June 2, 2020 -- Ana Anselmo of Miami is no stranger to avoiding busy and public spaces for health reasons. She and her husband have regularly steered clear of both because their daughter Savannah was born with a rare disease that required her to get a lifesaving liver transplant at the age of 1.
“Doing all the things we have to do during this pandemic -- disinfecting everything, staying away from sick people, and being careful around germs -- isn’t new for our family. We’ve always taken precautions to keep Savvy safe,” Anselmo says. “But our life was so normal for such a long time.”
It doesn’t feel normal now. Twelve years after her transplant, the family is looking at quarantining at home long-term to keep their daughter safe from COVID-19. Savvy’s liver is healthy, but like all transplant recipients, she has to take medication every day that weakens her immune system so her body doesn’t reject her transplanted organ. That puts her in the vulnerable and high-risk category for COVID-19, even though she’s a child.
“We’re coming to terms with the fact that because of this pandemic, we’re not going to go back to the way we were living anytime soon,” Anselmo says.
Because of her weakened immune system, Savvy gets sick more often than others, and when she is ill, even from common colds or the flu, her symptoms are more severe and last longer than they do in other people. That combination could be devastating if she gets COVID-19. So she and her family went into self-isolation a little earlier than most of the country during the pandemic. And now, as many people start emerging to return to work, stores, and restaurants, Savannah and her family have decided to continue a strict quarantine at home.
“There is so little information out there for vulnerable populations, so it’s hard to figure out what is safe, because we don’t have enough data and this is so new. But I know enough about the risks to know that it doesn’t really matter to me what everyone else is doing. I just have to go with my instincts to protect my child,” Anselmo says. “People are dying, and she is at increased risk, so our number one job is to keep her safe.”
Protecting Populations Especially Vulnerable to COVID-19
The CDC stresses that since COVID-19 is a new virus, the agency is continuing to learn and share information about things that are likely to cause severe disease in vulnerable populations. Based on what is now known about the virus, the CDC says those at high risk for severe illness related to COVID-19 are people:
- Ages 65 and over
- Who live in a nursing home or long-term care facility
- Of all ages with other medical conditions
- With chronic lung disease
- With moderate to severe asthma
- Who have serious heart conditions
- Who are immunocompromised from cancer treatment, smoking, bone marrow or organ transplant, immune deficiencies, poorly controlled HIV or AIDS, and prolonged use of corticosteroids and other immune-weakening medications
- With severe obesity, who have a body mass index of 40 or higher
- With diabetes
- With chronic kidney disease who are having dialysis
- With liver disease
“Everyone is at risk for COVID-19 and for severe illness, but some groups are more likely than others to get very sick,” explains Kate Grusich, a CDC spokesperson. “While we can’t quantify individual risk, it’s important that if you or a loved one is at higher risk for serious illness from COVID-19, you take action to reduce your risk of exposure.”
In addition to the general safety recommendations for all Americans listed on the CDC website, Grusich says the CDC recommends the following actions to keep high-risk people safe during the pandemic.
- Stay home if possible.
- Contact your doctors to see if there are ways to do routine visits over the phone or by video.
- Rely on family or friends to run errands when possible. Explore delivery services for groceries, supplies, and prescriptions.
- Make sure you have enough routine medications and household supplies.
- Consider taking virtual exercise classes, online education, and using other resources to stay healthy, engaged, and active during the pandemic.
“People at higher risk for severe illness and those with underlying health conditions are also at increased risk of stress due to COVID-19, so it is important to access stress and coping resources as part of maintaining overall health,” Grusich says, adding that the CDC offers several of these kinds of resources on its website.
“While the best way to prevent illness is to avoid being exposed to this virus, we understand that people will need to go out at times for trips to the grocery store, pharmacies, or doctor’s offices,” Grusich says. “In these instances, we encourage following social distancing recommendations, wearing a face covering, and practicing proper hand hygiene.”
“What I have been trying to teach people is this concept of contextually appropriate layers of protection,” says Greg Poland, MD, a professor of medicine and infectious disease at Mayo Clinic and director of the institution’s Vaccine Research Group in Rochester, MN. “Some measures might rightly be construed as overdoing it for healthy people, but when someone in the home has a risk factor for COVID-19, you have to take extra steps to protect them.”
“If it was my loved one with a weakened immune system, we would be at home and sheltering in place,” Poland says. “Any outdoor activities would be carefully and thoughtfully choreographed. I would feel comfortable going on walks and bike rides but would wear a mask on busy trails, and I would try to limit all other public activities. The message to vulnerable people and those who love them is you have to be rabid advocates for their safety.”
Janet Morgan, MD, an internal medicine specialist at the Cleveland Clinic, agrees. “If I have an immunocompromised person in the house, I would not be hugging and kissing that person if I am going out in public. I know that is hard, but you don’t want to put immunocompromised people at risk,” she says.
Doctors acknowledge they are conservative with their recommendations because they’re trying to help people avoid getting ill or having dangerous or deadly complications. In the case of the pandemic, they say giving advice is also complicated because information about the coronavirus is constantly evolving, and the virus is not yet fully understood.
