Our journey to autoimmunity activism began when we were introduced to digital health by “the original” digital health pioneer, Donald Jones. We explored big data and gaming platforms to spur health behavior change. Once we saw the widespread innovations and progress applying digital health to cancer, we wondered why not do the same for autoimmune disease… and the rest is history!
Why autoimmune disease? Why an invisible category of illness that is about in the place cancer diagnosis and treatment was 50 years ago?
Dr. Bonnie Feldman draws her passion and sense of urgency from a desire to prevent disease in her grandchildren; both her immediate and extended family struggle with autoimmune diseases. With vague symptoms, attempts to find diagnosis and treatment have been disappointing. After seeing the innovations and possibilities digital health presents, she could no longer sit on the sidelines and watch as her family and millions of others struggled.
In 2014, we began to increase awareness of autoimmune disease by introducing the Lonely Voices of Autoimmune Disease. The following year, interest from the general public, activated patients, and academics led to the beginning of reimagining autoimmune care. Today, we have new hope for autoimmunity as new products begin tackling pieces of the problem.
What’s the big deal with autoimmunity?
Autoimmune Disease is underserved.
- Approximately 50 million Americans suffer from autoimmune diseases. That’s more than cardiovascular disease and cancer combined.
- As of 2014, on average, it took autoimmune patients 3.5 years and 5 doctors for a diagnosis. Some 51% were labeled as chronic complainers by their healthcare providers.
When we researched the economic burden and funding autoimmunity receives, we were shocked at what we found:
- Despite affecting about 16% of the population, autoimmunity receives less than 6% of NIH funding.
Statistics on autoimmunity are hard to come by. These 100+ diseases are lumped in with other diseases by body part. As a result, the size of the autoimmune disease problem is obscured. Since specific autoimmune numbers were not readily available, we searched under the overlapping category of chronic diseases. We found that:
- 85% of US healthcare dollars are spent on people with chronic conditions.
- By 2023, there will be approximately 230 million Americans with chronic conditions, costing $4.2 trillion in treatment plus lost economic output.
We are teaming up to conquer this rising epidemic… Join us!