While society yawns, impatient to move on from the COVID-19 pandemic, Americans still play disability roulette. About 1 in 10 of the 110,000 people who catch COVID this week in the United States, many for a second or third time, will be left lastingly ill. Even some vaccinated people; even some young, previously healthy people, after only mild cases.
No longer a mass death event, COVID-19 is an ongoing mass disability event. Every seven days, 25,000 more people join the 10 million in our country suffering memory loss, heart problems, dizziness, extreme fatigue, and more owing to the virus. Globally an estimated 65 million people have this new chronic health condition. One recent long COVID study showed organ damage in more than half of a group of outpatients one year on.
In a recent study from Sweden following long COVID patients out to two years, more than 80 percent of 185 people who met the diagnosis of long COVID at four months (and 1 in 3 of the total 460 COVID-19 patients tracked) still had ongoing cognitive, muscle, and fatigue symptoms affecting everyday life at two years. In fact, over half of those on sick leave related to long COVID four months after acute infection remained unable to return to work two years later.
I see some of these folks in our Critical Illness, Brain Dysfunction, and Survivorship Center’s long COVID support groups and as their physician during inpatient care. Many can’t return to work because of cognitive or physical impairments. They are losing hope. Some of the $5 billion President Biden wants to spend on “NextGen” COVID research should be earmarked to help them.
The Department of Health and Human Services considers long COVID a disability. Yet these patients fall through the cracks. They are often let down by physicians who are unclear how to diagnose an illness so new and varied. They are repeatedly denied disability benefits and struggle to find health care because they are newly out of work and without insurance. A recent National Institutes of Health-sponsored study at 44 US medical centers found 56 percent of people hospitalized with COVID-19 struggled to pay their bills six months out due to ongoing heart and lung problems. Even bathing and preparing meals is hard for many.
Take Trinity Peacock. A 20-year-old student from Atlanta, she spoke to me in my office about how a super-spreader family funeral in 2021 left several of her loved ones with long COVID. “My family has been offered no support in any way. No therapy, no compensation,” she told me. “The COVID convo has died down while we are left to suffer.” It’s been two years, and multiple people in her family have ongoing problems with long COVID.
Numerous studies document the haunting brain impacts of long COVID, from loss of supportive cells in the brain called glial cells, to early death of our neurons leading to signs of early dementia in too many long COVID patients, even young ones who had only mild infectious symptoms during their initial COVID infection. Among the 10 percent of patients estimated to get long COVID, many of them experience cardiac problems like a racing heart and profound dizziness when they try to stand or sleep. Some have cramps, diarrhea, and bloating owing to problems with shifts in gut bacteria in antibiotic-treated COVID patients referred to as “gut dysbiosis,” which means that the normal bacteria are replaced with more dangerous blooms of organisms that wreak havoc on overall health by enabling dangerous secondary infections during and after COVID.
Thanks to COVID-19 patient-led research and activism, early notions about how to treat long COVID are emerging. Of the 1,000 patients with acute COVID who were randomized to either a placebo pill or metformin, a diabetes drug with anti-inflammatory and antiviral properties, those who received metformin for two weeks were 42 percent less likely to be diagnosed by their medical providers as having long COVID nine months later. Unvaccinated people who got COVID were twice as likely to develop long COVID. These metformin results, and those of other preventive approaches to long COVID, are under further study before being fully recommended by the Centers for Disease Control and Prevention.
Yet society at large just doesn’t seem to care. To date, the $1 billion earmarked for long COVID research through the NIH has yielded precious little. Mental and bureaucratic wranglings have study design teams stalled, and the long COVID, medical, and scientific communities are frustrated by the delay in answers.
Science doesn’t validate injury. People do that, or they don’t. Government and policy makers operationalize actual relief, or they don’t.
The White House is promising assistance to those suffering from long COVID and dealing with COVID-related loss, as well as those experiencing mental health and substance use issues related to the pandemic. Members of various long COVID support groups run by research groups, who like our CIBS Center have repurposed themselves to meet the driving unmet needs of the public, and, importantly, patient-led activist groups, tell us nightmares of rejection and bankruptcy that have ruptured their lives and left many homeless. Patients tell us they feel ignored, stigmatized, depressed, and suicidal. Our compassion and empathy, as well as our tax dollars, must rise to meet these millions.
Long COVID patients are the experts. They need clinics, support groups, and robust trials, as quickly as possible. They need safe and effective treatments and rehabilitation strategies. It needs to be easier for patients to get disability services and funding without navigating a maze of dead ends.
A recent reflection on the pandemic in the New England Journal of Medicine did not mention long COVID. People disabled by previous pandemics, like influenza or polio, were also in society’s blind spot. In 2023, the millions floored by the dragon’s tail of COVID-19 deserve much better.
There are still about 17,000 new COVID infections and over 260 COVID deaths every day in the United States. The 20 percent of Americans who have had their full series of shots including a bivalent booster are 14 times less likely to die than the unvaccinated and three times less likely than those who received only the original series.
As an ICU physician, I’ve had a front-row seat to the heartbreak of the past three years. Two years ago, all but two of my patients were on ventilators with COVID-19. This week, I’ve had just two patients with the virus.
Some of the mooted $5 billion successor to Warp Speed, Project NextGen, should be earmarked to develop treatments for long COVID, because it’s a public health disaster hiding in plain sight.
Dr. Wes Ely is a professor of medicine and critical care at Vanderbilt University and the Nashville VA Medical Center. He is codirector of the Critical Illness, Brain Dysfunction, and Survivorship Center and author of “Every Deep-Drawn Breath.” He can be found on Twitter and TikTok @WesElyMD.