Tag: funding

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’s 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 more than 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 Alzheimer’s (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.

Research in Context Evidence before this study – We analyzed Long-COVID’s (LC) non-fatal disease burden in the US–represented by YLD (years lived with disability= prevalence x disability weight) — and National Institutes of Health (NIH) research 2024 funding relative to other conditions. We searched PubMed through 11/28/2023 for Long COVID prevalence (US), and Long COVID disability and disease burden (not US-specific). The keywords “years lived with disability” + “COVID” yielded n= 38 articles (11/29/23); but most referenced “disability-adjusted life years” (DALYs) in other countries. Similarly, “disease burden” + Long COVID yielded 23 papers, but no US YLD data. See Supplement 1 for meta-analyses, systematic reviews and US studies of Long COVID prevalence and impact.

We instead sourced YLD data from the US Census Bureau’s Household Pulse Survey (HPS) and the Institute for Health Metrics and Evaluation (IHME) /Global Burden of Disease (GBD) Long COVID Study Group. The HPS queries adults about Long COVID-related symptoms and their impact on daily activities. We applied the IHME/GBD’s estimated Long COVID disability weight of 0.21 and harmonized it with our LC case definition from the HPS data in consultation with IHME/GBD researchers. To harmonize IHME/GBD disability weights for non-LC diseases/conditions with the NIH’s terminology, we consulted with NIH staff. LC definition and measurement affects prevalence and burden estimates; our use of high-quality data sources and transparency in reporting how they were applied reduces the risk of biased assumptions.

Added value of this study- Long COVID is a chronic debilitating condition. While there is ample research on COVID’s acute illness and loss of life, there are no population-based data on its disability burden. We provide that data. To guide scientific research and public health planning, we report YLDs associated with disabling Long COVID (i.e., symptoms significantly limit activity), and; compare it to other conditions’ YLDs, NIH funding, and female-vs. male-dominance. It ranked in the top 25% of YLDs at 320/100,000, between Alzheimer’s (279.4/100,000) and asthma (355.7/100,000) but received just 10% of its YLD-commensurate funding. Only 5 conditions received less burden-commensurate funding; 3/5 were female-dominant, including Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS) at <1%, another post-viral condition that shares significant overlap with Long COVID. Overall, median funding/YLD was >= 5 times greater for male-vs. female-dominant conditions.

Implications of all the available evidence-Nearly 4 million US adults (weighted frequency) live with disabling Long COVID. They disproportionately identify as female and as having a disability, anxiety and depression. Yet NIH funding for diagnostic and treatment research for Long COVID hasn’t kept pace with its disability burden.

Source: Karen Bonuck, Qi Gao, Seth Congdon, Ryung Kim. Long COVID Disability Burden in US Adults: YLDs and NIH Funding Relative to Other Conditions. medRxiv 2024.01.09.24301057; doi: https://doi.org/10.1101/2024.01.09.24301057 https://www.medrxiv.org/content/10.1101/2024.01.09.24301057v1.full-text (Full text)

Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID

Press Release: LOS ANGELES, Dec. 4, 2020 /PRNewswire/ — Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.

With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora.Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.

Letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.

“Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis,” said Oved Amitay, CEO of Solve M.E. “Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population.”

The letter cites warnings from leading public health officials — including Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases — about the estimated 3.2 million Americans that could be temporarily or permanently disabled by Long COVID symptoms. Indeed, studies show that 66 percent of patients with post-viral acute respiratory distress syndrome report experiencing severe fatigue after 12 months, consistent with Dr. Fauci’s analysis that Long COVID symptoms are “highly suggestive” of ME/CFS. These alarming statistics underscore the urgent need for funding, research, diagnostics, and treatment into Long COVID.

Chronic disease experts unanimously agree that in order to adequately address Long COVID complications, Congress must act immediately and appropriate the following funds:

$110 million for the establishment of Long COVID Collaborative Research Centers and Centers of Excellence;
$60 million toward expanding post-viral disease research;
$3.5 million for the development and issuance of medical guidance about Long COVID to medical providers and front-line health professionals; and
$300,000 toward convening experts and stakeholders to establish data harmonization.

“We strongly encourage these funds be allocated to the NIH and CDC by way of the congressional appropriations process or a future COVID-19 relief package so this critically important research can begin immediately,” said Amitay.

About Solve ME/CFS Initiative

Solve M.E. is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. works to accelerate the discovery of safe and effective treatments and strives for an aggressive expansion of funding for research that will lead to a cure.

To learn more, visit our website at www.solveCFS.org

Media Inquiries Only Contact
Emily Taylor
Director of Advocacy and Communications
714-296-1661
ETaylor@solvecfs.org

Research Update: The Relation Between ME/CFS Disease Burden and Research Funding in the USA

Abstract:

Background: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic, multisystem disease that affects an estimated 1 to 2.5 million Americans. It has no widely accepted biomarkers and no FDA-approved treatment. ME/CFS has traditionally been one of the lowest funded diseases by the United States National Institutes of Health (NIH).

Objectives: We provide here an update to our 2016 article, which estimated the disease burden of ME/CFS in the United States in 2013 and its relation to NIH’s 2015 analysis of research funding and disease burden. This update incorporates more recent burden data from 2015 and funding data from 2017.

Methods: We perform a regression analysis on funding versus disease burden to determine 2017 funding levels that would be commensurate with burden. Burden figures for 2017 are estimated using population-based extrapolations of earlier data.

Results: We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.

Conclusions: To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.

Source: Mirin AA, Dimmock ME, Jason LA. Research update: The relation between ME/CFS disease burden and research funding in the USA [published online ahead of print, 2020 Jun 16]. Work. 2020;10.3233/WOR-203173. doi:10.3233/WOR-203173 https://pubmed.ncbi.nlm.nih.gov/32568148/