National Celiac Groups Attend Advocacy Efforts in Washington DC

Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS.

Celiac organizations and patients from several states recently attended two very important educational lobbying efforts in Washington DC. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America (CSA/USA) were formally represented, and were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). Our goals in lobbying were twofold. First to encourage the Senators and Representatives we visited to support a 16.5 % increase in the Budget for NIH (National Institutes of Health) and to provide $405 million to NIAMS in fiscal year 2001. This money is important in efforts to double the NIH budget by 2003. NIH is the major funding organization for research that is supported by government grants. Often research that may not seem directly linked to celiac disease and dermatitis herpetiformis, is beneficial to our disease and others. A good example is the Genome Project. Genetic mapping will help researchers refine their research and hopefully speed efforts to find causes and cures for diseases.

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The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March 19, 2001, celiac disease had the largest patient representative group at the DDNC, and reached nearly 20 representatives. Members of DDNC and NIH were very impressed by our representation of celiac disease. The following week we had 3 representatives attend the NIAMS Advocacy efforts. While visiting our Congress people we had the opportunity to tell our stories and explain how legislative decisions impact us individually, as well as share some facts about celiac disease/DH. Fact Sheets and other materials were left in each congressional office that we visited.

DDNC represents many gastrointestinal disease organizations. We are pleased that all the national celiac organizations are members of this coalition. NIAMS and CPA-SDR (Coalition of Patient Advocates for Skin Disease Research) are the coalition groups that the Gluten Intolerance Group (GIG) is a member of, in order to represent persons with dermatitis herpetiformis. Work by coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent.

Patient advocacy work is important, however, you should also know that nonprofit groups (501c3) are severely limited by law in the amount of funding that can go toward advocacy work. In this regard we need your help, please:

• Write to your Congress people about your disease and encourage them to support the NIH budget increase. Send them copies of the Fact Sheet. Visit them when they are at home (usually weekends and Mondays).
• Join the national celiac organizations in representing a united, common voice. We are strongest when we speak as one. The more voices saying the same thing the better. Let your national group(s) know you want to participate in these activities. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America(CSA/USA) were formally represented. DDNC and NIAMS groups are often invited to participate in advocacy work throughout the year.
• Plan to come to Washington DC next year. Often Congress people are very busy and sometimes selective in whom they see. They want to hear from their constituents. An example was a Senator from California who wanted to see constituents from her district. If there had not been a representative from California on a team, that senator would not have heard about Celiac Disease.
• We need representatives from as many states as possible. Although, our lobbying efforts are at the mercy of the Congress schedule, these events often take place in March or April.
• Offer to testify. Testifying before Budget and Health Committees is by written invitation only. First we must write letters asking permission to testify and then wait to be approved. It is a wonderful experience to express our story in this manner. Children and people severely affected by the disease are the most influential.