Public Policy Agenda

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. 

Support the Celiac Disease Caucus 

Medical Research 

Increase funding for the National Institutes of Health (NIH) for the study of celiac disease 

The federal government is the largest source of funding for medical research needed to identify the causes of celiac disease, develop treatments beyond the gluten-free diet, and ultimately find a cure. Historically, federal funding for celiac disease has been limited, but thanks to our work with our Congressional partners, funding has increased to $9 million in FY 2021 and FY 2022, and $10 million in FY 2023, with similar allocations expected for FY 2024. 

This funding must be renewed annually, and we fight each year to ensure that these resources continue to be available. 

Read our FY25 NIH White Paper  

Include celiac disease in the Department of Defense 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. Through our membership in the Defense Health Research Consortium, the Celiac Disease Foundation strives to preserve funding for this important program. 

Included for the first time ever in the Peer Reviewed Medical Research Program FY2023 Topic Areas and again after our advocacy for inclusion in FY2024, funded research will benefit those suffering from celiac disease by generating strategies to prevent it. This funding must be renewed annually. 

Read our FY25 PRMRP White Paper  

Food Labeling and Access to Care 

Improve food labeling requirements to make it easier and safer for people with celiac disease to purchase food items 

*A note on food labeling: The Celiac Disease Foundation works closely with our partners at the U.S. Food and Drug Administration (FDA) and the U.S. Department of Agriculture (USDA) on this critical topic. Since 2014, the FDA “has required that claims on food labels that a food contains no gluten meet a clear standard that assures consumers that ‘gluten-free’ claims on food products will be truthful and consistent.” We continue to advocate for data-driven, science-based updates to the current regulatory framework as new information becomes available. Please review the FDA’s comprehensive information available on this topic here.  

*A note on gluten in medicine: Per FDA guidelines, “the majority of orally administered drug products either contain no gluten or virtually no gluten. FDA has issued a draft guidance on Gluten in Drug Products and Associated Labeling Recommendations.  The draft guidance provides recommendations on how certain oral drug products should be labeled regarding gluten, a matter of interest to individuals with celiac disease.” As part of our commitment to addressing patient concerns on this topic, the Celiac Disease Foundation has partnered with Mark Cuban Cost Plus Drug Company to support consumer confidence and transparency, providing resources for celiac disease patients and all consumers concerned about potential gluten in the company’s medications. 

Food labels can play an important role in managing diet-related diseases. Federal labeling rules must keep pace with the changing marketplace, and should provide the simple, straightforward information that celiac patients need to evaluate products and make the best personal choices to ensure their health and well-being. 

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. 

Contact Your Members of Congress to Improve Food Labeling 

Extend Medicare and Medicaid coverage for Medical Nutrition Therapy to beneficiaries with celiac disease 

Securing insurance coverage for registered dietitian nutritionist (RDN) visits for celiac disease patients is a priority for the Celiac Disease Foundation. Lack of adherence to a gluten-free diet significantly affects mortality for those with celiac disease. Newly diagnosed patients require expert guidance from an RDN to effectively manage and adhere to the gluten-free diet.  

We are working to ensure Medicare Part B coverage of outpatient medical nutrition therapy (MNT) services is extended to cover celiac disease, allowing providers, including physicians, nurse practitioners, physician assistants, clinical nurse specialists, and psychologists to refer patients for essential nutritional counseling.  

 

Contact Your Members of Congress to Advocate for Insurance Coverage of Dietitian Visits for Celiac Disease 

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 ensures 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 was extended by Congress to September 2024, 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. 

We were proud to lead an expert group of 21 medical, professional, and non-profit organizations in a letter to the U.S. Department of Agriculture (USDA) to elevate the needs of a particularly vulnerable population: celiac patients struggling with food insecurity who participate in the WIC program. 

This program is designed to safeguard the health of low-income women, infants, and children up to age 5 who are at nutrition risk by providing nutritious foods to supplement diets, information on healthy eating, and referrals to health care. 

Read the letter here.