The millions of people stuck in pandemic limbo

What does society owe immunocompromised people?

||| FROM THE ATLANTIC via ORCASONIAN READER |||

when the coronavirus pandemic began, Emily Landon thought about her own risk only in rare quiet moments. An infectious-disease doctor at the University of Chicago Medicine, she was cramming months of work into days, preparing her institution for the virus’s arrival in the United States. But Landon had also recently developed rheumatoid arthritis—a disease in which a person’s immune system attacks their own joints—and was taking two drugs that, by suppressing said immune system, made her more vulnerable to pathogens. Normally, she’d be confident about avoiding infections, even in a hospital setting. This felt different. “We didn’t have enough tests, it was probably around us everywhere, and I’m walking around every day with insufficient antibodies and hamstrung T-cells,” she told me. And she knew exactly what was happening to people who got infected. One night, she found that in the fog of an earlier day, she had written on her to-do list: Make a will. “And I realized, Oh my God, I could die,” she said. “I just cried and cried.”

Two years later, COVID-19 is still all around us, everywhere, and millions of people like Landon are walking around with a compromised immune system. A significant proportion of them don’t respond to COVID vaccines, so despite being vaccinated, many are still unsure whether they’re actually protected—and some know that they aren’t. Much of the United States dropped COVID restrictions long ago; many more cities and states are now following. That means policies that protected Landon and other immunocompromised people, including mask mandates and vaccination requirements, are disappearing, while accommodations that benefited them, such as flexible working options, are being rolled back.

This isn’t a small group. Close to 3 percent of U.S. adults take immunosuppressive drugs, either to treat cancers or autoimmune disorders or to stop their body from rejecting transplanted organs or stem cells. That makes at least 7 million immunocompromised people—a number that’s already larger than the populations of 36 states, without even including the millions more who have diseases that also hamper immunity, such as AIDS and at least 450 genetic disorders.

In the past, immunocompromised people lived with their higher risk of infection, but COVID represents a new threat that, for many, has further jeopardized their ability to be part of the world. From the very start of the pandemic, some commentators have floated the idea “that we can protect the vulnerable and everyone else can go on with their lives,” Seth Trueger, who is on immunosuppressants for an autoimmune complication of cancer, told me. “How’s that supposed to work?” He is an emergency doctor at Northwestern Medicine; he can neither work from home nor protect himself by avoiding public spaces. “How am I supposed to provide for my family or live my life if there’s a pandemic raging?” he said. Contrary to popular misconceptions, most immunocompromised people are neither visibly sick nor secluded. “I know very few people who are immunocompromised and get to live in a bubble,” says Maggie Levantovskaya, a writer and literature professor who has lupus, an autoimmune disorder that can cause debilitating inflammation across the entire body.

As the coronavirus moves from a furious boil to a gentle simmer, many immunocompromised people (like everyone else) hope to slowly expand their life again. But right now, “it’s like asking someone who cannot swim to jump into the ocean instead of trying a pool,” Vivian Cheung, a biologist at the University of Michigan who has a genetic autoimmune disorder, told me. “I feel this pressure of jumping into the Pacific and not knowing if I can survive or not.”

Whether that changes depends on the accommodations society is willing to make. Ramps, accessibility buttons, screen readers, and many other measures have made life easier for disabled people, and a new wave of similar accommodations is now necessary to make immunosuppression less of a disability in the COVID era. Exactly none of the people I talked with wants a permanent lockdown. “It’s not like immunocompromised people are enjoying any of this,” Levantovskaya told me. What they do want—work flexibility, better ways of controlling infectious diseases, and more equitable medical treatments—would also benefit everyone, not just now but for the rest of our lives.

for more than three decades, Julia Irzyk has lived with lupus symptoms. She also has rheumatoid arthritis, a degenerative spinal condition, and heart problems. When she gets colds, they tend to progress to full-blown pneumonia, so even before the pandemic she was mindful about infections. She’d avoid big events and rarely ate out. When she flew, which she did infrequently, she’d wear a mask. For this story, I spoke with 21 people who are either immunocompromised or care for those who are; others were similarly fastidious pre-pandemic about washing their hands, getting their flu vaccines, and avoiding people who were clearly sick. Landon wouldn’t go to parties at the height of flu season. Cheung wore masks on flights and wiped down the surfaces around her. But none of them was living in seclusion. All of them had rich social lives.

