Cancer Policy & Advocacy Team (CPAT)
2024 In-Person Symposium
June 26 – 28 | Arlington, VA
The 2024 Cancer Policy & Advocacy Team (CPAT) Symposium welcomed nearly 100 participants, including cancer survivors, caregivers, medical and non-profit professionals, and students focused on health care policy, medicine, and cancer research. The rising second-year medical students from the CUPID (Cancer in the Under-Privileged Indigent or Disadvantaged) Program at Johns Hopkins, Indiana, and Ohio State Universities joined us again this year. The CUPID program has attended the CPAT Symposium every year since 2016, and it continues to be a life changing experience for the medical students. The CPAT members take pride in supporting the education of the next generation of health care providers.
The CPAT Symposium supports advocates in their engagement in public policy advocacy with training on health care policy and participating in legislative advocacy. CPAT members spend their final day learning from the leading voices in Cancer Survivorship to learn about topics that will improve their quality of life. With this knowledge, CPAT members will support the lives of those touched by cancer in their local communities by sharing what they have learned. The three days were filled with laughter and learning, a few tears, and most importantly, support for each other. The energy was palpable, and participants tell us it gets better every year.
Read on for highlights from the sessions…
Session Summaries and Materials
Sharing Advocacy on Social Media
Kara Kenan | NCCS Marketing and Communications Manager
Kara Kenan shared how amplifying your message with social media builds and engages a community of supporters that influences positive change. She highlighted treads, dos and don’ts and tools to craft an engaging message. Kara invited Tamron Little to join her on stage to discuss how Tamron has built and continues to engage her social media community. Tamron leverages her social media platforms to spread awareness about the importance of mental health in survivorship.
Hill Day Preparation
Veronika Panagiotou, PhD | NCCS Advocacy and Program Manager
Shelley Fuld Nasso, MPP | NCCS CEO
Shelley Fuld Nasso , MPP, and Veronika Panagiotou, PhD gave an overview of the Comprehensive Cancer Survivorship Act and Cancer Care Planning and Communications Act, discussed how advocates can weave the legislation into their cancer story and provided guidance on how to engage with legislative staffers and members of Congress in meetings on Capitol Hill. NCCS staffers roleplayed with advocates different scenarios that they may encounter when participating in legislative meetings.
Improving Doctor Patient Communication Role Play Activity
Ana Maria López, MD, MPH | Jefferson Health New Jersey Sidney Kimmel Cancer Center
Ana Maria López, MD, MPH led the role play exercise on improving communication. Medical students and advocates participated in the activity with three scenarios involving difficult conversations between physicians and patients. Students practiced delivering difficult news and advocates demonstrated ideal communications from the patient perspective. The discussion that followed focused on the need for medical students to recognize the importance of treating the “whole” person instead of just dealing with the cancer. Advocates focused on the importance of building a healthcare team that respected their values and beliefs.
Demystifying Palliative Care
C. Robert Bennett, PhD, CPNP-AC, PPNP-BC | Mayo Clinic Phoenix
Nurse Scientist C. Robert Bennett, PhD discussed the common myths and truths about palliative care. He shared the benefits of exploring what it means to live as well as possible for as long as possible and how to share that with your medical team and loved ones. Dr. Bennett concluded that anyone with a serious illness, regardless of trajectory would benefit from holistic care that is in alignment with a patients’ preferences and goals from the beginning of treatment through the end of life
Keynote: Skin In The Game: A Physician Couples’ Cancer Survivorship Perspective and Experience
Samantha Siegel, MD | Director of Cancer Survivorship, Kaiser Permanente San Francisco
Samuel Siegel, MD | Pediatrician, Dignity Health Woodland Clinic
Samantha Siegel, MD and Pediatrician Samuel Siegel, MD shared their powerful story of young adult survivorship. They each described what it was like to be diagnosed with cancer while being health care providers. Dr. Samantha and Dr. Samuel described what it was like when the roles were reversed, and they needed to support each other as care partners. They illustrated how cancer continues to have an impact on their family life, working in medicine and their overall health and wellbeing. Dr. Samantha and Dr. Samuel shared how they strive every day to live a meaningful, purpose-driven life after a cancer diagnosis.
