Autoimmune Incidence & Prevalence: Why don’t we have good data on AIIDs? 

Since 2010, we have sought autoimmune disease (AIID) incidence and prevalence data. Despite efforts by independent organizations like AARDA/AA, AIR and many single disease groups, we never found total national autoimmune statistics. NIH/CDC statistics bury AIIDs within siloed categories: Arthritis, diabetes, or by medical specialty: rheumatology, neurology, dermatology, endocrine, etc. Nevertheless, adding up prevalence of top diseases quickly exceeds the ~24M total prevalence in the official record. Moreover, that “official” record is based on a 1997 review that includes only 24 of 150 diseases. This was updated in 2003 (paywalled). In 2005 the NIAID’s National Autoimmune Coordinating Committee (NACC) published a report that shows how little data there are over 80 autoimmune diseases. Unlike cancer, where the CDC aggregates statistics for all cancers, official national data on autoimmune diseases is completely missing. A recent NIH report explains why autoimmune, despite affecting more people than cancer, remains an invisible epidemic.

Summary of May 22 Enhancing NIH Autoimmune research
A May 2022 Report: Enhancing NIH Autoimmune Research shows why we have no national statistics.

Outdated and inadequate autoimmune incidence & prevalence data

📈 The universally cited NIAID Jacobson, et al autoimmune statistics are outdated & obviously far too low, as the review itself admits. The May ‘22 NIH Report on autoimmune reveals why:

  • There is no national reporting system to track autoimmune incidence and prevalence data, so we have no population-level data and no historical data. 
  • Adding to the confusion, the number of diseases is uncertain (80-150), still 3-6 times more than the 24 diseases in the ‘97 estimate. 
  • Bottom-up totals of higher-prevalence diseases far exceed the 23.5M figure cited in the study. Analyses from ARDAA/AA & AIR show >50M prevalence, and more than 100 diseases.
  • Even these inadequate data suggest an enormous and rapidly growing (not even counting Long COVID) unmet need, larger than cancer or heart disease.

🔎 The NIH Committee selected 11 diseases for special scrutiny.
Most are “marquee” diseases with higher prevalence and public name recognition. These include Celiac disease, lupus (SLE), MS (multiple sclerosis), psoriasis, RA (rheumatoid arthritis) and Type 1 diabetes (T1D). Autoimmune thyroid disease comprises several diseases (Addison’s, Graves’, Hashimoto’s plus a myriad of rare thyroid disorders). In total, these affect a population as large as 15M US, as many as the upper estimate of RA. The NIH committee also selected two rare diseases:  APS (antiphospholipid syndrome), and PBC (primary biliary cholangitis).

💡 The NIH Report made some very welcome recommendations:

  • Collect and aggregate national data for all autoimmune diseases!
  • Create a National Institute of Autoimmune Disease & Autoimmunity (on the model of the National Cancer Institute), plus an Office of Autoimmune Disease/Autoimmunity Research within NIH.
  • Increase funding, enhance coordination through Health and Human Services (HHS) coordinating committee and a Congressionally mandated National Autoimmune Disease and Autoimmunity Plan.

An invisible epidemic of chronic autoimmune and immuno-inflammatory disease (AIID)

⚠️ Today, the CDC doesn’t even mention autoimmune or immunoinflammatory in its chronic disease page! The May 2022 NIH Report on Autoimmune Research shows why. There has never been any national effort to collect and aggregate autoimmune incidence and prevalence data, as there has been for cancer for many decades. Some people know of a few higher-visibility conditions (“marquee diseases”), especially if they have one, or know people who do. However, most Americans are not aware that there are 80-150 autoimmune diseases. Even worse, fewer know that they affect at least as many people as cancer or heart disease.

👁️ The advent of Long COVID is finally forcing attention to long-ignored post-viral syndromes, including infection-triggered autoimmunity. Bacterial & viral infections are a significant trigger of autoimmune & immuno-inflammatory diseases (AIIDs). Some post-infection syndromes (e.g., rheumatic fever-induced rheumatism) have been recognized for more than 200 years, yet neglected by medical education & clinical practice. Recent research connects Epstein-Barr Virus (EBV, “Mono”) infections to MS, SLE and other autoimmune conditions, but that knowledge has not yet been applied to practice.

🔥 A third category overlaps with the others. These are diseases with inflammatory symptoms, which may be triggered by infections, but are hard to characterize and often dismissed as psychosomatic. The status of these diseases evolves from fringe to accepted over years or decades. For example, fibromyalgia, which affects 4M people in the US (mostly women), has only recently been accepted as a chronic physical illness. Recent studies suggest it may be an autoimmune disease targeting nerve pain receptors, explaining the diffuse, fluctuating chronic pain with no visible cause. Myalgic Encephalitis, aka Chronic Fatigue Syndrome (ME/CFS) features symptoms that resemble long COVID, suggesting another post-viral syndrome.  

Sources for slide statistics: 

Long COVID:

https://www.brookings.edu/research/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/ US Census data shows 16M people with long COVID

https://www.gao.gov/products/gao-22-105666 7.7-23M

Shingles:

https://www.webmd.com/skin-problems-and-treatments/shingles/news/20080110/one-million-shingles-patients-in-us 1.1M/year, no stats on PHN.

