For millions, the pandemic isn’t over yet: ‘We are indeed stuck’

March 7, 2022 — As many people in the country prepare to take off their masks, socialize more closely and return to “normal,” not everyone can board that train. People living with illnesses or taking medications that make their immune systems not work as well to protect them from infection are still at risk from COVID-19.

Connie Taylor, 60, of Nashville, is just as tired as the next person from the COVID caution routines. “It’s getting old,” she said recently. Despite this, she has no intention of taking off her mask unless she is outside and no one can be seen, and she will maintain social distancing. Taylor was diagnosed with an aggressive form of breast cancer in August and is now receiving radiation after chemotherapy and surgery.

Laura Genoves, a family law legal professional in Bainbridge Island, WA, also keeps her mask handy and says she will assess the situation when she decides to wear it.

“To be honest, it depends. [But] in an indoor environment with the audience, I wear my mask,” she says. She takes immunosuppressants to control her rheumatoid arthritis.

Steve Silberman, a San Francisco science writer and New York Times bestselling author, also remains cautious.

“I have type 2 diabetes, I’m overweight, and I’m 64,” he says. “My husband is on medication for psoriatic arthritis.”

Silberman’s 84-year-old mother has dementia and is in a nursing home, where there was already a major COVID outbreak.

At least 7 million Americans are immunocompromised by health problems or drugs — and the pandemic isn’t over for them. Nor is it done for the millions of loved ones they associate with, who still have to be vigilant to help protect them.

As one woman said on Twitter, “We are indeed stuck.”

After explaining that her husband is on RA medication, she is at high risk, and that their children also have health problems, she recalls, “We’re trying to stay alive, that’s all,” while emphasizing the challenge they face. confronted: “His own parents think we are ridiculous.”

As the masks have come off for many, there has been a shift in mindset, says Arthur Caplan, PhD, director of the division of medical ethics at NYU Langone Medical Center in New York City. The public’s message to the immunocompromised, Caplan says, seems to be, “It’s up to you to protect yourself. Stop asking us to sacrifice for you.”

Efforts to protect the immunocompromised

New federal government initiatives point to the need to prioritize protection for the immunocompromised.

The national COVID-19 preparedness plan unveiled last week promises “strong support for the immunocompromised, including providing priority access to treatments and preventive interventions — pending additional funding from Congress — and ensuring access to boosters.”

During Tuesday’s State of the Union address, President Joe Biden announced a “test-to-treat” program, where promising COVID-19 treatments will be available on-site when someone tests positive. The Biden administration said it expects to open hundreds of these one-stop shops in pharmacies, health centers and other sites this month.

While that’s good progress, it doesn’t go far enough, immunocompromised advocates say.

More testing and treatments are welcome, as the availability of treatment “is still quite rare,” said Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress, an impartial policy institute. But “it makes pharmacies even more dangerous for the immunocompromised,” she says.

Another problem for immunocompromised people is reliance on the CDC’s recently relaxed guidance for masking, she says. The new guidelines take into account the number of hospital beds occupied by COVID patients, or capacity, new hospital admissions and new cases.

“When [community levels] are low to medium [with no strain on health care systems]the responsibility lies with the individual to protect themselves,” says Ives-Rublee.

On March 3, the CDC, which used those new stats to measure the threat of COVID-19, said more than 90% of people in the U.S. generally no longer need to wear face masks.

On the same day, representatives of more than 100 organizations championing the rights of the disabled, the elderly, children with special needs and others sent a letter to CDC Director Rochelle Walensky, MD, requesting that the new guideline be amended: “We urge urges the CDC to review the new guidelines to meet the needs of those at high risk and recommend that all wear N95s or the highest quality masks available in indoor public settings, including schools,” they wrote. they.

A series of reforms for nursing homes, where many residents are immunocompromised, were announced in late February and include ensuring facilities have enough trained staff to provide quality care, says Ives-Rublee. Other measures could help even more, she says, such as requiring N95 masks, not just any mask, at all medical facilities.

“School systems should also create guidelines for masking and support for those who may not be able to go.” [in person]whether they’re immunocompromised themselves or a relative,” says Ives-Rublee.

Greater coordination between the U.S. Department of Education and the White House in looking at best practices in schools would also improve matters, she says.

The risk is real

Experts have long known that COVID-19 vaccines don’t produce the same levels of protective antibodies in immunocompromised people, whether for a health condition or medical treatment.

