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 2½ 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% of the deaths, closely followed by adults 85 and older.
Almost 80% 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% 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 Guthe, 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.
DEATHS TRENDING DOWN
The number of U.S. deaths dropped this year, but there are still more than there were before the coronavirus hit.
Preliminary data -- through the first 11 months of the year -- indicates 2022 will see fewer deaths than the previous two covid-19 pandemic years. Current reports suggest deaths may be down about 3% from 2020 and about 7% vs. 2021.
U.S. deaths usually rise year-to-year, in part because the nation's population has been growing. The pandemic accelerated that trend, making last year the deadliest in U.S. history, with more than 3.4 million dying. If current trends continue, this year will mark the first annual decline in deaths since 2009.
It will be months before health officials have a full tally. The October and November numbers are not yet complete and a late-December surge could change the final picture, said Farida Ahmad, who leads mortality surveillance at the Centers for Disease Control and Prevention.
If the decline does hold, it will still be a far cry from where the nation was before the coronavirus appeared. This year's count is likely to end up at least 13% higher than what it was in 2019.
"We're [still] definitely worse off than we were before the pandemic," said Amira Roess, a George Mason University professor of epidemiology and global health.
Once again, most of the annual change is due to the ebb and flow of covid-19, which has killed more than 1,080,000 Americans since it first was recognized in the U.S. in early 2020.
This year started off horribly, with about 73,000 covid deaths in January alone -- the third-deadliest month from covid-19 since the pandemic began. For 2022, "the bulk of mortality was concentrated during that omicron wave at the beginning of the year," said Iliya Gutin, a University of Texas researcher tracking covid-19 mortality.
Monthly covid-19 deaths dropped below 4,000 in April and averaged about 16,000 per month through November. The monthly average for 2021 was more than double that.
Covid-19 will nevertheless end up as the nation's third-leading cause of death this year, just as it was in 2020 and 2021 -- behind the perennial leader, heart disease, and cancer.
Heart disease deaths, which have tended to surge in tandem with covid-19 deaths, are on track to be down from 2021, Ahmad said. And it's not clear whether the number of cancer deaths will change, based on preliminary data.
There may be some relatively good news regarding drug overdose deaths, which hit an all-time high last year. Provisional overdose death data posted by the CDC on Wednesday -- through the first seven months of this year -- suggests overdose deaths stopped climbing early this year, around last winter's end.
Also Wednesday, the CDC released its first report on deaths involving long covid -- long-term symptoms after a person has recovered from coronavirus infection. The CDC estimates that about 3,500 deaths from January 2020 through June 2022 involved long covid. That's about 1% of deaths in which covid was deemed the underlying or contributing cause.
Experts believe pharmaceutical weapons against the coronavirus have been making a difference. The Commonwealth Fund this week released a modeling study that concluded the U.S. covid-19 vaccination program prevented more than 3.2 million deaths.
"We all really would expect that the number of deaths -- and the number of severe cases -- would decrease, due to a combination of immunity from natural infection and vaccination ... and treatment," Roess said.
Information for this article was contributed by Frances Stead Sellers of The Washington Post and Mike Stobbe of The Associated Press.