‘This should not be survival of the fittest.’ For high-risk people, COVID is far from over

As mask rules end and life begins to open back up in full, some with compromised immune systems worry they’ll be left behind.

Judy Fine-Edelstein is a stem cell transplant and leukemia patient who stays home nearly all the time and is still adhering to COVID restrictions while the world opens up. In her free time, she reads The New Yorker, teaches herself cello, and watches medical videos.Suzanne Kreiter/Globe Staff

In February 2020, surgery to install a colostomy bag was supposed to change everything for Clare Surette.

The device quickly relieved her pain from Crohn’s disease, an inflammatory bowel syndrome, and ushered in the chance for a more normal life — one where Surette could once again walk across a room with ease. She could work full-time. Maybe, move out of her parents’ Swampscott house.

“I thought that once I healed, I could start living,” said Surette, who was diagnosed with Crohn’s in 2013.

Then the pandemic began. It left Surette, now 26, especially vulnerable to infection and dangerous COVID symptoms. She retreated inside and dreamed of a time when she could meet a friend at a bar — unmasked and unafraid.

Now, Surette fears that day will never come.

“In a way, it was comforting to see people indoors for a while. I thought they would understand what it’s like to not leave your house,” she said. “But when given the chance, the world went outside in a flash and left me behind. I see all my friends living their lives. When is that going to be me?”

Surette is one of 7 million immunocompromised people in the United States who remain highly vulnerable to the virus, even as the rest of society opens back up. COVID still kills over 1,000 Americans every day. And like Surette, many people with weakened immune systems and other conditions face much greater risk, even with the benefits of vaccines and boosters.

These days, people are getting back to coffee shops in the morning and restaurants at night. Many of the 5.3 million fully-vaccinated residents of Massachusetts wander stores and public spaces, confident in their protection, while those who’ve refused the shots heedlessly resumed everyday activities long ago. Now, even mask rules are ending — Boston dropped its indoor mandate this week and several public school systems are readying to do the same.

But high-risk people seldom operate with the same calculus. Not only are they more likely to be hospitalized or die with an infection, but immunocompromised patients also have a greater chance of contracting breakthrough COVID in the first place, said Dr. Camille Kotton, an infectious disease director at Massachusetts General Hospital.

“So many people are done with the pandemic, but my people are not,” she said. “These past two years, we’ve been thinking a lot about ourselves, but not about our friends, neighbors, colleagues.”

Indeed, of a dozen immunocompromised people who spoke to the Globe, most felt that as restrictions are removed, society is marching forward with little regard for them. All but one said they wish masks mandates would be reinstated.

Michele Nadeem-Baker posed for a portrait with her dog Gabby in their Charlestown neighborhood. Nadeem-Baker is a chronic lymphocytic leukemia patient who relapsed three months ago and has resumed treatment. Erin Clark/Globe Staff/Erin Clark

The fact that many experts predict COVID is here to stay, with new mutations likely to keep coming, seems to count for little anymore, said Michele Nadeem-Baker, a Charlestown resident with chronic lymphocytic leukemia.

“It signals that we don’t matter,” she said. “Immunocompromised people want to go outside, too. We want to get rid of masks, but it’s not safe.

“This should not be the survival of the fittest.”

Life with a ‘baby immune system’

Sometimes, Surette feels like collateral damage, like her plight is the price the country had to pay to bring back the world we once knew. She works part-time at a sparsely populated research lab. Otherwise, she stays home and naps often, staving away anxiety and depression.

“Last year was the lowest I’ve ever felt,” she said. “It can be a scary hole to find yourself in.”

Once a neurologist at Cambridge Health Alliance, Judy Fine-Edelstein now spends most days at home, too.

She was diagnosed with acute myeloid leukemia in May 2020 and hospitalized three times afterward. Rounds of chemotherapy and a stem cell transplant have left her with a “baby immune system,” as she put it, barely able to fend off infection at age 62. While Fine-Edelstein is vaccinated, her drug treatment suppresses her immune system, hindering the formation of strong COVID antibodies.

To pass the time alone at her home in Lexington, Fine-Edelstein meditates, plays cello, watches medical videos, and slowly parses through “Macbeth.” She’s waiting for case numbers to bottom out, so she can enjoy the little things: a restaurant meal with her husband or a weekend vacation in New Hampshire.

Until that day, her two adult children will continue to take multiple COVID tests before they visit her. And a sense of paranoia overtakes Fine-Edelstein when the mailman passes by — unmasked, outside, and 10 feet away.

“I know that I’m not going to get COVID like that,” she said. “But there’s this feeling vulnerable people experience — an exaggerated fear — because the consequences are so dire.”

