Dr. Karen Bonuck is professor of family and social medicine at Albert Einstein College of Medicine. Her research uses diverse methods to understand the burden of different disabilities among children and adults.
Distinct diseases and conditions affect people (burden them) with different severities. These burdens can be quantified and compared by considering disease “disability weights” (which are given on a scale from 0–1, where 0 indicates a disability usually has no effect and 1 indicates the disability is usually fatal); disease prevalence; and disease-related mortality. Organizations like the Institute for Health Metrics and Evaluation and the World Health Organization combine these metrics to estimate the overall burden of different diseases.
Recently, Dr. Bonuck’s team quantified the burden of Long Covid for adults, compared it with the burden of other disabilities (e.g., ME/CFS, Alzheimer’s, traumatic brain injury), and assessed whether NIH investment into Long Covid research was proportional to its burden. By using disability weights and disease prevalences (but excluding mortality, since Long Covid is rarely fatal), the researchers found that Long Covid burdens adults about as much as Alzheimer’s disease, asthma, or alcohol-use disorder.
One might expect the NIH to devote more research funds to high-burden diseases, but Dr. Bonuck’s team found this was not necessarily the case. From 2022 through 2024, a condition with as high a burden as Long Covid’s should have received $740 million in NIH funding. Instead, Long Covid research got only $100 million (~14% of the expected amount). Even including the $1.15 billion allocated to the NIH RECOVER program, Long Covid research got only half of what it should have received (going by the researchers’ metric).
Importantly, Dr. Bonuck found severe underfunding was not only for Long Covid but was generally true for diseases predominantly affecting women. Six of the ten most underfunded conditions were those affecting women more than men, including ME/CFS (the most underfunded disease, receiving less than 1% of its expected funding); gallbladder disease (no. 7); Long Covid (no. 8); and anxiety (no. 10). None of the ten most underfunded conditions predominantly affected men. In contrast, six of the ten most commensurately funded conditions predominately affected men, and none predominately affected women. These findings highlight clear opportunities for the NIH to allocate funds more fairly for studying high-burden diseases affecting women.
The researchers noted some limitations to their study. For example, the NIH and other funders must consider many other factors beyond disease burden and prevalence, including healthcare costs, long-term mortality, transmissibility, and scientific opportunity (e.g., whether the current scientific environment offers any special window of opportunity to make substantial headway into a condition). In fact, disease burden is most often estimated by considering years of life lost, which was not done here because Long Covid is rarely fatal. Still, this study emphasizes that the NIH must do a better job at funding severely debilitating diseases that disproportionately affect women more than men, like Long Covid and ME/CFS.
This study appeared in Communications Medicine.
Why This Study Matters:
•Presents evidence to guide national health care policies: Highlights inadequate national response to Long COVID (which is estimated to cost the US economy $2–$30 billion, assuming symptoms last 1–3 years) and ME/CFS, with implications for recent structural changes at the NIH (e.g., the 2025 closure of the Office for Long COVID Research and Practice).
•Highlights systemic sex-based inequities in research funding: The first US-based study to directly compare disease burden and NIH funding for Long Covid, as well as for other conditions; documents persistent structural underfunding of high-burden diseases affecting women more than men (e.g., ME/CFS, dysautonomia, Long Covid).
•Validates severity of Long Covid and ME/CFS symptoms: Shows that Long Covid is more disabling that mild Alzheimer’s disease or uncomplicated diabetes, and as disabling as traumatic brain injury, complete hearing loss, or moderate chronic obstructive pulmonary disease; shows how when adjusted for prevalence, the burden Long Covid is as great as that of Alzheimer’s disease or asthma.
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