COVID changed that. The new coronavirus forced them to go beyond their previous precautions, because it is deadlier than normal respiratory pathogens, can spread from people who aren’t obviously sick, and did so at breakneck speed. Compared with others, when immunocompromised people get COVID-19, they tend to be sicker for longer. Irzyk’s rheumatologist told her not to go out: If you get this, your heart and lungs won’t be able to take it. So she went seven months without leaving her home, and still spends most of her time there. She missed both her grandmothers’ funerals. She delayed important medical procedures, even as her lupus symptoms got worse because one of her treatments—hydroxychloroquine—ran out of stock after Donald Trump falsely touted it as a COVID cure.

COVID has also defined Harper Corrigan’s life. She was born in September 2019—nine weeks early, and with a rare brain malformation called lissencephaly. She has never played with another child even though, being sassy and funny, she really wants to. A week before the U.S. shut down in March 2020, Harper had to have a tracheostomy, leaving her even more vulnerable to respiratory viruses and, in turn, potentially deadly seizures. The Corrigans spent 11 months with her in the hospital. Even after her health had stabilized, they couldn’t find any nurses to help with home care, and the hospital wouldn’t discharge her. When they finally got home, they went into strict lockdown. Children with Harper’s condition aren’t expected to live to adulthood, so her mother, Corey, told me that her priority is to “squeeze a full life into an unknown amount of time.” But that requires the spread of the virus to slow, and vaccines to be authorized for children under 5.

The danger of the pandemic’s first fearful year still hangs over the heads of many immunocompromised people, even as those around them relax into the security of vaccination. Vaccines should substantially slash the risk of infection and severe illness, but many immunocompromised people barely respond to the COVID shots. At one extreme, about half of organ-transplant recipients produce no antibodies at all after two vaccine doses. Compared with the general vaccinated public, they are 82 times more likely to get breakthrough infections and 485 times more likely to be severely ill. Should they get infected, their risk of hospitalization is a coin flip. Their risk of death is one in 10. “Imagine walking around and being in society and thinking, If you give me COVID, I might have a 10 percent risk of dying,” Dorry Segev, a transplant surgeon at the Johns Hopkins University School of Medicine, told me. His patients are better off than unvaccinated people, “but not by much, despite all we’ve done.”

Other groups of immunocompromised people fare better after vaccination, but Segev estimates that a quarter are still insufficiently protected. And some people with autoimmune disorders cannot be fully vaccinated, because their initial doses led to severe flare-ups of their normal symptoms. Alfred Kim, a rheumatologist at Washington University in St. Louis who specializes in lupus, told me that 5 to 10 percent of his patients experienced these problems; so did two of the people I interviewed, both of whom declined further shots.

Many immunocompromised people are now stuck in limbo—unsure about how safe they really are, even after getting three shots and a booster, as the CDC advises. Scientific studies can hint at the average risks across large groups but offer little certainty for individuals. Sometimes, no studies exist at all, as is the case for Cheung, whose genetic disorder is so rare that it doesn’t even have a name. “As a doctor, I’m trained to parse scientific data, but I can’t parse my way to answers that don’t exist,” says Lindsay Ryan, a physician at UC San Francisco who has a neurological autoimmune disorder. “Could I actually define my risk of death if I got COVID? No, I really can’t. And that’s a hard thing to make peace with.”

Each individual infection is its own high-stakes gamble. I’ve spoken with immunocompromised people who got COVID and were fine. Others had mild initial illness, but then developed more severe long-COVID symptoms. Yet others are certain they’d fare badly: Chloe Atkins, a political scientist who works on disability and employment issues, has an autoimmune disease called myasthenia gravis, and “colds can immediately make it difficult for me to breathe, see, move, walk, or talk,” she told me. She knew two people with the same condition, both of whom died from COVID. She and others are facing the same arduous risk assessments that everyone else contends with—but heightened because of the greater possible costs of choosing wrongly. And while they wrestle with those uncertainties, the gulf between them and the rest of society is widening.

Over the past year, as many Americans reveled in their restored freedoms, many immunocompromised people felt theirs shrinking. When the CDC announced that fully vaccinated Americans no longer needed to mask indoors, simple activities such as grocery shopping became more dangerous for immunocompromised people, who were offered no advice from the nation’s top public-health agency. When Joe Biden said in a speech that unvaccinated Americans were “looking at a winter of severe illness and death,” “I felt like he was talking to me,” Cheung said. And when commentators bemoaned irrational liberals who refused to abandon pandemic restrictions, many of the people I spoke with felt they were being mocked for trying to protect themselves and their loved ones. “I already feel different from other people because of this situation,” Colleen Boyce told me; she donated a kidney to her husband, Mark, who is now immunosuppressed. “The thought that when I mask up, others might look at me like there’s something wrong with me is hard to handle.”

