This week’s contributor is Larry Levitt, the Executive Vice President for Health Policy at the Kaiser Family Foundation.
For the first time in an economic downturn, the Affordable Care Act (ACA) exists as a health care safety net for people losing their jobs and employer-provided health insurance. A new study provides some clues as to how well the health care law works for people who lose their jobs and insurance.
The study– by Sumit Agarwal and Benjamin Sommers, published in the New England Journal of Medicine – compares people who lost their jobs before and after the ACA went into effect in 2014 to see if there is a difference in how many people retained health insurance. During the pre-ACA period (2011-2013), there was about a 5% increase in the uninsured rate for people following a job loss. After the ACA went into effect (2014-2016), no such increase occurred. Instead, Medicaid and the marketplaces saw large increases in utilization.
With millions of Americans losing their jobs during the pandemic, the number of people without health coverage has undoubtedly risen. However, by how much is unknown, since we don’t track insurance coverage in real-time like we do employment. Many who have lost jobs may not have had employer-sponsored insurance in the first place, if they worked an industry like food service or retail. And the vast majority of people who are unemployed are classified as on temporary layoff, with employers who may be continuing health benefits for their furloughed workers, at least for now. However, the share of unemployed workers who have permanently lost their jobs is growing.
If the economic crisis persists, the number of people losing job-based health insurance will climb, making the ACA’s role as a safety net more relevant than ever.
Those on the front lines of the fight against the novel coronavirus worry about keeping themselves, their families and their patients safe.
This story is part of a series examining the state of healthcare six months into the public health emergency declared for COVID-19.
There’s no end in sight for the country as it grapples with another surge of COVID-19 cases.
That’s especially true for nurses seeking the reprieve of their hospitals returning to normal operations sometime this year. Many in the South and West are now treating ICUs full of COVID-19 patients they hoped would never arrive in their states, largely spared from spring’s first wave.
And like many other essential workers, those in healthcare are falling ill and dying from COVID-19. The total number of nurses stricken by the virus is still unclear, though the Centers for Disease Control and Prevention has reported 106,180 cases and 552 deaths among healthcare workers. That’s almost certainly an undercount.
National Nurses United, the country’s largest nurses union, told Healthcare Dive it has counted 165 nurse deaths from COVID-19 and an additional 1,060 healthcare worker deaths.
Safety concerns have ignited union activity among healthcare workers during the pandemic, and also given them an opportunity to punctuate labor issues that aren’t new, like nurse-patient ratios, adequate pay and racial equality.
At the same time, the hospitals they work for are facing some of their worst years yet financially, after months of delayed elective procedures and depleted volumes that analysts predict will continue through the year. Many have instituted furloughs and layoffs or other workforce reduction measures.
Healthcare Dive had in-depth conversations with three nurses to get a clearer picture of how they’re faring amid the once-in-a-century pandemic. Here’s what they said.
Elizabeth Lalasz, registered nurse, John H. Stroger Hospital in Chicago
Elizabeth Lalasz has worked at John H. Stroger Hospital in Chicago for the past 10 years. Her hospital is a safety net facility, catering to those who are “Black, Latinx, the homeless, inmates,” Lalasz told Healthcare Dive. “People who don’t actually receive the kind of healthcare they should in this country.”
Data from the CDC show racial and ethnic minority groups are at increased risk of getting COVID-19 or experiencing severe illness, regardless of age, due to long-standing systemic health and social inequities.
CDC data reveal that Black people are five times more likely to contract the virus than white people.
This spring Lalasz treated inmates from the Cook County Jail, an epicenter in the city and also the country. “That population gradually decreased, and then we just had COVID patients, many of them Latinx families,” she said.
Permission granted by Elizabeth Lalasz
Once Chicago’s curve began to flatten and the hospital could take non-COVID patients, those coming in for treatment were desperately sick. They’d been delaying care for non-COVID conditions, worried a trip to the hospital could risk infection.
