes no sense.” Meanwhile, the CDC’s website still does not mention this phenomenon, and its list of symptoms barely reflects the full range of neurological problems. As late as June 25, the agency’s deputy director for infectious diseases said “we don’t yet know” whether COVID-19 “could persist for more than a few months.” By then, thousands of long-haulers already did know, and had been talking about it.

Without clear information from official sources, many long-haulers have found answers from one another. Support groups on Facebook have thousands of membersOne Slack group, founded within a wellness organization called Body Politic, has almost doubled in size since June to more than 7,000 active participants from 25 countries. There are channels for discussing every organ system in the body. There are lists of sympathetic medical providers, and tips for convincing those who aren’t listening. Eerily, the group’s membership morphs as the pandemic spreads: “When Brazil had a huge spike, we had a massive influx of Brazilian patients,” said Nichols, who is an administrator.

The Body Politic group has its own team of researchers, whose survey of 640 long-haulers remains the most illuminating study of the long COVID experience. More than any formally published study, it cataloged the full range of symptoms, and explored problems with stigma and testing.

Many long-haulers start feeling better in their fourth or fifth month, but recovery is tentative, variable, and not guaranteed. Hannah Davis, an artist in New York City, still has fever, facial numbness, brain fog, and rapid heartbeats whenever she stands up, but she’s sleeping better, at least; at the end of July, she had her first relatively normal day since mid-March. Margot Gage, a social epidemiologist at Lamar University, has only now regained the ability to read without shooting pain, but still has debilitating headaches and fatigue. Hannah Wei, a product designer based in Ottawa who is a Body Politic researcher, has recovered from her neurological symptoms but not the scars the coronavirus left on her lungs. “Will I be living with this lasting damage, or will it eventually go away?” she says. “I don’t have the answers, and no one can tell me.”

The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief. Employers have told long-haulers that they couldn’t possibly be sick for that long. Friends and family members accused them of being lazy. Doctors refused to believe they had COVID-19. “Every specialist I saw—cardiologist, rheumatologist, dermatologist, neurologist—was wedded to this idea that ‘mild’ COVID-19 infections last two weeks,” says Angela Meriquez Vázquez, a children’s activist in Los Angeles. “In one of my first ER visits, I was referred for a psychiatric evaluation, even though my symptoms were of heart attack and stroke.”

This “medical gaslighting,” whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color. “Doctors not taking our conditions seriously is a common issue, and now we have COVID-19 on top of it,” says Gage, who is Black. When she sought medical help for her symptoms, doctors in two separate hospitals assumed she was having a drug overdose.

Such gaslighting still occurs, but has been reduced by the recent spate of media attention. Davis was stunned when she met with a cardiologist who used the term long-hauler without needing an explanation. Vázquez burst into tears after her new primary-care provider instantly believed her. “I went into that appointment armed with my notebook, ready to do battle,” she says. “Just having a doctor who believed that my symptoms were directly related to COVID-19 was transformative.”

Putrino, the Mount Sinai doctor, came to recognize long COVID on his own. Back in March, he realized that some patients who were referred to his hospital were in bad shape but weren’t sick enough to be admitted. His team created an app to keep track of these people remotely. By late May, they realized that “around 10 percent just weren’t getting better,” he told me. He has since started a program at Mount Sinai that’s dedicated to caring for long-haulers.

But such programs are still scarce, creating large geographical deserts where long-haulers cannot find help. Putrino cannot see patients who live outside New York State. Igor Koralnik, a neurologist at Northwestern Medicine who runs a similar operation, was booked solid through April 2021; he has since brought extra staff members so he could accept more patients. Canadian long-haulers “have just one clinic, in Toronto, and that’s it,” Wei says.

Putrino thinks that many long-haulers have symptoms that resemble dysautonomia. This is an umbrella term for disorders that disturb the autonomic nervous system, which controls bodily functions such as breathing, heart rate, blood pressure, and digestion. Damage to this system, whether inflicted by the virus itself or by an overly intense immune response, might explain why many long-haulers struggle for breath when their oxygen levels are normal, or have unsteady heartbeats when they aren’t feeling anxious. Things that were once automatic are now erratic.

More than 90 percent of long-haulers whom Putrino has worked with also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome. For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms.

These symptoms defeat intuitions that people have about work and rest, sickness and recovery. “You have to get away from this idea that you can do more each day, or that you can push through,” says Caroline Dalton of Sheffield Hallam University in England, who works for a COVID-19 rehabilitation program. Many long-haulers push themselves because they miss their lives, or need to return to work. But as her colleague Robert Copeland, a sport psychologist, explains, “managing your fatigue is now your full-time job.”

The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate. A nutritionist fashions personalized meal plans to compensate for any dietary deficiencies. A neuropsychologist—Gudrun Lange, who has long worked with ME/CFS patients and is helping the group pro bono—uses relaxation and somatic-awareness techniques to help long-haulers manage their feelings about their condition.

Putrino insists on seeing and caring for all the long-haulers that he can. His colleagues at Mount Sinai’s newly launched center for post-COVID-19 care have to follow guidelines that permit them to admit only patients with positive tests. Anyone the center can’t admit is referred to Putrino’s team, which also keeps in touch with the Body Politic group to track patients who fall through the cracks.

I asked him why he is so inclined to believe long-haulers when so many other medical professionals dismiss them. First, he said, “these people are telling us the same things over and over again.” But also, his wife has Ehlers-Danlos syndrome—a group of genetic disorders that affect the body’s connective tissues, and that commonly lead to dysautonomia. “I watched her go through the same thing: ‘You must have anxiety, or panic attacks, or every-excuse-under-the-sun,’” he told me. “Finally, after three years of searching, someone said, ‘Oh, you have dysautonomia and EDS.’ They put her on a treatment protocol, and she could live her life again.”

“If you listen to the population you’re trying to help, they’ll tell you what’s wrong,” he said.

Nichols is a few weeks away from meeting the CDC’s criteria for ME/CFS. She has post-exertional malaise. She has brain fog. On September 9, she’ll mark her sixth month of extreme fatigue. “Am I happy about it? No,” she said. “But I have to face reality. If this is what I have, this is what I have.” Lots of long-haulers are in the same boat. Many (but not all) cases of ME/CFS are triggered by viral infections, and new clusters have historically emerged after outbreaks. “When COVID-19 started to happen, I said to my husband, ‘Oh God, there’s going to be an avalanche of ME/CFS,’” Lange told me.

Some long-haulers are skeptical—and even angry—about the ME/CFS connection. They won’t countenance the prospect of being chronically disabled. They don’t want to be labeled with a condition that has long been trivialized. Nichols sympathizes; she used to trivialize it herself. “I falsely thought it was just people being too tired—and I feel terrible about that,” she said. Her plan is to use her imminent diagnosis as fuel for advocacy, “as a way of paying back the ME community for my disbelief.”

But COVID-19 is still a new disease, and ME/CFS is just one of several possible outcomes. Some long-haulers recover before the six-month threshold. Some don’t have post-exertional malaise. Some have lung damage and breathing problems that aren’t traditional ME/CFS symptoms. Some have symptoms that more closely fit with other chronic illnesses, including dysautonomia, fibromyalgia, or mast cell activation syndrome.

