“Our community feels that it is still safest for us to stay in isolation.”
Aside from some reopening jitters and surges in several regions, states across the country are announcing their intentions to have schools of all kinds resume in the fall. At the university and college level, plans are in the works at institutions, including in Greater Boston, to have students return—in person—next semester.
Watching the process unfold, it appears that many decision makers are taking for granted that most students are healthy and considered to be at lower risk of contracting coronavirus. But for the estimated 7 million immunocompromised adults in the US, the 60% of Americans who live with a chronic health condition, and more than 24 million people in the US with autoimmune diseases, the rush to get back to normal can be dangerous, or fatal.
According to the Centers for Disease Control and Prevention, “people with weakened immune systems are at higher risk of getting severely sick from SARS-CoV-2, the virus that causes COVID-19.” The CDC advises: “If you are immunocompromised, the best way to prevent COVID-19 is to avoid being exposed to this virus.”
People with cancer and genetic immune deficiencies; those going through chemotherapy, organ transplants, or bone marrow transplants; and those who take immunosuppressant medicines are all considered immunocompromised. Underlying medical conditions such as lung disease, liver disease, lupus, heart disease, severe obesity, and diabetes also affect the immune system.
For those managing such conditions, coronavirus poses a much higher risk of severe disease or death than for the rest of the population. And for many immunocompromised students, the risk of returning to school before a vaccine is distributed is too high to justify.
“All the families that I have been communicating with have all said that they are currently starting to make arrangements with their school system … for their child to either be homebound or to do some form of homeschooling,” Heather Smith—president of the SCID, Angels for Life Foundation, which supports families diagnosed with severe combined immune deficiency—explains. “It’s very dangerous for our children at this time to go back into that type of setting.”
SCID comprises a group of disorders that are present at birth and leave infants highly susceptible to disease, with little or no immune system to defend themselves. While many SCID patients are able to get treatment in the form of bone marrow transplants or gene therapy, there is still a risk of immune system issues after treatment.
“Our community feels that it is still safest for us to stay in isolation,” Smith says. “For us, it will be until there is a vaccine out on the market before the majority of our community will feel comfortable coming back out into the world.”
Others echoed the sentiment. Crystal Flores is an advocate for people with congenital heart defects; collectively known as CHD, such conditions affect more than 1.3 million Americans and weaken the immune system. Flores was born with CHD and says that even going to school during flu season can be fatal.
“Social distancing in our community is actually a very normal, everyday thing for us,” Flores says. “Even the flu or a cold lands us in the hospital. During this pandemic, definitely the parents will keep [kids] at home to prevent [their] deaths.”
“If they’re in active treatment, no way.” Beecher Grogan, the director of Lucy’s Love Bus, a nonprofit that supports children with cancer, stresses that children with cancer should not return to school in the fall. She says many parents of children with cancer will keep their kids home, even if they have been out of active treatment for months or years.
Danalynn Stockwood is the mother of four daughters, one of whom, 7-year-old Cheyenne, is undergoing chemotherapy for a brain tumor. Cheyenne’s treatment weakens her immune system, and when her ANC levels, which measure the body’s ability to fight infection, are too low, she is at high risk of infection. Her immune system will remain compromised for at least six months after she ends treatment.
Cheyenne occasionally missed multiple classes before the coronavirus pandemic. Her chemo appointments were often during school hours, and she would sometimes take the day off after her treatment to rest. But Stockwood says that she was mostly in attendance and made the best of her time in class.
“She’s a typical 7-year-old,” Stockwood says. “Cheyenne is my social bug. She loves people and she loves school. I have always been very adamant about her still participating … and I think it’s vital for children to still be able to have that social aspect when going through something so critical like this.”
Stockwood says risks outweigh benefits in the consideration of whether to send her children back to school and when. To protect Cheyenne, she’s planning to keep all three of the children who still live with her—13-year-old Chevelle, Cheyenne, and 6-year-old Chevonne—home.
