Digestive Disease National Coalition Public Policy Forum Advocates for Increased Funding for the National Institutes of Health

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As part of the Celiac Disease Foundation’s expanding effort to give voice to the celiac disease community in important areas of healthcare policy and federal funding for disease research, Laura Boone, Celiac Disease Foundation Development Manager and Alana Broe, Celiac Disease Foundation Legislative Analyst, attended the Digestive Disease National Coalition (DDNC) Public Policy Forum held in Washington, D.C. on March 4-5, 2018.

The Forum gathered representatives from digestive and autoimmune disease organizations across the United States to develop common agendas to educate Members of Congress and influence healthcare policy. Boone and Broe met with congressional representatives to advocate for increased funding for the National Institutes of Health (NIH), and more specifically, for NIH’s National Institute of Diabetes and Digestive and Kidney Diseases, under which celiac disease is classified. This increased funding is necessary to advance research for celiac disease treatments and, eventually, a cure.

Furthermore, during each meeting, Boone and Broe urged Members of Congress to make gluten-free labeling of medications a priority. While the Foundation applauds the efforts of the Food & Drug Administration (FDA), we recommend an affirmative, mandatory “contains gluten” label on any medication with gluten-containing ingredients. Boone and Broe informed representatives of the practical burdens of unlabeled medications, and stressed the need for additional protections for the celiac disease community.

For too long, advocates for celiac disease research and education have lacked a strong voice among federal health policy makers in Washington, D.C. As a result, celiac disease is well down the federal priority list, even in comparison to other autoimmune and gastrointestinal diseases. Public Policy Forums such as this allow the Foundation to take collaborative action to increase the diagnosis rate and improve the quality of life for those living with celiac disease by maintaining a constant and forceful presence in Washington, D.C. As the leading disease advocacy organization for celiac disease, we are making our voice heard.

About the Digestive Disease National Coalition

The Digestive Disease National Coalition is the leading public policy advocacy organization in our nation’s capital for persons affected with digestive diseases. Their annual policy forum brings together patients, health care providers, industry representatives, lawmakers, and their legislative staff for two days of educational programs, legislative updates, and advocacy training. The objective is to brief participants from around the country on federal health care legislation and policy, and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community. The Celiac Disease Foundation sits on the Board of Directors for DDNC.

Digestive Disease National Coalition Public Policy Forum Advocates for Increased Funding for the National Institutes of Health

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