Last week in Washington, D.C., the Celiac Disease Foundation and our allies secured two critical wins in our mission to drive policy change to improve the health of those living with celiac disease and accelerate research for better diagnostics, treatments, and a cure.  

1. On June 30, the House Appropriations Committee distributed its FY2023 budget report which included the following language about celiac disease: 
Celiac Disease.—The Committee supports research to improve the quality of life for patients with celiac disease, efforts to find the cause of the disease, and efforts to find a cure. The Committee commends NIH for issuing a Notice of Special Interest to spur additional research on the study of celiac disease. Today, the only known treatment for this disease is a gluten-free diet; however, recent public and private sector research confirms that such a ‘‘treatment’’ is insufficient for many who suffer from celiac disease. The Committee urges NIH to support focused research on the study of celiac disease; to better coordinate existing research; and, to focus new research efforts toward causation, diagnosis, management, treatment, and, ultimately, a cure of this disease. The Committee thanks NIH for establishing a Research Condition, Disease Categorization (RCDC) for celiac disease.

We are deeply grateful to everyone who has supported our work to continue securing federal funding for celiac disease research each year. From the Celiac Disease Foundation Patient Advocates who met with their Members of Congress alongside the Foundation and rallied their Representatives to join the Congressional Celiac Disease Caucus, to the esteemed researchers who collaborated with us to ensure this language reflects the needs of the celiac patient community, we thank you for your commitment and hard work and for all that we have accomplished together.

2. The last sentence of the House Appropriations budget report reflects our other big win last week. NIH’s Research, Condition, and Disease Categorization (RCDC) lists the diseases and conditions for which NIH funds research, and the dollar amount of research funded. Remarkably, until last week, celiac disease was not on the RCDC list (308 other diseases and conditions were). The RCDC shows historical disease funding from FY2008 to FY2021. For every year from 2008-2020, celiac disease research spending is reported at $0 (there was a limited amount of funding for celiac disease in those years, but because there was no RCDC for celiac disease, it was never recorded as such). In FY2021, research funding was reported at $9 million, and is projected to remain steady at that level for the next two fiscal years.

On June 22, Sophia Schilling, Legislative Assistant to Congresswoman Betty McCollum (DFL-Minn.), Chair of the Congressional Celiac Disease Caucus, distributed an Electronic Dear-Colleague to Caucus Members, encouraging them to join in our efforts to thank NIH and the National Institute of Allergy and Infectious Diseases (NIAID) for their support of celiac disease research, and request an update on the development of a RCDC for celiac disease. Sophia included a letter, drafted by the Celiac Disease Foundation’s Advocacy Counsel at Baker Donelson, for Caucus Members to sign and send to Dr. Anthony Fauci, the Director of NIAID. After this letter was sent, the RCDC was established by NIH.

We would like to extend our sincerest thanks to Congresswoman Betty McCollum, Chair of the Congressional Celiac Disease Caucus, and Sophia Schilling, for working with us to urge NIH to establish a RCDC for celiac disease.

Together, we have worked tirelessly with our Patient Advocates, the research community, and our partners in Congress to raise awareness of celiac disease in Washington, D.C. Every victory has been hard won. For example, the inclusion of celiac disease language in the U.S. budget began in 2020 after Celiac Disease Foundation CEO, Marilyn G. Geller, testified to the House Subcommittee in 2019.  

The momentum that we are gathering for the celiac disease patient community has been greatly enhanced by the launch of the Congressional Celiac Disease Caucus under the leadership of Congresswoman Betty McCollum. Today, the Celiac Caucus has 27 members. We need more, and we need your help. We encourage you to contact your Representative and urge them to join the Celiac Caucus by sending a quick letter through our Take Action Center 

We are deeply grateful to all those who have supported our work and to our celiac community for everything we have accomplished, and will continue to accomplish, together.   

Interested in becoming a Celiac Disease Foundation State Advocacy Ambassador? Visit iAdvocate to learn more and become a part of our nationwide network of celiac disease Patient Advocates.