Our Collective Success

NIH Funding 

Beginning with CEO Marilyn Geller’s testimony before the House Appropriations Subcommittee in April of 2019, the Celiac Disease Foundation team has specifically worked to secure annual Appropriations report language directing the NIH to devote sufficient, focused research to the study of celiac disease. In In March of 2020, the Foundation, in partnership with the Society for the Study of Celiac Disease (SSCD), convened the first SSCD Consensus Workshop: “Research Opportunities in Celiac Disease” at Columbia University. At the Consensus Workshop, the world’s leading celiac disease researchers gathered and debated what a Research Roadmap to treatments and a cure would look like. A Research Roadmap was developed that informed our presentations at the May 2020 NIH Autoimmune Diseases Coordinating Committee meeting and  the July 2021 GREAT VI Workshop on Celiac Disease. Also in March of 2021, Marilyn 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.  

While the federal government is the biggest provider of the medical research funding necessary to determine causation, find treatment alternatives to a gluten-free diet, and ultimately, cure celiac disease, historically, federal funding for celiac disease has been limited. Together with our Congressional partners, we have succeeded in changing this fact and are pleased to report the recent allocation of $9 million in FY 2021 and FY 2022, $10 million in FY 2023 and estimated for FY 2024 to celiac disease research.  

DOD Funding 

Additionally, the U.S. Department of Defense (DOD) supports medical research projects that are relevant to enhancing the health, care, and well-being of military families and the American public. The DOD Congressionally Directed Medical Research Program-Peer Reviewed Medical Research Program (CDMRP-PRMRP) was established in 1999 and has supported over 1,500 research awards in more than 165 congressionally directed topic areas. This program seeks to fund medical research projects with clear scientific merit that lead to impactful advances in health care, and to  support basic, translational, and clinical research that is directly relevant to military health. 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 and collaboration with our Congressional partners, fights to protect and preserve funding for this important program. For the first time ever, this work with our partners notably secured the inclusion of celiac disease as a topic area in the CDMRP-PRMRP for FY2023, with $6.68 million awarded to two celiac disease research projects. Celiac disease was again included in FY2024, with funding levels to be announced. This critical research support will benefit those suffering by generating strategies to diagnose, treat, and prevent celiac disease, and this funding must be renewed annually. 

Between these two programs, federal research funding increased by more than 80 percent from FY2022-FY2023 – from 9 million to 16.6 million. The Celiac Disease Foundation Team remains committed to securing these vital resources to advance diagnosis, treatments, and a cure. 

Codex and Precautionary Allergen Labeling Success 

The Celiac Disease Foundation is committed to ensuring that every patient has access to safe, clearly labeled food so that every person is equipped to make informed health choices. We are proud to be leading a robust advocacy initiative to align the efforts of U.S. government food and nutrition policymakers and our global stakeholders to advance a set of Precautionary Allergen Labeling (PAL) guidelines at the Codex Alimentarius Commission (CAC) that are key to the health and well-being of our domestic – and global – community. 

The CAC is a joint Food and Agriculture Organization (FAO) and World Health Organization (WHO) Food Standards Program established in 1963 that formulates voluntary international standards, guidelines, and codes of practice that constitute the Codex Alimentarius. The Codex Alimentarius, or “Food Code,” sets international food standards to protect consumer health and ensure fair trade. Its Committee on Food Labelling (CCFL) establishes guidelines for nutrition information on packaging, helping consumers make informed choices. These committees are key to shaping the food system and building global consensus on nutrition. 

In 2024, we met with U.S. Codex Office officials to highlight patient concerns about PAL. Following stakeholder collaboration, we submitted formal comments urging recognition of celiac disease as distinct from IgE-mediated allergies and updates to include gluten-containing grains in PAL definitions. In the fall of 2024, our Public Policy team attended the U.S. Codex Public Meeting to discuss PAL, and CEO Marilyn Geller was invited to join the U.S. delegation to the 48th meeting of CCFL in Quebec City, Quebec, Canada, where she proudly represented the patient perspective.  

At the conclusion of CCFL48, the needs of celiac disease patients were clearly recognized, including both the need for separate definitions and policies alongside those for allergy patients, and also specific food labeling accommodations. Notably, CCFL48 agreed to update guidelines for a “concentration or reference dose for cereals containing gluten or gluten” and will collaborate with FAO/WHO to establish scientific guidance to establish new guidance on this reference dose for gluten. 

In 2025, our Public Policy Team will continue collaborating with our stakeholders and U.S. Codex officials in preparation for the next meeting of CCFL. Additionally, we are facilitating discussions that will support global Codex efforts and the scientific data that will inform needed regulatory changes – including  the accepted concentration or reference doses for gluten.  

