For Millions, the Pandemic Isn’t Over: ‘We Are Indeed Stuck’

March 7, 2022 — As many individuals within the nation put together to ditch their masks, mingle extra carefully, and return to “regular,” not everybody can board that prepare. People who reside with illnesses or take drugs that make their immune programs not work as effectively to guard them from infections are nonetheless in danger from COVID-19.

Connie Taylor, 60, from Nashville, is as drained as the following individual of the COVID-cautious routines. “It’s getting outdated,” she stated not too long ago. Despite that, she has no plans to ditch her masks, until she is outdoor with nobody in sight, and can proceed to social distance. Taylor was recognized with an aggressive type of breast most cancers in August and now could be getting radiation remedy after having chemotherapy and surgical procedure.

Laura Genoves, a household regulation authorized skilled in Bainbridge Island, WA, can be maintaining her masks helpful and says she is going to gauge the scenario when deciding whether or not to put on it.

“To be trustworthy, it relies upon. [But] in an indoor setting with the general public, I will probably be carrying my masks,” she says. She takes immunosuppressants to handle her rheumatoid arthritis.

Steve Silberman, a San Francisco science author and New York Times bestselling writer, additionally continues to watch out.

“I’ve kind 2 diabetes, I’m obese, and I’m 64,” he says. “My husband takes medicines for psoriatic arthritis.”

Silberman’s 84-year-old mother has dementia and is in a nursing facility, which already had a major COVID outbreak.

At least 7 million Americans are immunocompromised due to health conditions or medications — and for them, the pandemic isn’t over. Nor is it done for the millions of loved ones they interact with, who must still be vigilant to help protect them.

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

After explaining that her husband is on RA medications, she is at severe risk, and their kids have health issues too, she puts out the reminder, “We are trying to stay alive, that is all,” while highlighting the challenge they face: “His own parents think we are being ridiculous.”

As the masks have come off for many, there’s been an attitude shift, says Arthur Caplan, PhD, director of the Division of Medical Ethics at NYU Langone Medical Center in New York City. The message from the public 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 note the need to prioritize protections for the immunocompromised.

The National COVID-19 Preparedness Plan unveiled last week says it promises “strong support for the immunocompromised, including providing prioritized access to treatments and preventive interventions — pending additional funding from Congress — as well as ensuring access to boosters.”

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

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

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

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

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

On March 3, the CDC, using those new metrics for measuring the threat of COVID-19, said that more than 90% of people in the U.S. generally don’t need to wear face masks anymore.

On the very same day, representatives from more than 100 organizations advocating for the rights of the disabled, the elderly, children with special needs, and others sent a letter to CDC Director Rochelle Walensky, MD, asking for a change to the new guidance: “We urge the CDC to revise the new guidance to address the needs of high risk people and recommend that everyone wear N95s or the highest quality masks available in indoor public settings including schools,” they wrote.

A set of reforms for nursing homes, where many residents are immunocompromised, was announced in late February and involves making sure facilities have enough trained staff members to give quality care, among other measures, Ives-Rublee says. 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 guidance for masking and support for individuals who may not be able to go [in person], whether they are immunocompromised themselves or a family member is,” Ives-Rublee says.

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

The Risk Is Real

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

In a study published inJAMA Internal Medicine in December, researchers evaluated more than 664,000 patients who had gotten at least one dose of a COVID-19 vaccine and found that those whose immune systems weren’t working normally had a higher rate of breakthrough infections and worse outcomes after partial or full vaccination, compared with those without immune issues.

“The vaccine response was just not working as well in these immunocompromised [people],” says Jing Sun, MD, PhD, an assistant scientist at the Johns Hopkins Bloomberg School of Public Health in Baltimore, who led the research.

People in the general population who got breakthrough infections usually had more mild cases, the researchers observed. But immunocompromised people “could still get pretty sick,” Sun says.

