Fact Check: False: Long COVID is rare so you don’t need to worry about it. COVID-19 is more prevalent than people think and can have a serious impact on your health.
Nearly four years after the first confirmed COVID-19 case, there are millions of people for whom COVID-19 continues to rear its ugly head in the form of Long COVID. However, there are millions of people for whom COVID-19 continues to rear its ugly head in the form of Long COVID. A persisting myth around Long COVID is that it is a rare occurrence, but according to the experts that we interviewed and recent data, that is not true. Understanding the true prevalence of Long COVID is vital for ensuring that there are enough resources available to those who are suffering—particularly those from marginalized groups at higher risk—and that future research is adequately funded.
Journalist and Long COVID patient Laura Weiss was first hit by COVID-19 during New York City’s first wave of infection early in 2020. Her symptoms dramatically worsened later in 2020 to the point where even walking was exhausting for her. Since then, she has seen multiple doctors, tried several medicinal and alternative symptoms management strategies, and eventually enrolled in a private Long COVID clinic, Real Time Health Monitoring (RTHM).
Laura pays out-of-pocket to access clinic services and still relies heavily on herself to serve as her own advocate to find care that works best for her. Having gone through it all herself, Laura knows first-hand how the perception that COVID-19 is over can affect people’s health, especially, she said, when people “don’t want to hear about [Long COVID] at all.” Whether due to a lack of understanding, compassion, or just a simple desire to be done with COVID-19, people across the country, health care professionals included, have been hesitant to recognize the urgency of Long COVID, leading to the common belief that it’s not there at all.
The World Health Organization (WHO) defines Long COVID as, “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.” Despite this definition’s marker of three months, millions of patients have had symptoms for up to two years after being infected with COVID-19.
According to data from the WHO collected in 2022, 6.9% of adults had suffered from Long COVID at some point, and 3.4% were dealing with Long COVID at the time of survey collection. While this is a relatively conservative estimate, there are many other studies that cite much higher statistics. A systematic review of studies conducted in adult populations in Europe and Asia prior to January 2022 found that 45% of those who had COVID-19, regardless of their hospitalization status, were experiencing at least one unresolved COVID-19 symptom after four months, particularly fatigue. Another study utilizing data from the 2022 U.S. Behavioral Risk Factor Surveillance System found that more than one in five (21.8%) of adults who ever had COVID-19 reported symptoms of Long COVID. In 2023, the Center for Infectious Disease Research & Policy estimated that over 18 million Americans had ever had Long COVID. Long COVID is a difficult disease to track for many reasons, not the least of which is how common the symptoms are. Long COVID can also range in severity, meaning there could be millions more than researchers estimate with a mild form of Long COVID who think they have a persistent cold or other form of sickness. Regardless of the true prevalence, we can see from recent data that Long COVID is likely more common than we think. It certainly surpasses the Orphan Drug Act’s definition of a rare disease—meaning it affects fewer than 200,000 people in the US—which is used as a benchmark for most federal health agencies.
Sasha Tabachnikova, a fourth year PhD student studying Long COVID at the Yale School of Medicine, explained in an interview with the AmNews that “when you read [the] literature on this topic it’s a very wide range of estimates of how many people are [experiencing] Long COVID. That is absolutely a challenge to give a number.”
Tabachnikova added that while interviewing those who had acquired COVID-19 during the first wave but had not reported living with Long COVID, many participants identified with some of the Long COVID symptoms.
This points to complications both in identifying study participants and diagnosing this complex collection of symptoms. Tabachnikova’s study cites yet another estimate of Long COVID prevalence, stating “prospective studies suggest that about one in eight individuals with COVID-19 experience persistent somatic symptoms that are attributable to past SARS-CoV-2 infection.”
Not only is Long COVID not discussed as often as it should be, but Black and brown communities are often left out of the conversation. Communities of color have higher rates of preexisting conditions, such as asthma, diabetes, and HIV, compared to their white counterparts, which can increase the risk of long COVID development. These disparities amongst certain groups are concurrent with data from the 2022 U.S. Behavioral Risk Factor Surveillance System, which found that Long COVID was more prevalent amongst adults under 65 years, women, American Indian, Alaska Native, multi-race and other groups, smokers, and people with a disability, depression, or obesity.
A beacon of hope recently came in the form of a Senate Committee Hearing in January hosted by the Health, Education, Labor, and Pensions (HELP) Committee. Titled “Addressing Long COVID: Advancing Research and Improving Patient Care,” the hearing included testimonies from two panels of witnesses. The first panel focused on first-hand experience with Long COVID and heard from two Long COVID patients and the mother of a pediatric Long COVID patient.
The second panel included researchers with professional expertise in studying Long COVID. The hearing was an encouraging sign that long COVID patients are being heard. There was agreement on both sides of the aisle that the federal government needs to be more involved in addressing Long COVID. HELP Committee Ranking Member, Senator Bill Cassidy (R-LA), in his opening remarks, referred to addressing Long COVID through policy-based solutions a “crucial” issue and emphasized the need for “improving research into preventing long COVID and creating effective treatments.” Though there is still a long way to go, the senate’s renewed focus on long COVID is a step in the right direction to ensuring that Long COVID’s effects are recognized and that increased efforts are being placed on ensuring that patients may eventually find relief.
For additional resources about COVID-19, visit www1.nyc.gov/site/coronavirus/index.page or call 311. COVID-19 testing, masks, and vaccination resources can also be accessed on the AmNews COVID-19 page:www.amsterdamnews.com/covid/. For those that may be suffering from the long-term effects of COVID-19, a list of post-COVID clinics in NYC can be found here: nyc.gov/assets/doh/downloads/pdf/covid/covid-19-care-clinics.pdf.