Outside Witness Testimony – Fiscal Year 2020 Appropriations

Prepared By Marilyn G. Geller, CEO, Celiac Disease Foundation

Prepared for the Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Committee on Appropriations

United States Senate

June 3, 2019

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Chairman Blunt, Ranking Member Murray, and distinguished Members of the Subcommittee, thank you for the opportunity to provide written testimony. Below is the oral testimony I provided to the House Appropriations Committee Subcommittee on Labor, Health and Human Services, Education, and Related Agencies on April 9, 2019.

“My name is Marilyn Geller and I am the Chief Executive Officer of the Celiac Disease Foundation – an organization devoted to finding the cure for celiac disease.

 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.

Celiac disease is one of the world’s most common genetic autoimmune diseases. Approximately 40% of us carry the genetic marker and about 1% of us actually develop celiac disease. Yet, this is nearly double the number of people with Crohn’s disease and ulcerative colitis combined, and nearly triple the number of those with Type 1 Diabetes.

And, regrettably, researchers are finding that the disease prevalence is doubling approximately every 15 years, making it a public health epidemic.

It is estimated that only 20% of the 3 million Americans with celiac disease have been correctly diagnosed. The other 2.4 million continue to suffer and have no idea why. 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.

My son Henry is why I am sitting before you today. Henry was ill from birth and was suffering for reasons the best specialists in Los Angeles could not determine. He suffered from unbearable pain, can’t-get-out-of-bed fatigue, endless stomachaches, headaches, medications, medical procedures, and at the lowest point, in middle school, would say to me, “Mommy my brain is telling me to kill myself again, and I don’t want to, please help me.” It was a fifteen-year ordeal until a doctor finally ordered a blood test for celiac disease. From that point on, it’s been personal for me.

Strict adherence to a gluten-free diet is the only available treatment. But, as our celiac disease researchers agree, “there is no such thing as a gluten-FREE diet” because of the constant risk of cross-contact with gluten, and gluten is in 80% of our foodstuffs.

  • And, in our medications – an issue that Ranking Member Cole and Congressman Tim Ryan are working with us to combat.
  • Thank you, Congressman Cole… your leadership on this issue means so much to our work.

In closing, 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.
  • This gap is something Leslie Williams, Founder and CEO of ImmusanT and leader in celiac disease research knows all too well. She states:

“Sadly, Marilyn’s story is all too common. Drug development is built on a foundation of basic science, and without public funding of basic research, drug development is severely hindered. Moreover, public funding is perceived as indicative of unmet need and the seriousness of a disease. Without the attention that comes with public finding, private funding can be scarce – we have lived this. The paucity of funding for celiac research is shocking especially when comparing it to other conditions that are much less common, arguably less severe AND have available treatments. Moreover, celiac research and treatment has the potential to guide understanding and improve therapies for other autoimmune conditions. Public funding is needed to support celiac research; private funding will follow in a more substantial way.”

Let me reiterate the seriousness of this disease.

  • The lifetime burden of the gluten-free diet is perceived by patients to be second only to end-stage renal disease, and by caregivers, comparable to caring for a patient with cancer.
  • Our diagnosed patients report that they miss, on average, 23 days of work and school annually, resulting in excess utilization of our healthcare resources.
  • Despite what you might see in popular media, celiac disease is not a fad. It is not a punchline. Americans are dying because we haven’t paid sufficient attention to this disease.

Thank you for your time today and thank you for anything this distinguished Subcommittee can do to assist us in this fight to end this serious disease.”

As a result of my testimony, the following was included in the House Committee on Appropriations Report:

Celiac Disease. The Committee encourages NIH to devote sufficient, focused research to the study of Celiac disease, including the autoimmune causation underpinning the affliction. Today, the only known treatment for this disease is a gluten-free diet; but, recent public and private sector research has revealed that such a “treatment” is insufficient for many who suffer from Celiac disease. Therefore, the Committee urges NIAID to support new research 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 Committee on Appropriations no later than 90 days after enactment of this Act.

I respectfully request that this distinguished Subcommittee include the same or similar language in its Report. On behalf of the 3 million Americans afflicted with celiac disease, their loved ones, employers, co-workers, teachers, and fellow students, I thank you for your efforts to combat this serious, and potentially treatable, autoimmune disease.

For additional information, please contact:

Julia McBeth
Director of Research and Advocacy
Celiac Disease Foundation
20350 Ventura Boulevard, Suite 240
Woodland Hills, CA 91364
julia.mcbeth@celiac.org
818.716.1513, x101

June 2019 Senate Testimony By CEO Marilyn G. Geller