Dec. 15, 2022 – More than 3,500 Americans died from long COVID during the first years of the pandemic, a new CDC report reveals. Men, people over 75, and American Indian/Alaska Native populations were at the highest risk of dying.
The CDC study is “certainly very sobering,” says William Schaffner, MD, a professor of medicine in the Division of Infectious Diseases at Vanderbilt University School of Medicine in Nashville.
The new information shows that long COVID is more serious than many people previously considered, he says. “We know that long COVID is very common, and it's causing a lot of grief for a lot of patients. Fortunately, over time, many of these patients improve.”
However, “now we see from the CDC report that, actually, some people are going to die,” says Schaffner, who is also medical director of the National Foundation for Infectious Diseases.
Researchers at the CDC's Center for Health Statistics looked at death certificates that mentioned long COVID (or chronic COVID, long haul COVID, post COVID syndrome, and others) as a cause of death or a contributing factor. They matched these certificates to medical records with a code related to COVID-19.
They identified 3,544 Americans who died from long COVID from Jan. 1, 2020, through June 30, 2022. This group is a fraction of the 1.02 million people who died from COVID-19 during that time. Their findings are published in the December 2022 CDC Vital Statistics Rapid Release report.
“I think the study's fascinating and interesting. It brings perspective to the consequences of COVID even after we've finished focusing on the acute infection itself,” says Thomas Gut, DO, associate chair of medicine and medical director of the Post-COVID Recovery Center at Staten Island University Hospital in New York City.
It’s still early days, he says. “This is just the tip of the iceberg … for the consequences that we're going to be facing long term.”
Regarding the 3,500 deaths, “I think it's a low number overall,” Gut says. “There's probably a lot more people that have died. We probably missed a lot of long COVID early on, not realizing that's what it was.”
It’s unlikely death certificates earlier in the pandemic would include the acute COVID infection as a cause of death 3 to 6 months later, for example, Gut says. Going forward, this could change. Long COVID is a chronic condition, so it’s more likely to be listed on a death certificate.
Some at Higher Risk
More than half of the deaths linked to long COVID, 57%, occurred in people ages 75 and older. Also, men accounted for 51.5% of long COVID deaths.
Furthermore, 79% of long COVID deaths were non-Hispanic white people, followed by 10% non-Hispanic Black people and about 8% Hispanic people.
Even though non-Hispanic American Indian/Alaska Native people experienced less than 2% of all the long COVID deaths in the study, they emerged as a high-risk group in a separate analysis. Their age-adjusted death rate for long COVID was highest, at 14.8 deaths per 1 million people. In contrast, non-Hispanic Asian people had the lowest age-adjusted death rate, at 1.5 per 1 million.
Minority groups like American Indians and Alaska Natives “have been disproportionately affected by the virus from the beginning of the pandemic – and have been also among the harder to reach and to provide access to the vaccine,” Schaffner says.
This report shows that efforts to reach these underserved communities continues to be essential, he says. “We need to keep doing that – and if we needed another reason to do that, here it is.”
The CDC researchers propose a bleak reason why higher death rates from long COVID were not found among non-Hispanic Black and Hispanic people in the study, despite these groups having higher COVID-19 mortality rates: Many COVID-19 patients in these groups likely died of their original disease before they could develop long COVID.
Some Study Limitations
Although the medical community continues to learn and acknowledge the burden of long COVID and health care professionals have been using the term more, there is lots of variability, since we still do not a have a unified diagnosis of this illness .
“The fact that the number of long COVID labeled deaths has been increasing over time could be a result of more awareness among the medical community, and therefore make it very challenging to draw specific conclusions from this study,” says Fidaa Shaib, MD, an associate professor of medicine in the section of pulmonary, critical care, and sleep medicine, and director of the Post COVID Care Clinic at Baylor College of Medicine in Houston.
Even though the study found more deaths among men, “our experience and the experience of others have shown that PASC [post-acute sequelae of COVID] or long COVID patients are predominantly middle-aged women.”
Shaib points out some limitations of the study. Some causes of long COVID deaths could be from other disorders – like heart disease – that increase the risk of death from acute COVID-19 itself. Also, the data did not include information about the length of time from the original COVID-19 illness to the time of death. “Therefore, the PASC/long COVID diagnosis might not be very accurate.”
“Overall, this study is a good start to draw more attention about the seriousness of acute and long COVID illnesses,” Shaib says, “but more specific data is needed.”
Keeping ‘the Pedal on the Metal’
Avoiding COVID-19 in the first place remains the best protection against long COVID, Schaffner says. Like many public health officials, he emphasized the importance of staying up to date on COVID vaccinations as the most effective strategy.
“As a population, the United States has really not taken sufficient advantage of the freely available – and really quite effective – boosters that are out there now.” The latest CDC estimates report that 13.5% of Americans 5 years and older have received an updated booster dose.
For this reason, “we need to really to keep the pedal on the metal, trying to get the message out,” Schaffner says.
“In this holiday season, the best gift you can give yourself and to the members of your family, your loved ones, and friends is to get the booster – and bring some of them along when you get the vaccine so that they can get the booster also.”