DIGESTIVE DISEASE COALITION PUBLIC POLICY FORUM

The WOCN Society was represented at the DDNC Forum by Kate Lawrence, MSN,RN,CWOCN, WOCNF and Chris Rorick, WOCN Policy Advisor. The Digestive Disease Coalition (DDNC) has been hosting the Policy forum for over 30 years. The meeting occurred March 1-2, 2026. Over thirty-two attendees represented numerous organizations that comprise the DDNC with focus on digestive diseases and diseases that affect the digestive system.

The Forum met on Sunday for presentations regarding elements of the DDNC Public Policy agenda for 2026. The kickoff presentation was by patient advocates representing various concerns. David Scali a young man who has superior mesenteric artery syndrome who brought forward the need for increased research funding for rare diseases, support for legislation that will stop step therapy and decrease insurance delay and preauthorization barriers. Crystal Killian who has mitochondrial myopathy focused on access to NP and pharmacists who can write prescriptions for parental nutrition, rare disease education for insurers, and concerns about payment gaps in insurance for enteral nutrition and meds to sustain life. Stephanie Wynn diagnosed with IBD (Stephanie Wynn Foundation) focused on the issues of gaps in care, and issues of underinsurance in underserved communities related to GI disease.

The rest of the afternoon was occupied by speakers who presented in more detail the following subjects as well as some policy information details.

Funding Requests:

  • NIH funding: NIH was left intact however many senior administrators have gone via retirement or been eliminated. There needs to be guardrails to ensure forward funding as 50% of the requests for funding were not awarded. There is work being done to address the issue of Indirect cost for research by the research and institutional community. 2027 51.3 billion being requested overall for NIH and increases of funding for National Ca Institute, National Institute Diabetes and Digestive and Kidney Disease (NNIDDK) as well as the Office of the Director of Nutritional Research activities.
  • Funding in 2027 11.6 billion for CDC proportional increases for National Center of Chronic Disease Prevention and Health Promotion, Colorectal Cancer Prevention program, Division of Viral Hepatitis, and IBD program as well as Chronic Disease, Education and Awareness program.
  • Increase in VA Medical and Prosthetic Research program which supports a 100-year-old research history with 1,200 facilities and over 4,000 researchers 60% who are engaged in also providing clinical care.
  • Continued support of DoD research programs that support numerous cancer centered research, Gulf war illness, Food allergies, Hep B, Pancreatitis, and IBD.

Legislative and Public Policy Priorities:

  • Safe Step Act (HR5509/S2903) guidelines for step therapy protocols to eliminate delays in treatment and decrease patient out of pocket costs and allow healthcare providers to proceed with clinical decision making.
  • Help Copays Act (HR6423/S864) requires health plans to count the value of copay toward patient cost sharing requirements.
  • Treat and Reduce Obesity Act (HR 4231/ S1973) Coverage under Medicare drugs used for treatment of obesity and weight loss for those overweight and improving access to behavioral therapy.
  • Medical Nutrition therapy Act (HR6199) Extends access to dieticians for a wider array of disease states and broadens who can write referrals to dieticians.
  • Medical Food and Formula Access Act (HR 5684/S 3304) require Medicare and Medicaid to cover medically needed foods and vitamins that are prescribed for individuals with GI and metabolic conditions.
  • Liver Illness visibility, education, and research No bill has dropped yet.
  • Food Labeling Modernization Act strengthens label requirements too include food allergens.
  • Competitive Bidding (CB)
  • Colorectal Screening to include bowel prep in all forms to coverage by Medicare related to colorectal cancer screening. Currently only pays for large liter prep which is a barrier to the population who qualify for screening.

Kate participated in a brief video snippet with a panel of UOAA representatives and Megan Miller WOC nurse from Florida which focused on the issue of CB from the patient and clinician perspective. This was a UOAA initiative and part of the UOAA campaign opposed to CB.

Monday’s events were focused on hill visits. Participants were divided into groups by states, each group had a seasoned policy person in attendance. The group that WOCN was assigned was Vermont and Massachusetts. Participants were encouraged to discuss the concerns that resonated with the participants. The focus of the Hill visits for the Vermont/MA group was NIH funding, Safe Step Act, Competitive Bidding, and Colorectal Screening. 3 Vermont offices and 4 Massachusetts offices were visited on the House and Senate side. Short, prepared asks were shared with the Healthcare staff in each office. Follow up Thanks and review of issues were to be sent to each office by participants.