Unvaccinated, not by choice: Immunocompromised people and the COVID-19 vaccine

LAYTON — Following his doctor's orders, Ethan Overbaugh started strictly quarantining in January 2020. A year and a half later, he is still in quarantine. Overbaugh is one of a small percentage of people who are so severely immunocompromised that they are not encouraged to get the vaccine yet.

The former Utah Valley University esports president was diagnosed with leukemia almost two years ago exactly. He started undergoing intense chemotherapy, which involves taking medication that kills off the cancerous cells in the body as well as the cells that are responsible for creating antibodies. Because he has no immune system while undergoing treatment, when his doctor heard about the COVID-19 outbreak in Wuhan, China, he instructed Overbaugh to quarantine long before any lockdowns occurred in the United States.

He essentially shifted his whole life online, only leaving the house to go to the hospital for chemo treatments, during which he would wear an N95 mask for hours at a time. He passes the time gaming, talking to his friends on Discord while they work, playing virtual Dungeons & Dragons and trying to heal from his recent bone marrow transplant.

In March, it seemed like everyone joined him — the world was alone together. He saw friends and celebrities and public figures and companies all encouraging people to stay home, saying that society could get through quarantine and a global pandemic by working together.

Well, at least for a little while. But when the world moved on and reopened, people like Overbaugh got left behind, he said.

Even though vaccines are available, he won't able to get one for another month. The anti-rejection medication he is on so his body won't reject his bone marrow transplant keeps his body from producing T and B cells, which are needed to create antibodies. If he received the vaccine right now, it would not be effective.

As companies, schools and countries discuss vaccination requirements, mandates and passports, people who either cannot receive the vaccine or for whom the vaccine likely won't work as well have been the topic of many conversations both in Utah and nationally. Many critics of vaccination requirements argue that such policies would negatively impact people who medically cannot get the vaccine, some going so far as to say that it's discrimination.

Protecting the vulnerable

However, Dr. Hannah Imlay, assistant professor of infectious diseases at the University of Utah, stated that the best way to help people who cannot medically receive the vaccination is to ensure they are surrounded by people who are vaccinated and masking up even indoors and in nonpublic spaces when you will still be around other people.

As an infectious disease doctor, Imlay mostly works with patients who have received live organ and bone marrow transplants, and the topic is one that is "near and dear to my heart," she said.

"One strong way to protect the immunocompromised, children and even immunocompromised children is to get vaccinated and wear a mask," she said. "Vaccines work on a community level. We tend to think of them as protecting ourselves, but it works better if we say, 'I get vaccinated so I can protect my family who are vulnerable. I have a young child who cannot yet be vaccinated, and the only way I can protect him other than having him mask in public is to be vaccinated.' The people with healthy immune systems need to exercise the privilege of that immune response to protect vulnerable people."

She also said that the number of people who medically cannot get the vaccine is incredibly small. There is a minimal percentage of people who have had a severe allergic reaction to a vaccine in the past who may not to be able to get the vaccine.

"There's not a heck of a lot else that would preclude you from getting the COVID vaccines, and even the majority of those cases can still be safely vaccinated," she continued.

She explained that there are different "hues" and levels of immunosuppression. For instance, people's immune systems don't work as efficiently as they get older, so they might get sick more often, but the vaccine will be effective in them. Pregnant women have a decreased immune response. And some immunodeficiencies aren't caused by medication and aren't likely to get better by waiting, but these are very rare, and "it's best to go ahead and get it because it might work," she said.

In fact, Imlay herself is pregnant and got vaccinated while pregnant. As a doctor, she recommends other pregnant people do the same. Although no pregnant women were enrolled in any clinical trials during the development of the vaccines, the Centers for Disease Control and Prevention and the Food and Drug Administration have been monitoring pregnant women who have received the vaccines, and the results have been good news, she said. It appears the vaccine works well in pregnant women and looks very safe for the baby.

"From an infectious disease perspective, being pregnant and not getting the vaccine can lead to heartbreaking decisions that they and their medical teams have to make about the baby's health and safety," she added.

Even immunocompromised people can safely be vaccinated; and if they are on medication like the kind Overbaugh is on, "the vaccine can't hurt them, it just might not be effective," she said.

A frustrating wait to be vaccinated

Overbaugh was told to wait six months after his bone marrow transplant to get the COVID-19 vaccine, so he has one month left until he can be off his anti-rejection medication so his immune system can be strong enough for the vaccine to actually be effective. But he is extremely tired of having people like him used as a reason to not require vaccination.

