At the top of the agenda when I became Chief Executive Officer of the Celiac Disease Foundation in 2012 was mobilizing every available resource to ensure that celiac disease and its patients are treated with seriousness, urgency, and compassion.
The need for action is clear. The failure to understand and treat celiac disease appropriately manifests in low rates of diagnosis, lack of research funding and alternative treatments, and limited understanding of the economic and social costs of this disease.
With the dedicated support of our patient community, we have worked methodically to raise awareness of the seriousness of celiac disease and see the results: dramatic growth of gluten-free products on grocery shelves, release of effective gluten-free labeling rules by the U.S. Food and Drug Administration, issuance of a Notice of Special Interest for Celiac Disease by the National Institutes of Health, creation of the U.S. Congressional Celiac Disease Caucus, and the increasing number of celiac disease drugs in the development pipeline.
While we have made significant progress, work remains with the U.S. Centers for Disease Control and Prevention, as this agency is important to the overall goal of accelerating research into treatments and a cure.
As “the nation’s leading science-based, data-driven, service organization that protects the public’s health,” the CDC conducts research into diseases, their prevalence, and impacts. This information is shared with the general public and public health community to educate and mobilize any needed response.
The agency also maintains the CDC A-Z Index, a tool that lists topics with relevance to a broad cross-section of its audience. Currently, celiac disease is not included on this list.
The CDC should serve as an essential source of research and data about celiac disease. This disease is life-changing; affecting an estimated three million Americans, it holds potentially devastating consequences for those who are diagnosed – and untold suffering for the millions more who are not.
Today we are working to address this issue and have drafted a letter for distribution to the Congressional Celiac Disease Caucus about the CDC A-Z Index. We are gathering support for this effort and will provide action updates and ways you can help in future communications.
With your steadfast support and generous donations, we have made significant progress to ensure that celiac disease and its patients are recognized with seriousness, urgency, and compassion. We continue our efforts as we look to a future where that recognition becomes reality.
To Our Health,
Marilyn G. Geller