Two years later, why don’t we know more about long COVID?

After five semesters of COVID-19 and a brief summer respite, college campuses are preparing for the fall — wondering about masking, hybrid classes, booster requirements and adequate mental health services. Meanwhile, college-bound young adults have more anxiety and depression and COVID-19 fears don’t help.

What is shocking — and unacceptable — is how little systematic data we have from which to make good decisions as we move into the endemic phase of COVID-19. How prevalent is long COVID? How long is long COVID? Who is most likely to contract long COVID?

Reliable research on long COVID is woefully inadequate. Less than a dozen strong research studies have examined the incidence of long COVID, and the majority of these focus on relatively short-term outcomes. Only a handful follow people for as long as six months or a year, and their results differ markedly. 

An early study from China of patients hospitalized with COVID-19 before vaccination reports that more than one third of patients had persistent symptoms 6-12 months after infection, and a study from Russia reports equally dire findings. Yet, a more recent study from the U.S., conducted through the Veterans Administration with people who were infected with COVID-19 but not hospitalized, showed an excess of 10 percent had persistent symptoms six months later. Other data from the United Kingdom or based on meta-analyses put the percentage closer to 5 percent or less.

It is perhaps not surprising that the most comprehensive studies come out of China, the U.K.’s National Health Service and the U.S. Veterans Administration, which all have unified electronic medical records and the ability to track cohorts of patients.

Meanwhile, from the allegedly most sophisticated health care system in the world, we cannot generate basic data that are paramount to supporting the population’s health. The lack of data reflects a gaping hole in our public health system, modeled on federalism. As the recent Meeting America’s Public Health Challenge report from the Commonwealth Fund concludes, fragmentation and lack of unified public health data systems continue to thwart proactive responses to COVID-19 and other health threats, as we lack accurate, real-time and generalizable data about the public’s health. While the National Institutes of Health’s efforts in funding important cohort studies like NIH Recover should be applauded, they represent a whack-a-mole strategy when a far more systematic and reliable approach is essential to rebuild the public’s trust in our public health system and its recommendations.

Wishful thinking that the Centers for Disease Control and Prevention (CDC) will come to the rescue is undermined by the fact that it is underfunded, lacks authority and depends upon roughly 2,800 separate county-level health departments to accomplish much of its local-level work. These county health departments are largely funded and governed by state governments, which the CDC can cajole but not direct.

Still, in less than eight weeks, thousands of colleges and universities have to implement decisions about campus life. We are fairly educated at this point about the relatively modest symptoms that attend most, but not all, COVID-19 cases. That is helpful. But we are missing key pieces of information that should influence our decisions — the expected prevalence and distribution of long COVID in our community.  

What if at the start of the pandemic, substantial grants had been made immediately available to a handful of health centers across the country to enroll symptomatic and asymptomatic positive cases and provide the infrastructure to track them over time? We would be in less of a bind now. Instead, here we are, 30 months into the pandemic without even one valid 12-month follow-up study from the U.S. 

Without a more proactive data strategy, we continue to miss the opportunity to effectively respond to this and future public health crises.

Elizabeth H. Bradley, Ph.D. is president of Vassar College. Bradley helped to draft the guidelines for New York higher education reopening in the midst of the COVID-19 pandemic. Howard P. Foreman, MD, MBA, is the director of the MD/MBA program at Yale School of Medicine and director of the Health Care Management Program at Yale School of Public Health.