Cancer Policy & Advocacy Team Symposium 2017
June 25-27, more than 60 patient advocates from across the country and 20 medical students took part in this year’s NCCS 2017 Cancer Policy & Advocacy Team (CPAT) Symposium and Hill Day.
Over the course of two days, CPAT Members participated in panel discussions, interactive presentations, and breakout sessions on cancer policy and ways to help them be even more effective advocates.
Panel 1 speakers Jennifer Campisano, Desiree Walker, Martin Townsend, and Heidi Floyd tell their journeys of becoming patient advocates.
The room was full of energy with 60+ patient advocates from across the country.
Patient advocates Alicia Staley and AnneMarie Ciccarella present on the importance of social media.
Cancer survivor and communications expert Margot Friedman presents an outline for patient advocates to use when constructing their story.
NCCS Board Member Ben Fishman, CUPID student Grace Lartey, and patient advocate Brandi Forbes work on developing their story.
The CUPID med students were engaged with cancer survivors and focused their efforts on improving patient-doctor communication.
Patient advocate Candace Henley shares her inspiring story during the communications training.
Dr. Arif Kamal spoke to the attendees about the role of communication, treatment decision-making, and supportive care.
Improving Survivorship Care in Your Local Community Co-Chair Jill Beavers-Kirby opens the breakout session.
Improving Patient-Doctor Communication working group members Sandy Castillo and Randy Hillard help facilitate role playing exercises in the breakout session.
Symposium 2017 Session Topics
Click the links to view/download the session slide deck (PDF opens in a new tab)
- Panel Discussion: The Role of Patient Advocates in Improving Quality Cancer Care
- Social Media Strategies for Patient Advocates
Alicia Staley (@stales) and AnneMarie Ciccarella (@chemobrainfog)
- Communications Training: Your Story in a Nutshell
Margot Friedman, JD and NCCS Communications Director Dan Weber
- The Economics of the Cancer Care System
Elizabeth Goss, Turner & Goss LLP and NCCS CEO Shelley Fuld Nasso
- Ensuring Access to Affordable, Quality Health Care for Cancer Survivors
Karen Pollitz, Senior Fellow, Kaiser Family Foundation
- Staging Your Impact: Meetings with Policymakers
NCCS CEO Shelley Fuld Nasso and Public Policy Manager Lindsay Houff
- High Quality Cancer Care: The Role of Communication, Treatment Decision-Making, and Supportive Care
Arif Kamal, MD, Assistant Professor, Duke Univ. School of Medicine
- Breakout Session: Improving Patient-Doctor Communication
- Breakout Session: Improving Survivorship Care in Your Community
A goal of NCCS is improving patient-doctor communication, and for the second year in a row, advocates were joined by medical students taking part in the Cancer in the Under-Privileged Indigent or Disadvantaged (CUPID) program at Johns Hopkins, Indiana, and Ohio State Universities. Both the advocates and the medical students gain so much from hearing and sharing their perspectives and experiences.
We were thrilled to start the day with Rep. Jamie Raskin (MD-8), whose thoughtful words inspired and fired-up the advocates for the Hill Day ahead. Advocates and CUPID students spread out across Capitol Hill, asking their Senators and Representatives to oppose the harmful health care repeal that was being debated in the Senate.
NCCS CEO Shelley Fuld Nasso and patient advocates Sandy Castillo and Rebecca Esparza outside Senator Ted Cruz’s (R-TX) office. (Photo by Leslie E. Kossoff/LK Photos)
Patient advocate Stacey Tinianov and NCCS CEO Shelley Fuld Nasso meet with Congressman Ro Khanna (CA-17). (Photo by Leslie E. Kossoff/LK Photos)
NCCS staff and patient advocate Liza Fues meet with staffers in Congressman Jamie Raskin’s (MD-8) office. (Photo by Leslie E. Kossoff/LK Photos)
CUPID med students Cyrus Washington and Jasmine Vakhshoorzadeh, advocates Xenia Rybak, Dawn Aldrich, Yolanda Alleyne, and Desiree Walker, and NCCS Policy Manager Lindsay Houff meet with a staff person in Senator Chuck Schumer’s (D-NY) office. (Photo by Leslie E. Kossoff)
CPAT Steering Committee Member Rachel Ferraris, Congressman Austin Scott (GA-8), and NCCS CEO Shelley Fuld Nasso, pose outside Rep. Scott’s office. (Photo by Leslie E. Kossoff/LK Photos)
CPAT Steering Committee Member Rachel Ferraris meets with Congressman Austin Scott (GA-8). (Photo by Leslie E. Kossoff/LK Photos)
Patient advocate Veronika Panagiotou meets with a staff person in Congressman Rothfus’ (PA-12) office. (Photo by Leslie E. Kossoff/LK Photos)
Patient advocate Desiree Walker and NCCS Communications Coordinator Zach Biondo meet with a staff person in Congressman Nadler’s (NY-10) office. (Photo by Leslie E. Kossoff/LK Photos)
Patient advocate Rebecca Esparza and NCCS Public Policy Manager Lindsay Houff meet with a staffer in Congressman Farenthold’s (TX-27) office. (Photo by Leslie E. Kossoff/LK Photos)
NCCS CEO Shelley Fuld Nasso and patient advocates Sandy Castillo and Rebecca Esparza meet with staffer in Senator Cruz’s office. (Photo by Leslie E. Kossoff/LK Photos)
It was an exhilarating day for everyone, as that afternoon, Senate leadership was forced to delay a vote on the bill due to a lack of support. NCCS staff were so proud of how well advocates and CUPID students shared their personal stories and experiences, showing Members and their staff the frightening impact their vote for health care repeal could have on millions of patients.
You can still get involved by visiting the NCCS #ProtectOurCare page.
CPAT Members’ Symposium Feedback
“Wonderful to role play with med students.”
“I will use the information to keep in contact with my legislatures, to keep in contact about the current political issues, and monitor next actions.”
“I feel more confident talking about policy and the steps that I did [before]. I think this will enable me to participate in more on a local and national level.”
“I will use this information to help me as I advocate for other cancer patients and their families. I will also share the information with other survivors in hope that some may feel compelled to become an advocate as well.”
“Provided me with a strong foundation for future advocacy.”
CPAT Member Kirby Lewis: My NCCS CPAT Symposium and Hill Day Experience (Blog Post)