A new hope: microbiomics and the digital gut toss lifelines across the autoimmune abyss
It’s still lonely in the world of autoimmune disease. Twenty years after the promising biologicals of the 1990s, we need big data to advance further. Despite $4B in digital health funding, autoimmune diseases have been wallflowers at the party. But we aren’t just standing around: the community is generating a digital pandemonium of self-help advice, especially dietary. We face a unique window of opportunity at the nexus of scientific research, digital tools and patient experiments—focused on the human gut.
As I discussed last year, there is still a huge and growing unmet need in autoimmune disease. Sometimes called ‘invisible’ because patients may not look sick, there are some 100 different autoimmune diseases. They are in the top ten causes of death among US women younger than 65. More than 50M folks are spending $120B/year managing their diseases. There are 250,000 new diagnoses every year. Most alarming is the increasing incidence in young adults, who face decades of diminished quality of life.
When seeking medical help, sufferers still confront a diagnosis and treatment abyss.
On average, it takes 3.6 years and 5 doctors to diagnosis. Why? An AARDA survey found that most family physicians feel undereducated and uncomfortable diagnosing autoimmune patients. Because they present with various vague symptoms, 51% of patients are shuttled through multiple specialists. Once diagnosed, treatment is still too often guided by trial and error. The biologicals approved for specific diseases do not work durably in many patients. For many diseases, toxic general immunosuppressives remain the standard of care.
But there’s hope! Progress in digital data capture and analytics is enabling research in genomics, immunology, systems biology, and microbiomics: the study of the billions of microbes in and on us. Converging research points to the gut as a key organ of immunity connecting body, brain and microbes, mediating immune responses to food, infections and antibiotics. This is both a research focus to explore common features of autoimmune diseases and an opportunity for patients to treat themselves now with gut-level interventions like diet and stress management.
How can digital tools help us understand how the gut connection influences immune function and dysfunction? How can we maximize this opportunity to reduce chronic suffering now and prevent disease in the future? By working together to translate scientific advances into clinical practice and by listening to patients as sources of new ideas and real-world experiments, we can speed diagnostic and treatment development.
· First, from the patient viewpoint, we will review new research from company and patient interviews that highlights the gaps from R&D through clinical trials, diagnosis, treatment and care coordination.
· Second, using new information from hundreds of company interviews, we will begin to sort the hype from the hope. Referencing progress in applying data and digital tools in cancer, rare diseases, aging, health and wellness, we will highlight emerging approaches to addressing autoimmune diseases.
· Third, we will offer tangible next steps for patients to help themselves now while helping others in the future.
Because many of the e patients at Stanford Medicine X have autoimmune diseases, I would like this session to be both interactive and participatory, focusing on building bridges over the Autoimmune Abyss.