April 6, 2022 – Two years after the outbreak of the COVID-19 pandemic, Heather Benjamin is considering purchasing a button with the inscription “High risk, please keep your distance.”
Benjamin, 40, was diagnosed with lupus — an inflammatory autoimmune disease — in 2013. Because of her immune deficiency, she, her partner and their six-year-old son moved from Brooklyn to Burlington, Vermont, in the beginning of the COVID-19 boom, on the lookout for an area that isn't as crowded.
Vermont has historically low coronavirus case numbers and greater than 80% of the population are fully vaccinated. But just last week, the state – like Michigan, Connecticut and others – experienced a Increase in positive test rates And new casesone month after the state relaxed his recommendations for masking and isolation.
To protect their health, Benjamin and her family have exercised extreme caution throughout the pandemic, avoiding indoor gatherings, air travel, and indoor dining during COVID-19 surges and peaks.
“When my child's school changed their mask requirement, my risk increased exponentially, even though we hadn't changed our own behavior at all and COVID certainly hadn't changed,” says Benjamin, who isolated at home together with her family after a student at her son's school tested positive. Her son continues to wear a mask at college, regardless that the varsity has decided to encourage students and teachers to forgo their masks when possible.
For Benjamin and other immunocompromised Americans, a brand new reality is starting to sink in even within the country's most progressive states: People are putting the coronavirus behind them.
This change in attitudes became much more apparent when Benjamin recently took her son to a dermatologist's appointment. Most people, including medical staff, weren’t wearing masks.
“It's just really scary when you're an immunocompromised person and you don't know what to expect and how to prepare for it,” she says. “We have to constantly re-evaluate: 'Do we think we can do this safely?'”
Getting a button to publicly discover herself as a high-risk person would never have been an option for Benjamin at some other stage of the pandemic. But recently, she's felt like she needed to reveal her health concerns from the beginning to ease social pressure or gently encourage the maskless people round her to regulate their behavior.
When someone is immunocompromised or immunosuppressed, their body has a harder time fighting infections and diseases. If a weakened immune system is the results of a chronic disease similar to lupus, rheumatoid arthritis or asthma, that person's immune deficiency is everlasting. However, if someone is undergoing treatment for a disease similar to cancer, the immune deficiency could also be temporary.
A Study 2021 found that 2.8% of a gaggle of three million insured Americans between the ages of 18 and 64 were prescribed immunosuppressants similar to prednisone and other steroids.
There is a profound discrepancy between “the reality of the virus and what society is willing to do to mitigate its risks,” says Dr. Jorge Salinas, an infectious disease expert and professor at Stanford University.
“A large part of the land has subsided… But we should actually be preparing quickly for the next wave in the tidal periods – between the waves. It is almost guaranteed that there will be one.”
Neurologist Vivian Cheung, a professor of human genetics on the University of Michigan School of Medicine, says this loosening of public attitudes and safety measures is even seeping into academic medicine.
Cheung suffers from a rare genetic disorder, an unnamed mutation of the LTBP4 gene, which causes her immune system to fail.
That's why it was so confusing for her, each personally and professionally, when she learned that to be able to participate as a speaker at an upcoming conference, she would either must attend in person together with 1000’s of others or contact a conference administrator directly and explain why she desired to present virtually. Permission to present virtually would only be granted under “exceptional circumstances and on a case-by-case basis,” the Conference venue says.
“I’m a tenured professor, so it’s something I disclose [my immunocompromised status]versus a student who just desires to attend the conference or present a poster,” Cheung said. “They shouldn't must feel the pressure of disclosure.”
Cheung has chosen not to register for the virtual conference. While she is seeing patients in person, she continues to conduct her research remotely, avoiding indoor dining and limiting the time she spends indoors with others as much as possible.
It is no secret that even as the number of COVID-19 cases declines, people with weakened immune systems who contract the virus are more likely to become seriously ill. Immunocompromised people who can be fully vaccinated are also more likely to suffer Breakthrough infections.
At the beginning of the pandemic, 26-year-old Annabelle Dowd lived in strict isolation with her Chicago roommates until she returned to her restaurant job in October 2020. Dowd has type I diabetes, but she couldn't afford not to work. Over time, she felt that no matter how strictly they followed COVID-19 safety protocols, people – including other immunocompromised members of her community – were still getting sick.
Dowd, now a doctoral student at Northwestern University's Medill School of Journalism, felt safe attending more events after being fully vaccinated against COVID-19. While she still wore a mask at indoor events, she thought differently about the pandemic than she used to.
“I’ll at all times do what I personally can, I’ll get vaccinated, I’ll get tested usually and I’ll isolate myself during big waves or intense outbreaks, but I is not going to never go to a celebration again,” says Dowd. “Just like I do with drinking or eating ice cream occasionally – those are things you may do with diabetes, but you don't do them on a regular basis.”
As the pandemic progressed, she noticed that her fear of illness was not as pronounced as that of most people around her. She realized that she was already used to living with a constant threat to her health, and that the threat of COVID-19 felt to her like another uncontrollable factor on a list of other health problems.
Dowd was infected with the virus twice, during the Delta and Omicron waves. Since her first infection, she has suffered from symptoms of long Covid, the most notable of which are respiratory problems.
After 26-year-old Nelson Peralta suffered a relapse of leukemia in June 2020 and underwent a bone marrow transplant over a year later, he was unable to get vaccinated as quickly as everyone else.
Like Dowd, Peralta, who was first diagnosed with leukemia at age 16, is used to being relentless about his health and safety. For much of the pandemic, that has translated into exercising extreme caution and living by the strictest safety protocols in his each day life.
Finally, he received the Johnson & Johnson shot before his transplant and one other dose of the vaccine a couple of months after his recovery, in addition to a round of Evusheld, a monoclonal antibody treatment for immunocompromised people.
While Peralta has remained cautious, the time he spent within the hospital for treatment and the months he spent at home recovering from his transplant have given him a more balanced view of what life during COVID-19 may appear like for him on this latest phase.
He lives in Los Angeles and enjoys eating indoors and attending a couple of concert events while vaccinations are required. While these activities include some anxiety, Peralta says, he feels encouraged to enjoy himself so long as he feels healthy enough to accomplish that. Still, he acknowledges that his situation is different in some ways from the experiences of other immunocompromised people.
“My status as an immunocompromised person comes and goes. Other people are immunocompromised their entire lives, which exacerbates my position: I know I'm getting healthier. And that changes the way I make decisions,” says Peralta.