“If we’re still in the same position we’re in now, I personally don’t feel that I will be sending my children back. Any of them,” Stockwood says. “I’m trying to be as precautious as I can. As much as I want them to be social and have that academic component while they’re in school, they can still get the academic component at home.”
In addition to keeping children home, many parents have been forced to stop working out of fear of bringing coronavirus home to their sick children. Paying for treatment and care for children suffering from serious diseases is already a financial burden, exacerbated by the need to have someone working as a full-time caregiver for the child.
“We definitely have lots of parents who … the mom is a stay-at-home mom and she’s taking care of the child and maybe their medical needs, and the dad for example could be the one that’s going out and working,” Smith, president of the SCID foundation, explains. “Now, because of this, he is having to leave his job and collect unemployment … because he is at too high of a risk to bring something home.”
Smith says that accommodations should be made for families that can’t take the risk of having parents return to work until there is a vaccine. Grogan, the nonprofit director, agrees, saying families with immunocompromised children need significant support to educate their children at home during a pandemic.
“There’s all these ramifications underneath that people don’t even think about,” Grogan explains. “They might think, Oh, you can just be homeschooled. What if you can’t pay your internet bill? What if you can’t pay for a cell phone? What if you don’t have a laptop? The diagnosis of a child with cancer catapults families into poverty more often than anyone would think.”
Stockwood normally runs a nail salon and works as a nail technician, but stopped working in the beginning of March, the same week schools in her town of Athol shut down. She says she won’t go back to work—even when nail salons are allowed to reopen, because the risk of bringing coronavirus back to Cheyenne is too great.
“When her counts reach a certain degree or lower, she’s really susceptible to illnesses,” Stockwood says. “To avoid exposure, I have to really be conscious of who I’m associating with—socially and work-wise. Reopening my business will be put on hold until I feel it’s safe to do so.”
There can also be stark and uncomfortable differences in the way healthy families and immunocompromised families treat sickness and isolation.
“There’s definitely varying degrees of what isolation means,” Smith says. “For us, it meant life or death for our child if we didn’t take it seriously. So we take all precautions extremely seriously.” Watching people ignore restrictions, she adds, is “concerning and alarming to our community because we rely on the general population to take precautions to keep themselves safe, which then in turn will keep us safe.”
For Stockwood, isolation means that her children have not left their house and backyard except to go on occasional drives. She says she wouldn’t be nearly as strict if not for Cheyenne, but with an immunocompromised child in the house, she isn’t taking risks. Even if everyone follows restrictions, takes precautions, and wears masks, schools are petri dishes for disease. Under normal circumstances, children are crowded into small spaces and parents send children to school sick.
For Flores, the CHD advocate, isolation started in mid-February, long before lockdowns were put in place across the country. She is avoiding all public places and transportation, and gets her groceries delivered. She wishes that the burden of protecting people with chronic illnesses could be shared more equally between everyone.
“Me, personally, I missed a lot of school growing up because, you know, during flu season you have the flu going around at school, kids go to school sick,” Flores says. “I think that a lot of the chronic illness community wants more consideration. I think everybody should contribute to preventing anyone from getting sick. And then more of us would be able to come back to school.”
Tom Scott, executive director of the Massachusetts Association of School Superintendents, says that immunocompromised students are being taken into consideration in the reopening process, and that school districts are working to obtain computers and hotspots for those who don’t have access to them. And in a recent Board of Elementary and Secondary Education meeting, Jeff Riley, the state’s commissioner of elementary and secondary education, says the goal is to have schools “up and running in the fall.”
But even for students who are able to return in person, school will likely look very different. For one, officials expect a continued focus on virtual learning.
“We fully expect that there will be households where students will remain home, and there will have to be remote learning opportunities provided for them,” Scott says. “That’s certainly going to be something over the next couple of months that [districts] are going to have to be thinking about and planning for.”
“It’s a hopeful thing to be concerned about your child’s education when they’re so sick,” Grogan says. “It’s believing in the future, believing that they’re going to need an education. And so it’s really important to make sure that that’s accessible.”