Preprint Long COVID Disability Burden in US Adults: YLDs and NIH Funding Relative to Other Conditions, 2024, Bonuck et al

[EndME]

Long COVID Disability Burden in US Adults: YLDs and NIH Funding Relative to Other Conditions

Abstract

Background-
Long COVID (LC) is novel, debilitating and likely chronic. Yet, scant data exist about its disability burden to guide scientific research and public health planning. We estimated Long COVID non- fatal disease burden in US adults and its FY2024 actual: burden-commensurate research funding from the National Institutes of Health (NIH) relative to other conditions, and biological sex.

Methods-
We present YLDs/100,000 for 70 NIH Research, Condition, and Disease Categories (RCDCs). Prevalence of disabling Long COVID was obtained from cross sectional surveys of representative samples of US adults, from September 2022 to August 2023. Disabling Long COVID was defined as incident symptoms persisting >=3 months post-COVID, that significantly compromise daily activities. We calculated burden-commensurate funding for the top YLD conditions and for female vs. male dominant conditions.

Findings-
Disabling Long COVID was reported by 1.5% (n= 10,401) of n=757,580 respondents: Compared to the overall sample, those with disabling LC disproportionately identify as female (64.4% vs. 51.4%) and experiencing disability (80.8% vs. 52.9%) anxiety (57.5% vs. 23.8%) and depression (51.3% vs.18.5%). It ranked in the top 25% of YLDs at 320/100,000, between Alzheimers (279.4/100,000) and asthma (355.7/100,000) but received just 10% of its actual: YLD-commensurate funding. Only 5 conditions received less actual: burden: commensurate funding, including Myalgic Encephalitis/Chronic Fatigue Syndrome (<1%), another post-viral, female-dominant condition.

Interpretation-
LC has debilitated 3.8 million (weighted frequency) US adults. Research funding for it, like other female dominant conditions, lags behind its disability burden.

https://www.medrxiv.org/content/10.1101/2024.01.09.24301057v1

 

[EndME]

Can’t say much about the methodology used other than that they used YLD (“years lived with disability”) rather than DALYs which others commonly use.

I’m not sure how accurate the official source for NIH funding is https://report.nih.gov/funding/categorical-spending#/. It doesn’t include the NIH funding for RECOVER, which however has anyways run out of funding. I’d guess for diseases that are more funded like HIV/AIDS or cancer this number tends to be an underestimate with additional NIH funding programmes listed elsewhere and for less funded diseases like LC or ME/CFS this funding will be more accurate.

It’s good to see that they didn’t skip over ME/CFS. They estimated the YLD of ME/CFS and used the new CDC estimates for this.

I was quite suprised how disabling Headaches/Migraines are rated according to this rating especially compared to something like Alzheimer & Other Dementias, MILD.

 

[ME/CFS Skeptic]

So they took the prevalence estimate of 1.5% from the CDC pulse survey and the disability weight of 0.21 from the Global Burden of Disease (GBD) Long COVID Study Group. Don't think the latter study has been published yet?

Can’t say much about the methodology used other than that they used YLD (“years lived with disability”) rather than DALYs which others commonly use.

Yes, they did not take Years Lost due to Death (YLL) in take account because lack of reliable data for it. As I understand it DALY = YLD + YLL.

That makes their NIH funding calculations a bit off because it doesn't take mortality into account. There is no reason why NIH funding should be commensurate with YLL only.