Death certificate records mentioned long COVID as early as April 2020

Long COVID played a role in more than 3,500 deaths in the U.S. since the start of the pandemic, according to data from the CDC’s National Center for Health Statistics (NCHS).

Death certificate records from January 2020 through June 2022 showed that long COVID contributed to 3,544 deaths, based on ICD-10 codes for COVID-19 as well as text referring to long COVID, reported Farida B. Ahmad, MPH, a health scientist at the NCHS, and colleagues.

Older adults had the highest percentage of deaths involving long COVID, including people 85 and older (28.1% of deaths), 75 to 84 years old (28.8%), and 65 to 74 years old (21.5%), they noted in Vital Statistics Rapid Releaseopens in a new tab or window.

The death rate was higher among men versus women (51.5% vs 48.5%), and highest among American Indian and Alaska Native people (14.8 per 1 million) and lowest among Asian people (1.5 per 1 million).

The first recorded death certificate with a mention of long COVID occurred in April 2020, and the highest number of deaths with long COVID occurred in February 2022 (n=393).

The percentage of COVID-19 deaths with long COVID peaked in June 2021 (1.2%) and April 2022 (3.8%). Both peaks coincided with periods of decreasing numbers of COVID deaths, the researchers noted.

“The main finding is that there are deaths with long COVID,” Ahmad told MedPage Today. “This report is our first time looking at long COVID deaths using Vital Statistics data, so we haven’t looked at the data in this lens.”

The most commonly mentioned term on death certificates with long COVID was “post COVID,” which was mentioned in 89.6% of long COVID-related deaths.

Other key search terms included “chronic COVID,” “long COVID,” “long haul COVID,” “long hauler COVID,” “post-acute sequelae of COVID-19,” “post-acute sequelae SARS-CoV-2 infection,” “PASC,” and “post COVID syndrome.”

Ahmad noted that long COVID was not a well-known term for most of 2020, which made it difficult to accurately review death certificates. She explained that they did not use search terms that could misidentify the cause of death, such as “history of COVID,” which might refer to a prior COVID infection but not a true link between death and long COVID.

“We certainly have standardized guidance about what should be written on the death certificate and how, but with something like long COVID, I mean even clinically it’s hard to define and diagnose, then you get to how to write that on the death certificate or how to determine if it played a role in the death,” Ahmad said. “A lot of this is subjective to the doctor who’s writing it.”

That subjectivity, she added, could mean that the number of deaths is very likely underestimated in this report. She also noted that this report is based on provisional data that are subject to change, which could lead to an increase in the total number of deaths attributed to long COVID.

“There’s possible underestimates because we can only count the data that we have,” Ahmad said. “So if it’s not written on the death certificate, we don’t have a way of quantifying it.”

The evidence of any death records mentioning long COVID is particularly noteworthy, noted Arch Mainous, PhD, of the University of Florida in Gainesville.

“The fact that people were dying and you were finding mentions in the death certificate of people saying long COVID, or chronic COVID, or long hauler COVID, was actually quite surprising to me,” Mainous told MedPage Today. “Early on, people [thought] that someone had COVID, they recovered from COVID, and the severe outcome wasn’t really linked, so the fact that you have thousands of deaths that were linked [to long COVID] is pretty amazing.”

However, he noted that many people are still not taking long COVID seriously enough, both as a health concern and as a potentially deadly condition. He emphasized that healthcare providers should focus more on the possibility that long COVID is affecting their patients and possibly contributing to their deaths.

“The data they had access to is good, but I think it’s definitely limited,” Mainous said. “The recording of the death certificate including long COVID has to have people who are sensitized to be looking for it, and those people are going to have to be thinking of it when somebody dies of a stroke.”

This report is just the beginning of research into long COVID as a cause of death in the U.S., Ahmad noted. She urged healthcare providers to remember this when considering possible causes of death in the future.

“Providers [should] keep in mind how they’re diagnosing and recording post-COVID conditions, especially in the death certificate, so that it can be picked up,” Ahmad said. “If the information is in the death certificate, we can identify those deaths.”

For this analysis, Ahmad and colleagues reviewed final and provisional National Vital Statistics System death certificate data for deaths that occurred in the U.S. from January 2020 through June 2022. They used the cause-of-death code U07.1, the ICD-10 code for COVID-19, to count deaths, as well as the previously mentioned keywords.