By Marilyn G. Geller, Chief Executive Officer, Celiac Disease Foundation
During May, Celiac Disease Awareness Month, the Celiac Disease Foundation wants to take this opportunity to honor the advocacy efforts of our dedicated, inspiring celiac disease patient community. Thanks to the contributions of our patients, celiac disease has become a model for establishing and keeping patients and caregivers as critical stakeholders in disease research funding and development.
Celiac disease (CeD) is a serious autoimmune disorder that affects about 1% of the population worldwide. It is triggered by the ingestion of gluten, a protein found in wheat, barley, and rye. When people with celiac disease eat gluten, their immune system attacks the lining of their small intestine, causing damage and malabsorption of nutrients. This can lead to a variety of symptoms and complications including abdominal pain, chronic diarrhea, anemia, osteoporosis, infertility, neurological disorders, and an increased risk of certain cancers.
There is currently no cure for celiac disease, and the only treatment is a strict gluten-free diet – for life. For decades, many believed that the diet was an adequate disease management strategy, and research into treatments and a cure was not the priority it should be. However, thanks to a sustained strategy of patient engagement, we have proven that adherence to a gluten-free diet can be challenging and costly, and that millions of people with celiac disease still experience debilitating disease symptoms while on the diet. With our patients, we have helped establish the clear need for research funding for diagnosis, treatments – and one day, a cure – for celiac disease.
With the support of our patient community, we have worked with our allies in Congress to increase funding for celiac disease research from the National Institutes of Health (NIH), the world’s largest biomedical research funder. Following a collaborative, years-long effort, the NIH issued the first-ever Notice of Special Interest (NOSI) for celiac disease – a commitment to solicit and fund research grants specifically for celiac disease. We also secured from the NIH a commitment to list – again, for the first time ever – celiac disease in its expansive online database of disease and condition research funding; funding was reported at $9 million for FY2021, clear evidence that our Foundation-patient partnership is producing significant, tangible results.
Additionally, following two years of partnering with our patients in advocacy efforts to educate policymakers about the need to fund research for celiac disease with U.S. Department of Defense (DOD) resources, for the first time ever, access to funding for celiac disease research is being made available through the U.S. DOD Congressionally Directed Medical Research Program (DOD-CDMRP) Peer Reviewed Medical Research Program (PRMRP). Researchers are now being invited to submit funding applications for celiac disease – making available a significant new pool of federal research dollars to identify treatments and a cure for celiac disease. This unique program is “committed to supporting research that has the potential to profoundly impact the development and implementation of medical devices, drugs, and clinical guidance that will enhance the precision and efficacy of prevention, diagnosis, and treatment across a wide range of disciplines including autoimmune diseases.”
The Celiac Disease Foundation has also engaged patients as key stakeholders in the research process by inviting them to participate in surveys, focus groups, webinars, workshops, conferences, and advisory boards – and each time they have answered the call to share their perspectives, preferences, and experience on various aspects of celiac disease research.
While we are always thankful for our supportive, engaged patient community, during this May Celiac Disease Awareness Month we are particularly aware that none of the progress we have made would be possible without these amazing individuals. We are committed to keeping patients and their needs at the center of celiac disease research, and we extend our deepest gratitude to our patient community for their continued advocacy and partnership to advance treatments and a cure for celiac disease.
About the Celiac Disease Foundation
The Celiac Disease Foundation, established in 1990, is a leading global patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease. Our mission is to improve the health and well-being of the millions of individuals around the world affected by this genetic autoimmune disease through our strategic investments in research, advocacy, and education.
The Celiac Disease Foundation is a member of the National Health Council. For more information on NHC membership, please email [email protected]. View the National Health Council guest blog post here.