Putrino doesn’t want to assign any labels. “Let’s just start helping them,” he said, while simultaneously collecting data that will eventually show how much long COVID overlaps with other known syndromes. (Several other teams are conducting similar studies.) Even when symptoms such as fatigue are shared, their biological roots might differ—and those differences matter. Exercise might be devastating for someone with ME/CFS, but might benefit a patient with something else. Many long-haulers, meanwhile, are treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them. Vázquez, for example, was diagnosed with MCAS, and although it’s not a perfect match for her symptoms, “it’s close enough,” she says.

No matter the exact diagnosis, the COVID-19 pandemic will almost certainly create a substantial wave of chronically disabled people. It might be hard to ignore this cohort because of the sheer number of them, the intense attention commanded by the pandemic, and the stories from celebrities such as the actor Alyssa Milano and the journalist Chris Cuomo. Then again, they might face the same neglect that people with ME/CFS have long endured. “We’ve been demanding for decades that people do something,” says Terri Wilder, who has ME/CFS and is an activist with #MEAction. “I’ve met with [NIH Director] Francis Collins. I’ve called Tony Fauci, and state senators. We still have no FDA-approved drugs, no systems of care. We only have 10 to 15 ME/CFS medical experts in the country. We all want our lives back, and we want this broken system fixed.

The uncertainty that long-haulers are experiencing results from that long-standing neglect. But so does the help they’re getting from people with chronic illnesses, who have already walked the same path. When the pandemic began, “it was like watching the roller coaster go up the hill, and only people like us knew that the track was broken,” says Alison Sbrana, who has ME/CFS and dysautonomia. She now spends her few productive weekly hours moderating the Body Politic support group. She has invited ME/CFS and dysautonomia specialists to give seminars, and has directed people to credible resources on aspects of disabled life, including care and benefits.

That frontier, in which long-haulers attempt to access social support, “is about to be a shit show,” Sbrana says. Some want their employers to make accommodations, such as reduced hours or long-term sick leave, so they can keep working at a time when their medical bills are mounting. Others cannot work, but are pressured to do so by bosses who don’t understand what long COVID is. “We keep seeing that people who don’t have a positive test result struggle to get paid time off work,” says Fiona Lowenstein, who founded Body Politic. Yet others “don’t want people to see them as complainers, push themselves, and then get sicker,” says Barbara Comerford, a New Jersey–based attorney who specializes in disability law and has represented many people with ME/CFS.

If they lose their jobs, “they’re in really bad shape,” she adds. Other sources of disability benefits and care, including private insurance and Social Security, are notoriously hard to access. Long-haulers would need to provide a history of being unable to do substantial gainful employment, and ample medical documentation of their disability to prove that it’s expected to last at least a year. Many have neither.

Being a long-hauler in August is very different from being one in February. The first wave, who were infected early in the year, endured months of solitude and confusion. While the national narrative shifted from physical distancing to reopenings, their realities were pinned in place by fever or fatigue. Many had no idea that others were going through the same ordeal. They wondered why they were still sick, or how long they’d be sick for. “We didn’t know what tomorrow would bring,” Nichols said.

Long-hauler support groups act as windows in time. In the Body Politic community, “the earliest person we know got sick in January,” Davis says. “She posts from the future, two months ahead of everyone else.” Conversely, as veteran long-haulers watch new generations pass the same monthly milestones, some are struck by a strange sense of solidarity, validation, and jealousy. The newer long-haulers already know what to call themselves, have bustling communities to learn from, and have better access to tests and medical care. The older ones are battle-worn and weary. “There’s something about having got sick in March and April that’s a unique experience, almost like post-traumatic stress disorder,” Vázquez says.

Throughout the pandemic, systemic failures have been portrayed as personal ones. Many people ignored catastrophic governmental choices that allowed the coronavirus to spread unchecked, and instead castigated individuals for going to beaches or wearing masks incorrectly. So, too, with recovery. The act of getting better is frequently framed as a battle between person and pathogen, ignoring everything else that sways the outcome of that conflict—the disregard from doctors and the sympathy from strangers, the choices of policy makers and the narratives of journalists. Nothing about COVID-19 exists in a social vacuum. If people are to recover, “you have to create the conditions in which they can recover,” Copeland, the sport psychologist from Sheffield Hallam, says.

If those conditions don’t exist, they can be at least partly willed into existence. Here, too, the long-hauler story is a microcosm of the pandemic. In the U.S., citizens chose to physically distance themselves, take precautions, and wear masks long before leaders urged or ordered them to do so. Likewise, the long-haulers have taken matters into their own hands, pushing for respect, research, and support when none were offered.

But such effort comes at a cost. Long-haulers are precariously perched on a physiological precipice—a difficult position from which to fight for their future. “A lot of people who don’t have the energy to educate the world are educating the world,” Nichols said.

 

 

 

COVID-19 long haulers on months of debilitating symptoms: ‘They don’t know how to make me better’

https://www.yahoo.com/lifestyle/covid-19-long-haulers-debilitating-symptoms-210633981.html

COVID-19 'long-haulers' complain of symptoms lasting weeks and ...

SARS-CoV-2, the virus that causes COVID-19, has prompted more questions than science can answer. But of the many puzzles that remain, few are more perplexing — or urgent — than this one: Why do some people get sick and never get better?

This group of individuals, nicknamed the “long haulers,” are people of all ages, races and genders. Survivors of the virus who, months later, find themselves battling a constellation of debilitating side effects that disrupt their ability to function. In a study released by Indiana University School of Medicine this August, in partnership with COVID-19 nonprofit Survivor Corps, long haulers describe nearly 100 side effects, from fatigue and body aches to night sweats and neuropathy.

The study casts doubt on the idea that the COVID-19 is a respiratory illness that lasts only a few weeks, suggesting instead that it may be a vascular disease capable of wreaking havoc on the eyes, skin, heart and brain, long after the sore throat goes away. While some hospitals, such as Mount Sinai in New York, have launched recovery centers for post-COVID care, the Centers for Disease Control and Prevention has released little data on the longterm prognosis for those who survive.

In the interim, it’s the long haulers themselves who are helping demystify their strange new world. Karyn Bishof, a firefighter paramedic in Florida, is one of them. After coming down with sore throat, nausea and fatigue in late March, she tested positive for COVID-19 and was told her case was mild. But as the weeks went on, the symptoms didn’t go away. Over four months later, the fatigue remains constant and along with it, a host of other exhausting side effects.

“I’m dealing with drastic changes in heart rate … My oxygen levels drop into the low 90, sometimes even the low eighties, I’m still dealing with headache, memory issues. I have a lot of trouble recalling things or sometimes finding my words,” Bishof tells Yahoo Life. “I’m still dealing with a runny and stuffy nose on and off. And then just a ton of other neurological issues, cardiac issues, chest pain, shortness of breath. I mean, the list goes on.”

Jessica Hulett, a writer in New York, has been battling similar effects. “The fatigue has been really persistent … All I want to do is go to sleep from like two o’clock on every day, and some days I have to,” says Hulett. “I’ve also started having a lot of like cognitive difficulties. Like I can’t remember things, I can’t focus on things.

Both Hulett and Bishof have struggled to find answers from doctors about what’s happening. “I’ve been talking a lot to my primary care doctor … she has kind of admitted, she’s like, ‘We don’t know, like we don’t know how long you’re going to be sick,’” says Hulett. “We don’t know what’s gonna make you better. We don’t know why you’re still sick.”

