As the nation emerges from pandemic restrictions, some are left behind

Steve Chesley is home again playing in the backyard with his youngest daughter earlier this month. Steve is immunocompromised and received leukemia treatment during the pandemic, so he spent several months in an AirBnb away from his family, to minimize chances of infection. (Jenni Girtman for The Atlanta Journal-Constitution)

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Steve Chesley is home again playing in the backyard with his youngest daughter earlier this month. Steve is immunocompromised and received leukemia treatment during the pandemic, so he spent several months in an AirBnb away from his family, to minimize chances of infection. (Jenni Girtman for The Atlanta Journal-Constitution)

Those with compromised immune systems must be even more careful as others drop masks and safety measures

Warren Shiver feels lucky — for the moment. The airline Shiver will soon take for his vacation is still requiring masks, in spite of mask mandates dropping across the country. Without masks on all the passengers, Shiver and his wife wouldn’t board; his life is at stake.

Like an estimated population of more than 7 million Americans, Shiver is immune compromised.

Since a 2016 kidney transplant at Piedmont Healthcare, he needs drugs to suppress his immune system, and will for the rest of his life. He’s always had to watch out for infections, but COVID-19 brought a whole new level of danger for him.

As a relieved nation was told in March it was safe to unmask, Shiver and those like him were left behind as everyone around them moved on.

“Everybody’s tired of wearing a mask. I totally get it,” said Shiver, whose family must also mask to protect him. “But it is going to be a little harder.”

After learning that organ transplant recipients who have had COVID have had a 20-30% mortality rate, Shiver said, “I could be (fixating) on the worst case, but I’m treating it like I really should avoid getting COVID at all costs.”

Respiratory viral infections are often more persistent and severe in immunocompromised people. They may have an immune system weakened by a disease or suppressed by medications taken to help with certain diseases. Among them are people with HIV; cancer patients; organ transplant patients who must take immune suppressing drugs for their lifetime; and people with conditions like arthritis taking medications to reduce their body’s natural immune response.

ExploreWays to protect the vulnerable from COVID-19

Not only are they lacking a healthy immune system, but the COVID-19 vaccine also may not stimulate enough of an immune response in their bodies to be effective.

Their plight has never been well served in society at large, and that is one more gap in health care that has only been exacerbated by the pandemic. Now, the risk posed by the highly contagious coronavirus variants may require them, along with their families and close contacts, to further retreat from society for safety.

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A sign at the Georgia World Congress Center recommends that conventioneers mask up last August. As a relieved nation was told in March that it was safe to unmask, many immune compromised Americans have felt left behind as everyone around them moved on. (Christine Tannous / christine.tannous@ajc.com)

Credit: Atlanta Journal-Constitution

A sign at the Georgia World Congress Center recommends that conventioneers mask up last August. As a relieved nation was told in March that it was safe to unmask, many immune compromised Americans have felt left behind as everyone around them moved on. (Christine Tannous / christine.tannous@ajc.com)

Credit: Atlanta Journal-Constitution

Combined ShapeCaption
A sign at the Georgia World Congress Center recommends that conventioneers mask up last August. As a relieved nation was told in March that it was safe to unmask, many immune compromised Americans have felt left behind as everyone around them moved on. (Christine Tannous / christine.tannous@ajc.com)

Credit: Atlanta Journal-Constitution

Credit: Atlanta Journal-Constitution

“The sniffles for one person could be a life-threatening infection for someone who is immunocompromised,” Dr. Jacob Lemieux, Harvard Medical School instructor and co-lead of the Massachusetts Consortium on Pathogen Readiness’ viral variants program, told reporters at a briefing in March. “And we as a society need to find ways to return to normal life while protecting the vulnerable among us. I think that is going to be one of, if not the, most critical challenges over the next months to years.”

Yet as the omicron wave has subsided, officials from the federal level on down have stood firm saying the moment has come for a “new phase” — not necessarily ending all pandemic protections, but ending some of them and how often we use them.

For now, vaccination is more prevalent and antiviral drugs are becoming more available to treat COVID-19 infections. Pandemic restrictions are easing. Federal health officials have made it official: Masks are optional, unless the virus surges again.

ExploreFDA authorizes more adults to get 2nd COVID-19 vaccine booster

Shiver only hopes that people will be willing to pick up masks again, if needed.

“I have to be honest, given where we are now, as soon as the mask mandate is lifted, I’m not sure I’ll be getting on a flight with, you know, 200 of my newest, closest friends,” Shiver said.