“We don’t want to put people at risk or trap them in their homes forever, but things change rapidly,” says Grant C. Paulsen, MD, a pediatric infectious disease doctor at Cincinnati Children’s Hospital Medical Center. “When can you go to the grocery store with your immunocompromised child? When can they hug their grandparents? The best answer is, if you can try not to for right now, that is probably best until we know more.”
But doctors also stress there aren’t clear-cut answers about what is and isn’t a safe activity for vulnerable groups because of a variety of things -- from the person’s condition to where they’re going, how long they’ll be there, how busy it is, and the rates and course of COVID-19 cases in their community.
“All of our patients are asking these same questions: How tightly do I need to control my environment?” says David Cohn, MD, who treats cancer patients at the Arthur G. James Cancer Hospital at Ohio State University in Columbus. “If someone has a substantial risk because of a weakened immune system because of cancer, chemotherapy, or another condition, their risk of contracting COVID is higher and their risk of severe complications from COVID is higher. So the answer is, the more vigilant you can be, the better.”
Broad guidelines are also hard to issue for high-risk people because disparities come into play. Some may have a choice to stay home and quarantine, while others won’t be able to do that.
“Many people don’t have the option to stay at home until a vaccine is available. They have to work and shop for their family, for example. And for some, staying home doesn’t allow them to physically distance anyway because they live in overcrowded conditions, such as in a multigenerational household or a multi-roommate situation,” says Darrell M. Gray II, MD, deputy director of the Center for Cancer Health Equity at the Ohio State University Comprehensive Cancer Center.
“It’s easy to say don’t go to a grocery store with your children or wear a mask every time you leave the house, but what if a single parent works and has to take their children to buy groceries or can’t afford a mask?” Paulsen says. “We have to temper recommendations with what we think and hope is a reasonable middle ground, but we recognize there isn’t a clear answer for everyone.”
Adjusting to the New Reality
For those who can continue to quarantine at home or in a nursing home or assisted-living facility, many say it feels so restrictive that they wonder at times if they’re overreacting.
“There just isn’t enough research out there yet to figure out how to navigate this,” says Jennifer Morris, a Virginia mother whose son Justin, 19, is immunosuppressed from the medication he takes to manage his Crohn’s disease. “We’ve decided the best thing to do for now is keep him home for the foreseeable future. We’re not going to take any chances.”
Morgan, of the Cleveland Clinic, says Morris isn’t alone in her confusion and concerns. “I’m talking with patients every day who are struggling with all of this. It’s a complete change of behavior, and it brings great sadness, so we need to have this national conversation and acknowledge that this is hard,” she says.
Experts say the challenge in going out to public places is not only that the virus is contagious and deadly, but also that people who look healthy can be carriers and not know it. Risks are also increased when others don’t follow public health recommendations to lessen the spread of the virus and, at best, compliance isn’t consistent right now in many communities.
“It is helpful to hear doctors reassure us that we aren’t being neurotic and going overboard, because it is really hard and complicated to figure out what he and our entire family can safely do,” Morris says. “I only went grocery shopping one time, and people weren’t wearing masks, staying apart, or taking the guidelines seriously. I got so overwhelmed and worried about what I was exposing myself to and might bring home to my son that I didn’t even make it to the freezer section. Now I’m trying to have other people deliver my groceries.”
Morris says besides going outside in their neighborhood, the only place her son has been since the start of the pandemic is to the hospital once for an IV of his medication, and she says even that was hard. “A child and a mother sat right next to us in the treatment room, even though there were places 6 feet away to sit. Neither had a mask on either, and the nurse ran out of ones to give away,” she says. “It was very stressful.”
Poland says when in doubt, clarity can often come by asking yourself some hard questions. “When you’re struggling with wondering if a high-risk person you love can or should do something, assume they get infected when they do it,” he says. “It is possible or even likely they would then end up in the hospital, on a ventilator, and face a 5 to 15% risk of death. So knowing that and looking back, would you make the same decision? Was it worth it? Did you really need to do it?”
Planning for an Uncertain Future
Paulsen, the pediatric infectious disease doctor, says the truth is, nobody will know if they were being too restrictive or not restrictive enough for quite a while. “That really isn’t something you usually know until 6 months after the fact,” he says. “It’s so hard to make these decisions in real time, especially when we’ve never lived through anything like this.”
Anselmo says she feels like her family is figuring it out. They’re getting groceries delivered, avoiding stores, and have postponed vacation plans, dentist appointments, and Savvy’s annual visit to her transplant hospital at her medical team’s request. They’ve already decided she’ll continue attending school virtually in the fall, regardless of what other students do. And the only getaway they have taken recently is to the backyard of a friend who let them swim by themselves in her pool for the day.
“I went into panic mode in the beginning of this pandemic, but now I realize all we have to do is keep Savvy safe until science catches up,” Anselmo says. “We can still have a very good life; it’s just going to be a different life for a while than what we expected.”