The Autoimmune Association Supports Recommendations of Report to Advance Research for Autoimmune Diseases

The Autoimmune Association supports a recommendation that the National Institutes of Health (NIH) should create an Office of Autoimmune Disease/Autoimmunity Research within the Office of the Director, a key finding from a new report from the National Academies of Sciences, Engineering, and Medicine.

“The Autoimmune Association has long been advocating for the need to advance autoimmune disease research, and we applaud this recommendation to focus more efforts in this area,” said Betty Diamond, MD, chair of the Autoimmune Association’s Scientific Advisory Board, who oversaw the review of the report. “We encourage the NIH to develop a comprehensive, transparent, and strategic approach to investigating the true representation of autoimmune disease among the U.S. population and funding additional research to better understand the biology of the disease.”

Autoimmune diseases – comprising approximately 80-150 unique, chronic conditions – affect more than an estimated 31 million Americans. However, because data for has not been reviewed or updated in nearly 20 years, there is little consensus about the current prevalence of autoimmune diseases in Americans. These diseases include well-known conditions such as type 1 diabetes, multiple sclerosis, lupus, and rheumatoid arthritis, as well as others that are rare and difficult-to-diagnose.

“There is a critical need to better understand the numbers around autoimmune disease, specifically the number of individuals affected, and the number of diseases identified as autoimmune or autoimmune-related,” Diamond said. “This lack of understanding among the scientific and medical community creates dangerous gaps in patient care.”

NIH is the primary funding agency for biomedical research, including autoimmune disease research. Spending on autoimmune diseases as a percent of overall NIH obligations has remained at only 2.6 percent between 2013 and 2020. This is in marked contrast to increases seen in overall NIH obligations during the same period. The relatively small percentage of funding devoted to research and how it distributed could be a significant factor in hampering scientific progress.

The report, “Enhancing NIH Research on Autoimmune Disease”, was a result of a congressionally mandated review of the NIH’s current research efforts in the broad area of autoimmune diseases with a particular emphasis on the risk factors, diagnostic tools, barriers to diagnosis, treatments and prospects for cure. The report was written by nationally renowned clinicians and researchers in numerous autoimmune specialties as well as epidemiologists, health disparities researchers, and persons familiar with NIH’s research administration processes. Among those were Autoimmune Association Scientific Advisory Board members Andrea Knight, MD, MSCE, who was a member of the committee; Betty Diamond, MD, who oversaw the review of the report; and David A. Hafler, MD, FANA, who reviewed the report. Autoimmune Association founder Virginia Ladd contributed to the report.

In addition to the creation of an Office of Autoimmune Disease/Autoimmunity Research within the Office of the Director, the report also recommends that:

-The NIH should establish long-term systems to collect and ensure optimum usability of population-based surveillance and epidemiological data (e.g., incidence, prevalence) on autoimmune diseases and measures of autoimmunity (e.g., autoantibodies, inflammation) and support the optimization of existing data sources.
-The NIH should support the development of population cohorts that extend from the period before disease manifests to the development of symptoms and disease and should support patient cohorts that will allow the examination of the progression, coexisting morbidities, and long-term (20+ years) outcomes of autoimmune diseases.
-The NIH should provide funding and support for a national research agenda that addresses key gaps identified by the committee.

As an umbrella organization representing the breadth of autoimmune disease and a convener of major single-disease organizations to pursue similar missions, the Autoimmune Association brings the cohesiveness and strength of more than 50 organizations. Additionally, the Autoimmune Association’s Scientific Advisory Board brings vast knowledge and deep experience in the science of autoimmune disease, as well as an understanding of the unique challenges faced by autoimmune disease patients.

“Patients with autoimmune disease can face considerable challenges, including long and frustrating journeys to diagnosis; insurance restrictions; a lack of understanding by family, employers and friends; and chronic pain, fatigue, cognitive impairment and other ailments, including depression and other mental health conditions,” said Andrea Knight, MD, MSCE. “Through the Autoimmune Association’s patient registry — ARNet – and other patient outreach programs, we hear about these struggles daily. Our deep understanding of the patient perspective can be a valuable resource to the NIH as it pursues new initiatives in autoimmune disease research.”

The Autoimmune Research Network (ARNet) is a patient data registry administered by the Autoimmune Association. With longitudinal data from more than 23,000 autoimmune patients, the registry offers critical information about disease symptoms and prevalence, clustering of autoimmune diseases, gaps in patient care, insurance challenges, and other data beneficial to the research process.

“The Autoimmune Association is well-positioned to support the NIH and its initiatives to advance research and understanding of autoimmune diseases,” said Molly Murray, Autoimmune Association president and CEO. “We offer our assistance as the NIH considers its strategy for conducting and disseminating research on the understanding, treatment and prevention of autoimmune diseases, as these conditions continue to increase among the U.S. population.”