On March 6, 7, and 8, a group of 6 Celiac Disease Foundation patient advocates joined our team for a round of bipartisan meetings with several key members of Congress, all of whom sit on either the Senate or the House Appropriations Committees. These Committees oversee federal funding for health programs including the National Institutes of Health (NIH), Department of Defense (DOD), the U.S. Food and Drug Administration (FDA), and the Centers for Disease Control and Prevention (CDC), and have tremendous impact on our efforts to advance diagnosis, treatment, and a cure for celiac disease.
On the Senate side, patient advocates met with staff from the offices of both Sen. Richard Blumenthal (D-CT) and Sen. Shelley Moore Capito (R-WV). On the House side, patient advocates met with the staff of Rep. Betty McCollum (D-MN), chair of the Celiac Disease Caucus, Rep. Tom Cole (R-OK), and Rep. Derek Kilmer (D-WA). In each meeting, these patients shared moving accounts of their experiences living with celiac disease, and spoke passionately about the need to continue – and increase – research funding for celiac disease at the NIH and the Department of Defense, as well as other measures that Congress might take to improve the quality of care for celiac disease patients. Our advocates were well-prepared to address the issues of personal concern to themselves as well as the broader concerns of our patient community. The meetings went extremely well, and we will be following up with these Members over the course of the 118th Congress.
We extend our deepest gratitude to the advocates who partnered with us to make these requests effective: Carolyn, Karen, Nikki, Sherry, Sonia, and Yolande – your dedication, energy, and engagement make progress possible!
In addition, on February 20, the Foundation submitted comment on behalf of our patient community to U.S. Department of Agriculture Secretary Tom Vilsack on a series of proposed changes to the Food and Nutrition Service Women’s Infant and Children (WIC) Food Package Rules that would benefit celiac disease patients and caregivers enrolled in this critically important program. Our team drafted the comment and secured more than 20 signatories –representing an expert group of medical, professional, and non-profit organizations. We argue that because strict adherence to a gluten-free diet is the only approved treatment for celiac disease, for celiac patients, food is medicine – consistent with the National Strategy released as part of last year’s White House Conference on Hunger, Nutrition, and Health.
Among the changes we are arguing for are a permanent increase in benefits to help cover the higher costs of a gluten-free diet, that additional gluten-free grains be allowed, and that there be increased flexibility in package sizes and substitution options to accommodate gluten-free products which don’t conform to more standard package sizes.
These advocacy actions are essential to our mission to accelerate diagnosis, treatments, and a cure for celiac disease. As always, we are grateful for your continued support and engagement in our efforts. It is your sustained generosity that makes our work possible.
To learn more about these advocacy activities or any of our work, please reach out to me directly at [email protected]. Together, we are making a difference for the millions of people living with celiac disease.
To Our Health,
Marilyn G. Geller
Chief Executive Officer