A Kaiser Family Foundation poll conducted in May found that 48% of Americans said they or a family member had skipped or delayed medical care because of the pandemic. And 11% said the person’s condition worsened as a result of the delayed care.
When patients do come into Lalasz’s hospital, many have “chest pain, then they also have diabetes, asthma, hypertension and obesity, it just adds up,” she said.
“So now we’re also treating people who’ve been delaying care. But after the recent southern state surges, the hospital census started going down again,” she said.
Amy Arlund, registered nurse, Kaiser Permanente Medical Center in Fresno, California:
Amy Arlund works the night shift at Kaiser Fresno as an ICU nurse, which she’s done for the past two decades.
She’s also on the hospital’s infection control committee, where for years she’s fought to control the spread of clostridium difficile colitis, or C. diff., in her facility. The highly infectious disease can live on surfaces outside the body for months or sometimes years.
The measures Arlund developed to control C. diff served as her litmus test, as “the top, most stringent protocols we could adhere to,” when coronavirus patients arrived at her hospital, she told Healthcare Dive.
But when COVID-19 cases surged in northern states this spring, “it’s like all those really strict isolation protocols that prior to COVID showing up would be disciplinable offenses were gone,” Arlund said.
Widespread personal protective equipment shortages at the start of the pandemic led the CDC and the Occupational Safety and Health Administration to change their longstanding guidance on when to use N95 respirator masks, which have long been the industry standard when dealing with novel infectious diseases.
The CDC also issued guidance for N95 respirator reuse, an entirely new concept to nurses like Arlund who say those changes go against everything they learned in school.
“I think the biggest change is we always relied on science, and we have always relied heavily on infection control protocols to guide our practice,” Arlund said. “Now infection control is out of control, we can no longer rely on the information and resources we always have.”
In Arlund’s ICU, she’s taken care of dozens of COVID positive patients and patients ruled out for coronavirus, she said. After a first wave in the beginning of April, cases dropped, but are now rising again.
Other changing guidance weighing heavily on nurses is how to effectively treat coronavirus patients.
“Are we doing remdesivir this week or are we going back to the hydroxychloroquine, or giving them convalescent plasma?”Arlund said. “Next week I’m going to be giving them some kind of lavender enema, who knows.”
Erik Andrews, registered nurse, Riverside Community Hospital in Riverside, California:
Erik Andrews, a rapid response nurse at Riverside Community Hospital in California, has treated coronavirus patients since the pandemic started earlier this year. He likens ventilating them to diffusing a bomb.
“These types of procedures generate a lot of aerosols, you have to do everything in perfectly stepwise fashion, otherwise you’re going to endanger yourself and endanger your colleagues,” Andrews, who’s been at Riverside for the past 13 years, told Healthcare Dive.
He and about 600 other nurses at the hospital went on strike for 10 days this summer after a staffing agreement between the hospital and its owner, HCA Healthcare, and SEIU Local 121RN, the union representing RCH nurses, ended without a renewal.
The nurses said it would lead to too few nurses treating too many patients during a pandemic. Insufficient PPE and recycling of single-use PPE were also putting nurses and patients at risk, the union said, and another reason for the strike.
But rapidly changing guidance around PPE use and generally inconsistent information from public officials are now making the nurses at his hospital feel apathetic.
“Unfortunately I feel like in the past few weeks it’s gotten to the point where you have to remind people about putting on their respirator instead of face mask, so people haven’t gotten lax, but definitely kind of become desensitized compared to when we first started,” Andrews said.
Permission granted by Erik Andrews
With two children at home, Andrews slept in a trailer in his driveway for 12 weeks when he first started treating coronavirus patients. The trailer is still there, just in case, but after testing negative twice he felt he couldn’t spend any more time away from his family.
He still worries though, especially about his coworkers’ families. Some coworkers he’s known for over a decade, including one staff member who died from COVID-19 related complications.
“It’s people you know and you know that their families worry about them every day,” he said. “So to know that they’ve had to deal with that loss is pretty horrifying, and to know that could happen to my family too.”
