The Precision Medicine Initiative and Vice President Biden’s “moonshot in cancer” reflect an environment of rapid scientific advances. The convergence of healthcare and information technology—especially advances in data collection and analysis—is accelerating research in genomics, immunology, microbiomics, and systems biology. These developments are sparking unprecedented innovation in healthcare, enabling us to dream of a future where every person gets the right care at the right time, even before disease strikes.
Despite these advances, it is universally acknowledged that the United States healthcare confronts a growing financial and social burden managing complex chronic diseases.
- The U.S. already spends 85% of healthcare dollars on people with chronic conditions.
- Between 2000 and 2030, the number of Americans living with chronic disease is predicted to increase by 37%, adding up to 46 million people.
- Most alarming: 27% of children under 19 years old have at least one chronic condition, and 6% suffer from more than one.i
An under-appreciated contributor to this chronic disease burden is autoimmune disease. Autoimmune diseases are high morbidity and moderate mortality chronic conditions. But, like cancers 50 years ago, autoimmune diseases are not generally considered as a common category. Instead, data about these 80-100 diseases are scattered among various body systems and medical specialties. Despite a large (16% of population = cancer + cardiovascular disease combined!ii) and growing incidence, especially among young people, these diseases remain under-recognized and underserved.
|Table 1: A Snapshot of Incidence – Prevalence Numbers in the U.S. from Individual Advocacy Groups|
|Common Autoimmune Diseases||Incidence Estimates||Prevalence Estimates|
|Hashimoto’s Disease||—||14 Million in 200i8ii|
|Inflammatory Bowel Diseaseiv||70,000 per year ||1.6 Million in 2014|
|Multiple Sclerosisv||200 per week ||400,000+ in 2015|
|Psoriasis||—||7.4 Million adults in 2013vi|
|Rheumatoid Arthritis||—||1.3 Million in 2009vii|
|Sjögren’s Syndrome||—||4.0 Million in 2014viii|
|Type 1 Diabetes||—||1.25 Million in 2012ix|
Why we need to reframe the data
A review of the chronic disease literature shows various estimates of the U.S. disease burden for chronic conditions.
- 80% of dollars spent on healthcare ($1 trillion per year) is spent in treatment of chronic disease.x
- Patients with complex chronic diseases cost the system (payers and themselves) $281 billion each year.xi
- By 2023, there will be 230 million Americans with chronic diseases, costing $4.2 trillion in treatment plus lost economic output.xii
A closer look shows that most of these estimates do not call out autoimmune disease, but scatter autoimmune diseases across multiple categories. Look at “arthritis” and “thyroid disorders” in the graph below.xiii
This categorization obscures the autoimmune component. For example, two of the most prevalent “thyroid disorders” are autoimmune: Hashimoto’s and Graves’ disease—but you wouldn’t know that from this chart. Similarly, “arthritis” lumps all types into one category. So, how much of “arthritis” is actually Rheumatoid Arthritis, Psoriatic Arthritis, Systemic Lupus Erythematosus, and other autoimmune diseases of the joints? Autoimmunity simply slips through the cracks.
Here’s a different categorization (graph 2), from the oldest healthcare provider, Kaiser—also a leader in collecting data for more precise medical care.xiv
How many autoimmune diseases are lost in the endocrine or ill-defined conditions categories? How much of dermatological disease is Psoriasis? Where do Rheumatoid Arthritis, Systemic Lupus Erythematosus (SLE), Crohn’s, and Inflammatory Bowel Disease (IBD)—all major autoimmune diseases—fit in this list?
By not aggregating autoimmune diseases, we are blind to them. We are missing an opportunity to target a large and growing cause of chronic suffering, simply because we haven’t defined it into statistical existence.
Autoimmune disease is an unacknowledged public health crisis
There are aggregated autoimmune data, but they have been cobbled together from various sources. The most comprehensive source for autoimmune data is the American Autoimmune Related Diseases Association. However, because of funding limitations, these data are not current.
- Taken together, the number of people suffering from autoimmune diseases is 24-50 million Americans, 16% of the U.S. population.xv To put it in perspective, autoimmune disease prevalence equals heart disease and cancer combined.
- Best estimates of the total autoimmune disease financial burden are around $100 billion.xvi However, this number was based on data from the last decade, and we suspect it to be much lower than the actual since psoriasis (one autoimmune disease out of 80+) estimated a total U.S. cost of $112 billion in 2013.xvii
- New market research estimates the autoimmune diagnostic market to exceed $6B by 2020.xviii
- Autoimmune diseases are among the top ten causes of death in girls and women under 65 years.xix
- IBD is increasing in children, according to a 12-year study showing an incidence rate doubling over 1991-2002.xx
So why haven’t we declared War on Autoimmune Disease as we did war on cancer in 1971? Cancer ranks as the second largest cause of death. But, if aggregated, deaths from autoimmune conditions could threaten cancer’s second place ranking.xxi
One reason cancer gets so much government funding and research attention is that cancer, in the aggregate, is a much bigger target than cancers considered individually. As you can see from the charts above, as well as from Centers for Disease Control (CDC) dataxxii, “cancer” as a category is easily found, and the myriad of individual cancers are treated as easy-to-analyze subsets.
Further hindering a declaration of war is autoimmunity’s invisible nature. Most diagnosed cancer patients look sick (especially while under treatment). In contrast, most autoimmune patients look superficially well, even while suffering significant morbidity, lost productivity, and debilitating financial stress.
The autoimmune category consists of 80-100 diseases, many very rare, widely scattered over a number of medical specialties, and usually grouped by body system (digestive, joints, metabolic) rather than as a category with common causal mechanisms (immune system attacks own tissues). Consequently, diagnosis and treatment are a notoriously exhausting journey, with patients seeing on average five doctors over three and a half years before receiving a diagnosis.xxiii
Getting autoimmune disease on the chronic disease map
We are overdue on conducting proper surveillance to understand the epidemiology of autoimmune disease. We must code, collect, or transform the data so that autoimmune diseases can be analyzed as a single category in order to calculate the total burden of autoimmunity, secure more resources, and direct research efforts.
Autoimmune diseases are already a huge burden, socially, financially, and emotionally.xxvi We need faster diagnosis, better-matched treatments, and even pre-autoimmune prevention. We already have some of the tools, and through research and analysis can find more. We need to start identifying and counting autoimmune diseases to find the resources and give hope to millions of Americans.
This article was co-authored by Ellen M. Martin and Tiffany Simms. This post is a modified version of one that originally appeared on Tincture on Medium. It is republished here with permission of the authors and Tincture.