The latest CDC data on long COVID in U.S. adults and an alarming World Health Organization (WHO) statement about its long-term impact underscore the pandemic’s lingering and debilitating effects. Like the satirical film “Don’t Look Up,” in which scientists couldn’t focus media or politicians on the climate crisis, most Americans are content to avert their eyes from the long COVID crisis. Meanwhile, the millions now missing from public life because of it have no choice but to stare down the gamut of its sweeping sequelae.
As an NIH-funded researcher, I study child feeding and sleep, and co-direct the University Center of Excellence in Developmental Disabilities. For years I have been an ally to families who have advocated for individuals with disabilities. As a mother, I’ve now become an advocate and supporter for my daughter as she fights a daily unseen battle and continues to struggle with long COVID, 3 years after contracting the SARS-COV-2 virus. In fact, the average person loses 21% of their health while living with long COVID — equivalent to traumatic brain injury.
Long COVID: Persistent and Prevalent
Earlier this year, an Israeli study suggested that many long COVID symptoms resolve within a year. But you can’t see what you don’t measure: fatigue wasn’t studied, despite ranking among the top long COVID symptoms globally, in the U.S., and even following asymptomatic infection. CDC data confirms my tracking of the literature and family’s experience — long COVID is prevalent and impactful. In the latest CDC data, just over 15% of U.S. adults ever had long COVID, and 5.8% (about 15 million) currently have it. For a condition that’s fallen off the radar for those untouched by it, the percentages of U.S. adults reporting any (4.9%) and significant (1.5%) activity limitations is astonishing.
The persistence of long COVID (as shown above) is consistent with studies of people followed 2 or more years post-infection. Yet, funding for research on effective therapies or cures has been insufficient. The dearth of clinical trials has been a key target for advocates and scientists. In fact, 2 years after the NIH heralded its “RECOVER” initiative, there is little to show for the $1 billion that went into investigating long COVID. People are still suffering in real and devastating ways — my 20-something daughter still finds it difficult to walk more than a few blocks and had to move back home last winter after living independently since college.
Gaslighting and a Misguided Victory Lap
Leaning into my disability advocacy hat, I have been reaching out to people across disciplines and government to sound the alarm that long COVID is a mass disabling event. And it is not going to disappear, as much as media outlets and policymakers want to move on and ignore it.
In early June, I emailed my local legislator’s office, highlighting the depressing statistics and sharing my daughter’s clinical and care-seeking trajectory since 2020. Like other long COVID survivors, she has endured medical gaslighting, diagnostic odysseys, and sees no treatments on the immediate horizon. I was hopeful when I saw an email in my inbox from the legislator’s office. At minimum, I expected he’d acknowledge my daughter’s struggle, or recognize the impact of long COVID on his other constituents. More optimistically, perhaps the reply would outline steps he’s taking to alleviate long COVID’s continuing impact and efforts his office is undertaking to press for badly needed patient-centered research.
Instead, the auto-reply cited the legislator’s support for the “recent” $8.3 billion COVID relief package (passed in 2020) and referred to my home state’s COVID emergency declaration (lifted in March 2022) in the present tense. This robotic non-response exemplifies the “mission-accomplished” stance of many policymakers towards long COVID. The proverbial tying of the bow on the pandemic’s end exemplifies our culture’s discomfort with disability — its ubiquity, ordinariness, and unpredictability. It is easier to take the victory lap, and then quietly acknowledge those still trying to exist with the disability.
So, what can you do as a healthcare professional?
Listen to your patients — and believe them. Chances are, your patient with “unremarkable” testing and labs, who’s had unrelenting fatigue for months or years after COVID infection has had enough medical gaslighting. Honor their lived experience and show humility in what you don’t know about their condition.
Educate yourself. Stay up-to-date on long COVID research, diagnosis, and treatment. See if your patients are eligible — and can access — a clinical trial. Learn about and use (as appropriate) the new ICD-10 code for Postural Orthostatic Tachycardia Syndrome (POTS), a condition seen in more than half of long COVID patients.
Advocate. Use your voice as a healthcare provider. Given how policy decisions affect medical practice, consider researching and supporting long COVID legislation that will create patient-centered registries, fund research on post-infectious disease treatments, conduct public education, or offer research grants. See if your representative is already sponsoring these bills, and if not, consider encouraging them to do so.
You can make a difference to your patients — or perhaps even loved ones or peers — who’ve had to duct-tape their lives back together after long COVID. Help rewrite the “Don’t Look Up” script for the millions with long COVID in the U.S. with your advocacy and support.
Karen Bonuck, PhD, is co-director of the University Center of Excellence at Montefiore Einstein, a pediatric health researcher and professor of family and social medicine at Albert Einstein College of Medicine in New York City, a disabilities advocate, and a mom.
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