Beyond Celiac Provides Testimony to U.S. House of Representatives

April 5, 2019

The Honorable Rosa DeLauro, Chairwoman
The Honorable Tom Cole, Ranking Member
Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education and Related Agencies
U.S. House of Representatives
H-307 The Capitol
Washington, DC 20515

FY 2020 Written Testimony for the Record

Submitted by:

Alice Bast, CEO                                                      Marie E. Robert, MD
Beyond Celiac                                                         Beyond Celiac

A non-profit patient advocacy organization whose mission is to unite with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure for celiac disease.

Celiac disease impacts an estimated 3.2 million Americans as well as their families and social support networks.  It is a serious autoimmune disorder, a fact which is often misunderstood.  Left undiagnosed or unmanaged, celiac disease can lead over time to lymphoma or other cancers, an impaired immune system, additional autoimmune problems and a range of life-threatening medical conditions.  Adequate NIH funding is imperative as a means to address this important public health issue.

Because celiac disease – which is triggered by the ingestion of gluten in affected patients – is hereditary, many members and generations of the same family may show signs of gluten intolerance.  For celiac disease patients, eating gluten creates an immune reaction in their bodies that damages the small intestine and interferes with the absorption of nutrients from food, leading to unintentional malnutrition. Today there is no medical treatment, and no cure. Currently the only way to manage the high daily burdens of the disease and to minimize health risks is to initiate a life-long regimen of a strict gluten-free diet. For the tens of thousands of children affected – as well as for minority and lower-income families – this restriction can be especially difficult.  For all celiac disease patients, finding food that is safe when traveling, eating out, eating at school or work or in other common circumstances is a significant challenge. For those with nonresponsive or refractory celiac disease, even perfection in diet maintenance will not restrain the disease. The diet is not enough.

Millions of Americans are facing serious, long-term health risks because of their celiac disease, and research funding levels and focus are woefully inadequate to address this significant healthcare issue.  Patients need reliable treatments and a cure for celiac disease, progress that is only possible through a national commitment to the effort.

That commitment starts with appropriate NIH funding levels.  In a fall 2017 article in the renowned medical journal Gastroenterology, authors Emma Clerx, Sonia Kupfer and Daniel Leffler found that “NIH funding of GI diseases is not proportional to disease prevalence or mortality.”  They noted in particular that celiac disease “is underfunded in comparison with other diseases, especially when the prevalence, burden and available treatment options are considered.”

Why is underfunding for celiac disease research an ongoing problem? First, diagnosis rates (and overall awareness of the disease) are disturbingly low. An estimated 80% of people with celiac disease remain undiagnosed, partly because the symptoms of celiac disease cover such a broad spectrum. While an autoimmune reaction to gluten is the same for everyone with celiac disease, the symptoms can vary widely. Some patients show limited or no GI symptoms, while others have severe GI reactions.  Some patients demonstrate mental issues, fatigue, skin rashes, reproductive health problems or other complications. Because celiac disease presents in so many different ways, some of which mimic other conditions, misdiagnosis remains prevalent. In fact, it takes the average celiac patient 6 – 10 years to secure an accurate diagnosis.

Second, many in the medical and funding communities underestimate the severity of the disease for patients over time.  Celiac disease is a serious autoimmune condition. While we don’t fully understand the nature of the connections with other autoimmune diseases or related medical issues, those connections are there.  Patients with celiac disease may also be prone to arthritis, various cancers, liver disease, thyroid disease, Type 1 diabetes and other medical problems.

Third, those who allocate resources for research and disease management may mistakenly assume that a gluten-free diet is sufficient to counteract those adverse health outcomes. As explained above, the diet is virtually impossible to maintain, and even with perfect dietary compliance, medical complications of a serious nature still emerge over the long term for many celiac disease patients.

As a result of those three factors, fewer researchers have made career commitments to finding treatments and a cure for celiac disease.  Fewer pharmaceutical companies are working in the space as well, at least partially because health insurers and other potential payers for treatments and medications (including Medicare and Medicaid) have low awareness of the serious nature of celiac disease and its long-term costs to the American healthcare system.

Increased NIH funding and focus can begin to turn the tide for more than 3 million Americans who are looking for answers to the serious issues living with celiac disease presents.  With your funding support, we can begin to make progress.  And, along with making advances toward a treatment and cure for celiac disease, those suffering with other autoimmune conditions may benefit from that research as well.

Beyond Celiac has been working for more than 15 years to support and advocate for the needs of the celiac disease community.  Our early work was primarily in the realm of raising awareness, improving food labeling, and increasing gluten-free food availability and safety.  As a critical first step, this work provided members of the celiac disease community with the best tools available at the time to better manage their health.  Beyond Celiac also has worked to raise awareness of the disease, increase diagnosis rates and build a community of mutual support by providing the latest information on living with celiac disease and updates on scientific advancements toward treatments and a cure.  All of that work – as important as it has been – is not enough.  We are now working as a catalyst to drive research toward effective treatments and a cure.

We appreciate your taking the time to review this letter and to consider the need for additional NIH funding for the important work needed to support the health of the three million Americans living with celiac disease.  We stand ready to assist you with connections to our Scientific Advisory Council of experts or patients and patient advocates, as well as to provide whatever additional facts or resources you may need as you consider ways to support this important work.

With our sincere thanks,

Alice Bast, CEO                                                      Marie E. Robert, MD
Beyond Celiac                                                         Beyond Celiac

To learn more about the need for celiac disease research funding, see Alice Bast’s Huffington Post article, “Celiac Disease: The Underfunded, Invisible, Deadly Disease.”