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Fall 2021 Cancer Policy Roundtable

NCCS hosted the 21st Fall Cancer Policy Roundtable (CPR) on November 18, 2021. The Cancer Policy Roundtable (CPR) is a semi-annual meeting convening stakeholders in the cancer community. Participants discuss pressing issues related to cancer research, development of new cancer therapies, and the delivery of quality cancer care.

Fall 2021 CPR Executive Summary

Opening Keynote: Congresswoman Debbie Wasserman Schultz

U.S. House Representative and Cancer Survivor

Congresswoman Debbie Wasserman Schultz (D-FL), a cancer survivor, joined NCCS to kick off our second Cancer Policy Roundtable of 2021. In the opening keynote, the Congresswoman shared her personal cancer survivorship story as well as her current efforts to pursue bipartisan cancer survivorship legislation.

When discussing her role as both a cancer survivor and member of Congress, she passionately stated:

“Just like your organization empowers survivors and helps them manage the emotional and practical and financial challenges of cancer, in my role as a federal legislator, I’m trying to change outdated policies, create new laws, shepherd new opportunities for leaders like yourselves to drive our mission home and make sure that we think about this approach in a very personal way, because there’s nothing more personal than fighting cancer.”

To paint a clearer picture of the challenges cancer survivors face, Congresswoman Wasserman Schultz compared the journey to navigating a Swiss cheese minefield. In this analogy, she explained that cancer survivors spend most of their time on solid ground but eventually fall into a hole representing either insufficient information to navigate their cancer treatment and survivorship journey. She shared that the goal of her forthcoming legislation is to work with key stakeholders to identify where patients feel lost and address those gaps so cancer survivors no longer feel like they are lost in transition.

Rep. Debbie Wasserman Schultz

Rep. Debbie Wasserman Schultz (D-FL-24)

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Debbie Wasserman Schultz has dedicated her public life to serving South Floridians and standing up for justice, equality, and opportunity wherever and whenever it is threatened. As Florida’s first Jewish Congresswoman, she has earned the respect of her colleagues for working tirelessly on behalf of seniors, children, and families for nearly three decades.

After announcing her own battle with breast cancer in 2009, Wasserman Schultz introduced the EARLY Act, a piece of legislation designed to increase breast cancer education and awareness. The EARLY Act became law as part of the Affordable Care Act, signed by President Barack Obama in 2010. Wasserman Schultz also worked with Republican Congresswoman Renee Elmers to write and pass the PALS Act, which helps increase young women’s access to mammograms.

Congresswoman Wasserman Schultz attended the University of Florida where she served as president of the Student Senate and graduated with a Bachelor’s Degree in Political Science in 1988 and a Master’s Degree in 1990. She has been married to Steve Schultz for more than 20 years and together they have three children.

Estamos Aquí: Cancer Survivorship in the Latinx/Hispanic Population

Panel Discussion


Session Slide Decks and Resources

Panel Speakers

Narjust Duma

Narjust Duma, MD | Dana-Farber Cancer Institute

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Dr. Narjust Duma is the Associate Director of the Cancer Care Equity Program and a thoracic medical oncologist at the Dana-Farber Brigham Cancer Center. She completed her internal medicine residency in Rutgers New Jersey Medical School and fellowship at the Mayo Clinic in Rochester, Minnesota where she was the chief fellow from 2018-2019.

Dr. Duma’s clinical interests include targeted therapy for lung cancer and the care of women with lung cancer, including their unique aspects of cancer survivorship. She is the principal investigator of the Sexual Health Assessment in Women with Lung Cancer (SHAWL) Study, the largest study to date evaluating sexual dysfunction in women with lung cancer.

Apart from her clinical interests in lung cancer, she is also a leading and productive researcher in cancer health disparities, gender and racial discrimination in medical education and medicine. She received many awards including the 2018 Resident of the Year Award by the National Hispanic Medical Association, the Mayo Brothers Distinguished Fellowship award and the 2020 Rising Star award by the LEAD national conference for women in hematology and oncology.

In addition, Dr. Duma founded the Duma Lab in 2019. The laboratory focuses on lung cancer, social justice issues in medicine and medical education. The laboratory long-term goals are to create a welcoming environment for medical trainees from historically underrepresented groups in medicine while improving the care of vulnerable populations. Members of the Duma Lab are agents of change.

Rebecca Esparza

Rebecca Esparza, MBA | Cancer Survivor and NCCS CPAT Advocate

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Rebecca Esparza, MBA, is a two-time cancer survivor (ovarian and thyroid). She has traveled all over the world to represent cancer survivors at various cancer advocacy activities, speaking engagements, committees and forums. Her long term survivorship of ovarian cancer (20 years) has motivated her to speak up for the underserved and marginalized; especially those without access to healthcare and/or health insurance. As a cancer patient who has experienced a cancer diagnosis with no health insurance, she has assisted countless patients and caregivers access services and programs to assist in their personal journeys.

Rebecca has been an NCCS CPAT Member advocate for several years. From 2018 to 2020, she served as a committee member on NCCS’s Redefining Functional Status quality measurement project. In 2019, Rebecca served as an NCCS Elevate Ambassador, working to improve survivorship care in her community.

Her passion is making life better for children, whether it’s lovingly spoiling her two nephews or helping dreams come true for critically ill children through her volunteer work with the Make-A-Wish Foundation.

Roxana J. Guerra | Living With Metastatic Breast Cancer

Shelley Fuld Nasso

Shelley Fuld Nasso, MPP (moderator) | CEO, NCCS

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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.

