205,000 people in Connecticut have long COVID symptoms, advocacy group says
FILE PHOTO: In this file photo nurse Natalie O'Connor loads syringes with the Moderna Covid-19 Vaccine before heading out to see patients at their homes at Hartford HealthCare at Home in Bloomfield, Connecticut on February 12, 2021.
Joseph Prezioso / Getty ImagesDr. Mani Seetharama is chief of rehabilitation medicine for Hartford Healthcare. He treats patients with what is called long COVID.
There are many symptoms associated with long COVID-19, not least of which are the blood clots that tend to show up in the lungs, among other places.
There’s also the “brain fog” some patients experience, the muscle and joint pain, difficulty breathing, and more. And these symptoms can remain months, if not years, after the acute COVID infection has resolved, he said.
“Some of them have not been able to return to work,” Seetharama said.
For example, Seetharama mentioned one patient, “a young guy who was a soccer coach who cannot get on the field and kick a ball one year post-COVID.”
Advocacy organization Solve ME estimates that number to be much higher: About 5.7 percent of the state’s total population — a total of 205,000 people.
A portion of viral infections, from influenza and other viruses, have always resulted in extended rehabilitation time, with many of the symptoms Seetharama and other doctors see with long COVID. But with long COVID, there’s one unique symptom: Anosmia, which is the loss of smell, and parosmia, which is a change of smell.
Both can be debilitating.
“I have a lady who’s lost about 80 pounds because she smells poop all the time,” Seetharama said. “She can’t eat because it smells like poop.”
All told, the long COVID clinic at Hartford HealthCare has treated 1,714 patients since October 2020. But that is likely just a fraction of the total number of long COVID sufferers in the state, some say.
Seetharama said somewhere between 15 and 50 percent of coronavirus patients will have symptoms that last months, classified as long COVID, though all but 10 percent of those eventually resolve.
As of Friday, there have been about 750,000 COVID infections identified in Connecticut. Some of those may be patients who have been infected more than once, but if 15 percent of those cases resulted in long COVID, that would mean 111,000 people in Connecticut have dealt with the disease long after the initial viral infection was treated.
However, Solve ME estimates that number to be much higher.
Of the 205,000 people Solve ME estimates have long COVID, 68,000 patients — 1.9 percent of the state population — have what the organization describes as “disabling long COVID.” The organization said this would include symptoms that have not resolved after months and have prevented them from working and performing daily tasks, like climbing stairs.
Nationwide, Solve ME estimates there are 22 million U.S. adults living with long COVID, nearly 7 percent of the population.
“California has the highest number of cases of all 50 states, with more than 2.4 million,” the organization wrote about its findings.
“When looking at the proportion of a state’s population that is afflicted, Rhode Island tops the list, with an estimated 9.5 percent,” the organization stated.
Solve ME CEO Oved Amitay believes these are conservative estimates.
“Our model is not empirical,” he said. “It's a mathematical model.”
To know how many patients have dealt with or are currently fighting long COVID, Amitay said you need two pieces of data.
“You need to know how many people had COVID to begin with and then, based on that, you need to estimate how many of them could have longer-term symptoms that we call long COVID,” he said.
Connecticut regularly releases COVID metrics — the amount of new cases identified out of the number of tests that have been reported — but Amitay believes that is a “low estimate.”
“The recorded cases are those who tested positive and reported to the CDC,” he said. “In the early stages of the pandemic, tests were not available. So there's certainly an underestimate of that. More recently, people are using home testing, so that's not reported to the CDC.”
The Centers for Disease Control and Prevention also randomly tests for antigen levels to better determine the extent of disease transmission. Amitay said that number is probably a better estimate, but still perhaps falls short, though that is the baseline they use.
“The estimate is that between 10 and 30 percent of people continue to have symptoms, beyond the first the first acute infection,” he said.”So that's what we use as an estimate. And of those about about 10 percent seem to be more symptomatic, and will lead to what we call ‘disabling long COVID.’”
Based on Solve ME’s extrapolation of the data, an estimated 1,366,667 have contracted COVID in Connecticut, including asymptomatic infections. If 15 percent of those have contracted so-called long COVID, that’s 205,000 patients.
Economic impact
Beyond the medical impact of long COVID, experts say there is an economic toll as well.
In March, the U.S. Government Accountability Office released a report on long COVID suggesting that between 7.7 million and 23 million people nationwide have been impacted.
“People with long COVID might leave the workforce, causing them to lose wages and employer-based health insurance,” the GAO wrote. “This could affect the broader U.S. economy through decreased labor participation and an increased need for use of (Social Security Disability Insurance) or other publicly subsidized insurance.”
In a January report, The Brookings Institution said long COVID may very well be contributing to the nation’s ongoing labor shortage, contributing to as many as 15 percent of unfilled jobs as well as the economic impact of lost and reduced wages.
According to Solve ME, the economic impact to Connecticut alone, was $3.7 billion as of Jan. 31.
They arrive at that number by estimating an average of $18,000 in lost wages per long COVID patient.
“The numbers that we're putting out are really just the loss of wages, medical expenses out of pocket, it doesn't really reflect any other cost to the system,” Amitay said. “So it's really just the personal burden.”
Why some get long COVID
One question Seetharama can’t yet answer is why some people get long COVID, while others do not.
Some have underlying issues like asthma or diabetes. Some don’t. About two-thirds of his patients are women, though Seetharama can’t say why that would be a factor.
“Their ages are not that old. The average age is between 40 and 50,” Seetharama said. “Many are young folks who have never been in a hospital.”
That would put the majority of patients at working age, Amitay said.
“We assume that most people were actually employed at the time that they had COVID,” he said.
There are two phases to a COVID infection, Seetharama said. There’s the illness caused by the viral infection itself, but there’s also the hyper-inflammatory response from the body that often follows, which can be as bad or worse than the symptoms caused by the virus.
At least in some patients, Seetharama said long COVID is a continuing inflammatory response.
“We have done lab work. Some of them we have found their inflammatory markers are high,” he said. “We don’t know why certain people are more susceptible to the so-called long COVID symptoms than others.”
It may also be that tiny particles of virus persist in the body, undetected by conventional means.
“Every day we are learning something new about this virus,” Seetharama said. “We don’t have enough of a knowledge base to understand how this virus acts.”
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