Summary Report
DDNC 29th Annual Public Policy Forum

March 3 – 4, 2019

The Digestive Disease National Coalition (DDNC) 29thAnnual Public Policy Forum was held on March 3rdand 4th, 2019 at the Phoenix Park Hotel in Washington, DC. Over 120 patient advocates, gastrointestinal physicians, and industry representatives attended and made approximately 100 visits on Capitol Hill to advocate for the DDNC's legislative priorities in research, patient access to care, and prevention & awareness.

Attendees heard from three panels of speakers representing federal agencies, leaders in the patient advocacy community, and industry representatives. 

The first panel was comprised of Dr. Steve James, Director of the Division of Digestive Diseases and Nutrition at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and Andrea Furia-Helms, Director of the Office of Patient Affairs at the Food and Drug Administration (FDA). Dr. James updated attendees on promising digestive disease research at the NIH, and Director Furia-Helms reviewed the role that her newly established Office of Patient Affairs plays in expanding patient engagement at the FDA. 

The second panel outlined ongoing patient access issues of concern to patients with digestive diseases. Steven Newmark from the Global Healthy Living Foundation (GHLF) gave an overview of emerging patient access issues at the federal and state level; Jim Romano from PSI discussed copay accumulator adjustment programs and charitable assistance; and Dr. Angus Worthing from the Alliance for Transparent and Affordable Prescriptions (ATAP) discussed the role of pharmacy benefit managers (PBMs) in the drug supply chain. DDNC’s last panel featured representatives from our Institutional member organizations, who updated the community on their organizations work to improve treatment for patients with digestive diseases. DDNC’s Washington Representatives, Dale Dirks and Peter Herzog, also gave a legislative update and advocacy training session to prep attendees for Monday’s Capitol Hill Advocacy Day. 

On Monday, DDNC members met with over 100 Congressional offices to advocate for increased medical research, improved access to care, and greater education and awareness for patients with digestive diseases. Advocates also shared the DDNC’s Policy Statement on Patient Access to Treatments in the Cost-Shifting Crisis, which asks Congress and the Administration to proactively address troubling cost-shifting issues that make it harder for digestive disease patients to access essential treatment. 

During DDNC’s Congressional Luncheon, attendees received an update on the administration’s efforts to improve access for patients with chronic conditions from Jim Parker, Senior Advisor to HHS Secretary Alex Azar and Director of the HHS Office of Health Care Reform. DDNC also presented several awards to digestive disease champions in Congress and leaders in the community. DDNC presented its 2019 Distinguished Public Service Award to Senator Roger Wicker for his leadership of the Removing Barriers to Colorectal Cancer Screening Act; Senator Tammy Baldwin for her leadership on gastroparesis awareness; Congressman Tim Ryan for his leadership on celiac disease legislation; and Congresswoman Jan Schakowsky for her support of patients with Inflammatory Bowel Diseases. 

DDNC also presented its Lifetime Achievement Award to Andrew Spiegel, Esq. and Kim Foley, BSN. Andrew Spiegel served as DDNC Chairperson from 2015-2016 and is the Co-Founder and Executive Director of the Global Colon Cancer Alliance. Kim Foley is the current DDNC Secretary and official representative from the Society for Gastrointestinal Nurses of America (SGNA). Kim was also the first gastrointestinal nurse to receive this award. 

Thank you to the DDNC’s Executive Committee, the Board of Directors, and to all of our attendees for helping to make this year’s Public Policy Forum a great success. We hope all DDNC members continue to advocate for its legislative priorities. DDNC will continue to fight on Capitol Hill for patients with digestive diseases, and we will update member organizations on our progress. 

29th Annual Public Policy Forum