Establishment of the Congressional Celiac Disease Caucus  

We have worked with our champions in Congress on the creation and launch of the Congressional Celiac Disease Caucus, a group of lawmakers dedicated to advancing innovative celiac disease research and legislation aimed at improving patient outcomes. Establishing this Caucus has been a top legislative priority, creating a vital platform for Members of Congress to collaborate, exchange information, raise awareness about celiac disease, and amplify the voices of the patient community. We are grateful for the leadership of Congresswoman McCollum in creating the Caucus. Read more here. 

Celiac Disease Foundation Annual Hill Days 

Patient advocacy is the heart and soul of The Celiac Disease Foundation. We are committed to supporting legislation and regulatory policies that hold promise to advance diagnosis, treatments, and a cure for celiac disease. For over 30 years, we have partnered with our national network of advocates to secure federal recognition of celiac disease as one of the most common yet underdiagnosed genetic autoimmune diseases, affecting over three million Americans.

Our federal government advocacy program has expanded dramatically in the past several years, and in 2020 we instituted annual visits to represent the needs of the celiac disease community to policymakers in Washington, D.C. We constantly assess the status of the policy and regulatory landscapes to determine the best path forward in our advocacy efforts. 

Learn more about our Hill Day successes here: 

2024 

2023 

2022 

2021 

2020 

Celiac Disease as a Model for Autoimmune Research  

Critical to our celiac disease advocacy at the National Institutes of Health is our continued work to influence the thinking and decisions of policymakers and regulators on all autoimmune research. The following timeline summarizes NIH work related to celiac disease that informs autoimmune disease research efforts: 

May 2019 – FY2020 NIH Appropriations includes report language approved by Congress and drafted by the Celiac Disease Foundation that directs NIH to increase focus on celiac disease research. 

May 2020 – NIH’s Autoimmune Disease Coordinating Committee (ADCC) meets to review findings of the March 2020 SSCD Consensus Workshop: Research Opportunities in Celiac Disease. 

March 2021 – NIH hosts the two-day Accelerating Progress in Celiac Disease Workshop to identify scientific gaps in celiac disease research. CEO Marilyn Geller and members of the Foundation Medical Advisory Board presented at this workshop. As a result of this event and additional work, a Notice of Special Interest (NOSI) in Celiac Disease was published in December 2021 and the first-ever Research, Condition, and Disease Categorization (RCDC) for celiac disease was created in FY2021. 

April-June 2021 – Using the model created by celiac disease, ADCC leadership identifies gaps in NIH’s autoimmune portfolio. Consensus was reached on three areas: fatigue, pain, and the microbiome. 

March 2022 – NIAID conducted a funding survey of the three areas identified, determining that fatigue research was underfunded. 

December 2022 – ADCC meets to review progress and discuss next steps on fatigue research. 

The enhanced focus on celiac disease at NIH, beginning in FY2020, served as a key pillar to assess research on other autoimmune diseases, and we are committed to continued efforts that will help both our celiac patient community and the broader autoimmune patient community. 

Providing Critical Resources: Mark Cuban Cost Plus Drugs Partnership 

We have partnered with Mark Cuban Cost Plus Drug Company (Cost Plus Drugs) to provide resources for celiac disease patients and all consumers concerned about potential gluten in the company’s medications. Read more here. 

Leading the Fight to Improve Food Security for Women, Infants, and Children with Celiac Disease 

One of the most powerful ways our Public Policy Team advocates on behalf of the patient community is to work with the federal government to improve the lives of everyone affected by celiac disease. Each day we search for ways to effectively carry patient concerns to lawmakers in Congress and federal regulatory agencies. 

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 Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) program. 

This program is designed to safeguard the health of low-income women, infants, and children up to age 5 who are at nutritional risk by providing supplemental nutrition foods, education on healthy eating, and referrals to healthcare services.  

Honoring our Champions: The Celiac Disease Foundation Policy Leadership Award (Annual) 

Recognizing our champions in Congress is important to the work we do. In 2024, we instituted this new award to be given annually. On May 22, 2024, we awarded the first Celiac Disease Policy Leadership Award to U.S. Representative Betty McCollum (MN-04) for her distinguished service and advocacy on behalf of the celiac disease patient community. Read more here. 

We Can’t Wait Campaign Partnership 

In 2022, the Celiac Disease Foundation partnered with the Crohn’s & Colitis Foundation on the Open Restrooms Movement. Like inflammatory bowel disease, celiac disease often creates an urgent need for restroom access. Together with other esteemed partners, we aim to raise awareness of these conditions and promote restroom access as a basic human need. Learn more here. 

Supporting Partner Coalitions 

We deeply value the contributions of the numerous stakeholder organizations working in this field and actively collaborate to support their initiatives. This includes endorsing community letters directed to Congress, federal agencies, and the White House that aim to protect and advance the well-being of our patient population. In 2024, the Celiac Disease Foundation signed onto more than 20 stakeholder letters and remains committed to supporting these collective efforts in the future.