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 | | Daily reported coronavirus cases in the United States, seven-day average.The New York Times |
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A pandemic of the forgotten |
About seven million Americans have compromised immune systems from cancer treatments, transplants or other medical conditions. For many, it still feels like the worst days of the early pandemic, before vaccines brought some semblance of safety and protection from Covid. |
"I've spoken to many people who are immunocompromised who never really stopped behaving the way we all behaved in 2020," said my colleague Amanda Morris, who covers disability. "They are vaccinated, but may still be unprotected. Some of them haven't seen their family or friends in two years." |
This week, Amanda reported that many people with compromised immune systems have sidestepped government guidelines and received unauthorized fourth or fifth shots. Researchers say some immunocompromised people — depending on their condition and the medications they take — may never generate an immune system response, no matter how many shots they receive. |
I spoke to Amanda about the challenges facing this group and the outlook for 2022. |
How has the pandemic been so far for immunocompromised individuals? |
Some immunocompromised people don't have much in the way of their immune system. Others are taking immune-suppressing medications that completely take away their ability to make antibodies, or aren't responding at all to vaccines. So for them, getting a shot doesn't signal the end of the fear of getting Covid or getting seriously sick. |
It's also been very different in terms of information; they just don't have as much as other people do. |
Every doctor and researcher I've spoken to said they really don't know exactly how protected a lot of these people are. That's because there hasn't been as much research done on these groups compared to the rest of the population. Often, they are left out of the research on purpose. And even when research is done on these groups, it's delayed, it's not as widespread and it's not on the same scale. |
While I might turn to the science to comfort me when I'm trying to figure out what is or isn't risky, a lot of immunocompromised people don't have as many relevant studies or data that they can use to make decisions. A lot of them are going off what their doctors tell them. Some of it is guesswork. |
Why are they left out of the research? |
I was a science reporter when this pandemic started, so I was doing a lot of reporting on vaccine trials, and I talked to scientists and bioethicists who explained that immunocompromised and disabled people are often left out of research because including them can complicate the study. |
Sometimes scientists are looking to do the easiest studies they can in the interest of going faster. And if they include people with chronic conditions, they're going to have to do a lot more work to determine the effects of the medications or the vaccines that they're testing. |
Scientists also often like to have more homogeneous groups in order to simplify things for themselves. This is a big reason disabled people are also often left out of research. There's a long history of medical and scientific research relying on nondisabled, especially white male individuals, because it's easier to compare one white, nondisabled male individual to another than it is to compare a white, nondisabled male to, let's say, a Black female disabled person. |
But that means you're not actually understanding the impacts on different groups. And we saw this talked about a lot in 2020 and 2021 when it came to different racial groups being included in studies — but we didn't see as much discussion of including those with disabilities. |
What's the outlook for the next year for immunocompromised people? |
Many of them have told me, "I don't see an end to this." For them, the end would require a really high percentage of Americans getting vaccinated, and to have no significant risk of breakthrough infections. But Omicron happened and now even vaccinated people are getting and spreading the virus. So some are kind of feeling like, "this is never ending." |
Others are placing their hopes on alternatives to vaccination, such as monoclonal antibodies. But whether this pans out as a viable alternative of protection depends on the supply of monoclonal treatments. In the past two years, these treatments have been limited. |
As you report on these groups, what are people telling you? |
A lot of people feel left out of the narrative. For example, anytime a government official says this is a pandemic of the unvaccinated, they're completely leaving out people who have gotten vaccinated but may not be protected from those vaccines. |
This also happened a lot with the mask debate in schools, when some officials were saying kids don't need to wear masks in schools because kids don't get Covid as much, and they don't get sick. And that's generally true, but there are medically fragile children. It's almost erasing them at a time when they might need extra attention or protection the most. |
We asked readers who are immunocompromised, along with their family members, to share their pandemic experience and their outlook for the year ahead. Their responses have been lightly edited for clarity and length. |
"I feel like I'm required to be my own epidemiologist. There's not enough known about Covid and people on B-cell inhibitors. I'm trying to give myself the grace to be imperfect in figuring this out, and to give other people space to do their own risk calculations. But it's not always easy. You don't want to always be arguing for your right to not be killed by other people's decisions. I assume I'll wear a mask for the rest of my life. It actually feels empowering to admit to being immunocompromised — although it also feels like it's taken two years for people to be able to have some understanding of what that means." — Adria Quiñones, New York, N.Y. |
"I have been on immunosuppressants for nine years as a result of a bone-marrow transplant. I feel left behind by friends who are moving on with their lives, free to socialize in their vaccinated bubbles, and who fear being near me since they do not want to risk infecting me. I fear I will lose my identity and individuality and continue to shrink into anonymity. Risk-free options do not exist for me, and I do not see them coming anytime soon." — Shari Kurita, Oakland, Calif. |
"I have serious lung disease and until vaccination was locked away in my house like Rapunzel. The pandemic cost me my relationship, social life and livelihood. Since being vaxxed, I've been able to get out and about, see friends and family, even attend a few concerts. I flew to New York over Thanksgiving without ill effects. I've figured out ways to teach private music lessons safely. Now, with Omicron spreading so fast, I'm back in lockdown. I'll be wearing a mask in public spaces for the rest of my life. I doubt I'll have the same parade of private students through my living room again." — T.P., Los Angeles |
"How do you describe the feeling of suddenly being trapped? It feels worse when I realize there's nothing holding you back except the selfishness of others. I could go to the movie theater when cases are low, but if just one jerk comes in and refuses to wear their mask, I could potentially end up in the hospital. I could go on dates and be careful, but if my date is careless, I could bring it home to my also-immunocompromised mom. It was a relief for me when things got worse and Governor Newsom reimposed the mask mandate because at least I'm safer when I'm out at a store." — Daniella Gruber, Orange County, Calif. |
"Having cancer in a pandemic has, at least for now, turned me into a wary misanthrope. Neighbors I used to greet cheerily on the elevator, or acquaintances I see on rare trips to the grocery, are sometimes unmasked even indoors when signs are posted. 'They really don't care if I die' is a recurrent thought, and I fear I'll never return fully to my openhearted self." — Ann Bancroft, Coronado, Calif. |
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