“It’s new territory, which is why we’re taking that measured approach on rating actions,” Suzie Desai, senior director at S&P, said.
The healthcare sector has been bruised from the novel coronavirus and the effects are likely to linger for years, but the first half of 2020 has not resulted in an avalanche of hospital and health system downgrades.
At the outset of the pandemic, some hospitals warned of dire financial pressures as they burned through cash while revenue plunged. In response, the federal government unleashed $175 billion in bailout funds to help prop up the sector as providers battled the effects of the virus.
Still, across all of public finance — which includes hospitals — the second quarter saw downgrades outpacing upgrades for the first time since the second quarter of 2017.
S&P characterized the second quarter as a “historic low” for upgrades across its entire portfolio of public finance credits.
“While only partially driven by the coronavirus, the second quarter was the firstsince Q2 2017 with the number of downgrades surpassing upgrades and by the largest margin since Q3 2014,” according to a recent Moody’s Investors Service report.
Through the first six months of this year, Moody’s has recorded 164 downgrades throughout public finance and, more specifically, 27 downgrades among the nonprofit healthcare entities it rates.
By comparison, Fitch Ratings has recorded 14 nonprofit hospital and health system downgrades through July and just two upgrades, both of which occurred before COVID-19 hit.
“Is this a massive amount of rating changes? By no means,” Kevin Holloran, senior director of U.S. Public Finance for Fitch, said of the first half of 2020 for healthcare.
Also through July, S&P Global recorded 22 downgrades among nonprofit acute care hospitals and health systems, significantly outpacing the six healthcare upgrades recorded over the same period.
“It’s new territory, which is why we’re taking that measured approach on rating actions,” Suzie Desai, senior director at S&P, said.
Still, other parts of the economy lead healthcare in terms of downgrades. State and local governments and the housing sector are outpacing the healthcare sector in terms of downgrades, according to S&P.
Virus has not ‘wiped out the healthcare sector’
Earlier this year when the pandemic hit the U.S., some made dire predictions about the novel coronavirus and its potential effect on the healthcare sector.
Reports from the ratings agencies warned of the potential for rising covenant violations and an outlook for the second quarter that would result in the “worst on record,“ one Fitch analyst said during a webinar in May.
That was likely “too broad of a brushstroke,” Holloran said. “It has not come in and wiped out the healthcare sector,” he said. He attributes that in part to the billions in financial aid that the federal government earmarked for providers.
Though, what it has revealed is the gaps between the strongest and weakest systems, and that the disparities are only likely to widen, S&P analysts said during a recent webinar.
The nonprofit hospitals and health systems pegged with a downgrade have tended to be smaller in size in terms of scale, lower-rated already and light on cash, Holloran said.
Still, some of the larger health systems were downgraded in the first half of the year by either one of the three rating agencies, including Sutter Health, Bon Secours Mercy Health, Geisinger, University of Pittsburgh Medical Center and Care New England.
“This is something that individual management of a hospital couldn’t control,” said Rick Gundling, senior vice president of Healthcare Financial Management Association, which has members from small and large organizations. “It wasn’t a bad strategy — that goes into a downgrade. This happened to everybody.”
Deteriorating payer mix
Looking forward, some analysts say they’re more concerned about the long-term effects for hospitals and health systems that were brought on by the downturn in the economy and the virus.
One major concern is the potential shift in payer mix for providers.
As millions of people lose their job they risk losing their employer-sponsored health insurance. They may transition to another private insurer, Medicaid or go uninsured.
For providers, commercial coverage typically reimburses at higher rates than government-sponsored coverage such as Medicare and Medicaid. Treating a greater share of privately insured patients is highly prized.
If providers experience a decline in the share of their privately insured patients and see a growth in patients covered with government-sponsored plans, it’s likely to put a squeeze on margins.
The shift also poses a serious strain for states, and ultimately providers. States are facing a potential influx of Medicaid members at the same time state budgets are under tremendous financial pressure. It raises concerns about whether states will cut rates to their Medicaid programs, which ultimately affects providers.
