National Coalition for Cancer Survivorship From Patient to Advocate: Your Role in Improving the United States Cancer Care System Kelsey Nepote, MSW Policy and Advocacy Manager CancerCon 2015 Saturday, April 25

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About NCCS

Survivor NCCS’ definition of a survivor, from the time diagnosis and for the balance of life. NCCS has expanded its definition to include family, friends, and caregivers.

Patient Advocate

Advocacy: The Cornerstone of Cancer Survivorship

Advocacy

Types of Advocacy Self-advocacy Public Interest Advocacy/Public Policy Advocacy Advocacy for Others Community Advocacy

Self-Advocacy Sending a patient to do battle with cancer without any training is like parachuting a soldier into the jungle without the benefit of survival training. -Michael Lerner, PhD Founding Member of NCCS

Advocacy gives you some stability and a feeling of regaining some control in your life Advocacy is confidence building in the way it helps you face challenges that seem insurmountable Advocacy is a way of reaching out to others Advocacy can improve your quality of life Advocacy for yourself may be the difference that turns feeling hopeless and helpless into feeling hopeful Why is Self-Advocacy Important?

What is your Superhero Pose?

Self-Advocacy Skills Information Seeking Communication Problem-Solving Negotiation

Public Interest Advocacy

What is your Story? Taylor Bell Duck, Lung Cancer Survivor “I may be young for someone with lung cancer, but I intend to make the most of my experience…. I want to find a political science job that will allow me to make a difference in health policy. I want to give until it hurts. Marian Malloy Blackman, Breast Cancer Survivor “I used to walk around with reams and reams of paper—my doctor gave me a copy of everything... This treatment summary and plan is concise and easy.” Anne Willis, Ewing’s Sarcoma Survivor “I’m thankful to have found an oncology team that is so helpful, but I wish I’d had a treatment summary and survivorship care plan the day I finished treatment.”

What is Public Policy and How Does it Impact Cancer Care? Public policy is a system of regulatory decisions, legislative actions, funding priorities, and other courses of action as well as analysis by advocates and other groups. Everyone who is diagnosed with cancer is impacted by public policy. This impact can include: Funding for research for certain therapies; Approval and access of drugs; Screening guidelines; Public and private insurance coverage for treatment; and Many more financial and practical issues related to care.

NCCS Public Policy Priorities Delivery and payment reforms that provide cancer survivors access to cancer care planning services and coordinated care Implementation of the Affordable Care Act so that it best serves the needs of cancer survivors Resources to support an efficient and effective cancer drug review process at the Food and Drug Administration (FDA) that takes into consideration the needs of patients

Take Action: NCCS Priorities Read and learn about policy issues affecting cancer care in press outlets, journal articles, etc. Read our blog, Cancer Policy Matters Sign up for our updates at

Take Action: NCCS Priorities Support and advocate for the Planning Actively for Cancer Treatment (PACT) Act Get involved with the FDA’s Patient-Focused Drug Development program ( ionDrugUserFee/ucm htm) Get involved with the FDA’s Patient Network (

Take Action: Research Advocacy Activities Research Advocacy brings the patient voices and perspectives to research Opportunities include grant review, advising on clinical trial protocols, serving on committees that prioritize research and clinical trials, attending scientific conferences.

Getting Started in Research Advocacy Research Advocacy Network institute institute National Cancer Institute's Office of Advocacy Relations r/become-advocate r/become-advocate Scholarship programs for major conferences – ASCO Patient Advocate Program – AACR Scientist Survivor Program

Nothing About Us Without Us

NCCS Cancer Policy Advocate Training (CPAT) Two-day policy issues training in Washington, DC designed for advocates and it includes three webinars CPAT aims to train patient advocates on the most pressing policy issues facing quality cancer care in an effort to facilitate their engagement in public policy advocacy CPAT 2015 will focus on the needs of survivors from diagnosis through treatment and long-term survivorship care Dates: – Wednesday, April 29 from 3:00pm-4:30pm ET – Wednesday, May 27 from 3:00pm-4:30pm ET – Thursday, June 25 – Friday, June 26 in Washington, DC – Wednesday, August 5 from 3:00pm-4:30pm ET

Thank you Questions? Kelsey Nepote, MSW