CEO Marilyn G. Geller’s testimony before the House Appropriations Subcommittee has helped secure report language in the House’s version of the 2020 Labor-HHS-Education bill demanding that the National Institute of Health (NIH) report to Congress in 90 days on its plans to aid celiac disease patients. This acknowledgment that celiac disease is a serious condition requiring action and money dedicated to research is long overdue and the result of a long advocacy effort.

The Senate added their own report language requiring that an institute within the NIH, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), dedicate sufficient resources to focus research efforts toward better understanding the causes of celiac disease in order to find and develop a cure. This is the first time the NIH has acknowledged celiac disease as a serious condition that requires national attention and action.

The achievement of this landmark is due in part to CEO Marilyn G. Geller’s testimony in April. The testimony was based on over 800 personal stories received by the Foundation from patients in the celiac community expressing their life changing experiences with celiac disease and pleading to Congress for help.

The next step involves reconciling the two versions of the bill. The Senate and House will have to come to a consensus in a budget conference, which should take place around December 2019. In the meantime, the Celiac Disease Foundation will be engaging negotiators to obtain the strongest possible outcome for our objectives.

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Senate Approves NIH Language for Celiac Disease