Some states have already started to re-examine and slash rates, including Ohio.
This seems at odds with what we assumed about kids and COVID-19 at the start of the pandemic. Indeed, one positive in this pandemic so far has been that children who contract the virus typically experience mild illness. Most children don’t require hospitalisation and very few die from the disease. However, some children can develop a severe inflammatory syndrome similar to Kawasaki disease, although this is thankfully rare.
This generally mild picture has contributed to cases in children being overlooked. But emerging evidence suggests children might play a bigger role in transmission than originally thought. They may be equally as infectious as adults based on the amount of viral genetic material found in swabs, and we have seen large school clusters emerge in Australia and around the world.
How likely are children to be infected?
Working out how susceptible children are has been difficult. Pre-emptive school closures occurred in many countries, removing opportunities for the virus to circulate in younger age groups. Children have also missed out on testing because they typically have mild symptoms. In Australia, testing criteria were initially very restrictive. People had to have a fever or a cough to be tested, which children don’t always have. This hindered our ability to detect cases in children, and created a perception children weren’t commonly infected.
One way to address this issue is through antibody testing, which can detect evidence of past infection. A study of over 60,000 people in Spain found 3.4% of children and teenagers had antibodies to the virus, compared with 4.4% to 6.0% of adults. But Spain’s schools were also closed, which likely reduced children’s exposure.
Another method is to look at what happens to people living in the same household as a known case. The results of these studies are mixed. Some have suggested a lower risk for children, while others have suggested children and adults are at equal risk.
Children might have some protection compared to adults, because they have less of the enzyme which the virus uses to enter the body. So, given the same short exposure, a child might be less likely to be infected than an adult. But prolonged contact probably makes any such advantage moot.
The way in which children and adults interact in the household might explain the differences seen in some studies. This is supported by a new study conducted by the Centers for Disease Control and Prevention. Children and partners of a known case were more likely to be infected than other people living in the same house. This suggests the amount of close, prolonged contact may ultimately be the deciding factor.
How often do children transmit the virus?
Severalstudies show children and adults have similar amounts of viral RNA in their nose and throat. This suggests children and adults are equally infectious, although it’s possible children transmit the virus slightly less often than adults in practice. Because children are physically smaller and generally have more mild symptoms, they might release less of the virus.
In Italy, researchers looked at what happened to people who’d been in contact with infected children, and found the contacts of children were more likely to be infected than the contacts of adults with the virus.
Teenagers are of course closer to adults, and it’s possible younger children might be less likely to transmit the virus than older children. However, reports of outbreaks in childcare centres and primary schools suggest there’s still some risk.
What have we seen in schools?
Large clusters have been reported in schools around the world, most notably in Israel. There, an outbreak in a high school affected at least 153 students, 25 staff members, and 87 others. Interestingly, that particular outbreak coincided with an extreme heatwave where students were granted an exemption from having to wear face masks, and air conditioning was used continuously.
At first glance, the Australian experience seems to suggest a small role for children in transmission. A study of COVID-19 in educational settings in New South Wales in the first half of the year found limited evidence of transmission, although a large outbreak was noted to have occurred in a childcare centre.
This might seem reassuring, but it’s important to remember the majority of cases in Australia were acquired overseas at the time of the study, and there was limited community transmission. Also, schools switched to distance learning during the study, after which school attendance dropped to 5%. This suggests school safety is dependent on the level of community transmission.
As community transmission has grown in Victoria, so has the significance of school clusters. The Al-Taqwa College outbreak remains one of Australia’s largest clusters. Importantly, the outbreak there has been linked to other clusters in Melbourne, including a major outbreak in the city’s public housing towers.
Close schools when community transmission is high
This evidence means we need to take a precautionary approach. When community transmission is low, face-to-face teaching is probably low-risk. But schools should switch to distance learning during periods of sustained community transmission. If we fail to address the risk of school outbreaks, they can spread into the wider community.
