Thanks to the tireless support of our patient community, we at the Celiac Disease Foundation are delighted to report at the beginning of this calendar year two significant milestones in our ongoing efforts to compel the federal government to treat celiac disease with the seriousness it deserves.

Department of Defense & CDMRP 

The first was shared with you in last month’s Marilyn’s Message: celiac disease is now included as part of the Department of Defense Congressionally Directed Medical Research Program (DOD-CDMRP) Peer Review Medical Research Program (PRMRP) listing. This is tremendous news, as it invites researchers to submit funding applications for their work on celiac disease to DOD – now a second valuable source of federal funding for celiac disease research.

We have already begun working with the Society for the Study of Celiac Disease (SSCD) and the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN), the organizations that represent celiac disease researchers, to educate the research community about the DOD-CDMRP to ensure the strongest possible proposals are submitted for funding review this fiscal year.

Office of Autoimmune Disease Research at the National Institutes of Health 

The second milestone to report is the inclusion of language in the omnibus federal funding bill signed on December 30 to establish an Office of Autoimmune Disease Research at the National Institutes of Health (NIH). Autoimmune disease occurs when the immune system attacks both normal and abnormal cells; celiac disease is classified as an autoimmune disease, because normal intestinal cells are attacked due to the presence of gluten in the body. The announcement of this office is a significant breakthrough for the patient community because we will now have a single office staffed with experts to prioritize and coordinate autoimmune research, including celiac disease, across multiple institutes in NIH. 

We are proud to have supported the efforts to achieve this goal, and we continue to be an active participant in conversations supporting this initiative.

Celiac Disease as a Model for Autoimmune Research 

Another critical part of our efforts is the continued work on celiac disease that we advocate for at the NIH, which has influenced the agency’s thinking on all autoimmune research. Below is a timeline as reported by NIH regarding autoimmune disease research efforts:

May 2019 – FY2020 NIH Appropriations includes report language drafted by the the Celiac Disease Foundation that directed NIH to increase focus on celiac disease research.

May 2020 – NIH’s Autoimmune Disease Coordinating Committee (ADCC) meets to review findings of the March 2020 SSCD Consensus Workshop: Research Opportunities in Celiac Disease.

March 2021 – NIH hosts the two-day Accelerating Progress in Celiac Disease Workshop to identify scientific gaps in celiac disease research. I and members of our Medical Advisory Board presented at this workshop. As a result of the workshop and additional work, a Notice of Special Interest in Celiac Disease was published in December 2021 and the first-ever Research, Condition, and Disease Categorization (RCDC) for celiac disease was created in FY2021.

April-June 2021 – Using the model created by celiac disease, ADCC leadership identifies gaps in NIH’s autoimmune portfolio. Consensus was reached on three areas: fatigue, pain, and microbiome.

March 2022 – NIAID conducted a funding survey of the three areas identified and saw that fatigue research was underfunded.

December 2022 – ADCC meets to review progress and discuss next steps on fatigue research.

Clearly, the increased focus on celiac disease at NIH, beginning in FY2020, created a framework to assess research in other autoimmune diseases. We are gratified that our efforts could help not only our celiac patient community, but also the broader autoimmune patient community.

The inclusion of celiac disease in the DOD-CDMRP and the creation of the first Office of Autoimmune Disease Research at NIH are great news for patients, as both have the potential to bring closer the day when we will have FDA-approved treatments and a cure for a disease that impacts tens of millions of Americans. This is the kind of work your support enables – and it is exciting to see the significant progress we’re making – together. 

To Our Health,

Marilyn G. Geller
Chief Executive