For more than 27 years, the Celiac Disease Foundation and our national network of activists have worked diligently for federal recognition of celiac disease as one of the world’s most prevalent, and least diagnosed, genetic autoimmune diseases.  We continue to educate our elected officials on the impact of celiac disease, and to emphasize the need for gluten-free labeling standards and funding of celiac disease research and education programs. Together, we must work to make our voices heard to elevate celiac disease on the nation’s healthcare agenda. The Foundation is committed to working with the United States Congress, federal government agencies, and state legislatures and agencies to improve the lives of the more than three million Americans affected by celiac disease.

The Celiac Disease Foundation’s public policy priorities include:

Recognition by the National Institutes of Health for federal research grants:

The importance of the National Institutes of Health (NIH) in funding biomedical research cannot be overstated. The NIH is a major funder of research, with an annual budget in excess of $30 billion, and no line item for celiac disease. Federal research grants are critical to allow researchers to advance treatments, drive diagnosis, and find a cure for celiac disease.

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Patient protections for chronic disease:

The Celiac Disease Foundation unceasingly works to educate Members of Congress about the unique challenges faced by individuals with chronic conditions. We will continue to demand that patient protections be maintained in any new health plan that emerges from Congress. Specifically, the Foundation will fight to prohibit pre-existing condition discrimination; individuals must be able to equitably access comprehensive healthcare coverage regardless of their health status, diagnosis, and related factors.

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Regulations for the labeling of gluten in medications:

The 2014 FDA Gluten-Free Labeling Rule was a tremendous achievement for the gluten-free community as it provides transparency and peace of mind that a packaged food product with a gluten-free label is, in fact, gluten-free. A gluten-free label on a packaged food product ensures that the product contains less than 20 parts per million of gluten, which is the safe threshold of gluten consumption for those with celiac disease.

This has significantly reduced consumer confusion and has gone a long way in allowing those with celiac disease and non-celiac gluten sensitivity to “eat without fear.” The Celiac Disease Foundation is therefore urging the Food & Drug Administration to mandate a “contains gluten” statement on medications to assure that a medication without this statement would be safe for people with celiac disease and non-celiac gluten/wheat sensitivity.

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The 2019 Gluten in Medicine Disclosure Act will make it easier to identify gluten in prescription drugs. This legislation would require drug manufacturers to label medications intended for human use with the list of ingredients, their source, and whether gluten is present. A gluten-containing drug that does not meet these requirements would be considered misbranded under Section 502 of the Federal Food, Drug, and Cosmetic Act.

This labeling will allow concerned consumers to know, for example, if the starch in their prescription drugs comes from wheat or corn. For the nearly 3 million Americans living with celiac disease, that small distinction is an important one. Please join us in asking your Members of Congress to cosponsor this important piece of legislation to make it easier and safer for individuals with celiac disease or gluten sensitivity to make informed purchases of needed medications.

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