2019 Cancer Policy & Advocacy Team Symposium

2019 CPAT Symposium attendees
The NCCS Cancer Policy and Advocacy Team (CPAT) is a program for survivors and caregivers interested in learning about pressing cancer policy issues and becoming engaged as advocates in public policy around the needs of cancer survivors. Each June NCCS hosts the CPAT Symposium in Washington, DC, a multi-day meeting and Hill Day for patient advocates who want to sharpen their advocacy skills and discuss policy issues affecting cancer survivors.

Symposium Highlights

At the 2019 CPAT Symposium, NCCS was again joined by an incredible group of patient advocates and medical students from across the country. Nearly half were first-time attendees at this year’s symposium. Held at the Washington Court Hotel, participants took part in presentations and interactive discussions to better inform them about the latest in cancer policy and research.

Among several great speakers at this year’s symposium, we were grateful to have Dr. Otis Brawley, of Johns Hopkins University, deliver the keynote address. Dr. Brawley shared research on disparities in cancer prevention and care and took questions from attendees.

Cancer Survivors Caucus Co-Chairs, Rep. Mark DeSaulnier (D-CA) and Rep. Buddy Carter (R-GA), took time from their busy schedules to talk to attendees about the health care measures they’re working on in Congress. The lawmakers discussed their intention to reintroduce the Cancer Care Planning and Communications Act (CCPCA), stayed for a lengthy Q&A, offered tips for cultivating relationships with Members of Congress, and encouraged attendees to be persistent in their advocacy.

Medical students enrolled in the Cancer in the Under-Privileged Indigent or Disadvantaged (CUPID) program participated in the symposium for the fourth year in a row. The CUPID program introduces a diverse group of rising second-year medical students to oncology, and aims to foster their interest in cancer care, as well as, their understanding of health care disparities. Meeting and interacting with the medical students, who are from Johns Hopkins University, Indiana University, and Ohio State University, is one of the pieces of the symposium we look forward to the most. Both the medical students and the patient advocates always enjoy this opportunity to learn and share together. Everyone comes away with a better understanding of how to effectively communicate with each other.

CPAT Symposium attendees with Keynote Speaker Dr. Otis Brawley.

CPAT Symposium attendees with Keynote Speaker Dr. Otis Brawley.

CEO Shelley Fuld Nasso 'breaks the ice' during the opening session.

CEO Shelley Fuld Nasso honors the memory of Jennifer Groves, a CPAT Member and passionate advocate who passed away last December.

A panel of patient advocates discuss the work they do in their communities and how they got started in advocacy.

Health policy experts JoAnn Volk, MA (Center) and Rodney Whitlock, PhD (Right) have a lively discussion about the health policy outlook for 2019.

Keynote Speaker Otis W. Brawley, MD presents the latest research about disparities in cancer care.

Keynote Speaker Otis W. Brawley, MD presents the latest research about disparities in cancer care.

NCCS Elevate Ambassador Sarah Cohn leads a breakout session intended to train participants on effective strategies for engaging with the media.

NCCS Elevate Ambassador Sarah Cohn leads a breakout session intended to train participants on effective strategies for engaging with the media.

Reps. Buddy Carter (R-GA) and Mark Desaulnier (D-CA), co-chairs of the Congressional Cancer Survivors Caucus, talk about the importance of legislative advocacy and take questions from attendees.

Reps. Buddy Carter (R-GA) and Mark Desaulnier (D-CA), co-chairs of the Congressional Cancer Survivors Caucus, talk about the importance of legislative advocacy and take questions from attendees.

Jennifer Bires, LICSW, OSW-C, of the Smith Center for Healing and the Arts, leads a session called "Grief and the Cancer Journey."

Jennifer Bires, LICSW, OSW-C, of the Smith Center for Healing and the Arts, leads a session called "Grief and the Cancer Journey."

CPAT Members Richard Gelb, Randy Broad, and Desiree King lead a dinner workshop that gives CUPID med students and advocates the opportunity to roleplay conversations, with the goal of improving communications

CPAT Members Richard Gelb, Randy Broad, and Desiree King lead a dinner workshop that gives CUPID med students and advocates the opportunity to roleplay conversations, with the goal of improving communications between patient and doctor.

A group of attendees share a laugh during the doctor/patient communication workshop.

