Why long COVID is a challenge payers, providers must be ready to grapple with long-term

Long COVID is far more common than many think, and it will pose a long-term challenge payers and providers must grapple with, a new study shows.

Roy Perlis, M.D., director of the Center for Quantitative Health at Massachusetts General Hospital and the study’s corresponding author, told Fierce Healthcare that “first and foremost, our work indicates that long COVID is prevalent, not a rare outcome for a few unlucky people. A strength of our study design is that we’re able to estimate just how prevalent, since we aren’t only surveying people who have a particular interest in, or concern about, COVID. And, while we show differences by age and gender, long COVID is clearly not limited to any particular subgroup.”

For the study, which was published in JAMA Network Open, researchers conducted a survey between Feb. 5, 2021, and July 6, 2022, in all 50 states and Washington, D.C., with 16,091 respondents confirming that they’d tested positive for COVID-19 at least two months before the survey. Of that group, 2,359 (14.7%) said that they still experienced COVID-19 symptoms after acute illness.

Of the 12,441 individuals who tested positive for COVID-19 at least six months before the survey, 1,843 (14.8%) reported continued COVID-19 symptoms. Of the 7,462 individuals who tested positive at least 12 months previously, 1,135 (15.2%) reported continued symptoms.

“A key question for further investigation will be the differences by race and ethnicity in the prevalence of long COVID that we observed, even after accounting for a range of sociodemographic correlates,” the study said. “These differences cannot be explained by a lack of access to COVID-19 testing because our outcome definition was contingent on obtaining such a test.”

Greater educational levels, greater income and living in an urban setting versus a rural one were associated with a diminished risk of getting long COVID and underscores the importance of nonbiological links to COVID-19. Racial and ethnic minority groups, or poorer individuals, may be at greater risk for long COVID because they experienced a disproportionately higher level of acute infection, researchers note.

Of the 16,091 respondents who’d been diagnosed with COVID-19 at least two months before the survey, the mean age was 40.5; 10,075 (62.6%) were women while 6,016 (37.4%) were men. In addition, 817 (5.1%) were Asian, 1,826 (11.3%) were Black, 1,546 (9.6%) were Hispanic and 11,425 (71.0%) were white.

“Finally, the suggestion that rates of long COVID may vary by predominant variant at time of infection also merits further investigation because it may help to inform efforts to understand the mechanisms underlying the development of this syndrome,” the study states.

Perlis, who is one of the associate editors of JAMA Network Open, tells Fierce Healthcare that “the observation that risk is different depending on when people were infected, and whether they had previously been vaccinated, provides even more support for there being a biological basis of long COVID.”

The Centers for Disease Control and Prevention (CDC) states that “CDC and partners are working to understand more about who experiences post-COVID conditions and who, including whether groups disproportionately impacted by COVID-19 are at higher risk.”

This lack of understanding may prompt health plans and/or employers to resist coverage for long COVID care for the same reasons that there has been some resistance to coverage for conditions such as fibromyalgia or chronic fatigue system: that long COVID might be more of a psychological condition than a biological one, that it’s “all in the head.”

To which Perlis responded: “As far as psychological conditions: The brain is the brain. Our results indicate that a subset of long COVID symptoms likely do involve the brain. It’s hard for me to see why that would be a reason to ignore an illness, any more than we ignore other brain diseases.”

Regarding long COVID treatments, Perlis echoed the CDC in saying that “the lack of evidence-based treatments is definitely a problem. Our study can’t speak to treatments, except to highlight that we need to invest in finding them. We treat lots of conditions in medicine where there is not a perfect consensus about diagnostic criteria. If we’re waiting for perfect information, we’ll be waiting a long time and ignoring a lot of distress and disability.”

The study follows the structure of medical research by including a limitations section toward the end, but researchers circle back to again underscore the importance of their work: that “by design it should be more representative than other single-cohort studies because it captures individuals drawn from every state. … [B]ecause recruitment materials did not specify COVID-19 or persistence, our results are less likely to reflect individuals with greater interest in COVID-19 persistence.”