On May 11, Sophia Schilling, Legislative Assistant to Congresswoman Betty McCollum (MN-04), distributed a letter to the Members of the Congressional Celiac Disease Caucus. This is a notable event as it was the first official letter to the Caucus members. On behalf of Congresswoman McCollum, Chair of the Congressional Celiac Disease Caucus, Ms. Schilling thanked the members for participating in this important initiative and shared with them a synopsis of the current state of celiac disease research, federal funding, and legislation, including: 

  • A short narrative summary of the Columbia University Consensus Conference, the National Institutes of Health’s (NIH) Notice of Special Interest, and current legislative priorities. 
  • A Celiac Disease Foundation-prepared white paper that makes a case for $12 million in funding from the Department of Defense for celiac disease research. 
  • A Celiac Disease Foundation-prepared document that details the FY23 Appropriations Request Language for the NIH.  
  • Utilizing the Celiac Disease Foundation as the point of reference for celiac disease information. 

This letter below is yet further evidence that the Foundation’s advocacy efforts in Washington, D.C. are making a significant impact…impact that your sustained support makes possible. We are determined to elevate the celiac patient voice so that celiac disease receives the attention from the federal government that it has long deserved. We thank and applaud Congresswoman McCollum, Legislative Assistant, Sophia Schilling, and the members of the Celiac Disease Caucus for their efforts to advance our agenda. 

“Dear Members of the Congressional Celiac Disease Caucus,

On behalf of Congresswoman McCollum, Chair of the Congressional Celiac Disease Caucus, I would like to welcome and thank each of you for joining the first Congressional Caucus dedicated to advancing legislation that will ease the suffering of celiac disease patients. To start off with a bit of housekeeping, my colleague Patrick Maillet is leaving the Hill and I will be the new POC for the Celiac Caucus (and all health policy issues) for Rep. McCollum. 

I write to you today to provide a synopsis of the current state of celiac disease research, federal funding, and legislation. 

Columbia University Celiac Disease Center Livestream International Symposium 

On April 8 and 9, 2022, this gathering of international celiac disease experts presented the opportunity to share the latest research in celiac disease with representatives from the NIH and FDA. There was a consensus among the group that, largely because of a history of limited funding, there is a scarcity of young researchers entering the field that is hindering the search for treatments and a cure for celiac disease. In response, the Celiac Disease Foundation is awarding two annual research prizes to attract and keep promising young talent in celiac disease research- the Celiac Disease Foundation Prize for Excellence in Celiac Disease Research, and the Young Investigator Prize.  

National Institutes of Health Notice of Special Interest 

In November of 2021, NIH released the first ever Notice of Special Interest for Celiac Disease to provide dedicated research funding for the study of celiac disease. NIH’s announcement reads:

“The purpose of this Notice of Special Interest (NOSI) is to inform potential applicants to the National Institutes of Health (NIH) of special interest in research on the etiology and pathogenesis of celiac disease, identification of therapeutic targets, and development of preventative or disease ameliorating therapies/strategies.” 

The Celiac Disease Foundation, in partnership with the Society for the Study of Celiac Disease, has modified draft FY23 Appropriations Report Language to include funding for research efforts toward causation, diagnosis, management, treatment, and ultimately a cure of celiac disease.

Legislation & Funding Requests for Review 

We encourage your offices to learn more and consider cosponsoring the following legislation and funding requests for celiac disease. 

Attached please find documents detailing NIH and Congressionally Directed Medical Research Programs requests. 

H.R.2435 – Gluten in Medicine Disclosure Act of 2021 

H.R.3108 – Medical Nutrition Therapy Act of 2021 (Senate Companion- S.1536) 

H.R.4917 – Food Labeling Modernization Act of 2021 (Senate Companion- S.2594)

Thank you for your commitment to improve the lives of the 3 million Americans living with celiac disease. We look forward to continuing to work together on these issues. For any questions about celiac disease, please feel free to email [email protected].” 

Despite the millions who suffer, celiac disease has largely been ignored by our federal government which, until recently, has provided little to no funding for research nor for public awareness of its serious consequences. Through strategic investments in research, advocacy, and education, the Celiac Disease Foundation seeks to accelerate treatments and a cure. Become a Celiac Disease Foundation State Advocacy Ambassador today and drive policy change to improve the health of those living with celiac disease.