Advocacy Priorities

Thank you for joining with thousands of other CCFA advocates across the nation who are helping us shape the policies and programs that impact people living with Inflammatory Bowel Disease (IBD).

Below are our Advocacy priorities:

Awareness

• Strengthen and engage the Crohn’s and Colitis Congressional Caucus to support CCFA priority pieces of legislation and funding. (House)

• Enhance and promote CCFA’s Crohn’s & Colitis Awareness Week. (Senate)

• Increase patient advocate legislative visits locally and in Washington DC.

Access to Care

End Use of “Specialty Tier” Classification of Medications, HR 460
Due to increasing costs, many insurance plans that cover prescription drugs have instituted a tiered payment system for medications. The tiers are often labeled ”generic,” ”preferred,” and “‘non-preferred” and each have a set cost-sharing amount. A fourth tier, known as a “specialty tier,” utilizes high patient cost-sharing for certain expensive medications. Instead of paying a fixed amount for medications, patients who receive specialty tier medications pay a percentage of the cost of the drug, resulting in skyrocketing costs for a single medication.

Research

Support IBD Research at the National Institutes of Health (NIH)
Hope for more effective treatments and a cure for inflammatory bowel diseases (IBD) lies in biomedical research sponsored by the National Institutes of Health (NIH). CCFA joins with other patient organizations and medical societies in recommending a meaningful funding increase for the NIH.  The NIH facilitates expanded basic, clinical, and genetic research for IBD. CCFA also recommends a corresponding increase for the National Institute of Diabetes and Digestive and Kidney Diseases, the leading institution for IBD research at NIH. Percentage to be determined.

Guarantee IBD Epidemiology Program at Centers for Disease Control
This program is yielding invaluable information about the prevalence of IBD in the U.S. and expanding our knowledge about the demographic characteristics of the IBD patient population.  The data derived from this study will provide the most comprehensive analysis of the etiology of IBD, why the course of illness varies among individuals, and what environmental and treatment factors may improve patient outcomes. Funding is provided through the Labor-HHS Appropriations Bill.  FY13 funding $680,000 (tentative).

Fund IBD Research at the Department of Defense (DOD)
CCFA requests that IBD be listed as a condition eligible for study under the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) in the DOD Appropriations Bill. IBD has been included as an eligible disease in previous defense appropriations bills and the PRMRP has funded IBD research proposals following favorable peer-review of IBD grant applications.  FY13 funding for the program $50 million (tentative).

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