Advocating on Behalf of Persons with Celiac Disease – Doing It Well

Celiac.com 07/29/2023 - For many years Gluten Intolerance Group™ (GIG) has advocated on behalf of persons with celiac disease. Advocacy can include the increase of celiac disease awareness, the improvement of knowledge and educational materials distributed by any number of organizations, sitting on boards and committees of coalitions on behalf of persons with celiac disease or dermatitis herpetiformis, and fighting to pass legislation that will improve the quality of life for persons with gluten intolerance.

Advocacy is important work. It takes skill and the desire to work as a team. At times the work can also be slow and frustrating. According to Kay Holcombe’s presentation at the 2002 GIG™ Annual Education Conference in Winston-Salem, North Carolina, anyone can learn to be an effective advocate. Ms. Holcombe is a lobbyist with Policy Directions, Inc. in Washington DC. She has years of health care and label reform experience. At the conference Ms. Holcombe offered the following advice for how to become an effective advocate:

1. Keep your agenda short and to the point – When you advocate you should have no more than three agenda items or points to cover. Know what they are, what you want, and how you are going to get your message across. When you try to make too many points during a presentation it can lose its power and influence.
2. Be knowledgeable about the issue – It is important to thoroughly understand an issue before you discuss it with your congressperson. If you do not understand the issue well enough you cannot answer questions about it or understand how it will impact people. The last thing you want to do is to lose your congressperson’s respect because do not know what you are talking about or are confused.
3. Be honest – The rule here is do not try to mislead them. Their staff will do extensive research and will know if you are being less than honest.
4. Have a consistent message – Nothing can hurt your cause more than to have several people who advocate it but do not say the same thing about it. Everyone must use the same words in the same manner. The message should be short, simple and consistent. Even slight deviations in your message could convey to representatives that you are not united. Everyone must ‘Speak with One Voice.’

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Ms. Holcombe also advised that success in advocacy work is often measured in small victories, and not necessarily in an all-out victory. A good example of this is the ingredient label reform bill currently being considered by congress. The original bill required that seven major allergens (including wheat) be clearly labeled on all food products. Through an extensive letter writing campaign, partnerships with other influential groups and expert testimony, additional language was added to the bill so that it also included "other grains containing gluten (rye, barley, oats and triticale)." This was a great victory for us— even if the bill does not ultimately pass. We got them to understand that gluten in food is an important issue for many people.

Other celiac organizations have also joined GIG™ to do advocacy work. Currently most of our advocacy work is national in scope, but we also work on state issues. To "speak with one voice" in order to be effective advocates is an important lesson that provides celiac organizations in the U.S. with an opportunity to show unity for a common cause. While not always an easy task, it is an important goal that will benefit all persons with gluten intolerance.

To learn more about the advocacy efforts of GIG™ contact us at gluten.net. We are currently working on national issues that could affect people with gluten intolerance in the following areas: quality of life, extra cost of food reimbursement, product labeling, research, professional and public awareness and education, and restaurant regulations.