The 25th Anniversary of the National Cancer Institute’s Office of Cancer Survivorship (OCS)

Emily Tonorezos, MD, MPH
Director, Office of Cancer Survivorship


Session Slide Deck and Resources

Emily Tonorezos MD MPH

Emily Tonorezos, MD, MPH | Director, Office of Cancer Survivorship

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Emily S. Tonorezos, MD, MPH, serves as Director of the Office of Cancer Survivorship, part of the Division of Cancer Control and Population Sciences at the National Cancer Institute (NCI). In this position, Dr. Tonorezos leads NCI’s efforts to address the challenges facing cancer survivors and their families — to prevent or mitigate adverse effects and to improve the health and well-being of cancer survivors from the time of diagnosis through the remainder of their lives.

Dr. Tonorezos came to NCI from Memorial Sloan Kettering Cancer Center and the Weill Cornell Medical College, both in New York, NY, where she served as Director of the Adult Long-Term Follow-Up Program for survivors of childhood and young adult cancers. Her research focuses on cardiometabolic consequences of cancer therapy, childhood and young adult cancer survivorship, diet and nutrition, and care coordination for this population. She serves on the National Academy of Sciences, Engineering and Medicine Committee on Childhood Cancer and Disability; the Cancer Survivorship Committee, the Adolescent and Young Adult Task Force, and the Clinical Guideline Committee for the American Society of Clinical Oncology (ASCO); and the Metabolic Syndrome Guideline Committee for the Children’s Oncology Group (COG). She is currently co-leader of the International Guideline Harmonization Group for the metabolic syndrome and led a recent international effort to develop recommendations for adult survivors of heritable retinoblastoma.

Dr. Tonorezos is a general internist, having earned her medical degree from the University of Rochester School of Medicine and masters in public health from the Johns Hopkins Bloomberg School of Public Health. She completed internal medicine residency and chief residency at Columbia University Medical Center, as well as a general internal medicine fellowship at the Johns Hopkins Hospital.

Interviews with Stovall Award Winners

Deborah Mayer, PhD, RN

Frances Hill Fox Distinguished Professor Emeritus of Nursing
University of North Carolina Chapel Hill School of Nursing

Deborah Mayer, PhD, RN

Deborah K. Mayer, PhD, RN

Deborah K. Mayer, PhD, RN, AOCN, FAAN is the Frances Hill Fox Distinguished Professor Emeritus of Nursing at the University of North Carolina Chapel Hill School of Nursing and a 2021 recipient of the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care. Dr. Mayer is an advanced practice oncology nurse who has more than 45 years of cancer nursing practice, education, research, and management experience. She earned a PhD from the University of Utah, her MSN from Yale University, her BSN from Excelsior College, her Nurse Practitioner Certificate from the University of Maryland, and her diploma from Pennsylvania Hospital School of Nursing.

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Dr. Mayer is past president of the Oncology Nursing Society (ONS), was a member of the National Cancer Institute’s National Cancer Advisory Board (a Presidential appointment) and Board of Scientific Advisors. Dr. Mayer was elected as a fellow of the American Academy of Nursing. She is active in ONS and the American Society of Clinical Oncology (ASCO) and is a Past Chair of the ASCO Survivorship Committee. She served as Editor for the ONS’ Clinical Journal of Oncology Nursing (CJON) from 2007-2015 and has published over 200 articles, book chapters, and editorials on cancer-related issues. She was awarded the ONS Lifetime Achievement Award in 2015 and, in 2016, was appointed as the only nurse to Vice President Biden’s Cancer Moonshot Blue Ribbon Panel. She was the Interim Director of the Office of Cancer Survivorship at NCI from 2018-2020.

At UNC School of Nursing, she was the coordinator for the oncology focus of the adult and gerotonology nurse practitioner program. Her program of research focuses on the issues facing cancer survivors and improving cancer care. She was the Director of Cancer Survivorship at the UNC Lineberger Comprehensive Cancer Center. As a nurse who worked on the “frontline” with cancer survivors, and as a cancer survivor herself, she brings a unique perspective to her clinical, research, and health policy collaborations with the cancer community.

Kimberly D. Richardson

Cancer Survivor, Patient Advocate
NCCS Elevate Ambassador 2020

Kimberly D. Richardson

Kimberly D. Richardson

Kimberly D. Richardson is a two-time cancer survivor of both ovarian and breast cancer and is a 2021 recipient of the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care. Kimberly has been active as a patient advocate since her first diagnosis in 2013. She was a member of the inaugural group of NCCS Elevate Ambassadors in 2019. As an Elevate Ambassador, she partnered with University of Illinois College of Medicine students to launch an educational program for scientists and cancer survivors called, “Survivors Advising Scientists Educational Program” (SASEP). The mission of SASEP is to create a bidirectional educational platform that connects young investigators with cancer patients, survivors, research advocates and allies to increase scientific literacy and engagement across the community.

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Ms. Richardson is a member of several advisory groups on disparities in ovarian and breast cancer, serves on patient expert councils for global organizations striving for better patient outcomes in clinical trials, and advocates at the state and federal level for funding for cancer research. She is the co-Chair of the Patient Advocacy Committee of the Society of Integrative Oncology, where she sits on the Disparities committee. Her most recent appointments are to the NCI Moonshot IMPACT program, the American Board of Emergency Medicine, and the Ovarian Cancer Research Alliance Industry Council on Disparities.

Ms. Richardson is Founder and Organizer of Chicago’s first researcher/survivor summit, including six major teaching hospitals and universities to bring key stakeholders together to discuss current gynecological research. She has written and spoken about her perspective on health inequity related to COVID-19 through blogs, webinars, and podcasts. Prior to her cancer diagnosis, Ms. Richardson had 30 years of urban planning and community economic development experience, serving as the Director of Planning and Development for the City of Harvey, Illinois and managing a community-based non-profit organization.

Cancer Policy Roundtable Fall 2021 Sponsors

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