A study released Wednesday by the National Center for Health Statistics found that more than 3,500 Americans died of long-COVID-related illness in the first 2 1/2 years of the pandemic.
While those deaths represent a small fraction of the 1 million deaths from the coronavirus, they reinforce the danger of ignoring the lingering symptoms that many patients say their physicians have dismissed.
“A lot of people think of long COVID as associated with long-term illness,” said Farida Ahmad, a health scientist at the Centers for Disease Control and Prevention and lead author of the study. “This shows it can be a cause of death.”
While CDC data show that women are more likely than men to develop long COVID, the study found that men accounted for a slightly higher percentage of long-COVID deaths. Most of the documented long-COVID deaths occurred in older people, with adults between 75 and 84 years old accounting for almost 30 percent of the deaths, closely followed by adults 85 and older.
Almost 80 percent of the deaths occurred among non-Hispanic Whites. The death rate was highest - at 15 in every 100,000 people - among American Indian and Alaska Native people, and lowest among Asians.
“This is yet another piece of evidence that long COVID can be fatal,” said Ziyad Al-Aly, a clinical epidemiologist at Washington University and chief of research and development at VA St. Louis Health Care System. “Let’s not trivialize it or say it’s all in people’s heads.”
The deaths were identified from information entered on death certificates in the National Vital Statistics System - a methodology that experts, including the study’s authors, cautioned could result in a large undercount.
“Death certificate data is fraught with uncertainty and ambiguity, something acknowledged by the CDC,” said Francesca Beaudoin, head of the Brown University School of Public Health’s Long Covid Initiative. In the case of long COVID, those problems are compounded by varied definitions and terminology as well as clinicians’ familiarity with the condition, she said. There was no diagnostic code for long COVID until October 2021.
Nonetheless, the study reflects the need for further research into long COVID and potential treatments, experts said. As many as 1 in 13 adults, or 7.5 percent of the U.S. population, are experiencing symptoms that last three or more months after contracting the virus, according to the CDC.
The diagnosis is often associated with cognitive impairment, or brain fog, breathlessness, fatigue and coughing. But many patients report debilitating pain, racing heartbeats and severe neurological tremors. Others have symptoms linked to prolonged treatment on ventilators in intensive care, which can lead to extreme weakness and mental health disorders triggered by the experience.
Benjamin Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine, cautioned that it is difficult to draw conclusions from the study without additional details about the patients’ medical histories and the severity of their COVID infections.
“A death at weeks following severe infection leading to COVID pneumonia and hospitalization paints a different picture than deaths in non-hospitalized patients months following infection,” Abramoff said.
Some patient advocacy groups have been documenting suicides attributed to long COVID.
“I doubt most coroners are even familiar with the definition of long COVID, let alone the coding,” said Diana Güthe, who founded Survivor Corps. “Not a week goes by that I don’t hear of another suicide due to long COVID, but I have yet to hear of a single one of those deaths labeled long COVID.”
Al-Aly, who wrote an April 2021 paper that used Veterans Affairs data to demonstrate increased risk of death in the post-acute phase of COVID, said the study should be interpreted in the context of its limitations.
The cause of death listed on a death certificate is usually documented as the closest event, Al-Aly said. If a 35-year-old dies of a heart attack or stroke three months after having acute COVID, the death is not likely to be coded as long COVID, he said.
The numbers of long-COVID-related deaths will probably grow as medical education and use of long-COVID codes and documentation increase, said Hannah Davis, co-founder of the Patient-Led Research Collaborative. She also noted that the highest number of deaths came in 2022.
“This communicates that the risk of long COVID and deaths from long COVID will increase as long as infections continue,” Davis said.