It is estimated that autoimmune diseases affect somewhere between 20-50 million Americans. An autoimmune disorder occurs when your antibodies attack healthy tissue by mistake. Some of the better-known autoimmune disorders include type 1 diabetes, multiple sclerosis, lupus, Crohn’s disease, colitis and rheumatoid arthritis. Celiac disease, although not as well-known, is also an autoimmune disorder that affects an estimated three million Americans, which is more than the number of patients with type 1 diabetes and Rheumatoid Arthritis combined. Furthermore, more children have celiac disease than those with cystic fibrosis, Crohn’s, and colitis.
On March 23, 2015, Celiac Disease Foundation Chief Executive Officer, Marilyn Geller, attended The State of Autoimmune Disease: A National Summit at the National Press Club in Washington, D.C. The Summit explored the current trends in diagnosis, treatment, and therapies, presented by experts in research, environment, advocacy, and patient issues. Following this Summit, Marilyn also represented CDF at the Congressional Briefing on Specialty Medicines: Access and Safety, which took place on March 24, 2015. Here, experts discussed top autoimmune issues, including, access to specialty medicines and biologics/biosimilars.
It is important that the celiac community be a vital part of the larger autoimmune community for two key reasons:
- We know from research that autoimmune diseases frequently appear in patients in clusters. The technical term is “comorbidity.” For example, children with Type 1 diabetes are 10 times more likely to test for the celiac antibodies than the general population. Other comorbidities for celiac have been found with Lupus, RA, Fybromyalgia/IBS, among others. Understanding and identifying these comorbidities will hopefully lead to more impactful treatments for patients.
- Historically, the celiac community (patients, clinicians, caregivers, researchers) has had difficulty getting the attention of lawmakers and regulators in Washington, D.C. who control so much of the American health care agenda. The same can be argued for many of the disease communities in the autoimmune sector. The goal of the American Autoimmune Related Disease Association (of which CDF is a member) is to organize the autoimmune disease advocate groups around common goals. For example, one of the primary concerns discussed at the summit was the limited knowledge among physicians about autoimmune disorders. This lack of knowledge too often results in missed or delayed diagnosis, directly impacting the health and quality of life of the patient. Wherever we can agree on common strategies to improve healthcare provider and healthcare consumer awareness about autoimmune diseases, the better our opportunity to have real impact.
On April 15, 2015, Marilyn Geller, together with Dr. Edwin Liu, MD, Director at the Colorado Center for Celiac Disease, will visit Washington, D.C. once again to present on celiac disease to Dr. Susan Mayne, Director of the Center for Food Safety and Applied Nutrition, on behalf of the patient community. If we are to achieve success in advancing research and developing therapies for celiac disease, CDF and our allies must be a constant and forceful presence in Washington, D.C. With your ongoing support and commitment to our mission, we are able to increase awareness and education of celiac disease within the medical, research, and legislative communities.