It’s easy not to focus on the needs of disabled or chronically ill people, Fine-Edelstein said, especially when their condition is outwardly invisible. Even Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention, angered disability advocates in January when she cited a finding that 75 percent of vaccinated people who died with COVID had at least four comorbidities. “So, really, these are people who were unwell to begin with,” Walensky said. To the immunocompromised, it sounded dismissive.

Fine-Edelstein knows she’s part of that “unwell” group. “We are forced to count on the rest of society to respond with empathy,” she said. “Unfortunately, I don’t have a lot of faith in that.”

Jan Fuller, a longtime MS patient, is not only looking out for herself but also her 4-year-old grandson, who she babysits, and her elderly mother. Occasionally, she volunteers at the Woburn Public Library. Suzanne Kreiter/Globe Staff

Jan Fuller, 67, routinely weighs how her multiple sclerosis shapes her pandemic-era life. The Woburn resident has lived with the disease, which causes her immune system to eat away at her nerves, since 1994. Before COVID, she would travel to Nashville for country music concerts and lounge freely in crowded pubs.

Now, her life choices are closely circumscribed. Fuller babysits for her grandson, Colby, once a week and accompanies her 95-year-old mother to doctors’ appointments. That’s about it. She avoids grocery stores, movie theaters, and airports — leading “a conservative life that basically takes me inside nothing” but the Woburn Public Library where she volunteers on Tuesdays. Her only other reprieve is a weekly dinner at Steaming Tender in Palmer, a comfort food joint where Fuller and her husband stop often on trips to visit her daughter.

“There’s tall ceilings, and they know us,” she said. “So we get to pick the table, usually far away from other people … I’m looking forward to more spontaneity.”

Of course, everyone assesses risk differently. Some high-risk people are more confident that COVID vaccines will protect them. Others are forced to return to work or provide for their families.

John Takeff, a New Hampshire asthma patient with a history of pneumonia, vacationed in Florida last summer after receiving two vaccine doses. Roxbury resident Sharon Froston feels comfortable watching plays at the Huntington Theatre Company, despite her MS diagnosis. And Jeanne Tiedemann, a Boston brain tumor patient, has journeyed — cautiously — to Maine to cuddle her 1-month-old granddaughter.

“When you have a bad cancer, you can’t hide,” she said. “I have things to do.”

A path forward

Few immunocompromised people want to keep the world shut down. Jenni Huston, a chronic lymphocytic leukemia patient in Burlington, Vt., longs to see schoolchildren smile and small businesses thrive again.

“We have all sacrificed so much,” she said. “I don’t fault people for wanting to move on and take the masks off.”

But, she said, precautions are being lifted without enough treatments in hand to help those at high risk.

In December, the Food and Drug Administration authorized a preventative treatment called Evusheld for people whose immune system doesn’t respond strongly enough to vaccines. About 7,500 doses have found their way to Massachusetts, according to the state Department of Public Health, with 2,800 distributed so far.

High-risk patients say that’s enough to protect just a sliver of the immunocompromised population for six months or less. But Dr. Larry Madoff, the medical director at the DPH bureau of infectious disease, believes “a good chunk of moderately and severely vulnerable patients should be able to get their hands on Evusheld now.”

Supply issues have been exacerbated by a recent FDA announcement to double the dosage of Evusheld, to ward off infection from Omicron and its subvariants. That means a handful of people who were already administered the injection have to return for another round.

Nadeem-Baker, the Charlestown blood cancer patient, contemplated driving down to Florida for the treatment.

“I wanted to pack the car and go,” she said.

Nadeem-Baker contemplated driving to Florida for the preventative COVID treatment Evusheld. Erin Clark/Globe Staff/Erin Clark

Those with weakened immune systems can also receive fourth shots of the COVID vaccines to bolster their chances of building an antibody response. If they do catch the virus, most qualify for monoclonal antibody treatments — the antiviral remdesivir and two pills by Pfizer and Merck — to deter life-threatening symptoms. (Both remain in short supply.)

Yet for many, those steps are not enough.

They’re urging greater collective responsibility — mask mandates, restrictions, and secure access to a breadth of treatments — before we run back to the Before Times. It’s a move that could help knock down the virus at large, they said, especially because experts believe that COVID virus variants evolved in people with weaker immune systems.

At the very least, Fuller, the MS patient from Woburn, hopes her community will show her grace while she navigates this perilous new world. Withhold judgment, she said, when she chooses to don an N95, decline a dinner invitation, or refuse a hug.

“I’ve tried to have incredible awareness of how quickly I judge others around me,” she said. “I don’t want to be judged about the fact that I’m wearing a mask. And I try not to judge people over the fact that they’re not.”