Luis Santos, a native-New Yorker who’s been experiencing “crushing fatigue,” cognitive issues and an unexplained spike in his cholesterol since getting COVID-19 in March, is too. “I have a team of about seven or eight doctors … and it’s a very scary thing that all these physicians are saying they don’t know. They don’t know how to make me better,” says Santos. “They’re hoping that with time they get better.”

Natalie Lambert, an associate research professor at IU School of Medicine and the lead author of the long haulers study, says this reaction is common. “I feel like this is a huge problem in health care around the world...We’re just kind of a society where you’re healthy until you can prove that you’re sick,” Lambert tells Yahoo Life. “If you’re experiencing something that’s outside of the standard of medical care, it can be really hard to get answers.”

Lambert, who began talking to patients after seeing a “wide range of COVID-19 symptoms” early on, says she doesn’t blame doctors for the gap in knowledge. “They can only treat you with the appropriate and approved standard treatments,” says Lambert. “They can’t experiment on people — so it’s understandable. But if there’s no answer to your question, what can you do?”

Survivor Corps, a grassroots movement connecting COVID-19 survivors, is trying to figure out just that — hosting webinars, sharing research and creating a Facebook group nearly 100,000 people strong. It’s from this group that Lambert pulled information about side effects, using an open-ended survey that allowed long haulers to add their symptoms.

She says the importance of these individuals, and their stories, can’t be overstated. “They are the world’s experts in the disease at this point in time,” Lambert tells Yahoo Life. “I mean, these patients know more about the disease than the medical community does.”

She hopes her research will serve as validation to long haulers — and proof that they’re not alone. “If you’re experiencing any of these symptoms, lots of people are experiencing these symptoms,” says Lambert. “And if your doctor won’t treat them, continue to advocate for yourself to try to get medical care because some of these can result in very serious health consequences.”

When it comes to the long haulers themselves, they’re urging others not to overlook the seriousness of this virus. “Right now the science for long haulers is showing that [COVID-19] doesn’t care about your age. It doesn’t care about your fitness level,” says Bishof. “It doesn’t care if you’re a firefighter-paramedic, or if you work on your computer from home … Do everything you can to protect yourself and others. This is not just a cold or a flu.”

 

 

 

How COVID-19 might increase risk of memory loss and cognitive decline

https://theconversation.com/how-covid-19-might-increase-risk-of-memory-loss-and-cognitive-decline-141940?utm_medium=email&utm_campaign=Latest%20from%20The%20Conversation%20for%20August%207%202020%20-%201698416388&utm_content=Latest%20from%20The%20Conversation%20for%20August%207%202020%20-%201698416388+Version+A+CID_8af0fc3134205f68bf387b5096319fb1&utm_source=campaign_monitor_us&utm_term=How%20COVID-19%20might%20increase%20risk%20of%20memory%20loss%20and%20cognitive%20decline

Of all frightening ways that the SARS-COV-2 virus affects the body, one of the more insidious is the effect of COVID-19 on the brain.

It is now clear that many patients suffering from COVID-19 exhibit neurological symptoms, from loss of smell, to delirium, to an increased risk of stroke. There are also longer-lasting consequences for the brain, including myalgic encephalomyelitis /chronic fatigue syndrome and Guillain-Barre syndrome.

These effects may be caused by direct viral infection of brain tissue. But growing evidence suggests additional indirect actions triggered via the virus’s infection of epithelial cells and the cardiovascular system, or through the immune system and inflammation, contribute to lasting neurological changes after COVID-19.

I am a neuroscientist specializing in how memories are formed, the role of immune cells in the brain and how memory is persistently disrupted after illness and immune activation. As I survey the emerging scientific literature, my question is: Will there be a COVID-19-related wave of memory deficits, cognitive decline and dementia cases in the future?

The immune system and the brain

Many of the symptoms we attribute to an infection are really due to the protective responses of the immune system. A runny nose during a cold is not a direct effect of the virus, but a result of the immune system’s response to the cold virus. This is also true when it comes to feeling sick. The general malaise, tiredness, fever and social withdrawal are caused by activation of specialized immune cells in the brain, called neuroimmune cells, and signals in the brain.

These changes in brain and behavior, although annoying for our everyday lives, are highly adaptive and immensely beneficial. By resting, you allow the energy-demanding immune response to do its thing. A fever makes the body less hospitable to viruses and increases the efficiency of the immune system. Social withdrawal may help decrease spread of the virus.

In addition to changing behavior and regulating physiological responses during illness, the specialized immune system in the brain also plays a number of other roles. It has recently become clear that the neuroimmune cells that sit at the connections between brain cells (synapses), which provide energy and minute quantities of inflammatory signals, are essential for normal memory formation.

Unfortunately, this also provides a way in which illnesses like COVID-19 can cause both acute neurological symptoms and long-lasting issues in the brain.

Microglia are specialized immune cells in the brain. In healthy states, they use their arms to test the environment. During an immune response, microglia change shape to engulf pathogens. But they can also damage neurons and their connections that store memory.

During illness and inflammation, the specialized immune cells in the brain become activated, spewing vast quantities of inflammatory signals, and modifying how they communicate with neurons. For one type of cell, microglia, this means changing shape, withdrawing the spindly arms and becoming blobby, mobile cells that envelop potential pathogens or cell debris in their path. But, in doing so, they also destroy and eat the neuronal connections that are so important for memory storage.

Another type of neuroimmune cell called an astrocyte, typically wraps around the connection between neurons during illness-evoked activation and dumps inflammatory signals on these junctions, effectively preventing the changes in connections between neurons that store memories.

Because COVID-19 involves a massive release of inflammatory signals, the impact of this disease on memory is particularly interesting to me. That is because there are both short-term effects on cognition (delirium), and the potential for long-lasting changes in memory, attention and cognition. There is also an increased risk for cognitive decline and dementia, including Alzheimer’s disease, during aging.

 

How does inflammation exert long-lasting effects on memory?

If activation of neuroimmune cells is limited to the duration of the illness, then how can inflammation cause long-lasting memory deficits or increase the risk of cognitive decline?

Both the brain and the immune system have specifically evolved to change as a consequence of experience, in order to neutralize danger and maximize survival. In the brain, changes in connections between neurons allows us to store memories and rapidly change behavior to escape threat, or seek food or social opportunities. The immune system has evolved to fine-tune the inflammatory response and antibody production against previously encountered pathogens.

Yet long-lasting changes in the brain after illness are also closely linked to increased risk for age-related cognitive decline and Alzheimer’s disease. The disruptive and destructive actions of neuroimmune cells and inflammatory signaling can permanently impair memory. This can occur through permanent damage to the neuronal connections or neurons themselves and also via more subtle changes in how neurons function.

The potential connection between COVID-19 and persistent effects on memory are based on observations of other illnesses. For example, many patients who recover from heart attack or bypass surgery report lasting cognitive deficits that become exaggerated during aging.

Another major illness with a similar cognitive complications is sepsis – multi-organ dysfunction triggered by inflammation. In animal models of these diseases, we also see impairments of memory, and changes in neuroimmune and neuronal function that persist weeks and months after illness.