Sexual Health and Intimacy in Survivorship
Georgia Anderson, PHD, MSW | Assistant Professor, University of Cincinnati
Georgia Anderson, PHD, MSW highlighted the importance that sexual health and intimacy plays in a survivor’s quality of life. She explored the physical and psychosocial changes that occur after a cancer diagnosis that have the potential to create sexual dysfunction. Dr. Anderson explored different forms of intimacy and how cancer survivors and caregivers can talk about them to increase their sense of closeness and feelings of well-being
Speaker Biographies
Click a speaker name to read more.
Samantha Siegel, MDSamuel Siegel, MDGeorgia Anderson, PhD, MSWC. Robert Bennett, PhDKara KenanShelley Fuld Nasso, MPPAna María López, MD, MPHVeronika Panagiotou, PhD
Samantha Siegel, MD (Keynote Speaker)
Internist
Kaiser Permanente
Dr. Samantha Siegel is an internist at Kaiser Permanente. She has survived relapsed/refractory Hodgkin’s Lymphoma, including an autologous bone marrow transplant in June 2022. This has made her passionate about cancer survivorship, integrative medicine and personal narrative impacting the illness experience.
Dr. Siegel hopes to pioneer a longitudinal cancer survivorship care model, beginning at diagnosis, that can be replicated in other healthcare systems. She is focused on elevating cancer survivorship to its own multidisciplinary board certification status.
Dr. Siegel lives in Davis with her husband, three kids and energetic dog. They enjoy outdoor activities and plant-based living.
Samuel Siegel, MD (Keynote Speaker)
Pediatrician
Dignity Health Woodland Clinic
Samuel Siegel is a general pediatrician in Woodland, CA serving a predominantly rural and underserved population, including immigrants from Mexico and Central America. He practices hospital medicine, seeing newborns during their birth hospitalization and he attends high risk deliveries.
In his outpatient practice, he has a special interest in pediatric obesity and nutrition and founded an annual healthy eating project called Home-Grown Health. There, he gives away 1000 vegetable starts, soil, and fertilizer each year to families in his community. He believes that allowing children to participate in the unique process of nurturing plants from seeds will more successfully promote healthy eating habits.
He is also a patient who has learned to live a fulfilling life with chronic medical conditions since his early twenties including inflammatory bowel disease, treatment for cancer while in medical school, and a liver transplant in 2016. He is a husband and partner to a physician-patient spouse and together they have three wonderful children ages 12, 11, and 6.
Georgia Anderson, PhD, MSW
Assistant Professor
University of Cincinnati
Dr. Anderson has been a social worker nearly 20 years. Her early career was spent working in the community mental health system before transitioning to medical social work. Most of her career has been spent working in oncology and palliative care at The Barrett Cancer Center at UC Health. During her tenure at UC Health, Georgia served as the Manager of Outpatient Social Work, the Office of Decedent Affairs, and Palliative Care. The role allowed her to grow as an administrative and clinical supervisor. She also served as a clinical support group facilitator at The Cancer Support Community and therapist at Cancer Family Care.
Dr. Anderson pursued her PhD in Social Work with the support of a Doctoral Social Work Training Grant from the American Cancer Society. . She graduated with the Graduate Dean’s Citation in 2021 after successfully defending her dissertation The Lived Experience of Women with Head & Neck Cancer and the Impact on Close Relationships. Dr. Anderson is currently an assistant professor of social work at the University of Cincinnati. She teaches in the BSW and MSW programs.
Dr. Anderson’s research focuses on cancer survivorship, the impact on family functioning, and quality of life. She is particularly interested in improving quality of life for women with lung, head & neck, and gynecologic cancers.
C. Robert Bennett, PhD, CPNP-AC
Nurse Scientist
Mayo Clinic Arizona
Dr. Robert Bennett is a Nurse Scientist at the Mayo Clinic Arizona and works closely with the Mayo Clinic Comprehensive Cancer Center Adolescent and Young Adult Oncology team. He completed his postdoctoral fellowship in palliative care and aging research at the University of Colorado School of Medicine. Dr. Bennett has over 20 years of clinical practice experience. His work focuses on mental well-being and quality of life among AYA cancer survivors. His research has been published in the Journal of Pain and Symptom Management, Supportive Care in Cancer, Journal of Pediatric Hematology/Oncology Nursing, and Journal of Hospice and Palliative Nursing.
