Battling an Invisible Epidemic
From Stanford MedX to SXSW, amplifying the lonely voices of autoimmune disease.
By Bonnie Feldman, Ellen M. Martin, and Tiffany Simms
How do you battle an invisible epidemic? We thought it was logical: take what we were already learning about using data and digital tools to advance precision medicine in cancer and rare diseases and apply it to autoimmune disease. With this mindset, we asked a number of digital health companies already working in cancer if we could tweak their platforms to better address the needs of autoimmune patients.
We were surprised to find that we had no takers. We were told “the market is too small,” and “patients are not interested.” This struck us as not right, given the the large unmet needs of the autoimmune community and the rising tide of autoimmune patient activism. Through additional research, we found that autoimmune disease is growing at epidemic levels and that some patients are very interested.
So, why the disconnect between the need and the entrepreneurial eagerness to address it?
An Invisible but Enormous Market Opportunity
Scouring the scientific literature, medical statistics, and patient communities, we found that autoimmune diseases are affecting millions, but somehow are slipping under the radar. With 100+ autoimmune diseases, this invisible epidemic affects 16% of the U.S. population, more than cancer and heart disease combined! It is the 8th leading cause of death in women under 64 years old, with 75% of the autoimmune disease population being women. In fact, there are 7.6 million more women with autoimmune diseases than breast cancer!
Even more concerning than the prevalence numbers is the increasing incidence of autoimmune diseases in young adults in their 20s as well as in children, some being diagnosed with more than one autoimmune disease. Unless something is done to help these people, they are facing a lifetime of suffering.
As incidence and prevalence rates are increasing, so too is the total economic burden on the healthcare system. Taken together, these trends reflect a large, growing, but under-recognized market opportunity to better serve the needs of autoimmune patients.
Why are Autoimmune Diseases Invisible?
So, why is our healthcare system missing these diseases?
First, autoimmune diseases are statistically invisible. The Center for Disease Control (CDC), the most respected source of public health data, doesn’t aggregate these hundred or so diseases, like they do with cancer, but scatters them over many categories and count them with non-autoimmune diseases by body parts (e.g., GI, CNS, skin, joints). So the public health data obscures the size of the epidemic. Furthermore, historically, autoimmune diseases are researched and treated by different specialities that generally do not communicate with each other. For example, psoriasis is treated by dermatologists, MS by neurologists, Crohn’s disease by gastroenterologists and Psoriatic Arthritis and Rheumatoid Arthritis by rheumatologists.
Unfortunately, this strategy leaves autoimmune warriors fighting two battles: one against the autoimmune disease process itself and the other against their own allies who cannot see the severity of these invisible diseases.
An Invisible Disease with Real Sufferers
In many ways, the struggle on the home front presents just as much harm, if not more, than the statistical and economic under-representation.
Early symptoms of autoimmune warriors tend to be vague and nonspecific, affecting any or many body organs across multiple specialties (requiring a systems biology view rather than a medical specialist silo). Many sufferers are young and otherwise healthy; they do not look (or test) as sick as they feel. Many patients, especially women, are dismissed as complainers or mentally ill. Blood tests are few, and if discordant, used to dismiss physical complaints. On average, diagnosis takes 3.5 years and 5 doctors.
With so many autoimmune patients lonely and underserved, we thought it was past time to make this invisible disease visible. In 2014, we brought the lonely voices of autoimmune disease to Stanford Medicine X and made the early autoimmune needs known to inspire the activist e-patient community.
After receiving the first few patient stories and discovering that patients and patient communities were becoming more active in pursuing alternative modalities, particularly experimenting with diets, we recognized the power of patients’ real experiences and wanted to amplify their voices. Running with this idea, we brought the Lonely Voices of Autoimmune Disease to Stanford Medicine X 2015 in the form of a pre-conference survey and needs analysis workshop.
Expecting a small response to a completely volunteer survey, we were shocked to receive over 400 responses. Even more surprising, although the respondents had many different autoimmune diseases, their concerns, problems, and struggles were the same!
“It took 7 years and more than 13 doctors to even TEST for my autoimmunity. They diagnosed depression, chronic sinusitis, back problems, possible tumors, lazy, etc”
With the number of responses we received and the level of detail they gave us, the need was clear and a direction was given. Following the survey, we sponsored a brainstorming workshop at Stanford Med X for and by e-patients. Again, the turnout was an unexpected surprise. Despite being set at the end of the day and the end of the conference, the room was packed with engaged e-patients, along with a few healthcare providers, researchers and entrepreneurs ready to collaborate to storm the barriers found in the survey.
During the workshop, we sorted the survey responses (plus the experiences of workshop participants) into the following problem categories.
1. Diagnosis Purgatory
2. Uncoordinated Care
3. Root Causes not understood nor pursued
It was obvious from the survey and workshop that autoimmune patients are more than willing to participate in improving their care.
Patients need collaborative care (shown below) that will mirror the collaboration and teamwork we experienced during the workshop. Luckily, with data and digital tools available as the glue to bring and hold the team together, this vision may not be so far off.
Building a Digital Armory to Attack Autoimmune Disease
We live in amazing times, with the convergence of new scientific discoveries in immunology and microbiome research, along with rapid technology advances enabling us to collect, analyze and store extremely large data sets.
Armed with more data and digital tools, we are better equipped to tackle autoimmune diseases. While we wait for new and improved biomarkers, we can use data and digital tools to lend modern support for wellbeing practices and lifestyle modifications such as diet, exercise, emotional, and meditation.
The market is there. The patients are eager. The time is now to move from problem identification to an action plan.
If you or anyone you know has an autoimmune disease or is working to help the chronic disease community, let’s collaborate and decrease the lifetime of suffering facing present and future lonely voices.
for complete footnotes see, An Invisible Epidemic — When Your Body Attacks Itself — Autoimmune Disease.