After a long fight, in 2014 the FDA finally implemented regulations for the labeling of gluten-free foods. In 2013, Representative Tim Ryan (D-Ohio) introduced legislation that would apply similar labeling requirements on all medications, both prescription and over-the-counter. We strongly endorsed this legislation when it was first introduced in 2013, but it never made it to a vote.
This year, we pledge to re-double our efforts, along with other celiac disease organizations, to get this vital legislation passed and on to the White House for signature. Celiac disease patients deserve to know what is in the medications they take that are supposed to make them well. Below is the letter that we sent to Congressman Ryan endorsing the Gluten in Medication Identification Act. Shortly, we will be posting a link for you to alert your representatives of this legislation, asking for their support of it.
September 16, 2015
The Honorable Tim Ryan
U.S. House of Representatives
1421 Longworth House Office Building
Washington, D.C. 20515
Dear Congressman Ryan:
On behalf of Celiac Disease Foundation (CDF), I want to enthusiastically endorse the “Gluten in Medicine Identification Act,” and pledge our organization’s support to get this important legislation through Congress this year.
CDF is the leading disease advocacy organization for the celiac disease community. Our role in this community is particularly important because only one in six Americans with celiac disease has been correctly diagnosed, and the long-term impacts of the disease, especially on the undiagnosed, are still unknown. This is precisely why more than five million individuals reach out to us every year seeking information about the disease, diagnosis, gluten-free diet, alternative treatments, ongoing and proposed research, and more, for themselves and/or for their loved ones.
Celiac disease affects 1 in 100 people worldwide, including three million Americans. As troublesome, the number of individuals with celiac disease is doubling every 15 years. For those afflicted, ingestion of even the smallest amount of gluten – wheat, rye, and barley – can cause serious damage to the small intestine, resulting in long-term health complications that include intestinal cancers and coronary heart disease. Earlier this year, we surveyed our audience for a presentation to the FDA. From that survey, we quantified that while adherence to a strict gluten-free diet has improved the overall quality of life for almost everyone in our community, 88% continue to show symptoms while on the diet. For most, these symptoms present after accidental exposure to gluten. For more than 60% of those, the symptoms – bloating, abdominal pain, fatigue, bone or joint pain, anxiety, depression – continue for more than three days, and often result in absence from work and school.
This is a key reason why your proposed legislation is so important to the celiac disease community. We should be able to take both prescription and non-prescription medicines with as much confidence as possible that it will improve our quality of life. Without this legislation, that confidence is missing.
CDF would like to support your leadership on this important legislation. It is important to us that it is passed during this Congress. Please contact Marilyn Geller, at 818-716-1513, to discuss how we can best support your efforts to advance this bill.
Sincerely,
Marilyn G. Geller, Chief Executive Officer