Dr. Bennett is an international speaker on AYA cancer survivorship, both at peer reviewed scientific conferences and conferences serving the AYA cancer community. Dr. Bennett has been an invited speaker at CancerCon 2022 – 2024 and a featured guest on the Leukemia and Lymphoma Society podcast The Bloodline, and YouTube talk show Palliative Care Friday Chalk Talk. He serves on the scientific medical advisory board for the non-profit organization Stupid Cancer. Dr. Bennett was recently selected by the Hospice and Palliative Nurses Association (HPNA) as a 2024 Research Scholar.
Kara Kenan
Marketing and Communications Manager
National Coalition for Cancer Survivorship
Kara Kenan, a 10-year breast cancer survivor, joined the NCCS team in 2022 as our Marketing and Communications Manager. Kara has a master’s degree in English, Composition & Rhetoric and nearly 20 years’ experience in communications across the public and private sectors. Prior to joining NCCS, Kara founded Going Beyond the Pink, a nonprofit organization supporting breast cancer survivors established as a result of her personal experience with stage-3 breast cancer. She also taught English at North Dakota State University for over a decade.
A decorated veteran, Kara served in the Air National Guard for 6-years, including a deployment to Iraq in support of Operation Iraqi Freedom in 2003. Her role in the military allowed her to support both Search & Rescue and Homeland Defense missions. She is the proud recipient of the Air Force Commendation Medal, Air Force Achievement Medal, Air Reserve Forces Meritorious Service Medal, National Defense Service Medal and Defense of Liberty Service Medal, among others.
In addition to her work with NCCS and Going Beyond the Pink, Kara serves on various cancer-related workgroups and committees with the American Society of Plastic Surgeons, American Cancer Society, Department of Defense Breast Cancer Research Program, Environmental Working Group, Toxic Action Center, University of North Carolina Wilmington, and Quality Enhancement for Nonprofit Organizations.
When she’s not working, Kara can be found dancing in the kitchen, spending time with her family, traveling, or learning about herbalism and homeopathic medicine.
Shelley Fuld Nasso, MPP
CEO
National Coalition for Cancer Survivorship
Shelley is honored and humbled to serve NCCS and the millions of cancer survivors and their family members NCCS represents. She is a policy wonk and advocate and loves to empower cancer survivors to make their voices heard in Washington, DC and around the country. She joined NCCS in December 2012 and was named CEO in October 2013.
Prior to joining NCCS, Shelley served in leadership roles at Susan G. Komen, where she leveraged Komen’s grassroots network in Washington, DC and in state capitals. There she built relationships with policymakers and partner organizations and led a team of staff and volunteer leaders to influence state budgets and legislation. Shelley has also served as Director of Community Philanthropy at The Dallas Foundation and held management positions at communications and technology enterprises. She is a graduate of Rice University and holds a Master of Public Policy from the Harvard Kennedy School.
Shelley’s commitment to the work of NCCS is strongly tied to the experiences in the cancer care system of her dear friend, Dr. Brent Whitworth, a beloved physician who was diagnosed with stage IV cancer days before his 42nd birthday and who passed away 19 months later. Through Brent’s experiences, Shelley witnessed the strengths and flaws of the cancer care system and embraces the notion that policy change can make cancer care better for patients and caregivers.
Ana María López, MD, MPH
Professor and Vice Chair of Medical Oncology
Sidney Kimmel Medical College
NCCS Board Member
Ana Maria López, MD, MPH, FACP, is Professor and Vice Chair of Medical Oncology at Sidney Kimmel Medical College and Chief of Cancer Services at Sidney Kimmel Cancer Center – Jefferson Health – New Jersey. Dr. López has served as an NCCS Board Member since 2021. Dr. López joined Jefferson in 2018 from the Huntsman Cancer Institute in Salt Lake City, UT, where she was Director of Cancer Health Equality and Inclusion and served as Associate Vice President of Health Equality and Inclusion at the University of Utah Health. A board-certified Medical Oncologist, Dr. López’s clinical expertise is in women’s malignancies, integrative medicine and oncology, and telehealth.