Even mild inflammationincluding chronic stress, are now recognized as risk factors for dementias and cognitive decline during aging.

In my own laboratory, I and my colleagues have also observed that even without bacterial or viral infection, triggering inflammatory signaling over a short-term period results in long-lasting changes in neuronal function in memory-related brain regions and memory impairments.

 

Does COVID-19 increase risk for cognitive decline?

It will be many years before we know whether the COVID-19 infection causes an increased risk for cognitive decline or Alzheimer’s disease. But this risk may be decreased or mitigated through prevention and treatment of COVID-19.

Prevention and treatment both rely on the ability to decrease the severity and duration of illness and inflammation. Intriguingly, very new research suggests that common vaccines, including the flu shot and pneumonia vaccines, may reduce risk for Alzheimer’s.

Additionally, several emerging treatments for COVID-19 are drugs that suppress excessive immune activation and inflammatory state. Potentially, these treatments will also reduce the impact of inflammation on the brain, and decrease the impact on long-term brain health.

COVID-19 will continue to impact health and well-being long after the pandemic is over. As such, it will be critical to continue to assess the effects of COVID-19 illness in vulnerability to later cognitive decline and dementias.

In doing so, researchers will likely gain critical new insight into the role of inflammation across the life-span in age-related cognitive decline. This will aid in the development of more effective strategies for prevention and treatment of these debilitating illnesses.

 

 

 

 

COVID-19 long-term toll signals billions in healthcare costs ahead

https://www.reuters.com/article/us-health-coronavirus-fallout-insight/long-term-complications-of-covid-19-signals-billions-in-healthcare-costs-ahead-idUSKBN24Z1CM?fbclid=IwAR2f9fSnhgGBVvIe1fKX2EO5kKSG7TwUesAMUGrG0jBSfoBrBYltR1e9Nik

COVID-19 long-term toll signals billions in healthcare costs ahead ...

Late in March, Laura Gross, 72, was recovering from gall bladder surgery in her Fort Lee, New Jersey, home when she became sick again.

Her throat, head and eyes hurt, her muscles and joints ached and she felt like she was in a fog. Her diagnosis was COVID-19. Four months later, these symptoms remain.

Gross sees a primary care doctor and specialists including a cardiologist, pulmonologist, endocrinologist, neurologist, and gastroenterologist.

“I’ve had a headache since April. I’ve never stopped running a low-grade temperature,” she said.

Studies of COVID-19 patients keep uncovering new complications associated with the disease.

With mounting evidence that some COVID-19 survivors face months, or possibly years, of debilitating complications, healthcare experts are beginning to study possible long-term costs.

Bruce Lee of the City University of New York (CUNY) Public School of Health estimated that if 20% of the U.S. population contracts the virus, the one-year post-hospitalization costs would be at least $50 billion, before factoring in longer-term care for lingering health problems. Without a vaccine, if 80% of the population became infected, that cost would balloon to $204 billion.

Some countries hit hard by the new coronavirus – including the United States, Britain and Italy – are considering whether these long-term effects can be considered a “post-COVID syndrome,” according to Reuters interviews with about a dozen doctors and health economists.

Some U.S. and Italian hospitals have created centers devoted to the care of these patients and are standardizing follow-up measures.

Britain’s Department of Health and the U.S. Centers for Disease Control and Prevention are each leading national studies of COVID-19’s long-term impacts. An international panel of doctors will suggest standards for mid- and long-term care of recovered patients to the World Health Organization (WHO) in August.

YEARS BEFORE THE COST IS KNOWN

More than 17 million people have been infected by the new coronavirus worldwide, about a quarter of them in the United States.

Healthcare experts say it will be years before the costs for those who have recovered can be fully calculated, not unlike the slow recognition of HIV, or the health impacts to first responders of the Sept. 11, 2001 attacks on the World Trade Center in New York.

They stem from COVID-19’s toll on multiple organs, including heart, lung and kidney damage that will likely require costly care, such as regular scans and ultrasounds, as well as neurological deficits that are not yet fully understood.

A JAMA Cardiology study found that in one group of COVID-19 patients in Germany aged 45 to 53, more than 75% suffered from heart inflammation, raising the possibility of future heart failure.

A Kidney International study found that over a third of COVID-19 patients in a New York medical system developed acute kidney injury, and nearly 15% required dialysis.

Dr. Marco Rizzi in Bergamo, Italy, an early epicenter of the pandemic, said the Giovanni XXIII Hospital has seen close to 600 COVID-19 patients for follow-up. About 30% have lung issues, 10% have neurological problems, 10% have heart issues and about 9% have lingering motor skill problems. He co-chairs the WHO panel that will recommend long-term follow-up for patients.

“On a global level, nobody knows how many will still need checks and treatment in three months, six months, a year,” Rizzi said, adding that even those with mild COVID-19 “may have consequences in the future.”

Milan’s San Raffaele Hospital has seen more than 1,000 COVID-19 patients for follow-up. While major cardiology problems there were few, about 30% to 40% of patients have neurological problems and at least half suffer from respiratory conditions, according to Dr. Moreno Tresoldi.

Some of these long-term effects have only recently emerged, too soon for health economists to study medical claims and make accurate estimates of costs.

In Britain and Italy, those costs would be borne by their respective governments, which have committed to funding COVID-19 treatments but have offered few details on how much may be needed.

In the United States, more than half of the population is covered by private health insurers, an industry that is just beginning to estimate the cost of COVID-19.

CUNY’s Lee estimated the average one-year cost of a U.S. COVID-19 patient after they have been discharged from the hospital at $4,000, largely due to the lingering issues from acute respiratory distress syndrome (ARDS), which affects some 40% of patients, and sepsis.

The estimate spans patients who had been hospitalized with moderate illness to the most severe cases, but does not include other potential complications, such as heart and kidney damage.

Even those who do not require hospitalization have average one-year costs after their initial illness of $1,000, Lee estimated.

‘HARD JUST TO GET UP’

Extra costs from lingering effects of COVID-19 could mean higher health insurance premiums in the United States. Some health plans have already raised 2021 premiums on comprehensive coverage by up to 8% due to COVID-19, according to the Kaiser Family Foundation.

Anne McKee, 61, a retired psychologist who lives in Knoxville, Tennessee and Atlanta, had multiple sclerosis and asthma when she became infected nearly five months ago. She is still struggling to catch her breath.

“On good days, I can do a couple loads of laundry, but the last several days, it’s been hard just to get up and get a drink from the kitchen,” she said.

She has spent more than $5,000 on appointments, tests and prescription drugs during that time. Her insurance has paid more than $15,000 including $240 for a telehealth appointment and $455 for a lung scan.

“Many of the issues that arise from having a severe contraction of a disease could be 3, 5, 20 years down the road,” said Dale Hall, Managing Director of Research with the Society of Actuaries.

To understand the costs, U.S. actuaries compare insurance records of coronavirus patients against people with a similar health profile but no COVID-19, and follow them for years.

The United Kingdom aims to track the health of 10,000 hospitalized COVID-19 patients over the first 12 months after being discharged and potentially as long as 25 years. Scientists running the study see the potential for defining a long-term COVID-19 syndrome, as they found with Ebola survivors in Africa.

“Many people, we believe will have scarring in the lungs and fatigue … and perhaps vascular damage to the brain, perhaps, psychological distress as well,” said Professor Calum Semple from the University of Liverpool.

