Public policy And Parkinson’s disease

1. Public policy And Parkinson’s disease Supporting the PD Community through Advocacy

2. What ARE Public policy and advocacy? Public Policy: • The laws that govern national, state and local decision making on a given topic. • They can take the form of bills, mandates, regulations and rulings. • Co-created by many different stakeholders: elected officials, federal agencies, the courts. Advocacy: • Activities that aim to influence policy through avenues such as education, lobbying or relationship building.

3. Public policy and advocacy are key to meeting patients’ needs Wide-ranging government policies and programs directly affect Parkinson’s disease (PD) research and care. • The National Institutes of Health (NIH) is the world’s largest public funder of Parkinson’s research (estimated $152 million in FY 2016). • The Department of Defense Parkinson’s Research Program is the only federal government research program specifically dedicated to PD. • The Food and Drug Administration (FDA) regulates new Parkinson’s drugs and medical devices to ensure they’re safe and effective. • Programs such as Medicare, Medicaid and Social Security can increase access to health care and support services. As a U.S. taxpayer you are funding these institutions and programs.

4. priority areas for Parkinson’s policy Work Support Drug Development and Approvals Safeguard Access to Care and Support Further Parkinson’s Disease Research

5. Further Parkinson’s disease research • STRENGTHEN funding at the National Institutes of Health to advance scientific breakthroughs. • EDUCATEpolicymakers on the importance of pushing innovation forward through bills such as the 21st Century Cures Act. • SUPPORT the Department of Defense Parkinson’s Research Program to better understand environmental triggers of PD.

6. Support drug development and approvals • AMPLIFYthe patient voice so drug developers understand priorities and areas of unmet need. • COLLABORATEwith FDA to develop regulatory pathways and include patient perspectives in the drug approval process. • ENSURE patient needs are taken into account in drug pricing.

7. safeguard access to care and support services • PROTECTMedicare health insurance programs. • BOLSTER government benefits (e.g., Social Security Disability Insurance). • EXPANDemerging technologies that can increase access to specialized care and support.

8. advocacy drives change You can represent patient interests. • Share your story with lawmakers to highlight research and care needs. • Contact policymakers to voice opposition or support for specific bills. • Educate others on Parkinson’s and public policy at support group meetings and local events.

9. As the world’s largest nonprofit funder of PD research, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease and ensuring the development of improved therapies for those living with PD today. Vital Stats Founded in 2000 by actor Michael J. Fox No chapters: team of 100 based in NYC Policy and research UNITE atThe Michael j. fox foundation Over $650 million in research funded to date 89 cents of every dollar spent goes to grants and initiatives to speed a cure. MJFF works with scientists, drug makers, insurers, regulators and policymakers to help them understand patient priorities and unmet needs. These stakeholders must fully comprehend the impacts of PD as they make decisions about drug development, approvals, coverage of therapies and access to support services. Mission

10. What to do next • Speak up: Contact your elected officials to make your voice heard. • Visit michaeljfox.org/congress to take action now • Sign up to receive action alerts at michaeljfox.org/act • Stay informed: Learn about thelatest developments in public policy. • MJFF blog: blog.michaeljfox.org • Facebook: facebook.com/michaeljfoxfoundation • Twitter: @michaeljfoxorg