JDRF Advocacy: Turning Type One Into Type None JESSICA ROTH Senior Director, Health Policy, JDRF.
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JDRF Advocacy: Turning Type One Into Type None JESSICA ROTH Senior Director, Health Policy, JDRF JDRF Advocacy: Advancing LifeChanging Therapies Jessica Roth Senior Director, Health Policy JDRF Advocacy Turning TypeOne to Both Research and Advocacy Critical to Driving Progress through the Pipeline As JDRF Evolves, Role of Advocacy Growing We WERE the Juvenile Diabetes Research Foundation Now We ARE JDRF Singularly focused on a cure and identified only with children Expanding reach to include adults and therapies that cure, treat and prevent T1D for all ages at all stages Focused simply on funding research Seeking to dramatically increase research we fund while influencing government, industry, and others to invest in T1D Focused mostly on basic research in an academic setting Increasing emphasis on translational research and removing obstacles at FDA and elsewhere to enable new, innovative therapies delivered to people with T1D Advocacy Raises Public Funds for R&D Funding for R&D in JDRF Priority Areas JDRF Helped Secure More Than $2 Billion in Special Diabetes Program Funds Alone Special Diabetes Program T1D Funding 1998–2015 150 150 150 150 150 150 150 150 150 150 150 150 70 70 100 30 30 30 30 30 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 Public Law 105-33 Public Law 106-554 Public Law 107-360 Public Law 110-173 Public Law 110-275 Public Law 111-309 Public Law 112-240 Public Law 113-93 JDRF Engages NIH to Ensure SDP Research Funds Used for JDRF Priority Areas (FY13) Kidney Trial $24.3 M TEDDY Prevention Study $29 M Other Causes Complications Artificial Pancreas $25.8 M Prevent/ Reverse Management Cell Human Islet Research $17.3 M Advocacy Helps Advance Regulatory Pathways Regulatory Pathways JDRF Advocacy Has Reduced Regulatory Barriers for Artificial Pancreas Result: More Reasonable Pathway for R&D Progress Advocacy Helped Advance Health Reimbursement Health Plan Coverage & Adoption JDRF CGM Campaign Achieved Health Plan Coverage and Clinical Guidelines JDRF Developing Heath Policy Strategies for All Priority T1D Therapies Artificial Pancreas Smart Insulin Encapsulation Prevention Restoration Complications Health Policy Strategic Planning Underway JDRF Goal: To ensure patient access to life-changing T1D therapies There are three central challenges to obtaining this goal: 1. Therapies must be accessible and affordable for people with T1D 2. Therapies must be attractive enough to companies that they will invest in product development 3. Therapies must meet insurers’ increasingly high demands for clinical evidence, as well as justification for cost of therapy Current Advocacy Issues Special Diabetes Program (SDP) Renewal Secure at least a one-year renewal of the SDP before the program expires this September Medicare Coverage of CGMs Build support in Congress for the Medicare CGM Access Act Appropriations for NIH & FDA Advocate for strong annual funding for each agency to advance T1D research and therapies Note: SDP is not appropriations JDRF 2015 Children’s Congress Promise to Remember Me Campaign How You Can Help! Sign up to be a JDRF advocate! Go to www.jdrf.org/action or Text Action to 53731 (JDRF1) Respond to action alerts and join in meetings with Members of Congress Encourage friends, family, co-workers and others to become advocates.