Margaret O’Hara, 50, who works at a Birmingham hospital is one of many COVID-19 patients who will not be included in the study because she had mild symptoms and was not hospitalized. But recurring health issues, including extreme shortness of breath, has kept her out of work.

O’Hara worries patients like her are not going to be included in the country’s long-term cost planning.

“We’re going to need … expensive follow-up for quite a long time,” she said.

 

 

 

 

Diabetes highlights two Americas: One where COVID is easily beaten, the other where it’s often devastating

https://www.usatoday.com/story/news/health/2020/07/27/diabetes-and-covid-two-americas-health-problems/5445836002/?utm_source=Sailthru&utm_medium=email&utm_campaign=Issue:%202020-07-27%20Healthcare%20Dive%20%5Bissue:28706%5D&utm_term=Healthcare%20Dive

What You Need to Know about Diabetes and the Coronavirus | diaTribe

Dr. Anne Peters splits her mostly virtual workweek between a diabetes clinic on the west side of Los Angeles and one on the east side of the sprawling city. 

Three days a week she treats people whose diabetes is well-controlled. They have insurance, so they can afford the newest medications and blood monitoring devices. They can exercise and eat well.  Those generally more affluent West L.A. patients who have gotten COVID-19 have developed mild to moderate symptoms – feeling miserable, she said – but treatable, with close follow-up at home.

“By all rights they should do much worse, and yet most don’t even go to the hospital,” said Peters, director of the USC Clinical Diabetes Programs.

On the other two days of her workweek, it’s a different story.

In East L.A., many patients didn’t have insurance even before the pandemic. Now, with widespread layoffs, even fewer do. They live in “food deserts,” lacking a car or gas money to reach a grocery store stocked with fresh fruits and vegetables. They can’t stay home, because they’re essential workers in grocery stores, health care facilities and delivery services. And they live in multi-generational homes, so even if older people stay put, they are likely to be infected by a younger relative who can’t.

They tend to get COVID-19 more often and do worse if they get sick, with more symptoms and a higher likelihood of ending up in the hospital or dying, said Peters, also a member of the leadership council of Beyond Type 1, a diabetes research and advocacy organization. 

“It doesn’t mean my East Side patients are all doomed,” she emphasized.

But it does suggest COVID-19 has an unequal impact, striking people who are poor and already in ill health far harder than healthier, better off people on the other side of town.

Tracey Brown has known that for years.

“What the COVID-19 pandemic has done is shined a very bright light on this existing and pervasive problem,” said Brown, CEO of the American Diabetes Association. Along with about 32 million others – roughly 1 in 10 Americans – Brown has diabetes herself.

“We’re in 2020, and every 5 minutes, someone is losing a limb” to diabetes, she said. “Every 10 minutes, somebody is having kidney failure.”

Americans with diabetes and related health conditions are 12 times more likely to die of COVID-19 than those without such conditions, she said. Roughly 90% of Americans who die of COVID-19 have diabetes or other underlying conditions. And people of color are over-represented among the very sick and the dead.

Diabetes and COVID: Coronavirus highlights America's health problems

Diabetes increases COVID risk

The data is clear: People with diabetes are at increased risk of having a bad case of COVID-19, and diabetics with poorly controlled blood sugar are at even higher risk, said Liam Smeeth, dean of the faculty of epidemiology and population health at the London School of Hygiene and Tropical Medicine. He and his colleagues combed data on 17 million people in the U.K. to come to their conclusions.

Diabetes often comes paired with other health problems – obesity and high blood pressure, for instance. Add smoking, Smeeth said, and “for someone with diabetes in particular, those can really mount up.”

People with diabetes are more vulnerable to many types infections, Peters said, because their white blood cells don’t work as well when blood sugar levels are high. 

“In a test tube, you can see the infection-fighting cells working less well if the sugars are higher,” she said.

Peters recently saw a patient whose diabetes was triggered by COVID-19, a finding supported by one recent study.

Going into the hospital with any viral illness can trigger a spike in blood sugar, whether someone has diabetes or not. Some medications used to treat serious cases of COVID-19 can “shoot your sugars up,” Peters said.

In patients who catch COVID-19 but aren’t hospitalized, Peters said, she often has to reduce their insulin to compensate for the fact that they aren’t eating as much.

Low income seems to be a risk factor for a bad case of COVID-19, even independent of age, weight, blood pressure and blood sugar levels, Smeeth said. “We see strong links with poverty.”

Some of that is driven by occupational risks, with poorer people unable to work from home or avoid high-risk jobs. Some is related to housing conditions and crowding into apartments to save money. And some, may be related to underlying health conditions.

But the connection, he said, is unmistakable.

Peters recently watched a longtime friend lose her husband. Age 60 and diabetic, he was laid off due to COVID, which cost him his health insurance. He developed a foot ulcer that he couldn’t afford to treat. He ignored it until he couldn’t stand anymore and then went to the hospital.

After surgery, he was released to a rehabilitation facility where he contracted COVID. He was transferred back to the hospital, where he died four days later.

“He died, not because of COVID and not because of diabetes, but because he didn’t have access to health care when he needed it to prevent that whole process from happening,” Peters said, adding that he couldn’t see his family in his final days and died alone. “It just breaks your heart.”

Taking action on diabetes– personally and nationally

Now is a great time to improve diabetes control, Peters added. With many restaurants and most bars closed, people can have more control over what they eat. No commuting leaves more time for exercise.

That’s what David Miller has managed to do. Miller, 65, of Austin, Texas, said he has stepped up his exercise routine, walking for 40 minutes four mornings a week at a nearby high school track. It’s cool enough at that hour, and the track’s not crowded, said Miller, an insurance agent, who has been able to work from home during the pandemic. “That’s more consistent exercise than I’ve ever done.”

His blood sugar is still not where he wants it to be, he said, but his new fitness routine has helped him lose a little weight and bring his blood sugar under better control. Eating less remains a challenge. “I’m one of those middle-aged guys who’s gotten into the habit of eating for two,” he said. “That can be a hard habit to shake.”

Miller said he isn’t too worried about getting COVID-19.

“I’ve tried to limit my exposure within reason,” he said, noting that he wears a mask when he can in public. “I honestly don’t feel particularly more vulnerable than anybody else.”

Smeeth, the British epidemiologist, said even though they’re at higher risk for bad outcomes, people with diabetes should know that they’re not helpless. 

“The traditional public health messages – don’t be overweight, give up smoking, keep active  – are still valid for COVID,” he said. Plus, people with diabetes should prioritize getting a flu vaccine this fall, he said, to avoid compounding their risk.

(For more practical recommendations for those living with diabetes during the pandemic, go to coronavirusdiabetes.org.)

In Los Angeles, Peters said, the county has made access to diabetes medication much easier for people with low incomes. They can now get three months of medication, instead of only one. “We refill everybody’s medicine that we can to make sure people have the tools,” she said, adding that diabetes advocates are also doing what they can to help people get health insurance.

Controlling blood sugar will help everyone, not just those with diabetes, Peters said. Someone hospitalized with uncontrolled blood sugar takes up a bed that could otherwise be used for a COVID-19 patient. 

