'We're doing everything we can to survive': High-risk, disabled Americans feel forgotten

"My son looked up at me and he had tears in his eyes because he knew what it meant," Tasha Nelson said.

ByChristina Maxouris, CNN, CNNWire
Monday, February 21, 2022
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PHILADELPHIA -- Tasha Nelson's 10-year-old son held back tears when he heard the news. The two were in the car when the announcement came through the radio: Virginia's freshly sworn-in governor had signed an order attempting to ban mask mandates in schools.

"My son looked up at me and he had tears in his eyes because he knew what it meant. He said, 'Mom, does that mean I can't go to school anymore?'" Nelson said. "He said, 'Can't we let the governor know about kids like me? I want to go to school too.'"

Jack, a fourth-grader, has cystic fibrosis, a progressive genetic disease that causes persistent, damaging lung infections, making it harder to breathe over time. Like other immunocompromised, disabled and chronically ill Americans, Jack was taking measures, like masking, to dodge infections before the pandemic too. But with Covid-19 still rampant, it's not as easy. Even though he's vaccinated, the virus poses a serious, potentially deadly, risk to Jack. His 2-year-old brother, who is not yet eligible for the shots, is another concern.

Nelson is among a group of parents who sued Virginia Gov. Glenn Youngkin over that order, claiming it puts students who are immunocompromised or have disabilities at risk and violates the Americans with Disabilities Act. CNN has reached out to Youngkin's office for comment on the lawsuit.

Roughly two weeks after that lawsuit was filed, the governor signed a bill into law allowing parents to opt their children out of school mask mandates.

Tasha Nelson with her 10-year-old son, Jack, who is no longer attending school in person after Virginia effectively barred schools from implementing mask mandates.
Courtesy Tasha Nelson

Nelson is keeping her son at home again because of it.

"This whole pandemic, our culture, media (and) government has made it very clear to high-risk and disabled people that we are an acceptable loss," Nelson said. "We're doing everything we can to survive this pandemic too."

Covid-19 cases and hospitalizations are declining nationwide, but transmission -- how much virus is circulating in a community -- remains high in more than 90% of the United States, according to data from the US Centers for Disease Control and Prevention. The CDC still recommends everyone to mask indoors in areas of substantial or high transmission.

But public health experts are split on whether it's time to lift mitigation measures. Some say dropping protections at a time when Covid-19 numbers are so high is a political move rather than a public health one. Others say the downward trends justify those moves and note Omicron is milder than earlier variants for most healthy people.

As local and state leaders nationwide remove mask and vaccination rules, those at high risk for severe disease say doing away with protections now leaves them more vulnerable, especially as they, or family members, return to in-person work or school. And for some, Covid-19 vaccines are not as effective in staving off a severe bout with the virus, prompting the CDC to recommend a fourth shot for immunocompromised people 12 years and older in October.

Roughly seven million American adults are immunocompromised, the CDC estimates. While not all have conditions that leave them severely immunocompromised and vulnerable to severe Covid-19, about 61 million adults -- roughly one in four in the US -- have some type of disability, according to the agency. More than three million children had a disability in 2019, according to the US Census Bureau.

"Everyone knows someone who had cancer, everyone knows somebody who had a kidney transplant for one reason or another, or someone who's got Alzheimer's or someone who has a heart condition or someone who was born with a rare immunodeficiency," said Sara Willette, who has been in isolation with her husband in Iowa since the state reported its first case of the virus, some 700 days ago.

"The more protections that we remove, the less accessible the rest of the world becomes to people who are high-risk," Willette said.

Even though Willette is triple vaccinated and preparing for her fourth shot, catching the virus could be deadly. She has Common Variable Immunodeficiency Disorder (CVID), meaning her body does not produce protective antibodies to defend itself against pathogens like bacteria or viruses.

The couple considered leaving their home in Ames and moving to southern California, where stricter masking protocols could have helped protect her. But they ruled out the idea after California's governor lifted the indoor mask mandate for vaccinated people this month, citing a drop in infections.

Iowa's lawmakers are going even further -- a bill looking to effectively ban vaccine and mask mandates is making its way through the legislature. "We have to make a choice between staying alive and having a life," Willette said.

The high-risk people CNN spoke to said as the country eagerly looks to move on from the pandemic, they feel forgotten -- and worse, like they don't matter to the rest of the American public. Some say they feel like they've been left to adapt to a more dangerous reality, while others are now mapping out a permanently isolated lifestyle.

Families faced with impossible choices

In Wilmington, Massachusetts, Karen Yurek's family is navigating a tough balancing act. Yurek and her husband are both high-risk and on immunosuppressant medications. She has rheumatoid arthritis and he has multiple sclerosis. Both have received four Covid-19 shots and work remotely.