A group of attendees share a laugh during the doctor/patient communication workshop.

Symposium Session Topics

2019 CPAT Symposium Agenda (Final)  [PDF]   |   Hill Day Leave Behind One-Pager  [PDF]

Note: All slide decks are in PDF format.

Opening Session
Shelley Fuld Nasso | Slide Deck »

Keynote Address: Disparities in Cancer Care and Outcomes
Otis Brawley, MD  |  Slide Deck »
Breakout Session: Your Story in a Nutshell 101
Shelley Fuld Nasso  |  Session worksheet »
Breakout Session: Media Training—Telling Your Story
Sarah Cohn  |  Slide Deck »
Staging Your Impact: Meetings with Policymakers
Shelley Fuld Nasso  |  Slide Deck »

Hill Day

As in previous years, symposium attendees then went to Capitol Hill to meet with their Members of Congress. They urged their Representative and Senators to support the Cancer Care Planning and Communications Act (CCPCA), which has since been reintroduced as H.R. 3835. The CCPCA would create the necessary Medicare reimbursement to encourage personalized care plans for Medicare beneficiaries and the doctor-patient conversations necessary to create them. This legislation would help thousands of cancer patients in Medicare navigate the complexities of a cancer diagnosis, help coordinate care, and empower patients with more information regarding their treatment and survivorship care.

The advocates also took this opportunity to reinforce how critical the Affordable Care Act (ACA) and its patient protections are to their physical and financial well-being. They highlighted the fact that, if the ACA were repealed or struck down by a court, recent proposals by some regarding pre-existing condition protections are bad policy and pale in comparison to current rules under the ACA.

Sen. Joe Manchin (D-WV) sat down with CPAT Member Kirby Lewis to discuss the importance of cancer care planning and the need to protect those with pre-existing conditions. Photo: Leslie Kossoff/LK Photos

CPAT Members met with Sen. Martha McSally (R-AZ) to discuss cancer care planning. From left to right: Jennifer Campisano, Sen. McSally, Arlene Kutoroff, and Kim Bowles.

CPAT Member Kim Bowles (R) greets Rep. Jamie Raskin after he spoke to attendees. Photo: Leslie Kossoff/LK Photos

Rep. Debbie Wasserman Schultz, after sharing her cancer story with Symposium attendees, shares an emotional moment with CPAT Member Liza Bernstein. Photo: Leslie Kossoff/LK Photos

Reps. Raskin and Wasserman Schultz take a group picture with CPAT Symposium attendees. Photo: Leslie Kossoff/LK Photos

Rep. Dan Crenshaw (R-TX) met with (from left to right) CPAT Members Allison Rosen and Rebecca Esparza, and CUPID medical student Carmen Say.

CPAT Member Randy Broad met with his Senator Patty Murray (D-WA) to discuss introducing the CCPCA in the Senate.

NCCS Elevate Ambassador Erin Cummings (center) makes the case for the CCPCA to a staffer in Sen. Ed Markey's (D-MA) office. Photo: Leslie Kossoff/LK Photos

NCCS Senior Director of Finance Woulita Seyoum, her son Nolawi, and CPAT Member Liza Fues conduct a hallway meeting with a staffer from Rep. Jamie Raskin's office. Photo: Leslie Kossoff/LK Photos

CUPID program associates from Ohio State University met with Sen. Rob Portman (R-OH). From left to right: Max Coffey, Sen. Portman, Victoria Doss, and Dr. Valerie Grignol.

A staff member from Rep. Troy Balderson's (R-OH) office meets with NCCS Communications Director Dan Weber and Dr. Valerie Grignol from the CUPID program. Photo: Leslie Kossoff/LK Photos

CPAT Members from Texas Allison Rosen (Left) and Rebecca Esparza take the underground train that connects the Capitol to congressional offices.

Staffers in Sen. Richard Shelby's (R-AL) office listen as NCCS Elevate Ambassadors Loretta Herring and Virgie Townsend, and CPAT Member Sandra Fields share their stories. Photo: Leslie Kossoff/LK Photos

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Symposium Tweets

NCCS encouraged CPAT Symposium attendees to tweet their thoughts and experiences during the Symposium, using the hashtag #CPAT19. Below is a tweet collection that summarizes the conversation around the Symposium. View the collection on Twitter »


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