Brown, of the American Diabetes Association, has been advocating for those measures on a national level, as well as ramping up testing in low-income communities. Right now, most testing centers are in wealthier neighborhoods, she said, and many are drive-thrus, assuming that everyone who needs testing has a car.

Her organization is also lobbying for continuity of health insurance coverage if someone with diabetes loses their job, as well as legislation to remove co-pays for diabetes medication.

“The last thing we want to have happen is that during this economically challenged time, people start rationing or skipping their doses of insulin or other prescription drugs,” Brown said. That leads to unmanaged diabetes and complications like ulcers and amputations. “Diabetes is one of those diseases where you can control it. You shouldn’t have to suffer and you shouldn’t have to die.”

 

 

Back Into the Lion’s Den: COVID-19 and Post-Acute Care

https://www.medpagetoday.com/infectiousdisease/covid19/87596?xid=nl_popmed_2020-07-17&eun=g885344d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_071720&utm_term=NL_Daily_Breaking_News_Active

Back Into the Lion's Den: COVID-19 and Post-Acute Care | MedPage Today

Returning COVID patients to unprepared facilities a “recipe for disaster”

As Florida becomes the new epicenter of the COVID-19 outbreak in the U.S., the state is trying to ensure that nursing homes and rehabilitation facilities aren’t quickly overwhelmed by patients still suffering from the disease.

So far, it has dedicated 11 facilities solely to COVID patients who need post-acute or long-term care: those who can’t be isolated at their current facilities, as well as those who’ve gotten over the worst of their illness and who can be moved to free up hospital beds for the flow of new patients.

One of those facilities is Miami Medical Center, which was shuttered in October 2017 but now transformed to care for 150 such patients. In total, the network of centers will handle some 750 patients.

“We recognize that that would be something that would be very problematic, to have COVID-positive nursing home residents be put back into a facility where you couldn’t have proper isolation,” Florida Gov. Ron DeSantis (R) said during a press briefing last week. “[That] would be a recipe for more spread, obviously more hospitalizations and more fatalities, and so we prohibited discharging COVID-positive patients back into nursing facilities.”

Whether 750 beds will be enough to accommodate the state’s needs remains a question, but it’s a necessary first step, given testing delays that in some cases stretch more than a week. Experts have warned that patients recovering from COVID shouldn’t be transferred to a facility without being tested first.

Without dedicated facilities, hospitals in Florida in dire need of beds for new patients might have had no other choice.

Key Role for Testing

There are no national data on the percentage of hospitalized COVID-19 patients who need rehabilitation or skilled nursing care after their hospital stay.

In general, about 44% of hospitalized patients need post-acute care, according to the American Health Care Association and its affiliate, the National Center for Assisted Living, which represent the post-acute and long-term care industries.

But COVID has “drastically changed hospital discharge patterns depending on local prevalence of COVID-19 and variations in federal and state guidance,” the groups said in an email to MedPage Today. “From a clinical standpoint, patients with COVID-19 symptoms serious enough to require hospitalization may be more likely to require facility or home-based post-acute medical treatment to manage symptoms. They also may need rehabilitation services to restore lost function as they recover post-discharge from the acute-care hospital.”

The level of post-acute care these patients need runs the spectrum from long-term acute care hospitals and inpatient rehabilitation facilities to skilled nursing facilities and home health agencies.

The variation is partly due to the heterogeneity of the disease itself. While some patients recover quickly, others suffer serious consequences such as strokes, cardiac issues, and other neurological sequelae that require extensive rehabilitation. Others simply continue to have respiratory problems long after the virus has cleared. Even those who are eventually discharged home sometimes require home oxygen therapy or breathing treatments that can require the assistance of home health aides.

Yet post-acute care systems say they haven’t been overwhelmed by a flood of COVID patients. Several groups, including AHCA, NCAL, and the American Medical Rehabilitation Providers Association (AMRPA) confirmed to MedPage Today that there’s actually been a downturn in post-acute care services during the pandemic.

That’s due to a decline in elective procedures, the societies said, adding that demand is starting to pick back up and that systems will need to be in place for preventing COVID spread in these facilities.

Testing will play a key role in being able to move patients as the need for post-acute care rises, specialists told MedPage Today.

“You shouldn’t move anyone until you know a status so that the nursing facility can appropriately receive them and care for them,” said Kathleen Unroe, MD, who studies long-term care issues at the Regenstrief Institute and Indiana University in Indianapolis.

AHCA and NCAL said they “do not support state mandates that require nursing homes to admit hospital patients who have not been tested for COVID-19 and to admit patients who have tested positive. This approach will introduce the highly contagious virus into more nursing homes. There will be more hospitalizations for nursing home residents who need ventilator care and ultimately, a higher number of deaths.”

Earlier this week, the groups sent a letter to the National Governors Association about preventing COVID outbreaks in long-term care facilities. They pointed to a survey of their membership showing that, for the majority, it was taking 2 days or longer to get test results back; one-quarter said it took at least 5 days.

The Centers for Medicare & Medicaid Services (CMS) recently announced that it would send point-of-care COVID tests to “every single” nursing home in the U.S. starting next week. Initially, the tests will be given to 2,000 nursing homes, with tests eventually being shipped to all 15,400 facilities in the country.

Hospitals can conduct their own testing before releasing patients, and this has historically provided results faster than testing sites or clinical offices, especially if they have in-house services. However, demand can create delays, experts said.

Preparing for the Future

Jerry Gurwitz, MD, a geriatrician at the University of Massachusetts Medical School in Worcester, says now is the time to develop post-acute care strategies for any future surges.

Gurwitz authored a commentary in the Journal of the American Geriatrics Society on an incident in Massachusetts early in the pandemic where a nursing home was emptied to create a COVID-only facility, only to have residents test positive after the majority had already been moved.

“We should be thinking, okay, what are the steps, what’s the alternative to emptying out nursing homes? Can we make a convention center, or part of it, amenable to post-acute care patients?” Gurwitz said. “Not just a bed to lie in, but possibly providing rehabilitation and additional services? That could all be thought through right now in a way that would be logical and lead to the best possible outcomes.”

Organizations can take the lead from centers that have lived through a surge, like those in New York City. Rusk Rehabilitation at NYU Langone Health created a dedicated rehabilitation unit for COVID-positive patients.

“We were able to bring patients out from the acute care hospital to our rehabilitation unit and continue their COVID treatment but also give them the rehabilitation they needed” — physical and occupational therapy (PT/OT) — “and the medical oversight that enhanced their recovery and got them out of the hospital quicker and in better shape,” Steven Flanagan, MD, chair of rehabilitation medicine at NYU Langone, said during an AMRPA teleconference.

Flanagan noted that even COVID patients who can be discharged home will have long-term issues, so preparing a home-based or outpatient rehabilitation program will be essential.

Jasen Gundersen, MD, chief medical officer of CareCentrix, which specializes in post-acute home care, said there’s been more concern from families and patients about going into a facility, leading to increased interest in home-based services.

“We should be doing everything we can to support patients in the home,” Gundersen said. “Many of these patients are elderly and were on a lot of medications before COVID, so we’re trying to manage those along with additive medications like breathing treatments and inhalers.”

Telemedicine has played an increasing role in home care, to protect both patients and home health aides, he added.

