Complementing our Advocacy Week 2024 efforts, Solve has co-authored a new white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH.” Co-written by Solve President and CEO Emily Taylor, accomplished journalist and filmmaker Ryan Prior, and science and policy researcher Melissa Smallwood, the white paper outlines the economic burden caused by IACCIs and the lack of appropriate NIH funding to meet the needs of those who suffer. The co-authors recommend possible policy solutions to this problem, which includes the establishment of a dedicated IACCI research entity at NIH.
Advocacy Week 2024 participants are encouraged to share the white paper when meeting with legislators to educate them on the emerging science and community efforts under the umbrella of IACCIs and how a dedicated NIH funding mechanism could make a difference.
IACCIs are a growing, but under-researched, health and economic burden. These illnesses – such as ME/CFS, Long COVID/PASC, POTS/Dysautonomia, fibromyalgia, persistent Lyme disease, MCAS, and more – severely impact patients’ quality of life and ability to work and can often cause a lifetime of disability. Following COVID, major IACCIs are now estimated to impact up to 73.3 million Americans. Research into IACCIs is severely underfunded relative to disease burden, and is decades behind illnesses with similar levels of severity due to their nature as complex, multi-systemic illnesses that aren’t clearly within the domain of any existing medical specialty.
About the Publication
Our new white paper analyzes the distribution of NIH-funded IACCI research over the past 10 years. We found that major IACCIs – in total – receive an average of $5.230 million in NIH research per year, with ME/CFS and Fibromygalgia being the only IACCIs having any record of NIH funding prior to 2020. This research funding is spread across 21 different NIH institutes with little to no central coordination.
Both patients and experts – including at the National Academies and the Federation of American Scientists – have called for more funding and multidisciplinary collaboration for IACCI research, due to extremely high rates of comorbidity between these illnesses and increasing evidence of shared biological underpinnings. The COVID-19 pandemic has further increased the urgency of IACCI research, due to Long COVID affecting up to 56 million Americans (17% of the population) with no established treatments, therapeutics, or research plan off-ramps.
Policy Solutions
Our primary call for the 2024 Solve Advocacy Week is to request congressional members’ support for the establishment of a dedicated IACCI research entity at NIH. This entity needs to have 1) the authority to direct research funding and 2) the ability to coordinate multi-disciplinary research and bring in expertise from different parts of NIH. Additional responsibilities include patient engagement and the establishment of clinical trials. We have identified two different forms that this entity could take, depending on the level of funding and commitment provided by Congress and NIH leadership.
An easier, but less substantial solution is the establishment of a special IACCI program under the Office of the Director, which would serve as a hub to coordinate and direct multi-disciplinary research on IACCIs across NIH. Funding for this program could be provided through the Common Fund, or from a smaller budgetary commitment from Congress. While legislatively a straightforward solution, it would only be temporary and would require future commitments and expansion to actually fulfill its mission.
A second solution would go much further in tackling the problems posed by IACCIs is the establishment of a full office for IACCI research. This would require cooperation and budget commitment from Congress, and would advance research into priority areas – such as diagnostics, therapeutics, and clinical trials. Such an entity would also provide a permanent home for research infrastructure developed by the RECOVER Initiative, reducing potential waste and duplication of projects and incentivizing more upcoming researchers and clinicians to specialize in a field that currently has very few dedicated specialists.
We strongly believe that an Office of IACCI Research should be established to accelerate multidisciplinary research into IACCIs. We hope that members of Congress will recognize the importance and urgency of establishing this entity, and lend their support to making this office a reality.
Read our white paper in its entirety here.
Other Solve Policy Publications
In February, the IACCPAC Initiative, led by Solve M.E., The Long Covid Alliance, COVID-19 Longhauler Advocacy Project, Dysautonomia International, and Patient-Led Research Collaborative, with support from the CDC Foundation through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program published their summary report, “Infection-Associated Chronic Conditions: Opportunities for Action.” You can read that report here.
In 2022, Solve co-authored one of the first white papers on the devastating impact of Long Covid. That report, “Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost,” was cited by major media outlets and referenced by leading economic experts when publicly addressing the prevalence of Long Covid.
In 2020, Solve published the first major policy paper connecting ME/CFS and Long Covid with Dr. Mady Hornig of Columbia University Mailman School of Public Health. “What does COVID-19 portend for ME/CFS?” laid the groundwork for securing over $1 billion for Long Covid research at NIH.