Dr. López is President-Emeritus of the American College of Physicians, the largest medical specialty organization in the United States. Her strong commitment to health equity is reflected in her work with the American Society of Clinical Oncology as former Chair of the Health Equity Committee, and with the Association of American Medical Colleges where she serves as Member of the Steering Committee of the Group of Women in Medicine and Science. Her areas of expertise and research focus include cancer prevention, integrative oncology, and innovations in health care.
Veronika Panagiotou, PhD
Advocacy and Program Manager
National Coalition for Cancer Survivorship
Veronika Panagiotou, PhD, joined NCCS in the Summer of 2021 and serves as the Advocacy and Program Manager. Her responsibilities include managing the Cancer Policy and Advocacy Team (CPAT), Survivorship Champions and various advocacy initiatives.
Dr. Panagiotou’s passion for working in survivorship and advocacy emerged after being diagnosed with Non-Hodgkin’s Lymphoma when she was 25 years old. As a young adult cancer survivor, she has witnessed firsthand the need for recognition of the financial toxicity of treatment, the creation of more supportive services, and the availability of survivorship care. Before joining NCCS as a staff member, Veronika was an active CPAT member. She has met with her representatives to share her story and to advocate for policies such as the Affordable Care Act that saved her life by giving her access to cancer treatment.
Dr. Panagiotou obtained her doctorate in Community Engagement at Point Park University in 2021. She defended her dissertation entitled, “Do Service-Learning Models Create an Opportunity to Cultivate Civic Engagement Outcomes at Point Park University? A Phenomenological Study of Students’ Perspectives in Pittsburgh, Pennsylvania.” Dr. Panagiotou was awarded the “Student Award for Excellence in Community Engagement” for the academic year of 2017-2018 after creating the Pioneer Pantry which serves college students, faculty, and staff experiencing food insecurity on campus.
Hill Day
June 27, 2024 | Washington, DC
On June 27, 2024, CPAT members spent the day on Capitol Hill supporting two pieces of legislation:
- HR 4363 / S 2213, Comprehensive Cancer Survivorship Act (CCSA)
- HR 5183, Cancer Care Planning & Communications Act (CCPCA)
The CCSA is bipartisan legislation addressing the health of cancer survivors throughout the entire continuum of care – from diagnosis to active treatment and post-treatment – to improve survivorship, treatment, and transition for all survivors. The CCSA addresses the existing gaps in survivorship care to improve the quality of care and navigation of health care systems for survivors, their loved ones, and their health care providers.
The CCPCA would establish a Medicare service for cancer care planning. A plan can be developed and shared with the Medicare beneficiary at several points in the cancer care continuum, including at time of diagnosis, when there is any substantial change in treatment, and at the completion of primary treatment for cancer, when the plan may serve as a follow-up survivorship care plan.
CPAT members who participated in Hill Day meetings received both virtual and in-person training to help prepare for their meetings and convey the importance of this legislation using their experiences and personal cancer stories.
We kicked off the day gathering on Capitol Hill, joined by Representatives Debbie Wasserman Schultz (D-FL) and Mark DeSaulnier (D-CA), who thanked CPAT members for their support and advocacy.
NCCS successfully secured 124 scheduled meetings with congressional offices in both the House and Senate, with more than 90 advocates from 26 states participating. Within these meetings, NCCS and advocates talked with their members of Congress and congressional staff about the significance and benefits of the bills for cancer survivors.
Following Hill Day, Representatives Sanford Bishop (D-GA), Bonnie Watson Coleman (D-NJ), Andy Kim (D-NJ), Dina Titus (D-NV), Alma Adams (D-NC), and Raul Grijalva (D-AZ) cosponsored one or both of the bills after meeting with NCCS and advocates.
The CPAT Symposium Experience
Hear what attendees had to say about their experience at the CPAT Symposium.
“This Symposium stands out as the best ever. The speakers were top-notch and the connections I made with other advocates are unmatched!”
— Rebecca Esparza
— Rebecca Esparza
“I am now more equipped to drive meaningful change and support cancer-related policies that matter.”
