Thankfully, COVID-19 cases are dropping sharply across the nation, and after a stumbled start, 22% of Americans have at least one vaccine dose. Now more than a year into this pandemic, we need to take another decisive step—let’s help people recovering from COVID-19. Millions of people are suffering from the long-term effects of the virus months after first contracting the disease.
These survivors, so-called long-haulers, are experiencing significant symptoms impacting their quality of life and ability to function, many months after diagnosis. They report a variety of symptoms including shortness of breath, extreme fatigue, joint and muscle aches, dizziness, “brain fog,” racing hearts and other persistent problems that in many cases lead to disability.
Nearly 30 million cases of COVID-19 have been diagnosed in this country, but the actual rate of people suffering from symptoms three or more months after infection is unknown. One recent study published in the journal JAMA Network Open reported that almost one-third of patients reported persistent symptoms. More than 30% of respondents reported worse quality of life compared to before getting sick. Cases are likely to grow until the pandemic ends.
“Anyone who has anything to do with the care and treatment of people who have had COVID-19 is aware that this is a phenomenon that is quite real and quite extensive,” noted Dr. Anthony Fauci, the nation’s top infectious-disease expert and an adviser to President Joe Biden.
There is an urgent need for the nation to create a robust, coordinated and comprehensive approach. We suggest the following:
First, let’s standardize the terminology to describe these post-acute COVID-19 syndromes. Without clear definitions there will not be clear diagnoses and we will not have an accurate picture of the scope of this devastating problem.
We also need collaboration among COVID-19 recovery centers nationally and among investigators to share data and interventions and to participate in new clinical trials.
Hackensack Meridian Health was among the first of dozens of centers created in the nation to treat the long-term effects of COVID-19. The center, the first in New Jersey which launched in July, has treated more than 700 patients and is expanding its reach throughout the region. We have enlisted primary-care physicians, cardiologists and pulmonologists and other experts so our patients receive comprehensive, seamless care. We are poised to enroll patients in research.
The network has treated thousands of COVID patients and quickly determined that coordinated specialized care was necessary for patients continuing to face lingering side effects and behavioral health care issues. Many more centers are being created. That is certainly a move in the right direction, but so many questions remain unanswered: What causes post-acute COVID-19 syndrome? Who is most at risk? How many people are affected? How long could symptoms last? Who has the best chance of getting better and who does not? Can we treat and even cure these symptoms?
The Centers for Disease Control and Prevention is already analyzing electronic health records data to assess short-term health outcomes among COVID-19 survivors, months after diagnosis and planning studies to monitor them for years, to assess long-term outcomes. We need to build on this approach and collaborate to ensure there is a complete and accurate picture of the symptoms, treatment and outcomes.
There is also a strong need to standardize the care of patients with post-acute COVID-19 syndrome and ensure that all aspects of care are addressed including primary care, rehabilitation, specialty care and behavioral healthcare. Behavioral health is a major component. Survivors report depression and anxiety, some of which is due to isolation as they recover. Others become depressed and anxious because their physical symptoms limit their activity and well-being. Support for these individuals is equally important as medical interventions.
Additionally, healthcare systems need support to continue providing care and research. Many of the symptoms long-haulers experience are serious and costly. Up to a third of people who needed dialysis while hospitalized for COVID-19 still require it, revealing unexpected long-term kidney damage. With up to 40% of COVID-19 patients treated in the intensive-care unit for acute respiratory distress syndrome, there is likely to be a dramatic increase in “post-ICU syndrome,” which may be associated with long-term cognitive and physical dysfunction, pain, and depression.
We also need to create networks to connect patients to access high-quality post-COVID-19 care, which includes social support. It needs to be one-stop-shopping. Debilitating conditions create lack of mobility and less socialization, which is even more pronounced during the pandemic. Countless patients battling other serious chronic illness have benefitted from support groups which ease loneliness, reduce stress and anxiety and provide a sense of empowerment to help people stay motivated to manage their illness. Long haulers should have the same support.
Lastly, let’s support basic research to understand the cause and reduce the risk of long-term COVID-19 symptoms as well as treat individuals suffering from these syndromes.
We must treat COVID-19 recovery as a national emergency with a much greater sense of urgency. The future of so many people depends on it.