As part of 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, on March 5 and 6, 2017, Talia Machlouf, CDF’s Director of Advocacy and Research, attended the Digestive Disease National Coalition Public Policy Forum held in Washington, D.C. The forum gathered representatives from digestive disease organizations across the United States together to develop common agendas to influence healthcare policy. 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, under which celiac disease is classified. During the same Capitol Hill visits, Talia urged Members of Congress to fight to retain common sense patient protections during the Affordable Care Act (ACA) “repeal and replace” debate. Specifically, Talia focused on the ACA pillar of prohibiting pre-existing condition discrimination in whatever new health plan that emerges from Congress. This is of particular concern to patients with chronic, incurable conditions like celiac disease. Individuals must be able to equitably access comprehensive healthcare coverage regardless of their health status, diagnosis, and related factors.
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. As the leading disease advocacy organization for celiac disease, we are making our voice heard. In order to increase the diagnosis rate and improve the quality of life for those living with celiac disease and non-celiac wheat/gluten sensitivity, CDF and our allies must be a constant and forceful presence in Washington, D.C.
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.