Wyva
Senior Member (Voting Rights)
Karen Bonuck, Qi Gao, Seth Congdon & Ryung S. Kim
Open access: https://www.nature.com/articles/s43856-026-01516-7
Abstract
Background
Five years since the scientific and patient communities first identified the syndrome now known as Long COVID, affected individuals lack treatments, and the US lacks population-based data on its disability burden and correlation with National Institutes of Health (NIH) funding. Moreover, akin to other debilitating conditions it often co-occurs with, e.g., Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia, Long COVID disproportionately impacts females whose concerns are often marginalized.Methods
We quantify Long COVID years lived with disability (YLDs= prevalence x disability weight) in US adults and its actual/YLD-commensurate average annual NIH FY2022-2024 funding versus 68 comparator conditions, by sex predominance. We derive Long COVID prevalence from Census Bureau surveys (9/2022-8/2023) and apply disability weights from the Global Burden of Disease Study.Results
Long COVID YLDs approximate those of Alzheimer’s and Asthma. Long COVID received 14% of its disability commensurate funding: $106 million vs. $739.8 million. ME/CFS is the most under-funded condition, receiving <1% of its YLD proportionate funding. Among conditions analyzed, 24 are female-predominant (we estimate Long COVID funding two ways), 12 male-predominant, and 33 show no sex predominance. Among the 12 below-median funded/above-median YLD conditions, 7/12 are female-predominant, none are male-predominant. Median funding/per YLD is 5.2 times higher for male- vs. female-predominant conditions (7.0 vs 1.3 million per YLD, p = 0.007). Overall, YLDs explain 6.5% of funding variance in a linear regression model using YLD as the sole predictor (Adjusted R-squared: 0.065).Conclusions
With chronic conditions like Long COVID rising, disability burden merits greater consideration in funding decisions, as does biological sex.Plain language summary
Disability accounts for most Long COVID disease burden, with women most affected. Yet the US lacks data on Long COVID’s disability burden and relative research funding, compared with other conditions. We derived “years lived with disability” (YLDs) for Long COVID in US adults versus other conditions. Long COVID’s disability burden rivals that of Alzheimer’s and asthma. Yet Long COVID receives only 14% of its YLD-proportionate funding—$106 million instead of $739.8 million from the National Institutes of Health (NIH). Conditions affecting mostly men receive 5.2 times more funding/YLD than those affecting mostly women. Overall, YLDs explained just 6.5% of NIH funding levels. Long COVID highlights opportunities for NIH research funding to better align with disability burden and address sex-based disparities.Open access: https://www.nature.com/articles/s43856-026-01516-7