For Those Who Are Immunocompromised, ‘Normal’ Isn’t Even Close

The day after Thanksgiving 2021, Sherry Alvarez’s 11-year-old son Samuel was diagnosed with leukemia.

The months since his cancer diagnosis have been a whirlwind: chemotherapy, nonstop hospital visits and blood draws to track Samuel’s neutrophils — white blood cells that play a crucial role in fighting off infection. Some days, they’re at relatively normal levels, so Samuel can maybe go outside and play or Sherry can comfortably run errands. Other days, they drop precariously low and the whole family pivots into lockdown. Nobody leaves unless it’s an emergency. The risk to Samuel’s immune system is simply too great.

Over these past grueling months, Sherry has been comforted by the mask mandates in place in the county where her family lives in Wisconsin.

“Every time I hear they’ve extended them, it’s been a huge relief. It’s like, ‘OK. That’s one thing I don’t have to worry about,’” she told HuffPost. “Having a kid with cancer, there are so many things you have to think about and navigate and plan for.”

But last week, her local county’s mask mandate ended, and Sherry feels they have entered a new phase in the pandemic. Now, she not only feels a different kind of fear about the potential risks to Samuel’s health, but a gnawing anxiety about the kind of feedback she worries they’ll face as they continue masking up.

“Now I have to, as a grown adult, worry that someone’s going to say something rude and nasty to me or to my son,” Sherry said. “I know I shouldn’t care about it, but my emotions are so out of control right now.”

Over the past few weeks, there has been a flurry of activity easing mask mandates and other COVID restrictions around the United States. The Centers for Disease Control and Prevention (CDC) now no longer calls for routine masking in public indoor settings in areas with low community transmission. School districts have been changing their rule, too. On Monday, New York City — the nation’s largest public school district — made masks optional for K-12 students.

The changes are being celebrated by many who believe they’re an appropriate step given the precipitous drop in new COVID cases and hospitalizations. But some doctors and researchers worry health officials are moving too soon, particularly those who work with immunocompromised patients. And among those health experts — as well as those with weakened immune systems and their loved ones — there is a fear that it is too much change, too soon. People’s lives are most certainly being put at risk.

“Patients feel that they’re being abandoned or left on their own,” said Dr. Gary Lyman, a cancer doctor and researcher with UW Medicine and the Fred Hutchinson Cancer Research Center, who has been studying the impact the pandemic has had on cancer care.

“In a sense,” he added, “they feel they’re being forgotten.”

For millions with weakened immune systems, “normal” is still not an option.

Throughout COVID, the estimated 10 million people who are immunocompromised — either because they have certain health conditions or because they are undergoing certain treatments — have been among those at the highest risk for severe illness or death from COVID-19.

For that reason, the CDC has called for those 12 and up to receive four shots of the vaccine: three doses that make up their primary series, and a fourth that is considered a booster. Earlier research had shown that only about half of people with weakened immune systems build a sufficient antibody response after two doses.

But even with a recommended four-shot regimen, there remain questions about how much immunocompromised individuals are protected from serious complications or hospitalization if they get COVID, which is why universal masking in public settings has been a crucial public health measure. One-way masking does offer some level of protection ― particularly if the wearer has on a high-quality, well-fitted medical grade mask like an N95 ― but just how much protection is not entirely clear. There are so many variables at play, it is impossible to study. What are local caseloads like? How crowded is it? What’s the setting? Universal masking removes so much of that guesswork.

“How do we explain to our son that people are yelling at us for wearing masks because we are simply trying to take good care of each other? I am angry, but mostly the anger is because I am so hurt.”

– Jocelyn

That kind of confusion now pervades daily outings for people with weakened immune systems and those who care for them. Jocelyn, a 39-year-old from Florida who who has a toddler and whose husband had a heart-lung transplant that requires he be on daily immune-suppressing medications, expressed a mix of cautious optimism and frustration. (Jocelyn works in a hospital and asked to use only her first name to protect herself professionally.)

“We do feel a sense of hope now considering my husband received his fourth vaccine dose recently,” Jocelyn said. But she also feels too many people around her are “ready to move on and pretend COVID isn’t real.” The couple’s toddler is too young to be vaccinated, and they’ve encountered negativity when they’ve masked up outside. Their son loves animals, and they’ve tried to take him to the zoo several times. “But people don’t wear masks and they crowd us, sometimes even heckling us about wearing our KN95s outside,” she said.

As people who are immunocompromised try to navigate these social situations — to the extent they even feel safe or comfortable heading out into the world — they’re feeling a growing sense of being alone in their outlook as everybody else seems to move on.

“A year or two ago, everybody was feeling this. Everybody was in lockdown. There was a solidarity. But now when you see the world is opening up, you risk feeling more isolation and stress,” said Ranak Trivedi, a clinical health psychologist with Stanford University and the U.S. Department of Veterans Affairs. “That’s both for patients and for caregivers.”

Here’s what needs to be done so everyone can go about their lives as safely as possible in this “new normal.”

Ultimately, immunocompromised people and the doctors who treat them do not expect mask mandates and other COVID restrictions to last forever — and many spent years prior to the pandemic taking extra precautions as they went out in public. Every person interviewed for this story expressed a clear understanding that COVID is here to stay.

It is also not as though the CDC’s decision to roll back mask mandates came out of nowhere. The new guidelines about when to mask up in public take into account new variables, including not just new COVID cases but also how many hospital beds are open in a given area. Public health leaders have called them “reasonable and well-timed.”

For others, however, it simply feels too soon. Sherry, for example, said she’d like to see vaccination rates increase before mask mandates disappear — particularly among children. (Only about a quarter are fully vaccinated right now.) As her family waits, they do very little outside their home. Samuel recently tried to play outdoors with some neighborhood kids, but they teased him for wearing his mask. Sherry said he takes it all in stride, but watching the world move on without her boy is “heartbreaking.”

“It’s really a challenging time and I feel so sorry for these folks. It’s not new. This goes back two years where there’s this sense of, ‘Our needs have not been considered fully,’” Lyman said. “We know that eventually we’ll be out of this. It may even be in the coming months. But we frankly just don’t know when yet.”

So during this next stretch, doctors, mental health professionals and immunocompromised patients are imploring others to at least have a bit of grace — or even basic manners — about their situation.

It is important to remember that COVID is still a significant and even deadly risk for many, and that for many the new changes are not a source of relief. People who are wearing masks aren’t doing so to make a statement; they may well be trying to keep themselves or a loved one alive.

“What I wish people who don’t know an immune compromised person would know is that COVID is still here and it is still a real threat to our most vulnerable members of society,” said Jocelyn, who added that her family’s “faith in humanity” has all but evaporated over the past two years.

“How do we explain to our son that we can’t go to the hockey game because no one wears a mask and it isn’t safe for daddy? How do we explain to our son that people are yelling at us for wearing masks because we are simply trying to take good care of each other? I am angry, but mostly the anger is because I am so hurt,” she said.

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