March 7, 2022 -- As many people in the country prepare to ditch their masks, mingle more closely, and return to "normal," not everyone can board that train. People who live with diseases or take medications that make their immune systems not work as well to protect them from infections are still at risk from COVID-19.
Connie Taylor, 60, from Nashville, is as tired as the next person of the COVID-cautious routines. "It's getting old," she said recently. Despite that, she has no plans to ditch her mask, unless she is outdoors with no one in sight, and will continue to social distance. Taylor was diagnosed with an aggressive form of breast cancer in August and now is getting radiation treatment after having chemotherapy and surgery.
Laura Genoves, a family law legal professional in Bainbridge Island, WA, is also keeping her mask handy and says she will gauge the situation when deciding whether to wear it.
"To be honest, it depends. [But] in an indoor setting with the public, I will be wearing my mask,” she says. She takes immunosuppressants to manage her rheumatoid arthritis.
Steve Silberman, a San Francisco science writer and New York Times bestselling author, also continues to be careful.
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 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.
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 previous times, when he says people would think more about "the good of the whole."
Sometimes, that thinking resurfaces. When Brigham Young University dropped its mask mandate, Melissa Alcaraz, PhD, an assistant sociology professor there, emailed her class, asking them to keep masking up to help her protect immunocompromised loved ones. She was pleasantly surprised when she got to class. All the students did.
Asking people to help you stay safe, instead of ranting at 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 sort of disarming and it makes them more willing,” he says. “You aren't trying to control them."
You are simply asking for help. Even so, the conversation may have 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 would not hesitate to do that among your immediate circle," NYU’s Caplan says.
When you or your children visit another household, "I think everyone should ask, 'Are there immunocompromised people in your house?'" and then take the precautions from there, Caplan says. "It's like asking about a peanut allergy."
While the immunocompromised may feel they have little control over how their community is responding 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 providing help for people living with cancer. Put the focus there, she says.
If they get pushback about continuing to mask up, having a go-to response might make things easier. "Oh, I am just following doctor's orders," might work, she says. Or use humor, such as "This mask takes off 20 years. I'm not giving it up."