As I return to Los Angeles, I would like to take a moment to share with you some of the highlights of our productive two days in Washington, DC. Your consistent support has allowed us to reach this tipping point, and I want to be clear about what your gifts of time, money, and advocacy are making possible for the celiac community.
As many of you are aware, we have retained the advocacy firm Baker Donelson, a highly respected firm in Washington, DC, to complement the work of Ben Nicholson, our DC-based policy advisor, to navigate the federal health care system so that our government will begin to take celiac disease as seriously as it does other diseases.
On Wednesday, December 11, we met separately with Representatives Tim Ryan (D-OH) and Tom Cole (R-OK), the lead cosponsors of the Gluten in Medicine Disclosure Act. The bill now has 46 cosponsors in the House, thanks in part to our community sending 23,000 letters to their Congressional Representatives demanding action. We thanked the Representatives for their leadership on this issue and for their support during the coming FY2021 appropriations process for continued NIH funding for celiac disease research. We also met with Senator Blumenthal’s legislative aide on health care one hour before he introduced the Gluten in Medicine Disclosure Act to the Senate. We discussed a multipronged strategy to generate targeted constituent support to advance the bill in the Senate that we will be executing in the coming weeks, in addition to his support in the FY2021 NIH appropriations process.
Yesterday, Thursday December 12, we met with a legislative aide from Representative Betty McCollum’s office (D-MN). Rep. McCollum has celiac disease. Rep. McCollum’s office had arranged a meeting earlier in the month between our team and the leadership at NIH’s National Institute for Allergies and Infectious Disease (NIAID), the NIH unit that is tasked in the House Appropriations bill to create a plan for celiac disease research. Rep. McCollum’s office agreed to follow up with the Appropriations committee to monitor the progress of the report language in the House/Senate budget conference, and to work with us to advance legislation for FY2021 to commit the Centers for Medicare and Medicaid Services (CMS) to pay for dietitian visits for celiac patients. Rep. McCollum’s office will also be working with us to insure FY2021 NIH appropriations for celiac disease research.
My final stop in DC was a seminal meeting with the NIH NIAID leadership team. This meeting was extremely beneficial in helping us to understand their commitment to researching celiac disease, the extent of current research funded by NIH, and both near-term and long-term opportunities to increase funding for celiac disease research. We presented an overview of research priorities that we gathered from some of the leading celiac disease researchers, as well as from patients and caregivers. (I want to thank Dr. Bana Jabri of the University of Chicago for her thoughtful leadership in surveying the researchers and condensing the results for our presentation.) We also discussed, per the House and Senate report language, the need for a first-ever NIH strategic plan to focus celiac disease research towards treatments and a cure. The NIAID team patiently explained how that process might work, especially given the lack of relative in-house expertise on celiac disease. Finally, the team at NIAID stressed the imperative for multi-institute NIH cooperation around celiac disease research beginning with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), where most of the NIH’s celiac disease research is currently funded. (Note that though celiac disease is an autoimmune disease, thus the NIAID connection, it damages the digestive system, thus the historic relationship with NIDDK).
I hope you share my deep enthusiasm of how far we have come in the recognition of the seriousness of celiac disease. We have a long list of next steps that we will be working on over the next several weeks with members of Congress, with the NIH, and most importantly, with you. While I still have your attention, please remember that we are in the midst of our annual Gift of Hope Challenge. All tax-deductible gifts will be matched by our Board of Directors during this Challenge, doubling your impact.
Our strategic plan calls for the Celiac Disease Foundation to accelerate research for diagnosis, treatments, and a cure for celiac disease. Advocacy in Washington, DC, is a critical element of that plan, and this year, beginning with my testimony in front of the Appropriations subcommittee for NIH research funding, we are finally beginning to get the traction we need. Your Gift of Hope, truly is.
Wishing you a happy and healthy 2020,
Marilyn G. Geller
Chief Executive