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When the rest of the world returned to normal, people who are immunocompromised were ‘left behind’

The night Hannah Lathen hoped to see “all the stars in the sky,” the fears that had been brewing for the first months of the pandemic were eclipsed by sounds from the outdoors — namely coyotes too close for comfort beyond her tent at Copper Breaks State Park

The camping effort did not come naturally — she didn’t consider herself “outdoorsy” before the pandemic, but it was necessary. Lathen, now 25, is one of those high-risk Americans for whom contracting COVID-19 could be a death sentence. On a low dose of chemotherapy to suppress her immune system, which for the past seven years has been attacking her, Lathen spent the months after March 2020 hermited within a newly rented solo apartment she’d pursued to avoid living with people. 

One consequence of the day-in, day-out rituals that isolation can bring, she said, is the difficulty in developing “core memories.” These come from novelty, not monotony. “2020,” she said. “I remember being home working, that one camping trip — and that’s about it. That’s about all that I can recall.”

For Lathen and millions of other immunocompromised Americans, attempts to avoid COVID-19 have lasted beyond spring 2020, beyond relaxed social distancing measures and the advent of the vaccine. And although their medical options for COVID-19 prevention have expanded as recently as December 2021, the struggle for their lives to be recognized as equally precious as someone who isn’t high-risk continues, at least for Lathen. 

“I know a lot of us feel forgotten,” she said. “Like we were left behind when the world went back to normal.”

Who is immunocompromised? 

The immune system had fascinated Jerry Simecka, regents professor of pharmaceutical sciences at The University of North Texas Health Science Center, since he took an immunology course in college. When he pursued his PhD in microbiology, his research focused on immunology. 

“The immune system has to be so dynamic that it can respond to anything from bacteria, viruses, environmental insults, cancer,” he said. “It does a really good job protecting your body.”

The system is a “complex network of cells, tissues and organs,” according to the National Library of Medicine. It manifests in myriad ways, like welts that crop up after a mosquito bite, the result of an influx of white blood cells to the area. A fever is one of the system’s methods for killing bacteria or viruses, which can struggle to survive at an elevated temperature.

When an immune system fails to properly protect the body, that person is considered immunocompromised, Simecka said. Because a weakened immune system can result directly from infections, like HIV, or from treatments for an ailment like cancer or an autoimmune disorder, “it’s hard to put a number” to how many people in the U.S. are immunocompromised, he said. 

A 2016 study from the Journal of the American Medical Association estimates a number in the millions. 

‘I was a normal, healthy teenager. And then one day I wasn’t.’ 

In her senior year at Southwest High School in Fort Worth, Lathen developed a sinus infection that wouldn’t go away. Over a year later, the inflammation multiplied — to her throat, her lungs, her urinary tract, casting pain throughout her body. 

Multiple trips to emergency rooms confirmed she had developed strep, mononucleosis, pneumonia and a urinary tract infection. “Everything was infected,” she said. Within days of her hospitalization, her kidneys began to fail. She underwent chemotherapy, dialysis, transfusions. Blood pooled in her lungs. Lathen was 19. 

A biopsy provided her diagnosis: granulomatosis with polyangiitis, an uncommon blood vessel disorder that hampers blood flow to certain organs. She was prescribed a mild form of chemotherapy that suppresses her immune system — years later, she still takes it. “If I want to be alive,” she said, “I have to take immunosuppressants.”

Before the pandemic, the disease complicated her life in strange, but not unduly burdensome, ways. “I can’t eat at a buffet anymore because I’m immunocompromised, and I’ve been advised not to get on a cruise ship,” she said. “And like, maybe don’t eat (uncooked) hot dogs — little things like that, because I can easily get an infection.”

The disease didn’t define her, Lathen said. She’d been introverted, yet politically active — volunteering, knocking on doors during campaign season — and a recent graduate from Texas Wesleyan. She could get by without telling people about her diagnosis.

Still, she remained vigilant. In late 2019, she heeded news from China about the circulation of a new, contagious virus. Her family told her not to worry. It wouldn’t make its way to the U.S.

