Transcript National Coalition for Cancer Survivorship From Patient to Advocate

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
Connect on Twitter
@canceradvocacy
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
Why is Self-Advocacy Important?
• 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
What is your Superhero Pose?
Self-Advocacy Skills
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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 email updates at
www.canceradvocacy.org
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
(http://www.fda.gov/ForIndustry/UserFees/Prescript
ionDrugUserFee/ucm347317.htm)
• Get involved with the FDA’s Patient Network
(http://www.fda.gov/ForPatients/)
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
http://www.researchadvocacy.org/advocateinstitute
• National Cancer Institute's Office of Advocacy
Relations
http://www.cancer.gov/aboutnci/organization/oa
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
[email protected]
301-562-2768