Return to pre-pandemic normalcy not yet on the horizon for many immunocompromised Americans

March 4, 2022

Elena Hung and her 7-year-old daughter, Xiomara, of Maryland. Xiomara was born with a number of medical conditions affecting her airway, lungs, heart and kidneys. – Elena Hung

(NEW YORK) — When coronavirus shut down the nation nearly two years ago, 7-year-old Xiomara Hung and her family were quick to retreat to their Maryland home in an effort to help curb the spread of the virus and avoid any potential infection.

Like many children across the country, Xiomara and her brother were forced to trade their backpacks for laptops as the virus forced schools online.

However, unlike most students, who are now back to in-person schooling, Xiomara, who was born with a number of medical conditions affecting her airway, lungs, heart and kidneys, has not yet been able to return. Because she is immunocompromised, her parents have been faced with the difficult decision to keep her away from her peers in virtual schooling while the virus is still circulating.

“It’s been really hard,” Xiomara’s mother, Elena Hung, told ABC News. “But in a way, it wasn’t a hard decision. Do we keep her safe and alive, or do we send her to school? The goal is absolutely her to go to school, but I have to weigh that against her safety. There’s no point in going to school, if she’s going to get sick, and she might end up in the hospital.”

The consequences of losing that in-person interaction has been “extremely difficult” as “they are missing out on very important social development.”

Although the omicron surge appears to be steadily subsiding in the U.S., for families like Xiomara’s, the pandemic feels far from over.

“The past two years has been very difficult for us, and even now, more so in 2022, as we are seeing mask mandates lifted, we are seeing fewer protections for people who are disabled and immunocompromised and chronically ill. In so many ways, we feel like we are being left behind as people are trying to return to ‘normal,'” said Hung, who co-founded the organization Little Lobbyists, which aims to advocate for children with complex medical needs.

Across the country, dozens of states and cities, led by both Republicans and Democrats, have moved rapidly in recent weeks to declare an end to COVID-19 restrictions.

“With more New Yorkers getting vaccinated, and the steady decline over the past several weeks in cases and hospitalizations from Omicron, we are now entering a new phase of the pandemic,” New York Gov. Kathy Hochul said in a statement this week upon lifting the mask mandate for schools.

Hochul’s message of a nation moving on in its fight against COVID-19 echoes that of many state and local legislators, as well as President Joe Biden, who, during his State of the Union address Tuesday, declared that “COVID-19 no longer needs to control our lives.”

However, despite the president’s suggestion that “we’re leaving no one behind or ignoring anyone’s needs as we move forward,” many immunocompromised Americans say they indeed feel “left behind.”

“We do lead lives that make us look at life and death differently, but we also have normal life,” Hung said. “Xiomara is a kid, who does all the things that a typical 7-year-old does. Her normal is the same normal. But she can’t accept that normal, if anybody’s going back to school, not wearing a mask.”

‘Immunocompromised patients matter’

With pandemic “fatigue” strong, many Americans have been vocal in their hope to leave COVID-19 behind and return to a long desired sense of normalcy.

Last week, the Centers for Disease Control and Prevention unveiled their new plan for determining COVID-19 risk in communities, and updated its recommendations for mask-use.

Under the new risk levels, approximately 90% of the U.S. population now lives in areas deemed to have low or medium threats to their local hospitals, and thus can stop wearing masks.

“Americans in most of the country can now be mask-free,” White House coronavirus response coordinator Jeff Zients said in a briefing on the plan Wednesday.

The administration has also pledged to take key steps to help individuals who are disabled, including those who suffer from weak immune systems.

“We will continue to address the specific needs of seniors, people living with disabilities and people who are immunocompromised. These are the Americans who need our focus and attention right now,” added Health and Human Services Secretary Xavier Becerra.

However, doctors say those at highest risk should still be wary of taking off their masks.

Across the country, about 2.7% of the population, according to the CDC, are living with weakened immune systems because of a variety of causes, such as active cancer treatment, organ or stem transplant or primary immune deficiency diseases.

For some of these 7 million high-risk Americans, COVID-19 has been “devastating.”

“I see the devastating effects of this viral infection every day as it leads to death and disability of my patients who were previously leading healthy, active lives,” Dr. Jeannina Smith, medical director of the transplant and immunocompromised host service at the University of Wisconsin, told ABC News. “Omicron was not mild for our patients.”

COVID-19 has been the “leading cause of death” in transplant programs at the University of Wisconsin for the last two years, Smith said.