Fourth shots and monoclonal antibody therapies

People like Lathen are more likely to suffer severe disease, even death, from COVID-19. Furthermore, their immune systems may develop an insufficient response to the vaccines. In Lathen’s case, that’s partly because immunosuppressants work against the vaccine, Simecka said. 

You’ve been exposed to COVID-19, or you’ve tested positive. Now what?

Read the Fort Worth Report’s resource guide for people in Tarrant County.

In August 2021, the U.S. Food and Drug Administration authorized a third dose of the typically two-dose vaccine series for certain immunocompromised people to supplement their immune response. In January, the Centers for Disease Control and Prevention updated the recommendation to include 5-year-olds and beyond. A booster shot, then, would serve as a fourth dose. 

The FDA authorized another prevention method for emergency use in early December 2021: a monoclonal antibody therapy called Evusheld. Unlike other monoclonal therapies, which COVID-19 patients receive after testing positive, Evusheld is meant to work preventatively. In an early clinical trial, Evusheld recipients were 77% less likely to contract COVID-19 within six months than placebo recipients. 

Still, the prevention is not a replacement for the vaccine, according to the FDA’s news release. The vaccine teaches the body to produce antibodies when it encounters future infections, Simecka said. Evusheld provides antibodies temporarily.

Also, because the treatment is new, it takes time for it to become widely available, Simecka said. The state health department is tracking supplies of Evusheld throughout Texas. Few sites have courses available in Tarrant County, according to the locator. 

The U.S. government allocates Evusheld weekly to the states, said Douglas Loveday, spokesperson for the Texas Department of State Health Services. Texas received nearly 6,000 Evusheld courses for the last full week of January, he said. 

Other treatments and options may exist depending on why someone is immunocompromised, Simecka said. He recommends people connect with their physicians for more personalized care. 

‘All the stars in the sky’

Lathen’s camping trip to Copper Breaks State Park in August 2020 did not fully escape the pandemic’s fingerprints. 

The expedition, a journey halfway to Amarillo, required groceries snagged curbside from Walmart — wiped down, and a travel bag brimming with cleaning supplies: paper towels, masks, hand sanitizer, soap. When Lathen and her boyfriend arrived at the campsite, they wiped the picnic table down (“probably the first time the table had ever been cleaned in its entire life”). 

That night, they saw the stars.

“It just felt like weight lifted — it felt freeing,” she said. 

Back at the campsite, Lathen’s photos preserved, as though in amber, that much-sought glimpse of the stars. “That one night,” she said, “I didn’t have to worry about humans.” (Courtesy photo | Hannah Lathen)

Lathen has continued to camp and roadtrip in the year-and-a-half since. She’s outdoorsy now. In her job as the communications and marketing associate for United Way of Tarrant County, she works from home. She takes care of plants. And, she hasn’t been sick since March 2020 — a rarity for her, one she attributes to the great care she’s taken to stay healthy. 

Still, her vulnerability to COVID-19 has become a mantle that affects every decision. She’s become “judgmental” about which people she can see, and which she can’t, depending on their lifestyle. And, she’s felt diminished by statements like this one from the director of the CDC: 

“The overwhelming number of (COVID-19) deaths, over 75%, occurred in people who had at least four comorbidities,” Dr. Rochelle Walensky told ABC News, referencing a recent study related to the efficacy of vaccination. “So really these are people who were unwell to begin with. And yes, really encouraging news in the context of omicron.”

For Lathen, sentiments like those communicate one thing: “My life doesn’t matter.”

In a pandemic world, her disease is part of her identity — and she doesn’t foresee it changing any time soon. She doesn’t want people to overturn their lives for her, but she does ask for empathy. 

Hannah Lathen shares what she hopes people learn from reading her story.

“Love your neighbor,” she said. “Love your immunocompromised neighbors. We would really appreciate it because, if people can think about what life was like in March, April, May of 2020, that’s still the life that we’re living over here. Things are still just as scary.”

Alexis Allison is the health reporter at the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her by email or via Twitter. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.

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