Roshell Pierre-Louis never went anywhere without hand sanitizer long before there was a public run on it, because even a cold could cause the tiny air sacs in her lungs to stiffen, making it hard to breathe.
Pierre-Louis, a Denver resident, has idiopathic pulmonary fibrosis, and if she were to get COVID-19, she’d be at a higher risk of severe disease. Still, she’s pleased the office where she works as an accountant is having in-person hours twice a week, because isolating at home had made her depressed and anxious.
Like many people who have chronic health conditions, she’s weighing how to reduce the risk of getting the virus in a world that seems to have largely moved on from the pandemic, while still doing things that are important to her.
“Why should we have to stay home (indefinitely) for something we never wished upon ourselves?” she said.
About 3% of Americans, or roughly 7 million people, are considered immunocompromised because they have a condition that interferes with their body’s defenses or have to take medication that suppresses their immune systems. It’s not clear how many have another condition, such as lung disease, that would make an infection particularly dangerous.
There’s little guidance from leaders about how they can make choices about their COVID-19 risk. The virus is less widespread in Colorado than it has been in months, and the state’s modeling team estimates that about 90% of residents may have some immunity because they were vaccinated or infected recently. At the same time, nearly all state and local precautions against COVID-19 have lifted, and businesses have announced they’re no longer going to require masks.
In February, Gov. Jared Polis urged healthy people who’ve been vaccinated to return to their pre-pandemic lifestyles, while noting it would be “smart” for people with compromised immune systems to consider taking precautions and to talk to their doctors about a treatment plan if they get infected.
“Live your life. Don’t feel guilty. You only live once,” Polis said at a news conference. “You’ve done your part, Colorado.”
That must be nice for most people, but normal life is still out of reach for families like hers, said Robin Bolduc, of Broomfield. Her husband and daughter both have high-risk conditions, and as much of Colorado goes back to normal, they’re losing accommodations that helped them participate in life, like the option to watch performances or participate in meetings virtually.
“It’s still very real for us,” she said of COVID-19.
Dr. Eric France, chief medical officer for the Colorado Department of Public Health and Environment, said that the odds of running into a person who’s contagious are the lowest they’ve been in a long time, making the state safer for people with higher-risk conditions.
“I think everyone’s going to have to make their own decisions about what they’re comfortable with,” he said.
Pierre-Louis said she’s going to keep taking some precautions, like getting her groceries at off-hours, using hand sanitizer frequently and wearing a mask as long as it’s “socially acceptable.” But she’s also planning to take a flight for the first time in years for a beach vacation with her daughter and granddaughter.
“Even though I’m feeling a little nervous about that, I’m going to give it a try,” she said.
Dr. Josh Solomon, a pulmonologist at National Jewish Health who treats patients with diseases that scar their lungs, including Pierre-Louis, said people with those conditions are about 60% more likely to die of COVID-19 than healthy people, if it gets into their lungs. Over time, the scarring builds up and interferes with patients’ breathing, making respiratory viruses riskier for them. Some patients also take medications that suppress their immune systems, he said.
Even so, it can make sense for patients to return to some of their normal activities, particularly since the virus doesn’t appear to be spreading widely at the moment, Solomon said. When they want to know what they can do safely, Solomon said he asks how they’re feeling emotionally. Some people are perfectly content avoiding many social settings, while others have developed depression or anxiety and think getting out would help, he said.
“It’s not a ‘one size fits all,'” he said.
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“Go with my gut”
Renae Jacob, of Denver, said that in earlier stages of the pandemic, her doctors had specific recommendations, like not flying as COVID-19’s delta variant took hold last summer. She received a kidney transplant 13 years ago, and takes medication to suppress her immune system, so her body won’t reject the organ.
Now, the discussions focus more on what level of risk she feels comfortable with, Jacob said. She and her husband still avoid crowded indoor places, but they’re planning to travel by plane this summer for the first time since the pandemic began. They’re going to wear masks, even though the requirement is expected to lift by then, and hope no one gives them trouble about it, she said.
“I don’t know how I’m going to feel when I do fly,” she said.
Dr. James Burton, who works with patients before and after their liver transplants at UCHealth, said only about a quarter of patients who have had an organ transplant develop COVID-19 antibodies after two vaccine doses, though some have after receiving a third or fourth shot.
Even if they have antibodies, though, it’s not clear how well protected transplant patients may be, because they have to take medications to prevent the body from attacking the new organ. Those medications target T cells, another part of the immune system that’s important for fighting off a virus, he said.
“If I see four people in clinic, probably only one of them is protected,” he said.
People who don’t develop protection from vaccines do have one other option, an antibody cocktail called Evusheld meant to prevent infection for six months — though the virus’s omicron variant may have shrunk that window to about three months.
Burton said he’ll offer Evusheld as an option, but advises patients not to rely on it as their sole safety net, since it wasn’t studied specifically in people with suppressed immune systems. The best thing for patients who are awaiting a transplant is to get vaccinated before they have to take immune-suppressing drugs, but going without those drugs to try to produce an immune response isn’t safe for those who’ve already had their surgery, he said.