“Immunocompromised patients matter,” Smith stressed. “The new CDC guidelines have absolutely left my patients behind, effectively abandoning them. The goal of the new cutoffs for COVID activity only focus on keeping hospitals from being overwhelmed, with a stated understanding they will not prevent infection. My patients are still dying of COVID despite every medical advance.”

Vaccines have been shown to be less effective for people living with weakened immune systems, putting them at greater risk of serious COVID-19 disease and death compared to the general population.

There are also many Americans with other chronic or long-term conditions, such as diabetes or asthma, who could become quite ill if they were infected.

“COVID-19 remains a threat for most vulnerable Americans — poor, rural patients, minorities, patients that are old or with comorbidities, immunocompromised, or with cancer and the vaccine-hesitant. Many patients will have one or more of these categories,” Dr. Jaime Imitola, the director of UConn Health’s division of multiple sclerosis and translational neuroimmunology, told ABC News.

Getting back to ‘normal’ right now may not be possible for everyone

Vulnerability to infection is a great concern to many immunocompromised Americans. However, many are also anxious about facing increased isolation as states lift mask mandates and other pandemic safeguards.

“Everyone wants to go back to normal but that normal sacrifices our normal,” said Christa Xavier, 30, of Pennsylvania.

Xavier, who suffers from fibromyalgia, was also a former smoker, putting her at increased risk of severe disease. Prior to the pandemic, she worked for 10 years in retail, a career that she has been forced to abandon due to her condition.

“It’s just been extraordinarily difficult to find work that is remote. That’s really tough,” said Xavier.

Now an artist, Xavier feels confined to her home as she fears potential infection with people taking off their masks.

“It basically feels like just being left behind. It’s like everyone is kind of looking at me like, ‘Well, you really should maybe just get back to normal.’ I don’t think anyone really understands what it’s like,” Xavier said. “I could just go outside and within two weeks, I could be dead. … I’m not risking that to go to Target.”

A new KFF poll released this month found that while nearly two-thirds of Americans reported they are worried about the potential economic and social repercussions of retaining COVID-19 restrictions, 61% of those surveyed also said that they are concerned that the move to end mitigation efforts will put immunocompromised people at increased risk.

Even with the Biden administration’s promise that treatments and free high-quality masks will be made widely available to those at high-risk, Xavier said that as mitigation measures drop, she fears a potential viral resurgence should a new variant emerge.

“It felt like it’s just, ‘Well, you guys can wear masks,'” she explained, in reference to the president’s remarks at this year’s State of the Union. “That’s not going to be enough if we have a deadlier variant, or more-contagious variant.”

With 2022 midterm elections approaching, governors have picked up on the fact that Americans are tired of the pandemic’s restrictions, particularly the mask mandates, Xavier argued, which advocates fear may severely affect marginalized communities.

“I think a lot of the politicians … have agendas,” said Xavier. “They want to make it look like things are going awesome, and it kind of feels like immunocompromised people are getting sacrificed.”

COVID-19 must still be monitored closely to keep vulnerable safe, experts say

Health experts fear that the waning omicron surge could be erroneously equated with the end of the epidemic, and thus, the relaxation of COVID-19 safety measures could lead to the emergence of vaccine-escaping variants, potentially leading to another surge of infections.

“There are still emerging threats, like long COVID-19, COVID-19 reinfections and new mutants that will escape the immune system,” Imitola said. “Reducing the restriction will have a domino effect in complacency that will affect the patients that are at higher risk. During this winter, we have seen an increase in the number of cases of COVID in patients that are immunocompromised due to the reduction of mask-wearing and no vaccination and putting the guard down in social gatherings.”

Smith stressed that authorities must continue to monitor a wide array of COVID-19 metrics, not limited to hospital capacity, in order to prevent infections in the vulnerable. In addition to high-quality free masks and equitable access to home testing to identify infection early, Smith advocated for “safe spaces” to be created in grocery stores, pharmacies and schools where everyone is masked to protect the immunocompromised.

Health experts also urge businesses to continue to keep the safety immunocompromised staff in mind, so they can feel comfortable at work and are not forced to work remotely.

“I understand that we are all tired, and I am not asking people to stop their lives,” said Hung, but waiting a little longer before doing away with mitigation efforts might “save someone’s life.”

Immunocompromised Americans are an integral part of the community and workplaces, and their absence would be keenly felt, Xavier added.

“We are not optional members of society,” Xavier said. “You can’t just tell us to shut ourselves away and wear a mask forever. Our ‘normal’ matters just as much as everyone else’s.”