May 2022 Report
This May 2022 549-page NIH report represents a significant breakthrough in autoimmune research focus. Its recommendations have major downstream implications for CDC statistics, basic research, R&D, medical education & clinical guidelines. Funded and launched in 2019, before the pandemic but even more relevant since COVID-19 spotlighted post-viral syndromes (including triggering autoimmune diseases) and immunology.
This report explains why finding big-picture data on autoimmune has been so difficult (we’ve tried for 10 years!). There has NEVER been any national autoimmune data collection as there has been for decades for cancer data. Even the higher-prevalence, more familiar diseases, like RA (rheumatoid arthritis), thyroid, and celiac, are lumped in NIH research focus and CDC statistics with non-autoimmune diseases like osteoarthritis, diabetes, and kidney disease. This makes the total size of the problem impossible to see and means individual diseases compete with each other for relatively small funding.
We should promote this report and prod Congress to fund such a Federal autoimmune agency as an important first step—followed (we hope) by the first war on autoimmune disease.
Autoimmune Disease Statistics
The NIH report makes it clear why, despite affecting more Americans than cancer, autoimmune diseases remain an invisible epidemic. Autoimmune has been an orphaned field of study, with uncoordinated efforts to study some 80-150 individual diseases (with no agreement on what is on that list!), treated by multiple different medical specialties.
The universally cited (because it’s the only one) NIAID 1997 autoimmune statistics are woefully outdated & obviously far too low. There is no national reporting system, no population-based data, and no historical data to track autoimmune incidence and prevalence. Bottom-up totals of higher-prevalence diseases far exceed the 23.5M figure cited in the study. Later analyses (2011) from ARDAA/AA & AIR show >50M prevalence, with more than 100 diseases. Even these inadequate data suggest an enormous and rapidly growing unmet need, larger than cancer or heart disease.
Enhancing Autoimmune Research
The NIH Committee selected 11 diseases for special scrutiny. Most are “marquee” diseases with higher prevalence and some public name recognition, including Celiac disease, lupus, MS (multiple sclerosis), psoriasis, RA (rheumatoid arthritis), and Type 1 diabetes (T1D). Autoimmune thyroid disease is a category that includes several diseases (Addison’s, Graves’, Hashimoto’s, and a myriad of rare thyroid disorders) that add up to a population as large as 15M US, as many as the upper estimate of RA. In addition to the better-known diseases, the NIH committee selected two rare diseases: APS (antiphospholipid syndrome), a major cause of miscarriages, and PBC (primary biliary cholangitis), a liver disease.
The siloed nature of autoimmune treatment goes all the way down to data collection and basic AIID research, currently scattered across 13 NIH sub-agencies. Thus, we have no solid statistics about the total burden of autoimmune. It’s difficult to even calculate how much has been spent on AIID research. No wonder the scope of the problem is not obvious!
The NIH report proposes creating a National Autoimmune Institute, modeled after the National Cancer Institute (founded 1937!), to provide a coordinating umbrella organization for autoimmune research, presently funded through 13 siloed NIH agencies. Additionally, they recommended creating an Office of Autoimmune Disease/Autoimmunity Research, increasing funding, enhancing coordination through Health and Human Services (HHS), and a Congressionally Mandated National Autoimmune Disease and Autoimmunity Plan.
Read our other 2023 State of Autoimmunity posts below!
- The Chronic Disease Epidemic: Visible & Invisible
- Siloed Treatments & Specialties for Autoimmune Diseases
- Autoimmune Incidence & Prevalence
Authors: DrBonnie360, Ellen M Martin, & Ellie Duvall
We approach these thought leadership posts from our multi-lens perspectives.
- DrBonnie360: Digital health consultant, clinical dentist, Wall Street analyst, patient & advocate.
- Ellen M Martin: Consultant, editor, life science finance/IR/marcomm, AIID caretaker.
- Ellie Duvall: Digital health equity research intern, recent B.S. in Physiological Sciences from UCLA.
Strategic Consulting & Professional Services
We provide professional consulting services to investment, emerging, and established companies. Our work bridges silos and fills gaps to help our clients improve care for AIID patients and reduce costs. Informed by patient and caretaker perspectives, we urge investors & clients to integrate the best of digital, conventional, and lifestyle medicine into AIID care delivery.
- We help our clients leverage digital innovations into virtual-first care (V1C) for AIID patients.
- Our subject matter expertise includes: Oral health, microbiome, patient engagement, competitive analysis, strategic positioning & messaging, digital health, and self-hacking.
- We have decades of experience in finance, marketing, and communications for healthcare and life sciences organizations, emerging and established.
- Our backgrounds include clinical dentistry, osteology, biotech, IR/PR, marcomm, content creation, strategic consulting, and autoimmune advocacy.
Contact us to help you map your market landscape and understand patients’ unmet needs. We can help you clarify and articulate your company’s market position and differentiators. Long before COVID-19, we were facilitating virtual sessions. We create compelling content: articles, blog posts, collateral, e-books, web copy, white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.