Work, school and play

Shiver and other patients interviewed for this article stressed that they understand that the rest of the world has to move on, and they bear no ill will. They’re using whatever tools they can, like distancing, isolating and taking the new drug Evusheld, which can help immune-compromised people fight off coronavirus.

Just as there are things they’ll do to meet the moment, there are things others can do to help.

That includes keeping a mask around just in case, or being understanding when asked to put it on or keep distance from a person, even if they don’t look vulnerable at first glance. Places where people congregate or come and go can use portable HEPA air purifiers, which clean a percentage of virus particles from the air.

“The sniffles for one person could be a life-threatening infection for someone who is immunocompromised."

- Dr. Jacob Lemieux, Harvard Medical School instructor

Although the federal Americans with Disabilities Act prohibits discrimination on the basis of a disability, demanding that their office restore a mask requirement may not be possible for the immunocompromised, according to Rebecca Williams, information specialist at the Southeast ADA Center. Instead, the business might make a “reasonable accommodation,” such as finding an isolated place for the worker, she said.

Accommodations to protect the vulnerable are especially important because not everyone has the money or choice of jobs to robustly protect themselves.

Gail McCray knows some of them. McCray is both a survivor of the blood cancer myeloma and a community health educator at the Morehouse School of Medicine.

ExploreFrom February: CDC eases guidelines for mask wearing

She knows people who don’t have the money to have groceries delivered if they can’t safely go to the store themselves. McCray works with volunteers who sometimes fill that gap, but she’s most concerned by patients who fail to get help — “the stories we don’t hear about at all.”

They are just one example of a failure to see the full scope of the problem. The best estimate of immune compromised people in the U.S. relies on research from 2013, when medical researchers said 2.7% of U.S. adults were immunocompromised. That could be a significant undercount, said Dr. Amelia Langston, head of the transplant program at Emory Healthcare’s Winship Cancer Institute, because since then immune-suppressing drugs have been more widely prescribed.

Two Christmases, two birthdays

Steve Chesley, of Brookhaven, is a patient in Langston’s program. He is one of an estimated 447,000 cancer survivors in Georgia, according to the American Cancer Society. He’s still going through treatment for leukemia, which required a bone marrow transplant. He expects to continue taking drugs that suppress his immune system at least through late summer and possibly much longer.

At the height of his treatment, Chesley had no immunity whatsoever. Coached by his treatment team, his family was very careful, but somehow a cold got to him. He wound up hospitalized in the ICU for seven days.

Since then, he has now moved out of his home and into an Airbnb rental during his intense treatments — the most recent stay lasted 100 days. He’s missed two Christmases and two birthdays with his daughters, 5 and 7.

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Steve Chesley is immunocompromised and received leukemia treatment during the pandemic, so he spent several months in an AirBnb away from his family, to minimize chances of infection. He’s missed two Christmases and two birthdays with his daughters, 5 and 7. (Jenni Girtman for The Atlanta Journal-Constitution)

Credit: Jenni Girtman

Steve Chesley is immunocompromised and received leukemia treatment during the pandemic, so he spent several months in an AirBnb away from his family, to minimize chances of infection. He’s missed two Christmases and two birthdays with his daughters, 5 and 7. (Jenni Girtman for The Atlanta Journal-Constitution)

Credit: Jenni Girtman

Combined ShapeCaption
Steve Chesley is immunocompromised and received leukemia treatment during the pandemic, so he spent several months in an AirBnb away from his family, to minimize chances of infection. He’s missed two Christmases and two birthdays with his daughters, 5 and 7. (Jenni Girtman for The Atlanta Journal-Constitution)

Credit: Jenni Girtman

Credit: Jenni Girtman

Chesley last emerged from the Airbnb in February.

Soon after, his wife Jana was taking her first-grader to school the day DeKalb County Schools ended their mask mandate. As she drove up to the drop-off line, her heart sank: in the space of one day the masks that always surrounded her daughter at school had all but disappeared. “It was surprising how quickly it happened,” she said.

Their daughter has continued going to school and is one of maybe a quarter of students who wear a mask.

“Immunocompromised people are impacted so much differently, so much more severely in this pandemic,” Jana Chesley said. “I think many people who are in good health are just very unaware of what their immunocompromised neighbors and their families are going through—and the fear that we have every day.”

Some people fear they are on the road to having separate, parallel ways of living for those who moved on and those who can’t.

“I would ask the general public not to forget about us. It’s hard,” said Jana Chesley. “I miss the things I used to be able to do, too. But the most important thing for me is making sure my husband is alive.”