The Centers for Disease Control and Prevention (CDC) on Wednesday took a step toward pinning down long COVID by citing a new code for the disease that can be used on death certificates.
There are no generally agreed-upon best practices for diagnosing and treating long COVID as of yet.
A study published by the CDC on Wednesday says that long COVID had been listed as the cause of death on 3,544 death certificates in the U.S. This represents 0.3% of the over 1 million people who’ve died of COVID-19 in the nation.
The data were collected by the National Center for Health Statistics (NCHS), which is a CDC division.
NCHS researchers said “this study uses literal text from death certificates to identify and quantify long COVID deaths and represents the first attempt at quantifying long COVID deaths in national vital statistics data.” The study added: “The implementation of ICD–10 code U09.9 for cause-of-death coding and standardized guidance for certification of these deaths would facilitate more rapid ongoing surveillance of long COVID deaths.”
In September, the International Classification of Diseases, 10th Revision (ICD–10), added U09.9 under the heading: “Post COVID-19 condition, unspecified.” Underneath it reads: “This optional code serves to allow the establishment of a link with COVID-19. This code is not to be used in cases that still are presenting COVID-19.”
Disabilities caused by long COVID can range anywhere from fatigue to chest pain to mind fog to changes in the menstrual cycle, according to the CDC. About 4 million individuals can’t work because of long COVID, according to a study by the Brookings Institute.
For the CDC study, NCHS researchers examined death certificates mentioning long COVID as the cause or contributing factor of death from Jan. 1, 2020, to June 30, 2022.
“The age-adjusted death rate for long COVID was 7.3 per 1 million for males and 5.5 for females,” the study states. “Among the groups for which a reliable rate could be calculated, the age-specific death rate for long COVID increased with increasing age and was lowest among people aged 30–39 (0.9) and highest among those aged 85 and over (117.1), similar to the pattern for all COVID-19 deaths.”
The majority of deaths from long COVID were among non-Hispanic whites (78.5%) while 10.1% were Black and 7.8% were Hispanic.
Kevin Kavanagh, M.D., founder and president of the patient advocacy organization Health Watch USA, told Fierce Healthcare that “death certificates vastly underestimate the incidence of deaths. Unless there’s a checkbox or something on the certificate for the disease, it is unlikely that it’s going to pick up the underlying cause.”
Kavanagh cites a study published in Nature in April 2021 in which deaths from long COVID among patients in Veterans Health Administration hospitals came to 0.839%, more than twice as many as what NCHS researchers found.
Kavanagh adds that other studies have shown COVID affects almost every organ of the body. Some common diseases that individuals die from include heart disease, Alzheimer’s disease, lower respiratory disease, stroke and diabetes.
“All of which are known effects of the virus,” says Kavanagh. “This virus affects the central nervous system, it causes brain fog, cognitive problems. It causes hypercoagulation of the blood, which can cause heart attacks. It’s well documented to increase the chances of having diabetes.”