These changes were especially hard to take because, for a time, immunocompromised people caught a glimpse of something better. Beth Wallace, a rheumatologist at the University of Michigan, told me that many of her patients once accepted that viruses would regularly flatten them but have now realized that they don’t have to live that way. Cautious behaviors and flexibility around work meant that the flu practically vanished, and many immunocompromised people were actually less sick during the COVID era than before. And while they don’t want lockdowns to persist, they had hoped that the flexibility might. Sung Yun Pai of the National Institutes of Health told me that in the past, her patients—children who receive stem-cell transplants to treat genetic immune disorders—would simply have had to miss school. “In some ways, the whole world going virtual gave them better access to education,” she said. But remote options are now disappearing, and not just in schooling. Several immunocompromised people told me that their social world is shrinking, as friends who earlier in the pandemic hung out with them virtually are now interested only in face-to-face gatherings.

Work is becoming less flexible too. Finding and keeping jobs can be very hard for people with chronic illnesses such as lupus, which can leave them feeling powerless to advocate for themselves. With “close to no say about your working conditions, you can only do so much to protect yourself,” Levantovskaya, the literature professor, said. Several immunocompromised people have been told that they’re holding the rest of society back. In fact, it is the opposite: They’re being forced to reintegrate with no regard for their residual risk.

And perhaps worst of all, immunocompromised people began to be outright dismissed by their friends, relatives, and colleagues because of the misleading narrative that Omicron is mild. The variant bypassed some of the defenses that even immunocompetent people had built up, rendered several antibody treatments ineffective, and swamped the health-care system that immunocompromised people rely on. And yet one of Wallace’s patients was told by their sister that no one is dying anymore. In fact, people are still dying, and immunocompromised people disproportionately so. Ignoring that sends an implicit message: Your lives don’t matter.

Sometimes, the message becomes explicit. Several of the immunocompromised people I talked with have been told—sometimes by family members or former partners—that they are a burden on society, that they don’t deserve a relationship, that their dying would be natural selection. When Corey Corrigan was trying to decide whether to put Harper through another surgery, “a medical provider said, ‘Well, she’s not going to live very long, so it doesn’t really matter,’” she told me.

When Atkins, the political scientist, first heard that the other coronaviruses that cause common colds may have started as worse pathogens, she immediately thought about what that trajectory means for COVID. “Oh, people like me die off and the ones for whom it’s not a big impact carry on, and COVID becomes a cold,” she told me. “Part of me still feels that way, like there’s a sort of natural eugenics happening.” Eugenics—the concept of improving humanity by encouraging the “fittest” people to have children while preventing the “unfit” from doing so—is most commonly associated with the Holocaust, Aparna Nair, an anthropologist and historian of disability at the University of Oklahoma, told me. But in the 20th century, the concept had broad support from physicians and public-health practitioners, who saw it as a scientific way of solving problems such as poverty and poor health; it influenced the development of IQ tests, marriage counseling, and immigration laws. Eugenics is “often framed as part of a past that is over,” Nair said. “I think the pandemic has demonstrated that that’s not entirely the case.” Most Americans today would probably think the concept reprehensible and few are actively pursuing it. But when a society acts as if the deaths of vulnerable people are unavoidable, and does little to lessen their risks, it is still implicitly assigning lower value to certain lives.

COVID isn’t going away. With eradication long off the table, the disease will become a permanent part of our lives—another serious infectious threat added to a ledger already full of them. “Everyone who’s immunocompromised will have to figure out what their normal looks like—and it isn’t going to look like the normal for other people,” Ryan, of UC San Francisco, told me.

New treatments could help. Paxlovid, an antiviral drug from Pfizer, can reduce the risk of hospitalization and death from COVID by 88 percent, as long as patients are treated within five days of their first symptoms (although the NIH notes that the drug shouldn’t be given alongside certain immunosuppressants). Evusheld, a two-antibody cocktail from AstraZeneca, can reduce the risk of developing COVID, and though less effective against Omicron, it is still protective; the FDA issued an emergency-use authorization for the cocktail to prevent infections in immunocompromised people.

