On April 9, 2019, Marilyn Geller, CEO, Celiac Disease Foundation (CDF), testified on the incidence, prevalence and treatment burden of Celiac Disease to the U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. In riveting testimony, Ms. Geller described how Celiac Disease is a serious auto-immune disease that afflicts 3 million Americans, including her son, Henry.
“In Celiac Disease patients, gluten, a protein found in wheat, barley and rye, triggers an immune response leading the body to attack the small intestine. This intestinal damage causes more than 200 debilitating symptoms. Moreover, gluten ingestion for people with Celiac Disease causes permanent immunological scarring, doubles the risk of heart disease, and acts as a carcinogen, quadrupling the risk of small intestinal cancers.”
Moreover, Ms. Geller addressed the historic underfunding of Celiac Disease research by the National Institutes of Health (NIH) to the Congressional appropriators.
“I traveled here today because we need Celiac Disease to be recognized as an important threat to the health of our citizens by the US government, including and especially by the NIH, the FDA, the CDC, and CMS. Celiac Disease research receives virtually no investment from the private sector, and little to no resources from NIH, especially when compared to diseases with similar impact.”
In preparation for Ms. Geller’s testimony, the Celiac Disease Foundation received more than 750 personal stories from members of the Celiac Disease community on why Congress must address Celiac Disease with the urgency and funding it deserves. We echo the testimony of Ms. Geller when she so eloquently stated,
“If I leave you with one message today, it is that Celiac Disease is, in fact, a serious autoimmune disease that is not being taken seriously enough by our government.”
Following Ms. Geller’s compelling testimony to the House Appropriations Committee, it was heartening to hear feedback feedback from Congresswoman Rosa DeLauro, Chairwoman, House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, that Celiac Disease research has to be taken more seriously. Take note of Congresswoman DeLauro’s remarks on Celiac Disease on the video (from the 3:11:39 time stamp to 3:13:00) including where Representative DeLauro concurred with Geller that Celiac Disease and funding for research is not taken seriously enough.
Historical Background
According to Allison Herwitt, Co-Chair, Legislative Project, American Celiac Task Force, Americans with Celiac Disease testified before a Congressional Committee for the first time on April 27, 2004.
"Lisa Murphy, and her son, Colin, represented the ACTF before the House Appropriations Subcommittee on Labor, HHS, and Education. They did an outstanding job outlining what celiac disease is, who it affects, the need for NIDDK to develop a research plan for celiac disease, as well as the need for greater physician and patient education (The Murphy family, of Chappaqua, NY, was featured in a Feb. 2004 Parents magazine article about Celiac Disease). The Labor-HHS Subcommittee determines how much money NIH receives each year. Having individuals with Celiac Disease provide information about the disease is critical to securing funding for research. After hearing the testimony, Subcommittee Chairman, Ralph Regula (R-OH), asked if food labels were a problem for Celiacs. Not missing a beat, Lisa offered an emphatic, Yes, then highlighted problems she has encountered. Rep. Nita Lowey (D-NY), sponsor of H.R. 3684, the Food Allergen Labeling and Consumer Protection Act, and member of the Subcommittee, explained the bill was drafted to help individuals like Lisa, and Colin. The celiac community has waited a very long time for this incredible opportunity."
House Appropriations Bill Report
In May 2019, as a result of the advocacy of many including the Murphy family, Ms. Geller and CDF Policy Adviser, Ben Nicholson, the U.S. House Appropriations Subcommittee on Labor, Health and Human Services approved report language in the FY 2020 House Appropriations Bill Report (page 91). To that end, on December 19, 2019, President Donald J. Trump signed into law the FY2020 Federal Budget Resolution which included a historic first for Celiac Disease with this 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 [by March 20, 2020] after enactment of this Act.” (emphasis added)
The NIH appropriations bill language report language represented a critical turning point in the history of Celiac Disease research and funding thereof. Historically, it was the first time that Celiac Disease has ever been specifically noted in an NIH appropriations bill.
As of the one year anniversary of Ms. Geller’s testimony, the Celiac Disease community is eagerly awaiting reading the NIH report to the House Appropriations Subcommittee on Celiac Disease research and funding.
Inspiring Others
Ms. Geller’s testimony has helped to inspire many including us to lobby Congress on funding for Celiac Disease research. To that end, on January 14, 2020, Jon and Leslie Bari spoke at a Congressional Briefing hosted by Congressman Dwight Evans and Congressman John Joyce, M.D. on “Securing Significant Federal Funding for Celiac Disease Research.” At the Congressional Briefing, I presented a summary of our historical and strategic economics analysis of the Celiac ecosystem with respect to research.
To keep track of what the Celiac Disease Foundation has been doing on public policy and advocacy, please click here for CDF Advocacy News.
On March 20, 2020, Ms. Geller wrote the following to update the Celiac Disease community,
"Today, even in the midst of our COVID-19 pandemic crisis, Celiac Disease patients need treatments and a cure. The COVID-19 pandemic, as terrible and as disruptive as it is, must eventually pass. When it does, Celiac Disease patients will still be in need of treatments and a cure. The Celiac Disease Foundation must, therefore, persist in our work: funding disease research and advocating on Capitol Hill and at the National Institutes of Health (NIH) for increased investments in disease research and improved diagnostics. There are 3 million Americans who are counting on us to persevere and to be successful, even under these horrific circumstances. And we are. That is our mission. It has not changed."
Today as we are practicing social distancing, we must take stock in all that has been accomplished over the past year, and moreover all that still needs to happen going forward to find treatment options and a cure for the 3 million Americans who suffer from Celiac Disease, including Ms. Geller’s son and my 7 year old son, Jax.
Celiac is a Disease, not a Diet!
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