1. Mission Statement: The COPD Foundation’s mission is to prevent and cure Chronic Obstructive Pulmonary Disease (COPD) and to improve the lives of all people affected by COPD. 1 st COPD Global Patient Leadership Summit November 6, 2014 Miriam O’Day, Senior Director Public Policy

2. COPD 15 million diagnosed 14 million undiagnosed 3 rd Leading Cause of Death 2 nd Leading Cause of Disability Cost to Our Nation In 2012, annual costs of COPD $52 billion

3. COPD – Focus on Chronic Disease “COPD is a disease of survivors” Dr. David Mannino “They have done what we asked them to do”

4. Our Agenda Research Development of New Therapeutics Awareness and Diagnosis Access to Quality Care Education and Outreach

5. Founding Fathers fear giving too much power to an “Executive” The US Constitution gives citizens the RIGHT to petition the Government

6.    A System of Checks and Balances

7. Easing Air Travel with Supplemental Oxygen Pulmonary Rehabilitation a Permanent Medicare Benefit Data Collection CDC MMWR from BRFSS Supporting Awareness Activities and the Need for a National Action Plan CRAPO DURBIN LEWIS JOYCE

8. Shared Goals The US COPD Coalition has a common goal of establishing a COPD program in the Chronic Disease Division and increasing funding for research ✷ BRFSS Data Collection ✷ MMWR Article ✷ State Fact Sheets

9. LEGISLATIVE AND EXECUTIVE Focus on Unifying the Advocacy Voice Utilizes Automated Data System Increases Community Reach James P. Mara Center for Lung Disease

10. Key Principals of the Affordable Care Act “Obamacare” Expanded Coverage Prevention and Wellness Improved Quality Cost Containment

11. Health plan RISK management strategies Focus on Drugs Restrictive Formularies Benefit Design shifts cost to beneficiary Co-insurance – Specialty Tiers

12. Health plan risk management policies prior authorization, step therapy sole source contracts HARM Patients and undermine the physician-patient relationship.

13. Health Insurance Marketplaces – Grievances and Appeal Medicaid Expansion Shift Site of Service Clinical Trials – Further Advances in Regulatory Science; Special Physician Reimbursement Access to Allied Health Professionals Respiratory Therapists

14. Every day we hear from people who can’t afford the care that they need: Specialty Tiers – Beneficiary Cost Sharing Medicare Reform Alternative Payment Models Medicare – Physician and Hospital Outpatient Setting Changes to ASP+6% Because of Sequestration cuts 2% Uncertainty of Patient Assistance Programs

15. Access to Specialists Federal Funding for Medical Research Patient Engagement – Medical Research and Medical Research Agenda FDA Patient Risk Benefit Program Patient Powered Research Network

17. Oxygen Payment Reform – Restricts Patient Choice $25.8 BILLION IN SAVINGS over ten years When we can’t win What then? Education

18. C.O.P.D. Information Line Support, Education and Community Outreach 1-866-316-COPD (2673) Provides empathy and support to callers, as well as access to resources (e.g. educational materials) Provides for targeted outbound calling campaigns to support events, needs assessments and research, advocacy or other outreach needs Info Line associates are individuals with COPD and caregivers Associates work from their homes utilizing an integrated training and technology platform

19. National Action Plan Centers for Disease Control and Prevention The US Federal Public Health Agency Published 2011

20. EXECUTIVE BRANCH: COPD Shift to National Institutes of Health Request a National Action Plan Convene an Intergovernmental Workshop May 2012

21. Administration for Community Living (ACL) Assistant Secretary for Planning and Evaluation (ASPE) Centers for Disease Control and Prevention (CDC) Centers for Medicare & Medicaid Services (CMS) Environmental Protection Agency (EPA) Food and Drug Administration(FDA) Health Resources and Services Administration (HRSA) Indian Health Service (IHS) National Cancer Institute (NCI) National Center For Health Statistics (NCHS) National Institute on Aging (NIA) National Institute on Drug Abuse (NIDA) National Institute of Environmental Health Sciences (NIEHS) National Institutes of Health (NIH) Office of the Director (OD) National Heart, Lung, and Blood Institute (NHLBI, organizing) National Institute for Occupational Safety and Health (NIOSH) National Oceanic and Atmospheric Administration, (NOAA) National Science Foundation (NSF) Office of the Assistant Secretary for Health (OASH) Office of the Assistant Secretary of Defense (OASD, Health Affairs) Office of the Surgeon General U.S. Department of Veterans Affairs (VA)

22. SUPPORTING CLINICAL RESEARCH

23. Tips Steps to remember when planning a visit to an elected official:  Decide your goal(s)  Form a Team/Network or Coalition  Identify Congressional Targets  Develop a Clear Message  Make the appointment  Follow-up – Follow-up – Follow-up

24. Advocacy can turn Anger into ACTION

25. You have to be there to help make decisions!