Crohn's & Colitis Foundation of America Preparing for successful recess visits with members of Congress Sarah Buchanan Director of Advocacy Monday, July 25, 2016

Goals of Webinar Why August? CCFA legislative priorities Review how to conduct a legislative meeting

August Recess The U.S. House and Senate will be in recess in August to: Return home Meet with constituents Campaign

In-District Meetings are IMPORTANT Maintain relationships with your legislators Advocate for bills that will pass in the fall/winter Annual spending (appropriations) Reiterate other ‘asks’ – Crohn’s & Colitis Caucus Volunteers are critical to gaining lawmakers’ support for funding and legislation to improve outcomes for IBD patients

Goals of Webinar Why August? CCFA 2016 legislative priorities Review how to conduct a legislative meeting

CCFA Online Resources

2016 Legislative Priorities 1.Join the Congressional Crohn’s & Colitis Caucus 2.Co-sponsor HR 1600, The Patients’ Access to Treatments Act 3.Support medical research on IBD in fiscal year 2017 (FY17)

Congressional Crohn’s & Colitis Caucus Reps. Ander Crenshaw (R-FL) and Nita Lowey (D-NY) 72 Members Join the Congressional Crohn’s and Colitis Caucus

Medical Research Appropriations Annual process CCFA asked for: $1 million for the CDC IBD Epidemiology Program $34.5 billion for NIH and $2.165 billion for NIDDK Include ‘IBD’ in the DOD Peer-Reviewed Medical Research Program Jan- Mar Mar- Jul Aug Sept- Oct

Federally Funded IBD Research Centers for Disease Control and Prevention Public health agency IBD Program Ocean State Crohn’s and Colitis Area Registry (Rhode Island) Epidemiology and impact of treatment variations

Federally Funded IBD Research National Institutes of Health Largest biomedical research agency in the world $128 million on IBD research in FY15 National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Leads the NIH research portfolio on IBD

Federally Funded IBD Research Department of Defense Peer-Reviewed Medical Research Program Supports research into conditions that affect military personnel and veterans If included as a ‘condition eligible for study,’ researchers can compete for grants IBD researchers compete successfully every year

Medical Research Appropriations Congress proposed: $750,000 for the CDC IBD Epidemiology Program (level funded) $ billion for NIH and $2.041 billion for NIDDK (+$2B increase for NIH) Include ‘IBD’ in the DOD Peer-Reviewed Medical Research Program Jan- Mar Mar- Jul Aug Sept- Oct

August ‘Asks’ Join the Congressional Crohn’s & Colitis Caucus Include the higher funding levels for medical research in fiscal year 2017 – see CCFA letter in handouts

Schedule a Legislative Meeting Contact the office of the member of Congress Ask to speak to the scheduler Request an in-district meeting in August Be prepared to give the names of other attendees if applicable

Prepare for the Meeting Coordinate talking points with colleagues Bring handouts (located in Visit Your Legislator):Visit Your Legislator 1.CCFA Federal Priorities one-pager 2.Crohn’s & Colitis Caucus one-pager 3.CCFA letter regarding FY17 funding for research Bring camera

Crafting Your Message Tell Your Story 1.Thank staff/legislator 2.Identify yourself - CCFA volunteer, constituent 3.Let them know your ‘ask’ 4.Describe IBD 5.Tell your story 6.Close – restate ‘ask,’ thank again, request updates

Follow Up

Thank You Questions?