After decades of pleading with our federal government to take celiac disease as seriously as it does other diseases with comparable patient impact, yesterday, the U.S. House and Senate each passed, and President Trump has signed, the FY2020 Federal budget resolution that includes the following language:
Celiac Disease.—The agreement encourages NIH to devote sufficient, focused research to the study of celiac disease, including the autoimmune causation underpinning the affliction. The agreement urges NIAID to better coordinate existing research and focus new research efforts toward causation and, ultimately, a cure of this disease. NIAID is encouraged to coordinate with other Institutes and Centers as appropriate and to submit its plan for coordination and execution of this research to the Committees no later than 90 days after enactment of this Act.
This is a monumental victory for the celiac disease patient community! Again and again, we hear from the academic and private sector research community that NIH’s “sufficient focused research” in celiac disease research is critically important if we are to achieve our overarching goals of FDA-approved treatments and a cure.
As I noted in my Advocacy Update, we had a productive meeting with leadership at NIAID (arranged by Representative Betty McCollum’s office) last week to begin discussions around NIAID’s new role as a coordinator of celiac disease research at NIH. This will begin with a strategic planning process with the end result being the report demanded by Congress, but also includes opportunities for more immediate research grants.
While we have won a significant battle in Washington, victory in the fight to defeat celiac disease demands that we sustain our advocacy work. As the NIAID leadership noted, the NIH is a huge bureaucracy that takes time and skill to navigate and organize. We are committed to devoting whatever resources required to move the federal government towards our objective.
If you haven’t already, please make a tax-deductible donation to our annual Gift of Hope Challenge Match. We need you with us in this fight.
Wishing you the happiest and healthiest New Year,
Marilyn G. Geller