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

Sometimes, an immunocompromised person isn’t even able to get vaccinated, says Karen E. Knudsen, PhD, chief executive officer of the American Cancer Society.

“We have 1.9 million new [cancer] diagnoses a year,” she says. “Someone undergoing active treatment is often immunocompromised and may not even have been eligible for a vaccine. Those who were eligible may not have gotten the entire benefit. We would call them under-vaccinated individuals.”

Advocacy by Other Organizations

Besides the new national focus on the immunocompromised, organizations representing people who are immunocompromised continue to press for protections. The American Cancer Society has recommended that all health care professionals work with cancer patients to educate them about their risk of having COVID.

“We have had educational outreach in many channels, including social media, to raise awareness of the disproportionate risk of contracting COVID [if immunocompromised], and to take every possible precaution,” Knudsen says.

The Arthritis Foundation continues to push for more access to telehealth services, especially for people who are immunocompromised, says Anna Hyde, a foundation spokesperson. The foundation has also monitored shortages of COVID medications, she said, contacting drugmakers and the FDA, and keeping patients updated about shortages.

A national approach must “continue to use and invest in widespread testing,” says Jorey Berry, president and CEO of the Immune Deficiency Foundation, which advocates for people born with rare lifelong conditions that mean their immune systems don’t work properly, often due to genetic causes.

Like others, the foundation expressed concern about the new CDC monitoring guidance. “Less reliance on transmission metrics [as the new guidelines recommend] will likely lead to a decrease in testing, which will limit our ability to predict when new waves of infection are coming, making [immunocompromised] communities more vulnerable,” Berry says.

A Mostly Mask-Free World

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

Even then, she finds that some people get too close, especially at checkouts. She’s polite but firm. Saying, “Excuse me, if you could step back” usually works, maybe also because of her appearance, she says. “They can look at me and tell I’m a cancer patient” due to hair loss.

After Genoves, who has rheumatoid arthritis, got the recommended fourth shot, someone questioned her decision. She’s learned to reply simply and move on. She told that person: “You know, everyone makes their own choices.” Then she stays quiet.

Silberman’s solution is to stay vocal. “I’ll keep wearing masks, keep posting photos of myself wearing masks, and I will keep pointing out the dangers to vulnerable populations like my mother,” he says.

Still, he remembers earlier instances, when he says individuals would suppose extra about “the nice of the entire.”

Sometimes, that considering resurfaces. When Brigham Young University dropped its masks mandate, Melissa Alcaraz, PhD, an assistant sociology professor there, emailed her class, asking them to maintain masking as much as assist her shield immunocompromised family members. She was pleasantly shocked when she bought to class. All the scholars did.

Asking individuals that can assist you keep protected, as a substitute of ranting at their selfishness, can work, says Leonard Jason, PhD, a professor of group and medical psychology at DePaul University in Chicago.

“When you ask individuals for assist, it is kind of disarming and it makes them extra prepared,” he says. “You aren’t making an attempt to manage them.”

You are merely asking for assist. Even so, the dialog might need to be ongoing, and the strategy will not work with the insensitive, he says.

“Asking others that can assist you remains to be morally effective, and I might not hesitate to do this amongst your speedy circle,” NYU’s Caplan says.

When you or your youngsters go to one other family, “I believe everybody ought to ask, ‘Are there immunocompromised individuals in your home?'” after which take the precautions from there, Caplan says. “It’s like asking a few peanut allergy.”

While the immunocompromised might really feel they’ve little management over how their group is responding to the pandemic, “they’ve management over how they speak about it,” says Shannon La Cava, PsyD, a medical psychologist and chief medical officer of Cancer Support Community Los Angeles, a part of a nationwide community offering assist for individuals residing with most cancers. Put the main focus there, she says.

If they get pushback about persevering with to masks up, having a go-to response may make issues simpler. “Oh, I’m simply following physician’s orders,” may work, she says. Or use humor, resembling “This masks takes off 20 years. I’m not giving it up.”