2021 Patient Education & Advocacy Summit Agenda
8:30 – 9:15 PT Opening Remarks
2020 was a breakthrough year, with Congress, for the first time ever, instructing the National Institutes of Health to study celiac disease. 2021 holds even more promise in accelerating diagnosis and treatments. Hear from Congressional staff about the efforts on Capitol Hill to make celiac disease a national priority, and how patients may be engaged in these efforts.
9:25-10:10 PT Current State of Celiac Disease Diagnosis, Treatment, and Clinical Research
Once thought to be a rare childhood disease, celiac disease is now recognized as one of the world’s most common genetic autoimmune disorders. Despite this recognition, it is estimated that only about 20% of Americans with celiac disease are diagnosed and upwards of 50% of patients are still symptomatic on the gluten-free diet. Learn from Edwin Liu, MD, Director, Colorado Center for Celiac Disease, and Young Investigator Awardees Benjamin Lebwohl, MD, Columbia Celiac Disease Center, and Jocelyn Silvester, MD, PhD, Harvard Celiac Research Program, why this is, and the state of patient engagement at academic research centers.
10:20 – 11:05 PT Innovations in Drug Development for Celiac Disease
Innovative research is required to find a cure for any disease, but until recently, federal funding for celiac disease has been nonexistent, creating a shortage of resources for researchers. This session will focus on innovations in celiac disease biopharmaceutical research and the importance of federal funding. Learn about the history of celiac disease drug development from Francisco Leon, MD, PhD, of Provention Bio, why endpoints matter from Daniel Leffler, MD, of Takeda, and why patient participation is critical to finding a cure from Kristin Neff of Anokion.
11:15-Noon PT Engaging Patients as Partners in Research
In 2016, through a Patient-Centered Outcomes Research Institute (PCORI) award, the Celiac Disease Foundation launched the Patient Engagement Celiac Disease Network to meet the growing public health challenge of diagnosing and treating celiac disease by developing an educated patient/stakeholder network of individuals who can fully participate in and collaborate in celiac disease research. Join CEO Marilyn G. Geller, member of the PCORI Patient Engagement Advisory Panel, celiac disease drug developers, and our patient advocates as they discuss how to better engage patients as partners in research.
12:45-1:30 PT Engaging and Strengthening Stakeholders
The federal government is the biggest provider of medical research funding, but up until recently federal funding for celiac disease has been nonexistent. Beginning with CEO Marilyn G. Geller’s testimony before the House Appropriations Subcommittee in April of 2019, the Celiac Disease Foundation has worked to secure FY2020 and FY2021 Appropriations report language directing the NIH to devote sufficient, focused research to the study of celiac disease. Hear from Ritu Verma, MD, Director, University of Chicago Celiac Disease Center, as she discusses why support of the Medical Nutrition Therapy Act of 2020 affects newly diagnosed celiac disease patients, and those who continue to be symptomatic, who require nutritional therapy services furnished by a registered dietitian.
1:40-2:10 PT Table Discussions and Exercises
Based upon lessons learned from today’s presentations, join in small groups with our presenters to discuss specific ways in which patient engagement can move celiac disease research and advocacy forward to improve healthcare outcomes. Practice sharing your story and incorporating the Celiac Disease Foundation’s 2021 policy asks of Congress. Learn how to engage with your legislators and activate your networks to drive successful policy campaigns in your state. Provide feedback of the Patient Advocacy training program and help create a roadmap for success.
2:10-2:20 PT Closing remarks