"It is incredibly, incredibly frustrating. I don't want to be used as a symbol for anti-vaxxers. I don't think it's discrimination. I don't want to be toted around like, 'This is the reason we can't do it.' There are medical exemptions for people like me, and it's a different story than someone who just doesn't want to get it," Overbaugh said. "They haven't asked us, they haven't talked to us about it and are using us for their cause."

He has a similar frustration with people who refuse to wear masks without a medical exemption.

"I've had to wear N95s any time I go to the hospital, sometimes for 10 hours at a time, and you don't see me complaining about wearing mask," he said.

Even when Overbaugh gets the vaccine, it might not be as effective as it would be in someone who has a solid immune system. He will have to continue to wear a mask for a year after his vaccination in order to protect himself from COVID-19 and other illnesses and diseases. And because the vaccination rates are so low and the infection rate with the delta variant of the virus is so high, people like him still cannot leave the house safely.

"You may say that I should just stay home, but I've been at home for a year and a half. I've been doing what I'm supposed to. I just want to make a plea: I want to be able to go outside again and go to the store and do things that I used to be able to do. But it's not in my hands, it's in yours," he said. "The biggest limiting factor isn't the fact that I get sick; it's that other people won't get the vaccine so that I go out freely."

"It's mind-boggling the amount of compassion and love that we had for each other at the start of this pandemic with this 'we're all in this together' mentality," Overbaugh continued. "And quickly, across like six months, issues were politicized — issues that shouldn't be politicized. All this love and compassion has turned to violence."

Living with 'bubble boy disease' in a pandemic

Ryan Berger, who has severe combined immunodeficiency, also known as SCID or "bubble boy disease," has had to go to therapy because of being so vulnerable in a state with such a low vaccination rate. He has also had a bone marrow transplant. He has been vaccinated; however, vaccinations in the past have not always saved him from the disease. In 2012, he got whooping cough even though he had been vaccinated against it.

The illness ravaged his lungs, and the 20-year-old software developer has lungs that are basically the equivalent of a lifelong smoker's. Even if his body makes the antibodies to fight off COVID-19, his lungs can't handle an infection.

"My doctor told me that if I got COVID, I would die," he said. "A lot of it's out of my control. It's very frustrating. It's definitely kind of scary to watch people be irresponsible. Someone being vaccinated is life or death for me, and vaccination isn't a given that it will protect me, so I could be in the hospital next week. I don't want to test it."

Being vaccinated has eased this stress and anxiety a fair amount. He has been able to go into public with a mask and see vaccinated friends and family, but now that the delta variant is spreading so easily and widely, mostly among the unvaccinated, he may have to crack down and quarantine again.

"When you have a bunch of chronic health conditions, everything is risky, but there's an amount of risk that is worth it. Vaccination definitely lowers that risk. It definitely is still scary. I'm not going to act like the vaccine did nothing — that would be a terrible way to live my life," he said. "Everyone around me that I know is vaccinated, and they do that for me. Even if my vaccine doesn't work, their vaccines will protect me."

However, he does still have friends and family who are unvaccinated. He tries to be empathetic toward those people, but "you can't be too nice," he said. If someone asks him if it's OK to see him if they're not vaccinated, he usually asks them how they would feel if they gave him COVID-19 and then had to come to his funeral.

"It's really easy to be mad at them, but (I'm) letting them peek in and do that risk calculus for themself because maybe they haven't," he said.

Masks, vaccination and freedom

Both Berger and Overbaugh talked about the discussion of personal rights and freedoms that surround the topic of vaccination and mask-wearing.

"It's easy to tell some minority population — which is me in this case — to go sit inside and quarantine so I can do whatever I want with my body. But there's the contradiction: I don't get the right to my body when you're not vaccinated," Berger said.

Overbaugh sees vaccination as a form of patriotism and a way to get the economy back on track by bringing immunocompromised people back into the workforce. He says that the amount of stuff he has to do just to have a chance of going outside is much more than someone getting a shot.

"If you can get it, get it. If I could get the vaccine, I would. It's completely out of my power, and this mentality is letting people like me down. You say that it's about you and your rights, but I can't return to my normal life until people do the right thing, and that thing is so easy," he said. "Getting sick for a day, tops, to help other people is worth it. I would do it over and over and over again. It can't be worse than my chemotherapy."

For Berger, he believes it comes down to basic empathy for medically vulnerable people like him, which he says is lacking.

"I think that more empathy is needed in this world. That's my takeaway from this whole mess," he said.

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