The world of Denisse Takes is very small these days. He makes a living producing songs from his living room, plays “Animal Crossing” online with his friends, and only leaves his home in Burbank, California occasionally to walk the dog. of the.
Although her social networks are flooded with friends and family returning to their normal lives, she sees no one except her husband, who donated his kidney in 2015 so that Takes, 37, could receive a kidney from a compatible donor.
Medication that prevents your immune system from rejecting the organ also prevents it from creating antibodies in response to a coronavirus vaccine. Takes commented that his body is so bad at fighting infections that he has ended up in the emergency room with common colds. She fears that COVID-19 will kill her.
However, isolation and depression (amplified as the rest of the world seems to get through the pandemic without her) have also taken their toll.
“To tell you the truth, I’m still trying to hold on for my husband,” Takes said.
Millions of Americans with weakened immune systems, disabilities, or illnesses that make them especially vulnerable to the coronavirus have lived like this since March 2020, sequestered at home, keeping their children out of school and skipping medical appointments so as not to risk exposure to the virus. virus. They are furious at the speeches of politicians and public health experts as they feel they minimize the value of their lives.
As the third year of the pandemic approaches, with public support for prevention measures plummeting and governors in more liberal states moving to get rid of mandatory face coverings, these people find themselves facing exhaustion and grief. , rooted in the feeling that their neighbors and leaders are willing to accept that they are collateral damage in a return to normality.
“I can still see her world, but I live in a different world,” said Toby Cain, 31, of Decorah, Iowa, who has lymphatic cancer and went through six rounds of chemotherapy and radiation during the pandemic, making her especially vulnerable to COVID-19.
She lives alone, cooks almost every meal by herself, and surfs social media alone, lamenting family weddings she’s missed and friends’ babies she hasn’t met, at least until she quietly left social media.
“It’s like living behind a veil while the rest of the world moves on,” he said.
More than 7 million adults in the United States, or about 3 percent, are classified by health professionals as immunosuppressed due to a disease, medication, or other treatment that weakens their body’s immune response, meaning that diseases like COVID-19 can be more deadly for them and that vaccines offer less protection.
Tens of millions more Americans have at least one medical condition, such as asthma or diabetes, that puts them at higher risk for COVID-19. The degree of risk can vary greatly. Many live without worry, while others at higher risk have felt the need to isolate themselves from society.
That’s not what Aaron Vaughn, 12, of East Lynne, Missouri, expected when he received a heart transplant in June 2020. Since he was born with half a heart, he thought the transplant would give him more freedom after years of long stints in the hospital, but as the virus continues to circulate, he hasn’t been to school or a restaurant (his last outing was Pizza Hut, his favorite at the time) since early 2020 and he sees no one but his family and doctors.
“If I could go to school, that would be great,” Aaron said, adding, “I can’t go anywhere but the hospital.”
He’s vaccinated, but because of the drugs he takes to keep his body from rejecting his heart, his doctors have told him to act like he’s not. His siblings, also vaccinated, returned to in-person school last month but wear masks, making them stand out in their conservative community, where roadside signs urge people not to get vaccinated against the coronavirus.
His parents said they had received hate mail for asking neighbors to wear masks or get vaccinated, some of them the same neighbors who came together and prayed for Aaron when he needed a transplant.
“It’s hard to see that people have made a political thing out of it that could kill my son,” said his mother, Sarah Vaughn.
The rollback of mandatory mask use in states like New York, Illinois, and California is the latest source of stress for vulnerable Americans, who fear the rest of the country will forget about prevention measures without considering how to keep them safe. The US Centers for Disease Control and Prevention (CDC) said last week that it was too early to abandon masks, in part because of the potential impact on vulnerable people, but the agency said on Wednesday that it would soon issue new guidelines.
The fear and anger felt by many high-risk Americans erupted in a public opinion last month in response to remarks by CDC Director Rochelle Walensky. Citing a study that said only 0.003 percent of vaccinated people had died from COVID-19, he told ABC News that 75 percent of those who had died despite vaccination had “at least four comorbidities, so really these are people who weren’t well, to begin with.”
That prompted Imani Barbarin, who has several high-risk conditions including cerebral palsy and diabetes, to create the hashtag #MyDisabledLifeIsWorthy on social media, sparking an outpouring of people angry about the government strategy.
“We just want to get through this,” said Barbarin, 31, “and we have seen total disregard for our needs, our community, and our voices throughout this entire pandemic.”
Following an outpouring of criticism, Walensky apologized to disability advocates at a meeting and promised top CDC officials would meet with them regularly, but Julia Bascom, executive director of the Autistic Self-Advocacy Network, who was at the meeting, said the comment reflected a familiar attitude: “That people with disabilities are inevitably going to die and that those deaths are more understandable and less tragic.”
Cameron Webb, senior equity policy adviser on the White House COVID-19 Response Team, said the backlash had prompted the Biden administration to review its approach to people in vulnerable situations.
“There is a lot of suffering,” he acknowledged and added: “We want to do better.”
He pointed to recent rules from the Department of Health and Human Services, according to which patients cannot be deprioritized based on their disability, even when hospitals enact crisis care standards. He said the administration would announce more actions this week, including an activist task force.