Public Policy Priorities
For more than 30 years, the Celiac Disease Foundation and our national network of advocates 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 impact of celiac disease, and to emphasize the need for gluten-free labeling standards and funding of celiac disease research and education programs. Together, we must work to make our voices heard to elevate celiac disease on the nation’s healthcare agenda. The Foundation 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.
Congressional Celiac Disease Caucus
Increase Congressional Celiac Disease Caucus Membership
The bipartisan Congressional Celiac Disease Caucus was launched by Congresswoman Betty McCollum (DFL-Minn.) to support federal funding of celiac disease research and to advance legislation that will ease the suffering of celiac disease patients. The creation of the Celiac Disease Caucus is one of the highest legislative priorities for the Celiac Disease Foundation. The Caucus helps Members of Congress raise awareness of celiac disease, both in their districts and in Washington, DC, as well as amplify the voice of the celiac patient community.
Increase funding for the National Institutes of Health (NIH) for the study of celiac disease
The federal government is the biggest provider of medical research funding, but up until recently federal funding for celiac disease has been limited. Beginning with CEO Marilyn Geller’s testimony before the House Appropriations Subcommittee in April of 2019, the Celiac Disease Foundation has worked to secure annual Appropriations report language directing the NIH to devote sufficient, focused research to the study of celiac disease. Funding is needed to determine causation, find treatment alternatives to a gluten-free diet, and ultimately, cure celiac disease.
In March of 2021, Celiac Disease Foundation CEO, Marilyn Geller, testified on patient unmet needs in celiac disease at the NIH Accelerating Progress in Celiac Disease Workshop, in collaboration with the world’s leading researchers. As a result of this workshop, in December of 2021, NIH for the first time ever issued a Notice of Special Interest in Celiac Disease to provide dedicated research funding for the study of celiac disease.
Include celiac disease in the Peer Reviewed Medical Research Program (PRMRP)
The PRMRP supports medical research projects that are relevant to enhancing the health, care, and well-being of military families, and the American public. While celiac disease is a disqualifying condition for military service, its prevalence has increased among service members, veterans, and their family members. The Celiac Disease Foundation through its membership in the Defense Health Research Consortium, strives to protect and preserve funding for the Peer Reviewed Medical Research Program (PRMRP).
Included for the first time in the Peer Reviewed Medical Research Program FY2023 Topic Areas, research will benefit those suffering from celiac disease by generating strategies to prevent the disease and providing critical guidance on mitigation efforts affecting readiness.
Access to Care
Improve food labeling requirements to make it easier and safer for people with celiac disease to purchase food items
Food labels can play an important role in managing diet-related diseases, yet federal labeling rules have not kept up with the changing marketplace, and current food labels do not provide the simple, straightforward information that celiac patients need to evaluate products and make healthy choices.
The Food Labeling Modernization Act of 2023 would update front-of-package food labeling requirements, require updates to the ingredients list on packaged foods, and apply consumer friendly labeling requirements, including the disclosure of gluten-containing grains.
Extend Medicare and Medicaid coverage for Medical Nutrition Therapy to beneficiaries with celiac disease
Lack of adherence to a gluten-free diet significantly affects mortality for those with celiac disease. Newly diagnosed patients require nutritional therapy provided by a registered dietitian or nutrition professional to navigate the gluten-free diet.
Protect chronic disease patients from discrimination and bolster patient protections
As Congress and the Administration contemplate changes to the US healthcare system, it is critical for celiac disease patients that pre-existing condition discrimination continues to be prohibited and that individuals be able to equitably access comprehensive healthcare coverage regardless of their health status, diagnosis, and related factors.
FDA funding for enforcement of the Gluten-Free Labeling Rule
The 2014 FDA Gluten-Free Labeling Rule was a tremendous achievement for celiac disease patients as it requires that a gluten-free label on a packaged food product ensure that the product contains less than 20 parts per million of gluten, which is the safe threshold of gluten consumption for those with celiac disease. The FDA requires sufficient resources to maintain its ongoing compliance program.
Protect and Strengthen SNAP and Other Anti-Hunger Programs
The current Farm Bill, which expires in 2023 and needs to be reauthorized, is the centerpiece federal legislation for food and farming, providing access to nutritious food for the millions of people in America struggling with hunger. The Celiac Disease Foundation works to support the protection and expansion of federal nutrition programs to ensure families with celiac disease do not go hungry. These include the Supplemental Nutrition Assistance Program (SNAP, formerly known as food stamps); the National School Breakfast and School Lunch programs; the Child and Adult Care Food Program (CACFP) that provides meals for children in child care, Head Start, and afterschool programs and shelters; the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC); the Emergency Food Assistance Program (TEFAP), which provides commodities to food banks; the Food Distribution Program on Indian Reservations, and nutrition programs for the elderly.