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The more we learn about long COVID, the more reasons we have to get vaxxed and mask up

in this photo illustration a positive SARS-CoV-2 Rapid Ag antigen rapid test lies on a vaccination book on February 17, 2022 in Berlin, Germany. (Photo Illustration by Thomas Trutschel/Photothek via Getty Images)

The story of long COVID is still evolving. But three things are now clear.

First, the risk of long COVID is very real. A better understanding of its prevalence and medical scope is emerging.

Second, public health authorities failed to sufficiently warn Americans of the risk of long COVID over the past year — even as data mounted that it was a serious concern. Such warnings could have compelled more Americans to get vaccinated, wear masks, social distance and take other precautions to avoid infection.

Third, it’s not too late to do a better job. The risk of long COVID should be a centerpiece of public health messaging starting now and going into the fall and winter.

A fourth wave of the pandemic is now upon us. Some experts forecast that 50 million to 100 million people could become infected — many for the second or third time — between now and next spring. The daily case rate in recent weeks is estimated at half a million or more, due entirely to the highly infectious and immunity-defiant BA.5 variant. Deaths due to COVID-19 in some areas, while still low compared to last winter, have risen sharply in recent weeks. Nearly one-third of U.S. counties are currently rated as having a “high” case numbers, including California and Florida and most of the Southeast.  President Joe Biden tested positive this week — the latest high-profile infection.    

Yet, large swaths of the population remain unvaccinated and aversion to masking is rampant. Only about half of those eligible for the first booster have gotten it; the number for the second booster is 28 percent. That’s despite overwhelming evidence that immunity from the initial shots (as well as from prior infection) has significantly waned.

The Biden administration acknowledges the predicament and, pending Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) approval, plans to expand eligibility for second booster shots to all adults in the next few weeks. It’s currently available only to those 50 and older.

That presents a perfect opportunity to leverage new data and rising concern about long COVID to enhance vaccination and adherence to preventive measures.

Long COVID comes into focus

Until recently, the prevalence and medical impact of long COVID have been unclear. In both the medical literature and mass media, the incidence has been widely cited as between 10 percent and 30 percent of all who become infected. That broad range left many doctors, public health officials and the public confused and unconvinced.

At the same time, studies have linked a panoply of symptoms to long COVID, occurring anywhere from weeks to months after infection. Some skeptics suggested that a form of mass medical hysteria could be going on, with millions of people falsely attributing their ailments, physical and mental, to long COVID.

In recent months, however, studies have painted a much clearer — if not yet totally coherent — picture.

In May and June, the CDC reported the results of two key studies. Using electronic health record (EHR) data, researchers found that one in five people aged 18 to 64 who had tested positive for COVID experienced at least one of 26 conditions tied to long COVID. It was even more common for people aged 65 and over — one in four. The conditions occurred from 30 to 365 days after infection, although these patients who had no record of the identified conditions in the past.

The reported conditions ran the gamut — persistent fatigue and lethargy, rapid heartbeat; shortness of breath; muscle weakness; chronic pain; cognitive difficulties; heart, kidney, and lung issues; depression and other mental health issues. 

The second CDC study drew on data from a Census Bureau survey of American adults between June 1 to 13. It yielded similar results: 35 percent who had ever had COVID-19 reported symptoms consistent with long COVID lasting three months or longer. Also, 19 percent reported they were currently experiencing long COVID symptoms. That computes to 7.5 percent or 19.4 million American adults.

A new study from England complements and supplements the CDC’s findings. Reported in the journal Nature Communications, the study looked at ongoing survey data from 48,901 people who ever had COVID, confirmed by PCR tests. Of those, 14 percent reported they had long COVID symptoms.

Yet, a fourth recent study yielded results that have public health experts crossing their fingers. It found that the initial omicron variant appears less likely to trigger long COVID. Reported in Lancet, the study involved close to 100,000 people in England. The researchers found that 4.5 percent of those infected in the omicron period from December 2021 to March 2022 experienced any long COVID symptoms compared to 10.8 percent in the delta period between June and November 2021.

So, while the bottom-line numbers of how many people suffer from long COVID, and for how long, aren’t precisely pinned down yet, these recent studies leave no doubt that the phenomena poses a serious public health problem.

Even if it turns out — as some experts speculate — that the proportion of people with long-term long COVID (a year or more) will make up only around 1 percent to 2 percent of those who get infected, that’s still a huge problem. Given persistent low vaccination rates in much of the world, it’s feasible that 70 percent of the world’s population of 8 billion people could become infected by the end of 2023. That translates to 56 million to 112 million people globally with long-term long COVID, not to mention those with lesser forms of the condition. In the U.S., up to 4 million could be long-term cases (based on 90 percent of the population becoming infected; we’re already at about 70 percent).

With luck, other studies will confirm that omicron and its variants cause fewer cases of long COVID than previous variants. Also, newly formulated vaccines due this fall are expected to better target the omicron variants and could also reduce the risk of both acute and long COVID posed by new variants.

But we still need to compel people to act now. Reluctance to leverage fear of long-term illness to enhance vaccination and other preventive measures was perhaps understandable in 2021. It no longer is. The data is clear. Let’s scare people into action if we must.

Steven Findlay, MPH, is an independent health policy analyst and journalist. He previously worked as a senior health policy analyst at Consumers Union, as well as director of research and policy at the National Institute for Health Care Management.