As COVID-19 infections decline in Santa Clara and San Mateo counties, the medical profession is grappling with another facet of the disease — mysterious symptoms that researchers say can persist for months.
Called "long COVID-19," the syndrome can cause a constellation of symptoms: breathing difficulty, headaches, debilitating fatigue, brain fog and organ damage.
Whether long COVID-19 will last a few months, a few years or a lifetime will take time to understand, a group of medical professionals and researchers said during a special hearing of the Santa Clara County Health and Hospitals Committee on Tuesday, Oct. 26. Many COVID-19 long-haulers can't work or attend school. How younger populations, including children, will fare over the long term or whether they will develop learning abilities and health issues with societal impacts remains unclear.
To truly treat those afflicted with the illness, local and national governments will need to develop policies and multidisciplinary teams of physicians to address the physical, cognitive and psychological challenges posed by long COVID-19, the researchers told the health and hospitals committee.
What is long COVID?
Long COVID-19 can be many things. Just exactly where the dividing line lies between recovery from COVID-19's persistent symptoms and long COVID-19 syndrome is not easily definable.
It's not unusual for COVID-19 patients to have persistent symptoms for two weeks to two months after an acute infection, said Dr. Brian Block, assistant professor at University of California, San Francisco, School of Medicine Division of Pulmonary, Allergy, Critical Care and Sleep Medicine and the associate director of the medical ICU. But that's not long COVID-19.
Long COVID-19 is a syndrome of persistent symptoms lasting at least two or three months after the initial infection. Typically, people have breathing problems and cognitive dysfunction, but it often affects organs, Block said. Physicians should first rule out other diseases with similar symptoms, such as cancer or hypothyroidism, before making a long COVID-19 diagnosis, he added.
Long COVID-19 mainly affects those who have been hospitalized. People with obesity or who had five or more symptoms during their initial infection have a higher risk of developing long COVID-19, said Dr. Hector Fabio Bonilla, Stanford Hospital and Clinics clinical associate professor of infectious diseases who also practices at the Post-COVID-19 Syndrome Clinic.
But long COVID-19 can affect people with mild symptoms from COVID-19. Patients also can have a complete recovery and then symptoms of long COVID-19 will later appear.
People ages 25 to 50 and women are most likely to have long-term complications from the virus, the researchers said. Many young people who have developed long COVID-19 were presumed to have underlying conditions such as diabetes or asthma, but that hasn't turned out to be the case, Bonilla said. Studies have found that long COVID-19 has affected the healthy population. Research on Italian and German soccer players, a normally robust population, found their performance declined in soccer games if they previously had COVID-19, he said.
Concern for societal impacts and developing strategies for care
The researchers said they are particularly concerned for younger populations, including children, who develop long COVID-19. Whether it will affect their learning abilities through life and ability to hold jobs remains unknown. It will take time to see what happens five years from now and how it affects young people in high school and college and the next generation of workers, Bonilla said.
Currently, about 20% of patients have long-term COVID-19.
"They're struggling to go back to work, to school and to complete tasks in the home," Emily Hough, a Harkness fellow in health care policy and practice at the Commonwealth Fund, said. Policymakers and the medical profession will need to figure out how to make a support system for those people on a local and national level, she said.
With 125 million people in the U.S. having been infected with COVID-19, the number of people who could potentially be coping with long-term COVID-19 in this country is staggering: 15 million to 25 million people, Block said.
"Tens of millions of people are at risk for this. We don't have the multidisciplinary teams that can be needed," he added.
Santa Clara County Executive Jeff Smith, a physician, said the county is looking at developing a clinic to specifically address long COVID-19.
The medical profession also needs to develop criteria to help physicians identify long COVID-19 cases and how they can be treated, Bonilla and Block said. Some patients are having their symptoms dismissed, and many physicians don't yet understand the syndrome.
A survey of Santa Clara Valley Medical Center physicians found that only 5% of respondents had made referrals for suspected long COVID-19, and most of those were for pulmonary issues, said Dr. Angela Suarez, medical director of primary care.
Because long COVID-19 can affect multiple parts of the body, multidisciplinary teams will be necessary to address the physical and other impacts, such as a patient's cognition, mood and well-being. It's important for patients to see clinicians they trust and with whom they have a relationship. Having a therapist work with doctors can help address symptoms, Block added.
The medical profession has not yet developed criteria for diagnosing long COVID-19. Its complexity has made it difficult to understand. Santa Clara Valley Medical Center has only recently added a diagnostic code for long-term COVID, said Dr. Supriya Narasimhan, chief of the infectious diseases division.
Early treatments with steroids, monoclonal antibodies and, if it is federally approved, the Merck oral medication, for reducing the effects of the virus, can reduce the inflammatory response that causes severe COVID-19 and the risks of long COVID, Narasimhan said.
The best strategy for preventing long COVID-19 is to not get COVID-19 at all, she said. The best way to prevent COVID-19 infection is to get vaccinated. Getting vaccinated can prevent 50% of long COVID-19 cases, she said.