The Problem: We Don’t Really Know!

The problem with estimating the total cost burden of the autoimmune disease (AIID) epidemic is that we really don’t know! A May 2022 NIH report validates our long-held belief that missing and inconsistent data for autoimmune diseases (AIIDs) are at the root of the invisible epidemic. The oft-cited 23.5M US total autoimmune prevalence is 25 years old (1997) and clearly far too low. As the NIH report states, there has been no national effort to estimate the cost burden of autoimmune (unlike cancer or heart disease). CDC cost statistics for chronic diseases include AIIDs, but it is concealed in categories dominated by non-autoimmune diseases. For example, rheumatoid arthritis (RA, 1-3M US patients), is buried in the CDC’s arthritis category, overshadowed by osteoarthritis. Given these data limitations, realistic cost estimates are impossible.

Moreover, available individual disease data suggests that commonly cited total prevalence statistics are 2-3 times lower than reality. Our own research, coupled with the NIH’s report, shows that the 2011 AARDA estimate of $100 billion US healthcare spending on autoimmune disease is too low and distressingly outdated. We believe the actual cost numbers are in the $200-300B range.

Total Direct Medical Costs of Autoimmune by Individual Diseases

Simply adding up existing cost data for a few of the high-prevalence “marquee” diseases rapidly exceeds earlier estimates. We believe the real figure is at least 2-3x higher = $300B, and may be greater. We just don’t have good data.

• RA alone costs between $16 billion and $47.6 billion. Approximately 1.3 million people suffer from RA, compared to the 24-50 million Americans with one or more of the 80-100 AIIDs.
• Psoriasis (9M) costs roughly $51.6 to $63.2 billion.
• MS (1M) is estimated at $63.3 billion.

Counting these 3 visible diseases, with a patient population of 11 million individuals (20-30% of total AIID prevalence), the total direct healthcare cost is between $130.9 and $174.1 billion. This already exceeds AARDA’s $100 billion dollar estimate for all autoimmune direct costs. Moreover, from health claims analyses, the healthcare system cost of an individual autoimmune patient per year roughly ranges between $20,000-30,000, with exceptions in the higher and lower ranges. These figures do not include patient-borne costs (except maybe copays), e.g., travel, childcare, lost work income, handicap accommodations, etc. Including these indirect costs borne by employers, patients, their families and caretakers, the actual financial burden is much higher.

Estimated Costs PPPY of 8 AIIDs

Another way to approach the analysis is to look at the average costs per patient per year (PPPY) over a group of the better-known AIIDs. As you can see in the chart below, costs vary greatly, from ~$10,000/year for mild RA or Celiac to more than $50,000/year for severe lupus.

Who Pays for Autoimmune?

What are the Cost Components? Including Avoidable Waste.

• Growing incidence & prevalence (number of patients), increasing diagnosis & treatment raise all cost numbers.
• Lifelong treatment for autoimmune patients → no “cure” → decades of direct & indirect costs per patient.
• Early vague symptoms, often overlooked by patients & PCPs, lead to multiple futile visits, repeated labs & imaging. 
• Diagnosis takes years on average, misdiagnosis is common.
  • PCPs refer patients to wrong specialists (mental health, orthopedists, PT) instead of promptly to appropriate specialists (rheumatologists, neurologists, endocrinologists), wasteful use of provider & patient time, cost of visits, labs, imaging. Out-of-network specialists cost more (at least to patients!).
  • Once referred, delays in getting specialist appointments, repeated labs & imaging, referrals to other specialists or back to PCPs.
• Once diagnosed, some patients are prescribed costly specialty meds, some requiring high-margin infusion centers. Co-pays can be high & adherence spotty, leading to disease progression & higher medical costs.
• Direct medical costs include emergency, urgent, hospital and surgery, much of which may be avoidable with faster, better care.
• Productivity: Increased absenteeism, presenteeism (poor productivity on the job), time off work, and handicapped accommodations. Reduced productivity matters to employer plans, also worker’s comp.
• Patient-borne costs include co-pays, transport to visits, time off work, childcare, handicap accommodations, self-paid care.

Payer/Provider Dilemmas

• Incomplete scientific understanding, too few specific & sensitive biomarkers, classification of diseases by body part, and treatment by separate specialists all contribute to poor detection and diagnosis = friction costs.
• Since patients present with non-specific, fluctuating but relentlessly worsening symptoms, early diagnosis is difficult. Population screening or analysis is minimal, if at all, unlike cancer, diabetes or heart disease.
• Because pharmaceutical treatment can be expensive, healthcare plans have disincentives against early detection and prediction, much less prevention or population screening.
• Ironically, early diagnosis is essential to better outcomes and lower total cost of care (TCOC); as disease progresses, patients become less responsive to treatment, suffer more accumulated disability, and become costlier to manage.

Healthcare System Problems

• Once diagnosed, it is difficult to match costly medicines to patients and disease (trial & error) and costs of meds loom large in treatment decisions. Biosimilars have yet to make a significant impact on costs.
• While biologicals have been game-changers, they can have serious side effects, making adherence daunting and often requires changes or combinations of drugs to achieve robust remission.
• Conventional medical practice is only beginning to integrate lifestyle interventions into patient management, despite growing evidence that these are key factors for improved outcomes and quality of life. Such non-pharmaceutical interventions (NPIs) require additional care coordination with providers in behavioral health, nutrition, physical therapy, exercise, sleep & more.

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

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

• DrBonnie360: Digital health consultant to investors & start-ups, 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 for Dr Bonnie360; 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. We bridge silos and fill gaps to help our clients improve care and reduce costs for AIID patients. Informed by patient and caretaker perspectives, we urge investors & clients to integrate the best of digital, conventional and lifestyle medicine.

• We help our clients leverage digital innovations into virtual-first care (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. We also 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.