At the beginning of 2021 when the government announced it would be offering COVID-19 vaccinations, I scrambled like a rabbit in heat to get my name on a list. I lucked out when a Rite Aid near the Philadelphia airport called me on a cold January night at 8 p.m. to say it had three leftover Moderna doses which had to be used immediately. Could I be there in a half-hour? You bet.
Although I was in my nightgown and the ride was 20 minutes away, my husband and I raced over and got our first shots. I was so ecstatic, it took me hours to fall asleep; when I finally did, I dreamed that my long winter of isolation was coming to an end. I’d soon be able to resume some version of a normal life: dine out with friends, visit a museum, go to a party, see a movie in a theater, feel alive again!
But that’s not what happened. I have MDS, which stands for myelodysplastic syndromes. This is a group of blood and bone marrow disorders considered a type of cancer in which you don’t produce enough healthy blood cells. This means that I am among the 4% of Americans labeled “immuno-compromised.”
This broad category of patients with weakened immune systems includes organ transplant recipients as well as people with hematologic and rheumatologic diseases, MS, and some cancers. For a variety of reasons — prescription medications, treatment therapies, or simply the nature of our illnesses — our blood cells don’t make certain types of ammunition necessary to fight infections. While our response to most vaccines may be less robust than the general public’s, we usually get enough of a boost to protect us. But the COVID-19 vaccine proved to be an exception.
In April, the University of Pittsburgh Medical Center released a bad-news study concluding that the odds of the COVID-19 vaccines producing antibody responses in people such as me “were the equivalent of a coin flip.”
To find out whether I’d won or lost, I immediately asked my oncologist for a spike protein antibody test. It came up tails. I’d lost. (At present, the FDA recommends against antibody tests because they are too variable and, also, too narrow in scope.)
Suddenly my ticket to freedom was snatched from the hand I had poised to remove my mask. While the world is opening up and mingling en masse around me, I am back, once again, wandering in the gray fog of uncertainty, constantly questioning what is safe for me and what isn’t. My doctor, Noelle Frey, a hematologist/oncologist and associate professor of medicine at the University of Pennsylvania, admitted that, like her fellow clinicians, she doesn’t yet have much to offer her patients.
“I’m mostly left with just acknowledging their uncertainty and supporting their confusion,” she said with frustration. “All I can tell them at the moment is to be more vigilant when others aren’t.”
But that could be changing. The issue of how to protect and treat the immune-suppressed community has suddenly become a hot topic in the COVID-19 research world. Every week or so a new study appears, focused on how to provide immunity to failed vaxxers such as me. The National Institute of Allergy and Infectious Diseases (NIAID) is currently seeking 500 participants for a trial examining how people with immune deficiencies react to COVID-19 vaccines. (This group was not included in any of the original vaccine trials.) The problem centers on a particular deficit in our immune-fighting cells. We immuno-compromised folks lack sufficient B cells, the cellular mechanism critical to making infection-fighting antibodies.
Yet, according to a recent article published in the journal Nature, we do have another battle tool called T cells that can play a valuable role in stimulating immune response. Apparently, antibodies are not the only weapon in the COVID-19 arsenal.
Alex Huang, a hematologist/oncologist at the University of Pennsylvania who worked on the study, explained it to me this way: “In the battle for immunity, when one platoon of the army is disabled or shot down, the other troops get stronger in order to pick up the slack.” Evidence suggests that T cells may well spark auxiliary protection against COVID-19 and can also lessen the severity of the virus after it strikes. Unfortunately, the tests to measure T-cell levels that are specifically geared to respond to COVID-19 are very costly, complicated, and not generally available outside of a research study.
Another intense field of investigation is the potential deployment of monoclonal antibodies. These are bio-engineered, laboratory-made antibodies that start battling an infection before your own immune system gears up. During the pandemic, celebrity patients such as Donald Trump and Rudy Giuliani had remarkably swift recoveries from COVID-19, apparently due to the monoclonal antibody infusions they received immediately after the virus was diagnosed. This is now a widely used post-infection treatment.
The next big step is testing the efficacy of monoclonals in preventing COVID-19. If they’re effective, instead of relying on vaccines to activate natural antibodies, certain people might get injected with a man-made version, instead.
Early trials using this approach have been very encouraging. In a nursing home trial, pharmaceutical giant Eli Lilly gave its monoclonal to the staff and residents of several nursing homes and found it blocked the spread of COVID-19. More recently, Memorial Sloan Kettering and Penn’s Perelman School of Medicine collaborated on a clinical trial in which none of the participants who’d been exposed to the virus came down with COVID-19 after they’d been infused with a monoclonal antibody produced by the drug company Regeneron.
And the journal Nature just reported on a trial in which a designer antibody sprayed in the noses of lab mice offered strong protection against coronavirus variants — though this is a long way from a nasal spray for humans. The big drawback to monoclonals is that they are not yet approved for prevention by the U.S. Food and Drug Administration, and they are whoppingly expensive.
“The holy grail to prevent COVID would be an anti-viral pill,” said John Mellors, a global leader in HIV/AIDS research and chief of infectious diseases at the University of Pittsburgh Medical Center. More likely to come about a lot sooner would be a vaccine booster engineered for the immune-suppressed, similar in concept to the beefed-up senior flu shot given to vulnerable people over 65.
This fall, Canadian scientists will release the results of a large trial testing the value of giving a second vaccine brand, perhaps one that works differently from the first one you received. For instance, if you originally got two doses of Pfizer’s vaccine and didn’t respond, you might get a booster of Johnson & Johnson that operates on a different principle. Don’t look for this as an option unless the FDA approves it.
For the time being, we, the immune-compromised, are left few choices. “Until we have better methods to assess vaccine response, such as quantifying T cells against the virus, our advice is to take precautions,” said Emily Blumberg, director of transplant infectious diseases at Penn’s Perelman School of Medicine. “Avoid large crowds. Outdoor activity with a vaccinated friend is fairly safe; indoor dining, less so. The infectious potential of 30 or 40 people in a courtyard is very different from two people on a tennis court,” she said.
The one rock solid piece of advice for the immuno-compromised is to get vaccinated. You may not be fully protected, but most doctors believe that you probably will get some immunity. Equally important, urge everyone in your circle — for that matter, everyone you know — to get vaccinated, too. Nothing would give us greater protection than herd immunity, the sooner the better. Only then will we be able to safely unmask and worry about getting a cold instead of agonizing about getting COVID-19.
Carol Saline is a freelance health writer who lives in the Philadelphia area.