While most children won’t become severely ill if they contract the virus, the same cannot be said for their adult family members or their teachers. In the US, 40% of teachers have risk factors for severe COVID-19, as do 28.6 million adults living with school-aged children.
Recent recommendations on mask-wearing by older and younger children mirror risk-reduction guidelines for schools developed by the Harvard T. H. Chan School of Public Health. These guidelines stress the importance of face masks, improving ventilation, and the regular disinfection of shared surfaces.
The changing landscape
As the virus has spread more widely, the demographic profile of cases has changed. The virus is no longer confined to adult travellers and their contacts, and children are now commonly infected. In Germany, the proportion of children in the number of new infections is now consistent with their share of the total population.
While children are thankfully much less likely to experience severe illness than adults, we must consider who children have contact with and how they can contribute to community transmission. Unless we do, we won’t succeed in controlling the pandemic.
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 members. One 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.
The minimal evidence of serious impact of COVID infection on young healthy individuals has been one of the bright spots of this pandemic. Overall, only a small percentage of those infected, mostly the elderly or those with pre-existing conditions, get very sick, and an even smaller number die.
But a new piece in The Atlantic lays out mounting evidence that many younger patients don’t spring back to good health after a few weeks, as common wisdom suggests; instead, they experience debilitating long-term effects, months after infection. The profile of the average patient with “Long-COVID” is just 44 years old, and previously fit and healthy.
She (the condition is much more common in women) likely suffered a mild initial infection. But now, months later, she still faces a wide range of symptoms. Some patients have significant chronic pulmonary or cardiac function abnormalities (like Georgia State’s star freshman quarterback recruit, sidelined for the year with post-COVID myocarditis).
But others are dealing with a different, but just as debilitating, set of symptoms resembling chronic fatigue syndrome (CFS).
And like CFS patients, many COVID “long-haulers” find their symptoms minimized by their doctors. Early studies show that large numbers of patients may be affected: in a series of 270 non-hospitalized patients, the CDC found a full third hadn’t returned to their usual health after two weeks (as compared to just 10 percent of influenza patients).
A handful of centers have taken the first step toward better understanding “Long-COVID”, establishing dedicated clinics to study and treat the growing number of patients for whomCOVID-19 is turning out to be a chronic disease, leaving a wave of people with long-term disabilities in its wake.
Across four nights of a national convention that was anything but conventional, with the nominating process, acceptance speeches, and traditional pomp and circumstance forced into a virtual format due to the coronavirus pandemic, Democrats returned to the healthcare playbook widely viewed as successful in the 2018 midterm elections.
In addition to promising a more robust and concerted response to the COVID crisis gripping the nation, party leaders vowed to protect and expand the Affordable Care Act (ACA), rather than aiming to replace it with the more aggressive “Medicare for All” (M4A) approach that dominated much of the discussion during the primary campaign.
In his acceptance speech on Thursday, Democratic nominee Joseph R. Biden, Jr. promised “a healthcare system that lowers premiums, deductibles, and drug prices by building on the Affordable Care Act he’s trying to rip away,” referring to President Trump’s continued support for the full repeal of the 2010 healthcare reform law.
Earlier, progressive runner-up and vocal M4A advocate Sen. Bernie Sanders signaled a closing of the party’s ranks around Biden’s more moderate approach: “While Joe and I disagree on the best path to get to universal coverage, he has a plan that will greatly expand healthcare and cut the cost of prescription drugs. Further, he will lower the eligibility age of Medicare from 65 to 60.”
Several other speakers highlighted the need to protect the ACA’s guarantee of affordable insurance to those with preexisting conditions, most powerfully the prominent M4A crusader Ady Barkan, who suffers from amyotrophic lateral sclerosis (ALS).
“Even during this terrible crisis,” Barkan said, “Donald Trump and Republican politicians are trying to take away millions of people’s health insurance.”
More plans are expected to cover virtual office visits and expanded mental health and well-being offerings.
Dive Brief:
Large employers are projecting their health care benefit costs to surpass $15,500 per employee in 2021, Business Group on Health’s annual survey finds.