Long-term care societies have said that emergency waivers implemented by CMS have been critical for getting COVID patients appropriate levels of post-acute care, and they hope these remain in place as the pandemic continues.

For instance, CMS relaxed the 3-hour therapy rule and the 60% diagnostic rule, Flanagan said. Under those policies, in order to admit a patient to an acute rehabilitation unit, facilities must provide 3 hours of PT/OT every day, 5 days per week.

“Not every COVID patient could tolerate that level of care, but they still needed the benefit of rehabilitation that allowed them to get better quicker and go home faster,” he said.

Additionally, not every COVID patient fits into one of the 13 diagnostic categories that dictate who can be admitted to a rehab facility under the 60% rule, he said, so centers “could take COVID patients who didn’t fit into one of those diagnoses and treat them and get them better.”

AHCA and NCAL said further waivers or policy changes would be helpful, particularly regarding basic medical necessity requirements for coverage within each type of post-acute setting.

But chief among priorities for COVID discharges to post-acute care remains safety, the groups said.

“The solution is for hospital patients to be discharged to nursing homes that can create segregated COVID-19 units and have the vital personal protective equipment needed to keep the staff safe,” they said. “Sending hospitalized patients who are likely harboring the virus to nursing homes that do not have the appropriate units, equipment and staff to accept COVID-19 patients is a recipe for disaster.”

 

 

 

 

Nearly one-third of children tested for COVID in Florida are positive.

https://www.sun-sentinel.com/coronavirus/fl-ne-pbc-health-director-covid-children-20200714-xcdall2tsrd4riim2nwokvmsxm-story.html

Nearly One-Third Of Children Tested For COVID In Florida Are ...

Palm Beach County’s health director warns of risk of long-term damage.

Nearly one-in-three children tested for the new coronavirus in Florida has been positive, and a South Florida health official is concerned the disease could cause lifelong damage even for children with mild illness.

Dr. Alina Alonso, Palm Beach County’s health department director, warned county commissioners Tuesday that much is unknown about the long-term health consequences for children who catch COVID-19.

X-rays have revealed the virus can cause lung damage even in people without severe symptoms, she said.

“They are seeing there is damage to the lungs in these asymptomatic children. … We don’t know how that is going to manifest a year from now or two years from now,” Alonso said. “Is that child going to have chronic pulmonary problems or not?”

Her comments stand in contrast to Gov. Ron DeSantis’ messaging that children are at low risk, and classrooms need to be reopened in the fall. DeSantis has said he would be comfortable sending his children to school if they were old enough to attend.

Some studies suggest that children are less likely to catch COVID-19 than adults. Children are also far less likely to die of the disease. About 17,000 of Florida’s roughly 287,800 cases have been people younger than 18. Of the 4,514 COVID-19 deaths reported by Florida as of Tuesday, four have been younger than 18.

Still, it’s possible COVID-19 could have long-term consequences that will take time to understand, Alonso said.

“This is not the virus you bring everybody together to make sure you catch it and get it over with,” she said. “This is something serious, and we are learning new information about this virus every day.”

State statistics also show the percentage of children testing positive is much higher than the population as a whole. Statewide, about 31% of 54,022 children tested have been positive. The state’s positivity rate for the entire population is about 11%.

Researchers have linked a serious and potentially deadly inflammatory condition with COVID-19 in children. The condition, called pediatric multisystem inflammatory syndrome, doesn’t appear to be widespread. The Florida Department of Health lists 13 confirmed cases of the syndrome.

Dr. Jorge Perez, co-founder of Kidz Medical Services, said it’s too early to say how common and severe long-term damage could be from COVID-19, but early evidence suggests some children infected with the virus could have lasting damage.

“We are learning something every day,” said Perez, who operates pediatric offices throughout South Florida. “We have to be knowledgeable about this and continue to monitor to see what effects it has in children.”

DeSantis told talk radio host Rush Limbaugh last week that the risk to children is “very low.”

“I’ve got a 3-year-old daughter, 2-year-old son, and a newborn daughter,” DeSantis said in the radio interview. “And I can tell you if they were school age, I would have zero concern sending them.”

 

 

What happens if Covid-19 symptoms don’t go away? Doctors are trying to figure it out.

https://www.vox.com/2020/7/14/21324201/covid-19-long-term-effects-symptoms-treatment

Covid-19 long-term effects: People with persistent symptoms ...

People with long-term Covid-19 complications are meanwhile struggling to get care.

In late March, when Covid-19 was first surging, Jake Suett, a doctor of anesthesiology and intensive care medicine with the National Health Service in Norfolk, England, had seen plenty of patients with the disease — and intubated a few of them.

Then one day, he started to feel unwell, tired, with a sore throat. He pushed through it, continuing to work for five days until he developed a dry cough and fever. “Eventually, I got to the point where I was gasping for air literally doing nothing, lying on my bed.”

At the hospital, his chest X-rays and oxygen levels were normal — except he was gasping for air. After he was sent home, he continued to experience trouble breathing and developed severe cardiac-type chest pain.

Because of a shortage of Covid-19 tests, Suett wasn’t immediately tested; when he was able to get a test, 24 days after he got sick, it came back negative. PCR tests, which are most commonly used, can only detect acute infections, and because of testing shortages, not everyone has been able to get a test when they need one.

It’s now been 14 weeks since Suett’s presumed infection and he still has symptoms, including trouble concentrating, known as brain fog. (One recent study in Spain found that a majority of 841 hospitalized Covid-19 patients had neurological symptoms, including headaches and seizures.) “I don’t know what my future holds anymore,” Suett says.

Some doctors have dismissed some of his ongoing symptoms. One doctor suggested his intense breathing difficulties might be related to anxiety. “I found that really surprising,” Suett says. “As a doctor, I wanted to tell people, ‘Maybe we’re missing something here.’” He’s concerned not just for himself, but that many Covid-19 survivors with long-term symptoms aren’t being acknowledged or treated.

Suett says that even if the proportion of people who don’t eventually fully recover is small, there’s still a significant population who will need long-term care — and they’re having trouble getting it. “It’s a huge, unreported problem, and it’s crazy no one is shouting this from rooftops.”

In the US, a number of specialized centers are popping up at hospitals to help treat — and study — ongoing Covid-19 symptoms. The most successful draw on existing post-ICU protocols and a wide range of experts, from pulmonologists to psychiatrists. Yet even as care improves, patients are also running into familiar challenges in finding treatment: accessing and being able to pay for it.

What’s causing these long-term symptoms?

Scientists are still learning about the many ways the virus that causes Covid-19 impacts the body — both during initial infection and as symptoms persist.

One of the researchers studying them is Michael Peluso, a clinical fellow in infectious diseases at the University of California San Francisco, who is currently enrolling Covid-19 patients in San Francisco in a two-year study to study the disease’s long-term effects. The goal is to better understand what symptoms people are developing, how long they last, and eventually, the mechanisms that cause them. This could help scientists answer questions like how antibodies and immune cells called T-cells respond to the virus, and how different individuals might have different immune responses, leading to longer or shorter recovery times.

At the beginning of the Covid-19 pandemic, “the assumption was that people would get better, and then it was over,” Peluso says. “But we know from lots of other viral infections that there is almost always a subset of people who experience longer-term consequences.” He explains these can be due to damage to the body during the initial illness, the result of lingering viral infection, or because of complex immunological responses that occur after the initial disease.

