This year marks the third year of the COVID-19 pandemic. Over time, as the virus morphed and continued to disrupt our daily lives, people around the world grew tired of COVID restrictions. As a result, we saw mask mandates lift, social distancing practices fade, and vaccination rates decline as more shots became available. Understandably, people were — and still are — longing for pre-pandemic normalcy. Nonetheless, a looming reality remains: With hundreds of deaths and thousands of hospitalizations each week in the U.S. alone, the pandemic is neither over nor behind us.
To date, there have been more than 770 million cases of COVID-19 worldwide. While ranges vary, approximately 10% of adults in the U.S. who have contracted the virus are currently experiencing long-term symptoms. Persistent fatigue, cognitive issues, shortness of breath, and chest pain often top the list of reported maladies. For some, these symptoms resolve after a few months, but many others report debilitating health issues for years, causing them to seek employment in less demanding jobs or leave the workforce altogether. Many of those who endure these persistent symptoms — which we’ve all come to know as long COVID — experience disruption in their everyday lives, often reaching beyond the physical realm.
Recent estimates show that the average cost of long COVID care per person is approximately $9,000 per year, with families of patients often sharing that financial responsibility. What’s more, though long COVID has been recognized as a disability, some people have reported barriers to filing successful insurance claims, adding healthcare costs to an already heavy burden of chronic illness.
Living in a state with one of the highest COVID-19 mortality rates for Black people at the time, I (Taylor) recall the earlier days of the pandemic in Atlanta. First came the chaos and then came the devastation that seemed to disproportionately impact communities of color. I watched in horror as family, friends, colleagues, and neighbors lost loved ones to a virus we seemed to know little about. While the racial and ethnic disparities of COVID-19 quickly became clear, it was also clear that these disparities were more societal than biological. Atlanta — the city I love — went from being a place of rich, Black history, to one ridden with fear and loss. When people began to develop health issues beyond their acute illness, members of our community banded together to find out why.
In 2020, following a growing number of reported health issues several weeks to months after COVID infection, patients drove scientists and policy-makers to fund new research into what patients coined “long COVID.” This collective advocacy kindled programs like RECOVER (Researching COVID to Enhance Recovery), a nationwide initiative dedicated to understanding, treating, and preventing long COVID. To date, over 400 researchers, more than 50 patient, caregiver, and community representatives, and over 25,000 study participants have joined the RECOVER effort to help unravel the many mysteries of long COVID. We are three of those people working within the effort — a patient representative, researcher, and community engagement leader — and we’re here to emphasize why keeping COVID-19 front and center is critical, despite society’s desire to put it in our rearview.
So far, insights gained from RECOVER research have:
- Characterized the risk of long COVID for different strains of the SARS-CoV-2 virus
- Explored racial and ethnic disparities seen among long COVID patients
- Identified potential risk factors for the condition, such as sleep apnea, that may help inform future treatment
Some of the patients who called attention to and helped name long COVID were also involved in developing the RECOVER study protocols pushing for representation at the forefront. Thus far, RECOVER observational cohort studies have enrolled people from all 50 states and Puerto Rico with the goal to closely match the diversity of the U.S. population. And our researchers are now analyzing over 50,000 samples of blood, urine, and body tissues, as well as highly detailed imaging and mobile health data to better understand the causes and broad health effects of the elusive condition. In July, RECOVER announced open enrollment for a new arm of the study — clinical trials — which will evaluate long COVID treatments through drugs, biologics, medical devices, and other therapies. The viral persistence (RECOVER-VITAL) and cognitive dysfunction (RECOVER-NEURO) trials are the first to launch.
Despite the ongoing research efforts, nearly 7 million deaths worldwide, and the continued devastation COVID inflicts on people across the globe, we must also recognize yet another reality: the evolving virus at the core of the current pandemic has placed us at a crossroads. Many public health emergencies enacted by governments have already or will one day come to an end. At the same time, given the unpredictable nature of viruses — and current uptick in cases globally — we must acknowledge the ongoing need to continue surveillance, vaccination, and research programs to protect the health of communities worldwide and alleviate the suffering of long COVID patients.
Everyday actions can also help. We can be advocates in our own circles by educating those who may not be aware of long COVID’s impact. We can remember that COVID safeguards — such as masking and testing protocols — don’t only protect ourselves, but also others, like the elderly or those susceptible to becoming seriously ill, including those with long COVID. We can trust that good science takes time, and that researchers around the world are simultaneously and collaboratively searching for solutions.
After years of restrictions, many may declare the current phase of the pandemic as COVID’s final act. But driven by the pursuit of science, prospect of hope, and the millions still seeking answers, we are committed to keeping the virus center stage.
Stuart Katz, MD, is principal investigator of the RECOVER Clinical Science Core at NYU Langone Health. Alice Perlowski, MD, MA, is founding director and chief medical officer of Blooming Magnolia (a non-profit providing grant support to long COVID patients), a cardiologist, and a patient representative of the RECOVER study. Brittany Taylor, MPH, is a community impact director at the American Heart Association and co-chair of the RECOVER National Community Engagement Group. The views expressed in this article are the authors’ alone and should be considered independent of RECOVER and its collaborating institutions.
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