For 26 years, Celiac Disease Foundation and our national network of activists have worked diligently for federal recognition of celiac disease as one of the world’s most prevalent, and least diagnosed, genetic autoimmune diseases. We continue to educate our elected officials on the need for funding of celiac disease research, education programs, and gluten-free labeling standards, and to demonstrate the impact of celiac disease on individuals and their families. Together, we must work to make our voices heard to elevate celiac disease on the nation’s healthcare agenda. CDF is committed to working with the United States Congress, federal government agencies, and state legislatures and agencies to improve the lives of the more than three million Americans affected by celiac disease.
- Affordable Care Act – Repeal and Replace: The 115th Congress and the incoming administration have made it a priority to “repeal and replace” the Patient Protection and Affordable Care Act (ACA). The legislative process will be protracted, include input from multiple stakeholders, and cover far reaching parts of the healthcare system. While the ACA is not perfect, it was a step in the right direction for individuals and families impacted by chronic and costly medical conditions. As Congress considers “repealing and replacing” the ACA, any new effort must ultimately lead to another step forward. As the leading patient advocacy organization for celiac disease, we are making our voice heard in the overall effort to advocate for patient protections during the ACA “repeal and replace” debate. It is extremely important for legislators to hear from affected individuals, like you, as quantity of outreach and quality of outreach will both be important as the debate moves forward.
- Celiac Disease Foundation Patient Advocacy Program: The goal of the Celiac Disease Foundation Patient Advocacy Program is to develop a nationwide network of trained patient advocates who can help design, implement, and disseminate results of patient-centered outcomes research that are important to adults and children with celiac disease and caregivers. For too long, scientists have been conducting, evaluating, and disseminating research without the benefit of your expertise. Your unique perspective gives you a nuanced understanding of celiac disease. Researchers are looking to partner with trained patients. The national organization, Patient-Centered Outcomes Research Institute (PCORI), involves trained patients in evaluating their funding applications and as PCORI Ambassadors, and the National Institutes of Health (NIH) has opportunities for patient advocates to evaluate grant proposals. Celiac Disease Foundation also offers opportunities to serve on CDF’s Research Committee and on the steering committees of CDF-funded research projects.
- Continued and expanded application of the FDA Gluten-Free Labeling Rule: In August 2014, the Food and Drug Administration required that all foods labeled gluten-free must contain less than 20 parts per million of gluten. This ruling, 10 years in the making, was a great victory to the gluten-free community, allowing consumers to buy gluten-free products with confidence. One of the first disease advocacy organizations to advocate for gluten-free labeling standards, Celiac Disease Foundation continues to work with the FDA to ensure this rule is upheld, and to clarify its application to food service establishments, as well as medications and supplements. Data collection through the iCureCeliac patient registry supplements this effort.
- Recognition by the National Institutes of Health for federal research grants: Research is limited by the amount of funding provided. Federal research grants will give celiac disease researchers the funding they need to make great strides in advancing treatment, driving diagnosis, managing symptoms, and finding a cure for celiac disease. Due to a lack of federal dollars, all CDF research efforts are currently funded by supporters like you.