— Melinda Bachini
— Melinda Bachini
” Being selected to be a CPAT Advocate and participate in the 2024 Symposium and Capitol Hill Day has truly been transformative for me as a metastatic breast cancer patient and advocate . From the very beginning of the three-day conference, it was jam packed with informative sessions that were both interactive and engaging.”
— April Donaldson
— April Donaldson
” I realized on a deep level that I am not alone in a wilderness. We may be pioneers of a kind, but we are pioneers together. I walked away from the CPAT symposium a better advocate, a better friend, and with a steady, warm flicker of hope in my heart. The CPAT Symposium was an experience that will resonate through the rest of my life”
— Anastasia Forrest
— Anastasia Forrest
“… deeply grateful to NCCS for providing us with the tools, knowledge, and support needed to elevate our work. The experience has been transformative!”
— Kristie Fields
— Kristie Fields
“NCCS creates a space for us to come together and turn our suffering into power and that power into meaningful action. Ultimately it allows us to heal ourselves while helping to change the world of cancer survivorship.”
— Stef Gayhart
— Stef Gayhart
“NCCS has given me a voice to advocate for children and adults with a cancer experience. Thank you for being an encouragement to me and helping me to reach my potential.”
— Sandra Calloway Fields
— Sandra Calloway Fields
“I highly encourage any survivors
or health care professionals who are involved in or hope to get more involved in cancer policy and advocacy to attend future NCCS events. I promise the experience will leave you empowered, hopeful, and with the tools needed to make durable change in the survivorship space.”
— Ryan Hannon, MD
or health care professionals who are involved in or hope to get more involved in cancer policy and advocacy to attend future NCCS events. I promise the experience will leave you empowered, hopeful, and with the tools needed to make durable change in the survivorship space.”
— Ryan Hannon, MD
Hill Day Training Videos & Resources
Please watch the recorded videos linked below if you are participating in Hill Day meetings to help you prepare. We will provide an overview and answer questions during the Hill Day Prep Session on June 26, but we provide more in-depth information in the videos below.
Preparing for Hill Meetings
In this presentation, CEO Shelley Fuld Nasso describes what you can expect in your Hill meetings, including dos and don’ts for meetings, how meetings are typically structured, what to do after a meeting (e.g. tweet your legislator, send a thank-you email, etc.), and how to stay involved with your members of Congress when you return home.
Running time: 20:09
Video Chapters
00:00 Intro
00:35 Congress Basics
07:23 What Role Do Advocates Play?
09:19 DOs and DON’Ts for Hill Meetings
15:18 Conducting the Meeting
16:20 After the Meeting, Maintaining Relationships
17:53 CPAT Hill Day Information
Legislative Ask Details 2024
This presentation gives you more background about the two bills that we’re advocating for during this year’s CPAT Hill Day. The Comprehensive Cancer Survivorship Act (CCSA), is a large package with a number of provisions to improve survivorship, treatment, and transition for all survivors. The Cancer Care Planning & Communications Act (CCPCA) is a standalone bill that is very similar to the care planning provision in the CCSA. Learn about how each bill will help cancer survivors.
Running time: 15:52
Video Chapters
00:00 Intro
00:22 Our Two Legislative Asks: CCSA & CCPCA
03:08 CCSA (H.R. 4363/S. 2213) Details
12:57 CCPCA (H.R. 5183) Details
CCSA Fact Sheet (2023 Version)
This fact sheet summarizes the need for the CCSA and highlights some of the most important provisions.
CCSA Fact Sheet
CCSA: Section-By-Section Summary
This document breaks down each of the provisions in the CCSA and describes them in detail.
CCSA Section-By-Section Breakdown
How to Tell Your Story
This short Telling Your Story presentation that walks you through how to use the Telling Your Story worksheet to hone your story for Hill meetings. Since you don’t have much time in these meetings and may be paired with other advocates, it’s best to keep your story under 2 minutes.
Please complete the worksheet and bring it with you to the Symposium. During the Hill Day Prep session, you’ll have the opportunity to share it.
Running time: 6:23
Telling Your Story Slide Deck (PDF)Media Training Webinar
Press Release Template (Word Doc) – A template press release that you can personalize and share with your local TV media in your community about your Hill meetings with Members of Congress.
Example Advocate Press Release (Word Doc)2024 CPAT Program Supporters