Jacob said she feels somewhat more comfortable, since tests have shown she developed some antibodies and treatment is now available. But there’s no clear right answer about what’s safe, so she has to “go with my gut” in assessing whether a place is too crowded or has enough ventilation.
“It’s hard to balance that desire to participate… with my health,” she said.
“The risks for us get higher”
Not everyone feels safe venturing out.
Bolduc, the Broomfield woman with family members at higher risk, said that they haven’t returned to most of their pre-pandemic activities, like going to plays.
Her husband, Bruce Goguen, relies on a ventilator because of multiple sclerosis, and their adult daughter has Down syndrome and multiple autoimmune conditions that would make a COVID-19 infection more dangerous. Their daughter has gone back to her job, but can’t use public transportation or take classes at their local recreation center like she used to.
“We’re not going to any large venues,” she said. “I don’t see that in our future.”
Julie Fiol, associate vice president of health care access for the National Multiple Sclerosis Society, said people with multiple sclerosis can have very different levels of risk and protection, depending on whether they take medications that suppress their immune systems, whether the disease has caused a disability and if they have other chronic conditions. It would help if there were a test everyone could take to determine if they’re protected, but that doesn’t exist at this point, she said.
“I think everyone is making these difficult decisions and we’re wrestling with these risks,” she said.
It’s not only patients with multiple sclerosis who are having to make decisions without complete information about their risk.
Laura Packard, a Denver resident whose lymphoma has been in remission since 2018, said that the chemotherapy and radiation she needed to survive the cancer damaged her lungs, making her care more complex if she were ever to need oxygen.
But there’s very little information about risk for cancer survivors, she said.
“A lot of us are in this in-between land,” she said.
Packard said she’s mostly sticking to outdoor activities and wears a mask indoors except in settings where it’s impossible, like her dentist’s office.
She’s concerned about what will happen as the few settings still requiring masks, like airplanes, eventually lift those rules, particularly since Congress hasn’t appropriated more money for COVID-19 treatments that can keep higher-risk people out of the hospital. The White House warned Tuesday that shipments to states will be cut in the near future, with the supply of treatments possibly running out in May — though that depends on how many people need them in the next few months.
“All of those things we’ve come to depend on are going away,” she said.
Bolduc said that in some ways the world is becoming less safe for her family. While the amount of the virus in the community has gone down, precautions have lifted and accommodations — like streaming performances for people who don’t feel safe attending in person — have gone away.
“As the numbers go down and the precautions are lifted, the risks for us get higher,” she said.
“A lot less worried”
There’s no formula to determine what a person should and shouldn’t do, so it’s important to talk to your health care provider about how serious an infection might be for you, how widespread the virus is in your area and whether there are any precautions you can take, like wearing a mask or checking if everyone there is vaccinated, said Fiol, with the Multiple Sclerosis Society.
Of course, not everyone has a doctor they see regularly, and not all providers feel comfortable having nuanced discussions about risk, she said.
Having monoclonal antibodies and antivirals available for patients if they get COVID-19 has somewhat changed these calculations, because prompt treatment dramatically reduces the odds they’ll be hospitalized or die, said Solomon, the pulmonologist at National Jewish. The hospital also has doses of Evusheld to offer some protection to people who can’t make their own antibodies, he said.
“You don’t have to have that level of anxiety that I’m going to get COVID and I’m going to die of respiratory failure,” he said. “I’m worried (about my patients), but I’m a lot less worried than I was a few months ago.”
The vast majority of patients are seeing family again — though perhaps with precautions — and most have started doing some shopping again, since they can do that with a mask, Solomon said. Returning to the office and eating in restaurants again are less common, but some patients have decided to do those things as safely as they can, he said.
“It’s an incremental process for most of my patients,” he said.
Burton, the liver transplant physician, said he recommends his patients keep wearing masks in indoor public places and try to limit the number of potentially infectious people they have close contact with. Gatherings will be safer once it’s warm enough to meet outside, but having guests take a rapid test and keep some distance will at least somewhat reduce the risk until then, he said.
“There’s some patients that want to have zero risk, and there’s some who want to do as much as possible,” he said.
“If everybody does their part, we’ll get through”
Of course, if the virus starts to spread more widely, higher-risk people will have to reevaluate what they can do again, Solomon said. It’s never been feasible to keep those at higher risk completely separated from those who are generally healthy, he said.
“If we increase community spread of this, it will find the way to these people,” he said.
Bolduc said she’d appreciate if people who feel good about their risk level showed more understanding of families like hers. She said she gets “dirty looks” when she wears a mask to the grocery store, and sometimes people read too much into a request that they step back a bit.
“I feel like I should have a T-shirt that says, ‘I’m taking care of someone who’s vulnerable,'” she said.
While people are tired of wearing masks, doing so in crowded indoor spaces is a way of protecting those who are more vulnerable, particularly if the virus surges again, Solomon said. It’s like following the speed limit to avoid killing a pedestrian, he said.
If everyone were willing to take small steps, like wearing masks in crowded spaces, it would give people at higher risk a bit more freedom to go about their daily lives, Pierre-Louis said.
“If everybody does their part, we’ll get through this,” she said.