Opinion: The Millions of People Stuck in Pandemic Limbo

The Millions of People Stuck in Pandemic Limbo What does society owe immunocompromised people? Ed Yong The Atlantic

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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. ...