‘It’s Just Scaring People, and It’s Not Saving Lives’

Stories about the pandemic’s continuing risks for immunocompromised people may create unintended harms.

A photo of someone in a mask, looking out a window
Igor Alecsander / Getty

As the United States nears its numbing, millionth COVID death and shrugs its shoulders at a rise in cases, some Americans are feeling left behind. Immunocompromised people have suffered disproportionately throughout the pandemic, and even those who have been fully vaccinated wonder if they’re really safe. News stories highlight their struggles to adapt to a society that “doesn’t seem to care whether they survive.” “I could just go outside and within two weeks, I could be dead,” a fibromyalgia sufferer told ABC News last month. She went on to say, “It kind of feels like immunocompromised people are getting sacrificed.”

This dramatic coverage underscores the continuing risks of the pandemic, especially for those who are most vulnerable: Immunocompromised people who get vaccinated aren’t quite as safe as the general vaccinated population. (The degree of added risk depends on the underlying condition.) But well-intentioned stories on this issue sometimes overstate the case, claiming that COVID shots for the immunocompromised are “ineffective” or “cannot work on everyone.” That is incorrect, and it hinders uptake of vaccines. The shots do provide these patients with very meaningful protection as a rule, Jennifer Nuzzo, the director of the Pandemic Center at Brown University School of Public Health, told me. To suggest otherwise “is just a complete distortion … It’s just scaring people, and it’s not saving lives.”

When the mRNA vaccines finally arrived, at the end of 2020, their value for immunocompromised people remained unclear. Members of this high-risk group were specifically excluded from the first trials performed by Pfizer and Moderna. Patients and their doctors had only scientific scraps to guide them in the months that followed: small, preliminary studies that recorded antibody levels after shots. The initial results weren’t promising at all. One study found that just 54 percent of organ-transplant patients, who require the most powerful immune-dampening drugs, had detectable antibodies after two vaccine doses; and when present, these protective proteins accumulated in much lower quantities than were observed in the general population. Some astute patients had their own antibody levels measured and declared themselves “vaccinated but not protected” when the results came up short.

Sure enough, when Omicron arrived last fall, immunocompromised people were hit the hardest. A study conducted by Kaiser Permanente in California showed that immunocompromised patients who had received three Moderna doses were just 29 percent protected from Omicron infection—as compared with the 71 percent protection afforded others. Some patients’ antibody levels can still be low after three, four, or even five vaccine doses. (Three primary doses and two boosters are now recommended for this population.)

Yet there’s a silver lining. Antibodies matter, but they matter most for preventing illness, at any level of severity. Regarding the most dangerous outcomes from disease, recent research from the CDC indicates that—shot for shot—the immunocompromised achieve most of the same benefits as healthy people. One study, published in March, looked at the pandemic’s Delta wave and found that three doses of an mRNA vaccine gave immunocompromised people 87 percent protection against hospitalization, compared with 97 percent for others. Another CDC report, also out last month, suggested that on the very worst outcomes—the need for a breathing tube, or death—mRNA vaccines were 74 percent effective for immunocompromised patients (including many who hadn’t gotten all their shots), and 92 percent effective for the immunocompetent. A 10-to-20-percentage-point gap in safety from the most dire outcomes is consequential, especially for those who are most susceptible to the disease. Still, these results should reassure us that the immunocompromised are not fighting this battle unarmed.

That reassurance means all the more when so many members of the chronic-disease community feel left for dead by the casual reversals of pandemic funding and restrictions. But in place of measured consolation from the experts, they find offhanded comments saying that the vaccines “don’t work” for them (as one public-health-school dean tweeted earlier this month). This despairing rhetoric can’t be helping to encourage vaccination. The CDC hasn’t published data on what proportion of the immunocompromised remain unvaccinated or undervaccinated, but one survey of 21,000 autoimmune patients taking immunosuppressive medications, conducted by a network of rheumatology clinics, found that, as of last September, one in four hadn’t received any shots. Several clinicians involved with this population told me that, even now, many patients are unvaccinated.

When Anne Mills, a physician in Virginia with rheumatoid arthritis, went public with her inoculation experience last year, she hoped to reassure her friends in the autoimmune community that the shots are safe and effective. “We’re still looking at very high response rates and very robust protection against severe disease,” she told me. Now that her entire family is vaccinated, Mills feels better able to mentally compartmentalize her condition, and she is working and traveling again while maintaining some precautions. But she worries that many immunocompromised people have gotten the message that vaccination isn’t worth it.

Michael Putman, a rheumatologist at the Medical College of Wisconsin who cares for many patients receiving immunosuppressive medications for autoimmune diseases, confirms that it’s a battle to get his patients inoculated. “The idea that the vaccines don’t work for immunocompromised people has definitely contributed to hesitancy,” he told me. Many autoimmune sufferers worry that the shots might lead to a flare-up of their disease symptoms. Some of Putman’s patients have decided not to take that risk after reading news stories suggesting that the injections wouldn’t help them much anyway. Ironically, patients with rheumatologic conditions, like Putman’s, are generally among the most protected within the immunocompromised cohort, as measured both by antibody production and clinical outcomes.

A large CDC analysis of two-dose vaccine regimens within the immunocompromised population found that rheumatologic patients saw an 81 percent decrease in their risk of COVID hospitalization. Next came solid-cancer patients (79 percent protection), blood-cancer patients (74 percent), and those born with immune deficiencies (73 percent). Organ-transplant recipients were the least safe from COVID after vaccination, with just 59 percent of their hospitalizations prevented after two doses. Robert Rakita, a transplant-infectious-disease specialist at the University of Washington, told me that some of his patients have died from COVID despite having had three or four mRNA injections. He recommends that all vaccinated organ recipients continue to wear a mask and avoid crowded indoor activities. But such patients make up just 8 percent of the 7 million Americans estimated to be taking medications that weaken their immune system. When COVID reporting casually lumps together all “immunocompromised” patients, it papers over these differences. Readers are left to think that a fibromyalgia patient and a kidney recipient face similar risks.

For chronically ill people, political power derives in part from group solidarity; the larger the contingent, the louder the voice. Yet in pursuit of visibility and justice, the “vaccinated but vulnerable” category may be expanded well beyond what the science suggests, to include not only organ-transplant patients, but also people with diabetes, asthma, obesity, or high blood pressure. According to this paradoxical arithmetic, half of the country can end up in the “high risk” category by some definition. In truth, we all remain vulnerable to COVID; inoculation isn’t 100 percent effective in any demographic. The threat of long COVID also lingers. But the peril is far more concentrated than generic references to “chronic conditions” or “comorbidities” would suggest. Age continues to be, far and away, the most powerful risk factor for becoming seriously ill from the coronavirus. Putman, the rheumatologist, uses an example of a 64-year-old doctor counseling a 24-year-old autoimmune patient to take precautions. The patient should probably be admonishing the doctor instead, he told me.

When the vaccine campaign began, with shots for the oldest Americans in nursing homes and elsewhere, news coverage emphasized seniors’ feelings of joy and relief. But the immunocompromised have been described in very different terms, even as vaccines are saving their lives too. Stories focus on their uncertainty and fear—and may end up adding to the same.