On March 1 and 2, 2015, Talia Hassid, Celiac Disease Foundation’s Community Coordinator, attended the Digestive Disease National Coalition Public Policy Forum held in Washington DC. The forum gathers representatives from digestive disease organizations across the U.S. together to arrive at a common agenda to influence health care policy in the United States. Talia met with Members of Congress and other leaders 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. She also made our case for additional funding for the Food and Drug Administration. Increased federal funding for both therapeutic research and healthcare provider and consumer education is a critical component in our national campaign to address the abysmal diagnosis rate of celiac disease. For example, the FDA is hosting a landmark conference on March 30th, 2015 entitled Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (GREAT3). GREAT3 will seek testimony to inform endpoints and outcome measures for clinical trials for products intended to treat adult and/or pediatric celiac disease and inflammatory bowel disease. A number of CDF Medical Advisory Board members will be testifying.
For far too long, advocates for celiac disease research and education have lacked a strong voice among federal health policy makers in Washington. As a result, celiac disease is well down the federal priority list, even in comparison to other autoimmune and gastrointestinal diseases. Last year, after a long struggle, we, together with our coalition partners, were able to secure federal standards for gluten-free labeling on food. If we are to achieve the same success in lowering the number of undiagnosed and improving the quality of life for those living with celiac, CDF and our allies must be a constant and forceful presence in Washington. This is precisely why in March 2015 alone, CDF representatives will be in DC for three separate opportunities to make our case for more federal support. In addition to DDNC and GREAT3, CDF will also be represented at The State of Autoimmune Disease Summit. This is unprecedented in our 25-year history. The time, however, to make ourselves heard is now.
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. This annual event 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.