In a study published in December in JAMA Internal Medicine, researchers evaluated more than 664,000 patients who had received at least one dose of a COVID-19 vaccine and found that those whose immune systems were not functioning normally had a higher rate of breakthrough infections. and worse outcomes after partial or full vaccination, compared to those without immune problems.

“The vaccine response just didn’t work that well in this immunocompromised [people]said Jing Sun, MD, PhD, an assistant scientist at the Johns Hopkins Bloomberg School of Public Health in Baltimore who led the study.

People in the general population who got breakthrough infections tended to have milder cases, the researchers noted. But immunocompromised people “can still get quite sick,” Sun says.

The researchers found that people with HIV, rheumatoid arthritis, and those who’ve had solid organ transplants, in particular, had a higher risk of breakthrough infections, she says.

Sometimes a person with a weakened immune system can’t even be vaccinated, says Karen E. Knudsen, PhD, chief executive officer of the American Cancer Society.

“We have 1.9 million new [cancer] diagnoses per year,” she says. “A person undergoing active treatment is often immunocompromised and may not even qualify for a vaccine. Those who qualified may not have received the full benefit. We would call them undervaccinated individuals.”

Advocacy by other organizations

In addition to the new national focus on the immunocompromised, organizations representing people with immunocompromised continue to push for protection. The American Cancer Society has recommended that all health care professionals work with cancer patients to educate them about their risk of contracting COVID.

“We have provided education through many channels, including social media, to raise awareness about the disproportionate risk of contracting COVID [if immunocompromised]and to take all possible precautions,” says Knudsen.

The Arthritis Foundation continues to push for greater access to telehealth services, especially for people who are immunocompromised, said Anna Hyde, a spokesperson for the foundation. The foundation has also monitored COVID drug shortages, she said, contacted drug manufacturers and the FDA, and kept patients informed of shortages.

A national approach should “continue to use and invest in widespread testing,” said Jorey Berry, president and CEO of the Immune Deficiency Foundation, which advocates for people born with rare lifelong conditions that prevent their immune systems from working properly, often as a result of genetic causes.

Like others, the foundation expressed concern about the new CDC monitoring guideline. “Less reliance on transmission statistics [as the new guidelines recommend] is likely to lead to a decrease in the number of tests, which will limit our ability to predict when new waves of infection will arrive, causing [immunocompromised] communities more vulnerable,” says Berry.

A largely mask-free world

Immunocompromised patients say they have found ways to reduce their risk and communicate their needs to others. Taylor, who is being treated for breast cancer, tries to visit stores during off-peak hours.

Even then, she finds that some people get too close, especially at the checkout. She is polite but determined. Saying, “Excuse me, if you could take a step back” usually works, maybe because of her looks, she says. “They can look at me and say I’m a cancer patient” because of hair loss.

After Genoves, who has rheumatoid arthritis, received the recommended fourth shot, someone questioned her decision. She has learned to answer simply and move on. She said to that person, “You know, everyone makes their own choices.” Then she remains silent.

Silberman’s solution is to stay vocal. “I will continue to wear masks, continue to post pictures of myself in masks and I will continue to point out the dangers to vulnerable populations like my mother,” he says.

Still, he recalls earlier times when he said people would think more about “the well-being of the whole.”

Sometimes that thought resurfaces. When Brigham Young University dropped its mandate for masks, Melissa Alcaraz, PhD, an assistant professor of sociology, emailed her class asking her to continue masking to help her protect immunocompromised loved ones. She was pleasantly surprised when she came to class. All students did.

Asking people to help you stay safe, rather than ranting about their selfishness can work, says Leonard Jason, PhD, a professor of community and clinical psychology at DePaul University in Chicago.

“When you ask people for help, it’s kind of disarming and it makes them more willing,” he says. “You don’t try to control them.”

You just ask for help. Still, the conversation may need to be ongoing, and the approach won’t work with the insensitive, he says.

“Asking others to help you is still morally fine, and I wouldn’t hesitate to do that in your immediate environment,” says NYU’s Caplan.

When you or your kids visit another household, “I think everyone should ask, ‘Are there any immunocompromised people in your house?'” and then take the precautions, Caplan says. “It’s like asking about a peanut allergy.”

While immunocompromised people may feel they have little control over how their community responds to the pandemic, “they have control over how they talk about it,” says Shannon La Cava, PsyD, a clinical psychologist and chief clinical officer of Cancer Support Community Los Angeles, part of a national network that offers help to people with cancer. Put the focus there, she says.

If they get pushback to continue masking, having a go-to response can make things easier. “Oh, I’m just following the doctor’s instructions,” she says. Or use humor, such as “This mask will last 20 years. I’m not giving up.”

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