Contentious diseases:

https://pubmed.ncbi.nlm.nih.gov/18405228/

https://pubmed.ncbi.nlm.nih.gov/18405228/

Fibromyalgia: 

https://www.cdc.gov/arthritis/types/fibromyalgia.htm

ME/CFS/SEID: https://www.cdc.gov/me-cfs/index.html

Incidence of Lyme disease = ~400K/year https://www.cdc.gov/lyme/stats/humancases.html

10-20% have post-Lyme symptoms. https://www.nejm.org/doi/10.1056/NEJMe1502350

Post-Treatment Lyme Disease Syndrome | Lyme Disease | CDC

Our own pass at US autoimmune incidence and prevalence data

Our own research prevalence estimates for selected autoimmune & related diseases.

🎪 “Marquee diseases” have some public name recognition as autoimmune diseases as well as active disease advocacy organizations, research foundations and patient communities. Nevertheless, note that the 5 listed here are treated by 4 different medical specialties! Moreover, among the marquee diseases, many published research studies do not even mention autoimmune, nor attach “autoimmune” as an SEO tag or keyword in their abstracts.

📡Less familiar, if not less prevalent, are autoimmune thyroid diseases. These include Hashimoto’s, Grave’s and Addison’s diseases as well as many rare thyroid conditions, mostly affecting females. In total, they equal the upper estimate of RA (15M). Likewise, the spondyloarthritides (arthritis of the spine, slightly male-predominant) include many unfamiliar rare diseases (ankylosing spondylitis (AS) the most prevalent), which in total affect as many people as Celiac or Sjogren’s diseases.

👀There is no consensus on the number of autoimmune diseases. The 1997 Jacobson study includes only 24. However, the 2005 NIH/NIAID/NACC Report and statistics from AA/AARDA & AIR agree there are at least 80 and maybe as many as 150. Obviously, many of these diseases are rare, and thus easily missed or misdiagnosed. The NIH 11 includes 9 marquee diseases, plus 2 less familiar rare autoimmune diseases: Antiphospholipid Syndrome (APS), a major cause of miscarriages, and Primary Biliary Cholangitis (PBC), an autoimmune liver disease. 

🔥 A heterogeneous group of chronic diseases forms a murky fourth category. This includes Type 2 diabetes (Type 1 now agreed to be autoimmune), which may have autoimmune aspects in some cases. Post-infection syndromes may trigger long-term illnesses, like long COVID, post-polio syndrome, post-Lyme syndrome and autoimmune diseases like SLE & MS. Some contentious diseases fall in this category: e.g., fibromyalgia (may be autoimmune) & ME/CFS/SEID (may be post-infection syndromes).

Sources for slide statistics:

Lupus: https://www.lupus.org/resources/lupus-facts-and-statistics#:~:text=The%20Lupus%20Foundation%20of%20America,living%20with%20lupus%20are%20women.

Axial Spondyloarthritis: https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/Disease-Spotlight-Non-Radiographic-Axial-Spondyloarthritis#:~:text=It%20is%20estimated%20that%20at,between%20nr%2DaxSpA%20and%20AS.

RA: https://www.healthline.com/health/rheumatoid-arthritis/facts-statistics-infographic#:~:text=About%201.5%20million%20Americans%20have,later%20in%20life%20in%20men.

SS:https://www.ncbi.nlm.nih.gov/books/NBK431049/

Psoriatic Arthritis: https://www.google.com/search?q=psoriasis+arthritis+total+number+of+people&oq=psoriasis+arthritis+total+number+of+people+&aqs=chrome..69i57.9583j0j4&sourceid=chrome&ie=UTF-8

Myasthenia Gravis: https://www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(20)30063-8/fulltext#:~:text=It%20is%20estimated%20that%20myasthenia,patients%20in%20the%20United%20States.

Neuro Optica: https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Neuromyelitis-Optica-(NMO)#:~:text=There%20are%20an%20estimated%204%2C000,a%20quarter%2Dmillion%20people%20worldwide.

Autoimmune encephalitis:

https://www.hopkinsmedicine.org/health/conditions-and-diseases/encephalitis#:~:text=Encephalitis%20strikes%2010%E2%80%9315%20people,often%20occurs%20in%20younger%20people.

Celiac: https://www.niddk.nih.gov/health-information/digestive-diseases/celiac-disease/definition-facts#:~:text=However%2C%20experts%20estimate%20about%202,the%20world%20have%20celiac%20disease.

IBD: https://www.crohnscolitisfoundation.org/sites/default/files/2019-02/Updated%20IBD%20Factbook.pdf

Authors: DrBonnie360, Ellen M Martin & Emily Burns

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, writer & editor, life science finance/investor relations/marketing communications, autoimmune caretaker.
  • Emily Burns: Digital health equity research intern, Public health associate with the Centers for Disease Control and Prevention.

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 healthcare and reduce costs for patients with autoimmune and chronic inflammatory disorders. Informed by patient and caretaker perspectives, we integrate the best of digital, conventional and functional approaches.

  • 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 for help understanding the market landscape and patient unmet needs, as well as clarifying and articulating your company’s market position and strategy. Long before COVID-19, we were facilitating virtual sessions. We create compelling content: articles, blog posts, collateral, e-books, web copy and white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.

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