That would represent a 5.3% increase in costs, estimated at $14,769 this year.
The health plans are also expected to expand virtual care, mental health and emotional well-being offerings to employees.
In line with recent years, employers will cover nearly 70% of costs while employees will bear about 30%, or nearly $4,500, in 2021.
“Health care costs are a moving target and one that employers continue to keep a close eye on,” said Ellen Kelsay, president and CEO of Business Group on Health. “The pandemic has triggered delays in both preventive and elective care, which could mean the projected trend for this year may turn out to be too high. If care returns to normal levels in 2021, the projected trend for next year may prove to be too low. It’s difficult to know where cost increases will land.”
The growth in virtual care is one of the trends identified in the survey. Eight in 10 health plan executives said virtual health will play a significant role in how care is delivered, up from 64% last year and 52% in 2018. More than half (52%) will offer more virtual care options next year.
Nearly all employers will offer telehealth services for minor, acute services while 91% will offer telemental health, and that could grow to 96% by 2023.
Virtual care for musculoskeletal management shows the greatest potential for growth. While 29% will offer musculoskeletal management virtually next year, another 39% are considering adding it by 2023. Employers are also expanding other virtual services including the delivery of health coaching and emotional well-being support. These offerings are expected to increase in the next few years.
“Virtual care is here to stay,” said Kelsay. “The pandemic caused the pace to accelerate at an astronomical rate. And virtual care is now garnering growing interest and receptivity from both employees and providers who increasingly see its benefit.”
Another key trend for employer plans in 2021 is the expansion of access to virtual mental health and emotional well-being services. More than two-thirds (69%) said they provide access to online mental health support resources such as apps, videos, and articles. That number is expected to jump to 88% in 2021.
Other findings:
More employers are linking health care with workforce strategy: The number of employers who view their health care strategy as an integral part of their workforce strategy increased from 36% in 2019 to 45% this year.
On-site clinics continue to grow: Nearly three in four respondents (72%) either have a clinic in place or will by 2023. Some employers are expanding services — 34% offer primary care services at the worksite, and an additional 26% plan to have this service available by 2023.
Growing interest in advanced primary care strategies: Over half of respondents (51%) will have at least one advanced primary care strategy next year up from 46% in 2020. These primary care arrangements, which move toward patient-centered population health management emphasizing prevention, chronic disease management, mental health and whole person care are key focus areas for employers.
Employers remain concerned about high-cost drug therapies. Two-thirds of respondents (67%) cited the impact of new million-dollar treatments as their top pharmacy benefits management concern.
The Internal Revenue Service projects that lower levels of employment in the U.S. could persist for years, showcasing the economic fallout of the coronavirus pandemic.
The IRS forecasts there will be about 229.4 million employee-classified jobs in 2021 — about 37.2 million fewer than it had estimated last year, before the virus hit, according to updated data released Thursday. The statistics are an estimate of how many of the W-2 tax forms that are used to track employee wages and withholding the agency will receive.
Lower rates of W-2 filings are seen persisting through at least 2027, with about 15.9 million fewer forms filed that year compared with prior estimates. That’s the last year for which the agency has published figures comparing assumptions prior to the pandemic and incorporating the virus’s effects.
W-2s are an imperfect measure for employment, because they don’t track the actual number of people employed. A single worker with several jobs would be required to fill out a form for each position. Still, the data suggest that it could take years for the U.S. economy to make up for the contraction suffered because of COVID-19.
The revised projections also show fewer filings of 1099-INT forms through 2027. That’s the paperwork used to report interest income — and serves as a sign that low interest rates could persist.
There’s one category that is expected to rise: The IRS sees about 1.6 million more tax forms for gig workers next year compared with pre-pandemic estimates.
That boost “likely reflects assumptions with the shift to ‘work from home,’ which may be gig workers, or may just be that businesses are more willing to outsource work — or have the status of their workers be independent contractors — now that they work from home,” Mike Englund, the chief economist for Action Economics said.
HENRY KOTULA 