Affecting 1% of the population, celiac disease is one of the world’s most prevalent genetic autoimmune conditions. In the United States, celiac disease is also one of the least diagnosed, with an estimated 2.5 million children and adults continuing to suffer needlessly. Long-term health complications of undiagnosed celiac disease include cancers, coronary heart disease, osteoporosis, neurological deficits, infertility and generalized poor quality of life. Economic consequences are significant, with an average annual burden of nearly $2,000 for individuals with celiac disease compared to those without.
To encourage celiac disease advocates to become vocal nationally as well as in their communities, Celiac Disease Foundation (CDF) has created an online Advocacy Program. The Advocacy Program provides information, guidance, tools and resources to push for improvements in celiac disease promotion, early detection, treatment and research by raising awareness among government leaders, opinion makers, health policymakers and the general public. Integrated with the American Celiac Disease Alliance (ACDA) platform, it includes a Legislative Action Center for individuals to easily learn about federal and state legislative bills, follow their status, and search for and contact their elected officials.
“Celiac Disease Foundation’s Advocacy Program provides for a united advocate voice to encourage decision makers to champion celiac disease in the face of competing priorities,” says Marilyn Geller, CDF Chief Executive Officer. “This means assuring that these decision makers are aware of the economic impact of celiac disease in lost productivity due to non-diagnosis and increased healthcare costs, as well as poor quality of life.”
“The CDF constituency rates advocacy as one of the Foundation’s greatest priorities and strengths,” says Marc Riches, CDF Board Chair. “The CDF Advocacy Program provides sections on working with government officials, community leaders and the media, encouraging healthcare practitioners to learn about celiac disease, and fundraising. We have all seen the effects of advocacy efforts for other diseases. It is our hope that the CDF Advocacy Program will empower the celiac community to achieve equally impressive results.”
The Advocacy Program is the latest tool in CDF’s Toolkit to help people with gluten-related disorders monitor, manage and advocate for their disease. The CDF Toolkit includes a symptoms checklist (celiac.org/symptoms) designed to facilitate communication between patients and their healthcare practitioners, a nationwide directory of practitioners (celiac.org/directory) specializing in celiac disease and gluten-sensitivity who can review checklist results to determine a patient care plan, and a 7 Day Gluten-Free Meal Plan (celiac.org/mealplan) to help the newly diagnosed and their families ease the transition to a gluten-free diet.