Vulnerable to Covid, high-risk Americans feel left behind

The world of Denisse Takes is very small these days. She earns a living by producing songs from her living room, playing “Animal Crossing” online with friends, and leaving her home in Burbank, California, only occasionally to walk her dog.

Even as her social media feeds are flooded with friends and relatives returning to their normal lives, she sees no one except her husband, who donated his kidney in 2015 so that Mrs. Takes, 37, could get a suitable donor kidney in return.

The medication that keeps her immune system from rejecting the organ also suppresses it from making antibodies in response to a coronavirus vaccine. Her body is so bad at fighting off infection that she went to the emergency room with a common cold, she said. She is sure that Covid-19 would kill her.

But the isolation and depression — intensified as the rest of the world continues to face the pandemic seemingly without her — have also taken their toll. “Honestly, I keep trying to hold on for my husband,” said Mrs. Takes.

Millions of Americans with weakened immune systems, disabilities or illnesses that make them particularly vulnerable to the coronavirus have been living this way since March 2020, locking themselves at home, keeping their children out of school, and skipping medical care rather than exposure to it. risk the virus. And they’ve had overwhelming talk from politicians and public health experts who they believe are minimizing the value of their lives.

As Year 3 of the pandemic approaches, as public support for precautions plummets and governors of even the most liberal states move to throw off mask mandates, they face exhaustion and grief rooted in the sense that their neighbors and leaders are willing to accept them as collateral damage in a return to normalcy.

“I can still see your world, but I live in a different world,” said Toby Cain, 31, of Decorah, Iowa, who has lymphatic cancer and has undergone six rounds of chemotherapy and radiation during the pandemic, leaving her particularly vulnerable is for Covid19.

She lives alone, eats almost every meal alone, and scrolls through social media alone, complaining about the family weddings and friends’ babies she’s missed — at least until recently, when she quietly gave up all social media. “It’s like living behind a veil while the rest of the world moves forward,” she said.

More than seven million adults in the United States, or about 3 percent, are characterized by health professionals as being immunocompromised because of a disease, medication, or other treatment that weakens their bodies’ immune response, meaning diseases like Covid-19 could be more deadly for them. , and that vaccines offer less protection.

Tens of millions of Americans have at least one medical condition, such as asthma or diabetes, that puts them at greater risk for Covid. How much greater can vary widely; many live with few worries, while others at higher risk have felt the need to isolate themselves from society.

That’s not what Aaron Vaughn, now 12, of East Lynne, Mo., hoped for when he received a heart transplant in June 2020. Born with half a heart, he thought a transplant would give him more freedom after years of long hospitalizations. But with the virus still circulating, he hasn’t been to school or a restaurant since early 2020 — his last trip was to Pizza Hut, his favorite at the time — and doesn’t see anyone except his family and doctors.

“If I could go to school, that would be cool,” Aaron said, adding, “I can’t go anywhere but the hospital.”

He’s been vaccinated, but because of the drugs he’s taking to keep his body from rejecting the heart, his doctors have told him to pretend he isn’t. His siblings, also vaccinated, went back to school in person last month, but they wear masks, making them stand out in their conservative community, where roadside signs urge people not to get a vaccine against the coronavirus.

Updated

February 17, 2022, 5:51 a.m. ET

His parents said they received hate mail for asking neighbors to wear masks or get vaccinated — some of the same neighbors who gathered and prayed for Aaron when he needed a transplant. “It’s hard when people have become something political, you know, that could kill my son,” said his mother, Sarah Vaughn.

The rollback of mask mandates in states like New York, Illinois and California is the latest source of stress for vulnerable Americans, who fear the rest of the country is lifting precautions without thinking about how to keep them safe. The federal Centers for Disease Control and Prevention said last week it was too early to give up masks, in part because of the potential impact on vulnerable people, but the agency indicated Wednesday it would issue new guidelines soon.

“Masking everyone inside all the time is not a forever strategy,” says Dr. Megan Ranney, an emergency medicine physician and academic dean in the School of Public Health at Brown University, notes that immunocompromised people and others with vulnerabilities have always been at risk. But, she added, “We need to make sure we have stricter protections in places where people can’t choose whether or not to go there.”

The best long-term protection, said Dr. Ranney, is to keep overall infections low: The less the virus is circulating, the less likely a person is to be exposed. Vaccinating almost everyone would help, she said, but millions of Americans are refusing to do so, and not enough money has been made available for improved ventilation systems in public places.

The fear and anger many high-risk Americans feel came into the public eye last month in response to comments from CDC executive director, Dr. Rochelle Walensky. Citing a study that said only 0.003 percent of vaccinated people had died from Covid-19, she told ABC News that 75 percent of those who died despite vaccination “had at least four comorbidities, so basically these are people who are unwell.” were to start with.”

That drove Imani Barbarin, who has several conditions that put her at high risk, including cerebral palsy and diabetes, to create the hashtag #MyDisabledLifeIsWorthy on social media, sparking an outcry from other people angry at the government’s approach.

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“We really want to survive this,” said Ms. Barbarin, 31, “and we’ve seen our needs, our community and our voices completely ignored throughout this pandemic.”

After a deluge of criticism, Dr. Walensky at a meeting apologized to disability advocates and promised senior CDC officials would meet with them regularly. But Julia Bascom, the executive director of the Autistic Self Advocacy Network, who attended the meeting, said the comment reflected a familiar attitude: “That people with disabilities will inevitably die, and those deaths are more understandable and less tragic.”

dr. Cameron Webb, the senior policy adviser for equality to the White House’s Covid-19 Response Team, said the backlash had prompted the Biden administration to rethink its approach to people with vulnerabilities. “There is a lot of pain,” he acknowledged, adding: “We want to do better.”

He pointed to recent guidelines from the Department of Health and Human Services stating that patients should not be prioritized on the basis of disability, even when hospitals have crisis standards for care. He said the government would announce more actions this week, including a working group of lawyers.

Experts said there are ways government officials and the health care system can help vulnerable people without asking the rest of society to take strict precautions indefinitely.

Govind Persad, an assistant professor of health law at the University of Denver’s Sturm College of Law, suggested using federal money for pandemic relief to improve ventilation in businesses and schools, make prophylactic antibody treatments like Evusheld widely available for immunocompromised people. people, and manage the distribution of scarce antiviral drugs so that they go to the people most at risk, rather than those with the most resources to find them.

“It would be frustrating if states fail to protect people at higher risk, then try to think of things as an individual-individual trade-off between people wanting to maintain mask requirements rather than remove them,” said Dr. persad.

Ms. Cain, the cancer patient in Iowa, said the prophylactic antibodies seemed like her only chance to return to normal, but supplies are very limited even after Health Secretary Xavier Becerra announced on Monday that the United States would double its last order.

“It is extremely discouraging to see elected officials or other rulers minimizing or overlooking the severity of the crisis we are going through,” she said.

In rural Missouri, 12-year-old Aaron spends his time taking online classes, playing Minecraft or Call of Duty with friends, and making YouTube videos of him trying spicy foods. His friends keep asking when he will come back to school, but he knows it won’t be soon.

For his parents, the loss of support from those around them lingers. “People say, ‘You live in fear,'” says Chad Vaughn, his father. “And I’m like, ‘You’re damn right, I live in fear, and I’m tired of it.'”



This post Vulnerable to Covid, high-risk Americans feel left behind

was original published at “https://www.nytimes.com/2022/02/17/us/high-risk-covid-immunocompromised.html”