But these drugs are in short supply. The government has ordered only 1.7 million doses of Evusheld and distributed 400,000, which is woefully inadequate given that the U.S. has at least 7 million immunocompromised adults. Many institutions have only enough for their most severely immunosuppressed patients, “and there’s people like me who don’t even come close to meeting the cut,” UChicago Medicine’s Landon told me. Even patients who clear the high bar of medical need might not be able to get a dose quickly; some hospitals have had to run lotteries to decide who gets the drugs. “It’s truly not acceptable,” said Cheung, who got Evusheld only by pestering every medical contact she had—a route not available to people without connections, time, or privilege. For her and others, this problem compounds their sense that their government deems them dispensable, especially considering the far-greater effort put into producing and distributing vaccines. “There’s a drug that could prevent immunocompromised people who aren’t protected from vaccines from dying,” Ryan said. “Shouldn’t they have access to it before we decide that COVID belongs in the same category as the flu?”

Beyond equitable access to treatments, the people I spoke with mostly want structural changes—better ventilation standards, widespread availability of tests, paid sick leave, and measures to improve vaccination rates. Above all else, they want flexibility, in both private and public spaces. That means remote-work and remote-school options, but also mask mandates for essential spaces such as grocery stores and pharmacies, which could be toggled on or off depending on a community’s caseload. Without better, more available treatments or more structural changes, immunocompromised people will still depend on measures that prevent infections. Maintaining them would require, at times, that others make some allowance for their heightened risk. But in terms of what individual people can do for them, the most common request I heard was: Just have a heart. Regardless of your own choices, don’t jeer at us for being mindful of our higher risks, and definitely don’t tell us that our lives are worth less.

All of these measures would protect society as a whole from infectious diseases in general. They would also require some upfront investment in deciding how, exactly, they would work—should companies be required to offer remote work, when possible, for some duration? What’s the threshold for switching on mask requirements? These policies represent added expense and effort for our institutions, but this is the question that the U.S. now faces: COVID has added burdens to our society; who will bear their weight? Immunocompromised people often hear that the world didn’t make accommodations for them before the pandemic and shouldn’t be expected to do so after. But in the past, infectious diseases did prompt big social changes. A massive infrastructure was created to meet the yearly onslaught of influenza, including antivirals, annual vaccines, and a global surveillance system that tracks new strains. After the polio epidemics of the 1940s, “there was a wave of interest in remote schooling and an increasing number of people who used phones and other technologies to finish school and go to university,” Nair, the historian of disability, told me.

And in the late 20th century, the notion of disability itself began to shift. It used to be seen as an entirely medical problem—something that emerges from a person’s biology and can be fixed, Nair said. But the disability-rights movement ushered in a more social model, in which disability is as much about a person’s environment as it is about their body. People who use wheelchairs are more enabled in spaces with ramps and accessibility buttons on doors. Similarly, equitable access to Evusheld and flexible working policies would make immunocompromised people less disabled in an era where COVID is here to stay.

COVID will eventually become endemic—a term “with so many definitions that it means almost nothing at all,” as my colleagues Katherine J. Wu and Jacob Stern wrote. “The error I hear so often now is to use the notion of an endemic virus as a reason for abdication—to drop precautions quickly and not do the more important and difficult work of putting in place the societal measures that would make living with coronavirus more tolerable,” Ryan said. “We need to earn the ability to switch from emergency to endemic.” Fashioning a world in which being immunocompromised requires fewer compromises is possible and is not too onerous. And even if people reject the moral argument for creating such a world, there are two good, selfish reasons to build it nonetheless.

First, the coronavirus evolves rapidly in people with weakened immune systems, who also suffer longer infections and are contagious for more time. The Alpha variant of the first pandemic winter likely evolved in this way, and Omicron may have too. “It’s quite possible that a new variant that harms someone with a normal immune system could come from an immunocompromised person who they failed to protect,” Kim, the Washington University rheumatologist, told me.

Second, the immune system weakens with age, so while most people will never be as vulnerable as an organ-transplant recipient, their immunity will still become partly compromised. Respecting the needs of immunocompromised people isn’t about disproportionately accommodating some tiny minority; it’s really about empathizing with your future self. “Everyone’s going to deal with illness at some point in their life,” Levantovskaya said. “Don’t you want a better world for yourself when that time comes?”