Their family was almost entirely isolated until last week, when their 6-year-old son, Billy, returned to school. Billy is vaccinated, and Yurek and her husband felt he could stay safe with the help of a universal masking requirement that was in place.

Karen Yurek's son, Billy, is seen here on his first day back to in-person school. He was excited to be back, Yurek said.
Courtesy Karen Yurek

Then, state officials announced they were lifting the mandate at the end of February. Yurek wrote to the Wilmington School Committee, urging them to keep masks mandatory to "protect the members of our community who don't have the luxury of 'normal' anymore."

The committee voted Wednesday to lift its mask mandate, posing a difficult dilemma for Yurek's family: pull their child out of in-person class or risk serious illness.

"It's really demoralizing," Yurek said. "It just feels like everyone's so focused on getting back to normal that ... they're forgetting about all of the really at-risk people. And if they're not forgetting about them, that they're just saying, 'Well, you're on your own.'"

Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, told CNN's John Berman on Thursday that lifting school mask mandates given the current transmission levels could push cases back up. "We've been to this show before," he said. "Where things came down, you pull back a little, and it bounces back."

When asked this month about immunocompromised Americans who feel left behind, CDC Director Dr. Rochelle Walensky said the agency is working to update its mask guidance so it is "relevant for the public, but also for the public who is immunocompromised and disabled," but offered no further details.

To help keep more people safe, mask requirements should depend on how much virus is circulating in a community, said Raymund Razonable, a professor of medicine at the Mayo Clinic and vice chair of the division of public health, infectious diseases and occupational medicine in Rochester, Minnesota. Shedding masks at a time the virus is still rampant and the threat of more variants -- including an Omicron subvariant -- loom is a risk, Razonable told CNN.

All but one of the remaining states that still had mask mandates in place -- Hawaii -- have announced plans to remove them.

Other local leaders have announced the end of vaccine measures too. The country's capital put an end to its indoor business vaccine requirement Tuesday. In the following days, Philadelphia and Boston also announced they were dropping vaccine requirements. In New York City, Mayor Eric Adams told employers to end work-from-home policies, saying in a news conference, "We need people back to work."

"Unfortunately, for the most part, we're seeing a lot of disregard for the immunocompromised and the disabled community," said April Moreno, a public health expert and founder of the Autoimmune Community Institute, a nonprofit research and advocacy organization. "We're hurting."

April Moreno, who was diagnosed several years ago with an autoimmune condition, says she feels like high-risk Americans are being disregarded.
Courtesy April Moreno

Kris Giere, a 42-year-old who has Type 1 diabetes and lives in Indiana, a state that ended its mask mandate last April, echoed the same.

"I'm tired of having to worry about how many disease vectors I'm in contact with," Giere said. "I'm on edge every day, because I don't get to go back to normal. There is no going back to normal for me."

'We don't have the luxury of pretending the pandemic is over'

When the CDC updated its isolation guidelines in December to say people can leave isolation five days after testing positive if their symptoms are gone or getting better, and to wear a well-fitted mask for 10 days, the agency also urged them to "avoid people who are immunocompromised or at high risk for severe disease," for at least 10 days.

But it can be hard to know when someone -- a coworker, a friend or a passerby -- is immunocompromised or high-risk, Moreno pointed out. It's why many conditions are known as "invisible illnesses."

"No one ... has given me a giant foam hat with an arrow saying 'immunocompromised' on it," said Matthew Cortland, who works on disability and health policy at Data for Progress, a left-leaning think tank. "The lengths we have to go to in order to mitigate, to some extent, the risk that society at large is just offloading onto us is absurd."

Cortland permanently works from home. But many friends who are also chronically ill and disabled don't have the same option. That's why public health measures remain critical, Cortland said, including global vaccination campaigns, widespread availability and use of high-quality masks, research into more adaptive personal protective equipment, improvements to indoor air quality, better testing procedures and sufficient treatments.

The US has increased its order for one of the key preventive therapies for the immunocompromised, Health and Human Services Secretary Xavier Becerra announced last week. But even with that boost, the country will only have enough of that monoclonal antibody treatment for less than a quarter of its immunocompromised population. And while there are other Covid-19 therapeutics that can help people including the severely immunocompromised, they are still also in short supply in many parts of the US and won't be more widely available until spring, the US Food and Drug Administration has said.

"There's not enough for the millions of immunocompromised patients," said Razonable. In his hospital, he said there is a "sufficient" supply to cover only "the highest risk group" of people.

Two years in, high-risk Americans are feeling traumatized and exhausted from the daily risk assessments and new hurdles that life in a Covid-era America comes with.

As Cortland puts it: "No one wants to actually be done with the pandemic more than disabled, chronically ill, and immunocompromised Americans. We just don't have the luxury of pretending the pandemic is over when it isn't. And it clearly is not."

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