“People sick enough to be hospitalized are likely to experience prolonged recovery, but with Covid-19, we’re seeing tremendous variability,” he says. It’s not necessarily just the sickest patients who experience long-term symptoms, but often people who weren’t even initially hospitalized.

That’s why long-term studies of large numbers of Covid-19 patients are so important, Peluso says. Once researchers can find what might be causing long-term symptoms, they can start targeting treatments to help people feel better. “I hope that a few months from now, we’ll have a sense if there is a biological target for managing some of these long-term symptoms.”

Lekshmi Santhosh, a physician lead and founder of the new post-Covid OPTIMAL Clinic at UCSF, says many of her patients are reporting the same kinds of problems. “The majority of patients have either persistent shortness of breath and/or fatigue for weeks to months,” she says.

Additionally, Timothy Henrich, a virologist and viral immunologist at UCSF who is also a principal investigator in the study, says that getting better at managing the initial illness may also help. “More effective acute treatments may also help reduce severity and duration of post-infectious symptoms.”

In the meantime, doctors can already help patients by treating some of their lingering symptoms. But the first step, Peluso explains, is not dismissing them. “It is important that patients know — and that doctors send the message — that they can help manage these symptoms, even if they are incompletely understood,” he says. “It sounds like many people may not be being told that.”

Long-term symptoms, long-term consequences

Even though we have a lot to learn about the specific damage Covid-19 can cause, doctors already know quite a bit about recovery from other viruses: namely, how complex and challenging a task long-term recovery from any serious infection can be for many patients.

Generally, it’s common for patients who have been hospitalized, intubated, or ventilated — as is common with severe Covid-19 — to have a long recovery. Being bed-bound can cause muscle weakness, known as deconditioning, which can result in prolonged shortness of breath. After a severe illness, many people also experience anxiety, depression, and PTSD.

A stay in the ICU not uncommonly leads to delirium, a serious mental disorder sometimes resulting in confused thinking, hallucinations, and reduced awareness of surroundings. But Covid-19 has created a “delirium factory,” says Santhosh at UCSF. This is because the illness has meant long hospital stays, interactions only with staff in full PPE, and the absence of family or other visitors.

Theodore Iwashyna, an ICU physician-scientist at the University of Michigan and VA Ann Arbor, is involved with the CAIRO Network, a group of 40 post-intensive care clinics on four continents. In general, after patients are discharged from ICUs, he says, “about half of people have some substantial new disability, and half will never get back to work. Maybe a third of people will have some degree of cognitive impairment. And a third have emotional problems.” And it’s common for them to have difficulty getting care for their ongoing symptoms after being discharged.

In working with Covid-19 patients, says Santhosh, she tells patients, “We believe you … and we are going to work on the mind and body together.”

Yet it’s currently impossible to predict who will have long-lasting symptoms from Covid-19. “People who are older and frailer with more comorbidities are more likely to have longer physical recovery. However, I’ve seen a lot of young people be really, really sick,” Santhosh says. “They will have a long tail of recovery too.”

Who can access care?

At the new OPTIMAL Clinic at UCSF, doctors are seeing patients who were hospitalized for Covid-19 at the UCSF health system, as well as taking referrals of other patients with persistent pulmonary symptoms. For ongoing cough and chest tightness, the clinic is providing inhalers, as well as pulmonary rehabilitation, including gradual aerobic exercise with oxygen monitoring. They’re also connecting patients with mental health resources.

“Normalizing those symptoms, as well as plugging people into mental health care, is really critical,” says Santhosh, who is also the physician lead and founder of the clinic. “I want people to know this is real. It’s not ‘in their heads.’”

Neeta Thakur, a pulmonary specialist at Zuckerberg San Francisco General Hospital and Trauma Center who has been providing care for Covid-19 patients in the ICU, just opened a similar outpatient clinic for post-Covid care. Thakur has also arranged a multidisciplinary approach, including occupational and physical therapy, as well as expedited referrals to neurology colleagues for rehabilitation for the muscles and nerves that can often be compressed when patients are prone for long periods in the ICU. But she’s most concerned by the cognitive impairments she’s seeing, especially as she’s dealing with a lot of younger patients.

These California centers join new post-Covid-19 clinics in major cities across the country, including Mount Sinai in New York and National Jewish Health Hospital in Denver. As more and more hospitals begin to focus on post-Covid care, Iwashyna suggests patients try to seek treatment where they were hospitalized, if possible, because of the difficulty in transferring sufficient medical records.

Santosh recommends that patients with persistent symptoms call their closest hospital, or nearest academic medical center’s pulmonary division, and ask if they can participate in any clinical trials. Many of the new clinics are enrolling patients in studies to try to better understand the long-term consequences of the disease. Fortunately, treatment associated with research is often free, and sometimes also offers financial incentives to participants.

But otherwise, one of the biggest challenges in post-Covid-19 treatment is — like so much of American health care — being able to pay for it.

Outside of clinical trials, cost can be a barrier to treatment. It can be tricky to get insurance to cover long-term care, Iwashyna notes. After being discharged from an ICU, he says, “Recovery depends on [patients’] social support, and how broke they are afterward.” Many struggle to cover the costs of treatment. “Our patient population is all underinsured,” says Thakur, noting that her hospital works with patients to try to help cover costs.

Lasting health impacts can also affect a person’s ability to go back to work. In Iwashyna’s experience, many patients quickly run through their guaranteed 12 weeks of leave under the Family Medical and Leave Act, which isn’t required to be paid. Eve Leckie, a 39-year-old ICU nurse in New Hampshire, came down with Covid-19 on March 15. Since then, Leckie has experienced symptom relapses and still can’t even get a drink of water without help.

“I’m typing this to you from my bed, because I’m too short of breath today to get out,” they say. “This could disable me for the rest of my life, and I have no idea how much that would cost, or at what point I will lose my insurance, since it’s dependent on my employment, and I’m incapable of working.” Leckie was the sole wage earner for their five children, and was facing eviction when their partner “essentially rescued us,” allowing them to move in.

These long-term burdens are not being felt equally. At Thakur’s hospital in San Francisco, “The population [admitted] here is younger and Latinx, a disparity which reflects who gets exposed,” she says. She worries that during the pandemic, “social and structural determinants of health will just widen disparities across the board.” People of color have been disproportionately affected by the virus, in part because they are less likely to be able to work from home.

Black people are also more likely to be hospitalized if they get Covid-19, both because of higher rates of preexisting conditions — which are the result of structural inequality — and because of lack of access to health care.

“If you are more likely to be exposed because of your job, and likely to seek care later because of fear of cost, or needing to work, you’re more likely to have severe disease,” Thakur says. “As a result, you’re more likely to have long-term consequences. Depending on what that looks like, your ability to work and economic opportunities will be hindered. It’s a very striking example of how social determinants of health can really impact someone over their lifetime.”

If policies don’t support people with persistent symptoms in getting the care they need, ongoing Covid-19 challenges will deepen what’s already a clear crisis of inequality.

Iwashyna explains that a lot of extended treatment for Covid-19 patients is “going to be about interactions with health care systems that are not well-designed. The correctable problems often involve helping people navigate a horribly fragmented health care system.

“We can fix that, but we’re not going to fix that tomorrow. These patients need help now.”