National Coalition for Cancer Survivorship From Patient to Advocate: Your Role in Improving the...
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National Coalition for Cancer Survivorship From Patient to Advocate: Your Role in Improving the United States Cancer Care System Kelsey Nepote, MSW Policy
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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Connect on Twitter @canceradvocacy
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About NCCS
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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.
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Patient Advocate
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Advocacy: The Cornerstone of Cancer Survivorship
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Advocacy
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Types of Advocacy Self-advocacy Public Interest Advocacy/Public
Policy Advocacy Advocacy for Others Community Advocacy
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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
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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?
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What is your Superhero Pose?
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Self-Advocacy Skills Information Seeking Communication
Problem-Solving Negotiation
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Public Interest Advocacy
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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 papermy doctor gave me
a copy of everything... This treatment summary and plan is concise
and easy. Anne Willis, Ewings Sarcoma Survivor Im thankful to have
found an oncology team that is so helpful, but I wish Id had a
treatment summary and survivorship care plan the day I finished
treatment.
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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.
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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
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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 email updates at
www.canceradvocacy.org
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Take Action: NCCS Priorities Support and advocate for the
Planning Actively for Cancer Treatment (PACT) Act Get involved with
the FDAs Patient-Focused Drug Development program
(http://www.fda.gov/ForIndustry/UserFees/Prescript
ionDrugUserFee/ucm347317.htm) Get involved with the FDAs Patient
Network (http://www.fda.gov/ForPatients/)
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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.
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Getting Started in Research Advocacy Research Advocacy Network
http://www.researchadvocacy.org/advocate- institute
http://www.researchadvocacy.org/advocate- institute National Cancer
Institute's Office of Advocacy Relations
http://www.cancer.gov/aboutnci/organization/oa r/become-advocate
http://www.cancer.gov/aboutnci/organization/oa r/become-advocate
Scholarship programs for major conferences ASCO Patient Advocate
Program AACR Scientist Survivor Program
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Nothing About Us Without Us
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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
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Thank you Questions? Kelsey Nepote, MSW
[email protected] 301-562-2768
