The NIH Report on Autoimmune Disease, Part 2: Enhancing Research

NIH report describes missing statistics, explains that basic research funding is scattered across 13 agencies, and recommends forming a coordinated national autoimmune institute on the model of the National Cancer Institute.

NIH Report Shows Why The AIID Epidemic is Invisible

An NIH research report on autoimmune disease, published May, 2022, explains why, despite affecting more Americans than cancer, autoimmune and immunoinflammatory diseases (AIIDs) remain an invisible epidemic. Autoimmunity is an orphaned research field of patchwork studies of some 80-150 individual diseases. Moreover, AIIDs are treated by multiple medical specialties in silos that obstruct data collection. There has never been any US national data collection for autoimmune as there has been for cancer. Despite a broad consensus that this is a huge, growing and neglected epidemic, what data we have (e.g., the oft-cited 1997 NIAID 23.5M prevalence for 24 diseases) grossly underestimates prevalence, growth & costs. In fact, we have no reliable historical statistics about the total burden of AIIDs.

No national autoimmune institute, data collection or aggregation

Basic AIID research funding is currently scattered across 13 NIH sub-agencies focused on different body systems. It’s difficult to even calculate how much has been spent on AIID research. No wonder the scope of the problem is not obvious! By contrast, in 1937 FDR created the National Cancer Institute (NCI, a division of the NIH), expanded by RMN in 1971. Over the last 85 years, including two Federal Wars on Cancer, the NIH spent $145.24B on cancer research.

The NIH committee proposes creating and funding a National Autoimmune Institute, along the lines of the NCI, to coordinate Federally funded autoimmune research and collect national data for 100+ AIIDs, aggregated as cancer data has been for decades. They call for more research on the common immunological underpinnings of autoimmune diseases to augment ongoing research efforts on individual diseases. The committee also selected 11 autoimmune diseases for special focus.

The NIH Report is a Breakthrough in Defining the Problem

The NIH report is a major breakthrough for autoimmune research! It proposes the formation of an autoimmune umbrella agency to coordinate national data collection, research funding and a search for commonalities across 100+ autoimmune diseases.

🎆This 549-page report is a breakthrough, with major potential to improve basic research, CDC statistics, R&D, medical education & clinical practice. Funded pre-pandemic, but even more relevant since Covid spotlighted immunology & post-viral syndromes. But it does not mention post-acute Covid syndrome (PACS), despite signs that some long Covid is autoimmune.

🎯It shows why big-picture data on autoimmune have been so hard to find (we’ve tried for 10 years!). 

There has NEVER been any national data collection as with cancer. Even higher prevalence diseases, like RA, thyroid & celiac, are lumped in with more prevalent non-autoimmune disorders like osteoarthritis, diabetes & kidney disease. Moreover, multiple medical specialties treat AIID patients. Compare cancer, where one specialty, oncology, treats 100+ diseases. These silos keep the AIID epidemic invisible and make the individual diseases compete for a smaller funding pie than cancer.

The oft-cited NIAID 1997 prevalence figure counted only 24 of 80-150 diseases. However, adding up estimates of the top 10 diseases from disease foundations & advocacy groups shows that total prevalence far exceeds the 24M figure from the ‘97 study.

Authors: DrBonnie360, Ellen M Martin, Emily Burns & Ellie Duvall

We approach these thought leadership posts from our multi-lens perspectives

  • DrBonnie360: Digital/virtual health consultant, clinical dentist, Wall Street analyst, patient & advocate.  
  • Ellen M Martin: Consultant, editor, life science finance/IR/marcomm, autoimmune caretaker.
  • Emily Burns: Digital health equity research intern, Public health associate, Centers for Disease Control & Prevention.
  • Ellie Duvall: Digital health equity research intern, Physiological Sciences Undergraduate Student at 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 functional medicine into AIID care delivery.

  • We help our clients leverage digital innovations into V1C for AIID patients. 
  • Our subject matter expertise includes: oral health, microbiome, autoimmune patient journeys, competitive landscape analysis, strategic positioning & messaging, digital health, and self-hacking.
  • We have decades of experience in finance, marketing and communications for dozens of 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. Also, we can help you clarify and articulate your company’s market position and differentiators. Long before COVID-19, we were facilitating virtual sessions. We also create compelling content: articles, blog posts, collateral, e-books, web copy and white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.


On Key

Related Posts

Our Vision of Autoimmune Care

Autoimmune Patient Journey The convoluted journey of patients with autoimmune and inflammatory diseases (AIIDs) has many stages. Unlike cancer, diabetes, and heart disease, there are no population screening nor public health education programs for AIIDs.

Autoimmune Incidence & Prevalence

Data Issues in Autoimmune Data for autoimmune diseases are substantially lacking and inconsistent. The US gathers no statistics on autoimmune diseases as a group, nor even national data on marquee diseases. Therefore, total autoimmune incidence