Why COVID-19 Becoming Endemic Is Little Comfort for People With Chronic Conditions

As the crush of infections from the Omicron variant pushes the U.S. closer to population immunity, many health officials and politicians have begun using the term “endemic” as a synonym for some semblance of normalcy. But as media outlets churn out article after article about “learning to live with COVID-19,” one segment of the country that has felt ignored from the start of the pandemic has once again been left out of the conversation.

For the millions of Americans who are immunocompromised or otherwise at higher risk of poor outcomes from infection, a “return to normal” is not possible as long as the virus is running rampant. Likewise, health care workers and other essential workers (who are largely people of color) will continue to bear the brunt of exposure as the rest of the country decides what rate of infection and death is acceptable in exchange for a return to normal.

Chronically ill people, individuals living with disability, and those who care about them are increasingly speaking out.

In an opinion piece for The Washington Post, Jon Gluck, editorial director of special projects at Medium, explores how COVID fatigue poses a grave threat to immunocompromised people like himself, whose treatment for a rare bone-marrow cancer has left his immune system weakened. “As the public health saying goes, we may be done with COVID, but COVID isn’t done with us,” writes Gluck. “Until it is, our choice is to follow the rules or put everyone, especially the most defenseless among us, at increased, and undue, risk.”

Freelance writer Marisa Kabas, who shared on her Twitter account that she recently had brain surgery and is seeking to avoid getting COVID-19 at all costs, wrote, “People saying that you need to accept that everyone’s going to get COVID at some point have never dealt with chronic illness and it shows.”

When you juxtapose these concerns and the lengths some vulnerable Americans are going to protect themselves during the pandemic with calls for us all to learn to live with COVID, two Americas appear: one in which people are exhausted with COVID precautions and ready to “live like it’s 2019” and another whose ability to survive and function in society depends on those very precautions.

It’s evident in the recent New York Times opinion piece “Waiting for Omicron,” in which columnist Michelle Goldberg discusses wanting to “get Omicron just to get it over with” after her young son tests positive. While Goldberg admits she occupies a somewhat privileged position — as someone healthy, vaccinated, and boosted, the odds of staving off a hospitalization or death are in her favor — the ambivalence she displays towards getting infected contrasts sharply with the anxiety and desperation of those with less optimal protections.

In a recent Twitter thread that went viral, a self-proclaimed public health nurse and medical geographer from the Street Medicine Team of Berkeley Free Clinic broke down the definition of endemic, how it’s been applied to other health crises such as HIV and tuberculosis (which continue to devastate vulnerable populations around the world but elicit less urgency in the U.S.), and the assumptions that equate the ongoing vulnerability of certain groups of people with normalcy.

“If we get to the point where COVID is like HIV, where your privilege determines whether you get to ignore it, will that mean the pandemic is over?” the thread continues, adding that “this crisis won’t be over until it’s over everywhere.”

If the themes of this piece sound familiar, it’s because I and other immunocompromised people have been sounding the alarm since the beginning of the pandemic. Long before terms like endemic were bandied about in articles and political speeches, the American public at large has struggled to take seriously — or maintain that seriousness — about a virus that posed the most risk to sick and elderly people.

Even now, governors from states who were the most aggressive in pursuing pandemic precautions are signaling changes to their protocols, announcing plans to let statewide mask mandates expire, and considering an imminent end to mask mandates in schools. Other states have fallen back on government-run contract tracing or abandoned such efforts altogether.

But as Omicron and the variants to come before will likely prove, idyllic fantasies about a return to a pre-pandemic lifestyle will remain out of reach as long as millions are vulnerable to serious illness from the virus and large swaths of the American public fail to do the bare minimum in their power to prevent uncontrolled spread.

Surges will continue to stretch hospitals and their staff to their breaking points, forcing delays in the treatment of a host of chronic and acute conditions. Variants will continue to emerge, some of which may evade vaccines and immune responses. Countless patients will develop long COVID.

So how do we balance the inevitability of pandemic fatigue with sensitivity and care to those still vulnerable for the foreseeable future? A thoughtful opinion piece from The New York Times, written by two physicians, may offer a road map. Their recommendations are wide-ranging: evidence-based precautions for those interacting with the immunocompromised (get tested, wear masks), more information from policymakers and doctors on steps the vulnerable and their health care teams can take to protect themselves (additional boosters and timing, antibody testing), access to pre-exposure monoclonal antibody treatments, and more.

The most significant aspect of the authors’ recommendations is that no one entity or group of people shoulders all the responsibility: it requires a full-court press. Until everyone shoulders the responsibility of curbing COVID-19’s relentless spread, dreams of normalcy will continue to elude us.

Likewise, until health equity and racial equity are truly incorporated into our health systems, future pandemics promise to play out the same way.