I want to share with you an update of our work in Washington, DC with Congress and NIH to accelerate research for diagnostics, treatments, and a cure for celiac disease.
As many of you know, that due to our advocacy efforts, the FY2020 Federal Budget included language directing the National Institutes of Health (NIH) to study celiac disease. The House has now passed and sent to the Senate the FY2021 Appropriations bill and included again in its report language about celiac disease that concludes as follows:
“The Committee urges NIAID [National Institute of Allergy and Infectious Diseases] to support new research and to better coordinate existing research with NIDDK [National Institute of Diabetes and Digestive and Kidney Diseases] and the other Institutes and Centers. The Committee requests that NIAID report back in the fiscal year 2022 Congressional Justification on the progress made towards promoting, recruiting, and supporting additional celiac-focused research.”
Our advocates on the Senate side have informed us that they will be seeking to include similar language in their legislation. That said, however, it seems unlikely that a FY2021 Appropriations bill will advance out of this Congress before the November election, and even then possibly not until the next Congress is seated in January. A catch-all continuing resolution to keep the government operating is the most likely funding scenario. NIH is aware, however, that Congress wants action on celiac disease.
NIAID is the Institute within NIH that is the lead on coronavirus research. (We pushed to make NIAID the lead on celiac disease because celiac disease is an autoimmune disease, not a digestive disorder as it was originally classified, and autoimmune disease research is located in NIAID.) We are not surprised, therefore, that NIAID has not formally reported back to Congress on celiac disease research as requested in the FY2020 Federal Budget. Nonetheless, we know from our meetings and periodic conversations with NIAID staff that they are making progress on multiple and critical fronts to coordinate a pan-Institutional response to “promoting, recruiting, and supporting additional celiac-focused research.”
Prior to the FY2020 celiac disease report language from Congress, NIDDK was the NIH unit that was most responsible for the rather minimal celiac disease research that emanated from NIH. We met with NIDDK early this year at their headquarters and we were pleased with how responsive they were to our concerns about research funding. Recently, NIDDK issued a Request for Information (RFI) to the research and patient advocacy community as it embarks on a strategic planning process that is critical to setting its research agenda for the next decade. We were invited to participate in this process. In collaboration with the Society for the Study of Celiac Disease (SSCD) last Friday we submitted our answers to their questions based upon our March SSCD Consensus Workshop on Celiac Disease and May NIH Autoimmune Disease Coordinating Committee presentations. You can read our response here.
Currently, every corner of the Washington, DC health bureaucracy is consumed by the response to the pandemic. I have faith that researchers will develop treatments and a vaccine for COVID-19. But even during the pandemic, the suffering from celiac disease of millions of patients around the world does not stop. Through the launch of our new patient advocacy portal, iAdvocate, on celiac.org, we continue to organize and mobilize our patient community to compel the federal health community to take celiac disease seriously. With our work with Congress and NIH, we continue to make the case that celiac patients are as deserving of federal investments in research as are patients of other serious diseases. As we look forward to an end to this pandemic, we look forward to the day when celiac disease is readily diagnosed and patients are provided with safe and effective treatment options.
Thank you for your continued support of our efforts.
To Our Health,
Marilyn G. Geller