Summary of the 2021 Patient Education & Advocacy Summit

For the second consecutive year, the Celiac Disease Foundation hosted the Patient Education & Advocacy Summit, with a primary goal of training a new cadre of Celiac Disease Foundation State Advocacy Ambassadors to engage patients and legislators from their communities in the struggle to accelerate research for treatments and a cure. The Summit was made possible by an engagement award from the Patient Centered Outcomes Research Institute, known as PCORI. Celiac Disease Foundation CEO, Marilyn Geller, said, “Celiac disease afflicts millions of Americans, most of whom are undiagnosed, and is second only to end-stage renal disease in perceived burden by patients and caregivers. Despite these appalling facts, the federal government has never been a major funder of celiac disease research. As a direct consequence, celiac disease is the most prevalent autoimmune disease with no FDA-approved treatments.”

One of the most puzzling questions about celiac disease is: why is it becoming more common? Edwin Liu, MD, Director of the Colorado Center for Celiac Disease, Aurora, suggested some possibilities, but essentially the answer remains unknown. Large population studies are necessary, such as The Environmental Determinants of Diabetes in the Young (TEDDY), which also collects data on celiac disease. There is no single factor that causes celiac disease. However, the most significant ones are: genetics, family history, being female, country of birth, early diet (new data suggests introducing moderate amounts of gluten with solid food may reduce a child’s risk of developing celiac disease later), and early childhood gastrointestinal infections.

This discussion began with presentations by drug researchers about why patient involvement is so crucial. Jennifer Voyksner, a celiac disease patient, is Co-founder and Chief Scientific Officer of ImmunogenX, which is testing latiglutenase. ImmunogenX is also developing a series of tools for the management of celiac disease post-diagnosis. “Currently, government funding for celiac disease research is the lowest of all the GI diseases,” said Voyksner. “This is something we have to change, and something worth advocating for.”

Francisco Leon, MD, PhD, Chief Scientific Officer and Co-founder of Provention Bio, explained, “We need to have dozens of drugs in development in order for one to make it through to the end line. We need investors to contribute as much as $1 billion for each drug that will make it to market because of the high degree of failure.”

Joseph Murray, MD, Professor of Medicine at Mayo Clinic, Rochester, Minnesota, reported how one individual can change the course of celiac disease research. He called the 1990s a “scientific desert for celiac disease.” Murray continued to explain that “there hasn’t been a large cadre of new people who are involved, engaged, enthusiastic scientifically about celiac disease. There are a few standout people, but not enough to replace those of us who’ve been doing this for a long time.”

Ritu Verma, MD, Medical Director of the University of Chicago Celiac Disease Center, highlighted acts of legislation that will be reintroduced in the new Congress this spring. The Gluten in Medicine Disclosure Act would require drug manufacturers to label prescription medications if gluten is present. This legislation would allow celiac disease patients to easily determine if their medication is safe for consumption.

Vanessa Weisbrod, Director, Boston Children’s Hospital Celiac Disease Program, spoke about advocating for celiac disease accommodations in learning environments. “Lots of kids and teens don’t always follow a strict gluten-free diet. Most often, these transgressions happen when they’re eating meals with their peers,” along with other activities where cross-contact can occur, she said. The Americans with Disabilities Act of 1990 defines a disability as “a physical or mental impairment that substantially limits one or more major life activities.” Celiac disease is covered under this Act because it impacts eating and digestion. The Rehabilitation Act of 1973 prohibits discrimination based on celiac disease by institutions that receive public funding, including public schools or private schools that receive such funding. Their programs must meet the needs of students with celiac disease, or any disability, in the same way they meet the needs of other children.

The State Advocacy Ambassador Training taught Summit attendees how to engage with their legislators and activate their networks to drive successful policy campaigns in their home states. New State Advocacy Ambassadors learned how to share their own celiac disease stories to support celiac community Policy Priorities, and were given Leave Behinds and Legislative Resources to support their advocacy activities. Those who completed the training joined the iAdvocate Forum to collaborate with other State Advocacy Ambassadors, share strategies, and engage around the Foundation’s advocacy goals in Congress for 2021: NIH funding for celiac disease research, and including celiac disease in the Congressionally Directed Medical Research Programs (CDMRP).

The Celiac Disease Foundation Patient Education & Advocacy Summit was made possible by a PCORI Engagement Award and sponsorship from Provention Bio, 9 Meters Biopharma, Takeda, Glutenostics, Kanyos Bio, ImmunogenX, Schär, Cabinet Health, and Labcorp.