Celiac Disease is a potentially life-threatening food allergy and chronic autoimmune disease that is not being taken seriously by our Federal government. As detailed in the Senate Appropriations Committee testimony submitted by Jon and Leslie Bari, NIH has underfunded Celiac Disease research (with only about $3 million/year).
Without public funding of basic research, drug development is severely hindered. Public funding is perceived as validation of the seriousness of a disease and unmet needs. Absent public funding validation, a vacuum is created, which causes private funding to be scarce. The paucity of funding for Celiac Research is shocking especially when comparing it to other conditions that are much less common, arguably less severe and which have available treatments. Moreover, Celiac Disease research has the potential to improve therapies for other auto-immune conditions and unlock the medical mysteries of the microbiome which may help treatment across a wide spectrum of diseases.
On April 9, 2019, Marilyn Geller, CEO of the Celiac Disease Foundation, testified to the U.S. House of Representatives’ Appropriations Committee. It was heartening to hear Ms. Geller’s testimony and Congresswoman DeLauro’s feedback that Celiac Disease research has to be taken more seriously by our Federal government.
The lack of NIH funding has created a vacuum and stifled innovation in the treatment and cure for Celiac Disease. This can change in FY 2020 with meaningful NIH funding that validates research ready initiatives at multi-institute translational research centers including University of Chicago Celiac Disease Center, Celiac Disease Center at Columbia University Medical Center, Harvard Medical School Celiac Research Program, Celiac Disease Program at Children’s National Health System and Children’s Hospital of Philadelphia's Celiac Disease Center.
Senate Appropriations Testimony
Senate Appropriations Committee testimony submitted by Jon and Leslie Bari, May 28, 2019.