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NCCS - National Coalition for Cancer Survivorship
  • About
        • About Us

        • NCCS is the oldest cancer survivor-led non-profit organization in America. We advocate for quality cancer care for all touched by cancer.

        • About NCCS

        • Our Mission
        • What is Advocacy?Learn about the different types of cancer advocacy, from personal advocacy to public interest advocacy.
        • Our HistoryRead how NCCS’s leaders coined the term “cancer survivor,” and established the nation’s first survivor-led non-profit organization.
        • Our Team
        • Financial Information
        • Employment
        • Contact Us
        • Support Our Mission

        • Make A GiftSupport our mission of quality cancer care for all with a gift to NCCS.
        • The 1986 ClubMake a monthly commitment to support NCCS, empower cancer survivors, and advance public policy.
        • Ways to GiveLearn about other ways you can contribute to NCCS such as planned giving, employer matches, shopping online, and more.
        • Partnerships
  • News
    • NCCS News
    • Advocate SpotlightEach month, NCCS highlights a cancer survivorship advocate, sharing their story and the work they do in their communities.
    • Policy CommentsRead NCCS’s comments to Congress, HHS, and other federal policymakers in Washington, DC on proposed rules and legislation.
    • Issue StatementsRead NCCS statements on pressing issues and developments in Washington affecting cancer survivors and their families.
  • Policy
        • Policy

        • Public policy is government action, in the form of legislation, regulation, funding, and other actions. Public policy affects people with cancer and the cancer care system in many ways.

        • Our Policy Priorities

        • Quality Cancer CareQuality cancer care is essential for patients. Learn how NCCS and others define quality.
        • Access to CareNCCS believes cancer care and clinical trials should be affordable and accessible to everyone.
        • Health EquityThe cancer experience is not the same for everyone. NCCS works on policy efforts to reduce disparities in outcomes.
        • Current Issues

        • Comprehensive Cancer Survivorship Act (CCSA)The CCSA is a large comprehensive bill introduced in Congress that aims to improve quality of care in all stages of a diagnosis.
        • Cancer Care Planning and Communications Act (CCPCA)CCPCA is a bill that would provide a billable Medicare service code for cancer care planning.
        • DIEP Flap AccessNCCS advocates for protection of access to DIEP Flap Breast Reconstruction Surgery for all breast cancer survivors.
        • Policy CommentsRead NCCS’s comments to Congress, HHS, and other federal policymakers in Washington, DC on proposed rules and legislation.
        • Issue StatementsRead NCCS statements on pressing issues and developments in Washington affecting cancer survivors and their families.
        • Quality Measurement Research
  • Get Involved
        • Get Involved

        • Whether you’re new to cancer advocacy or already have experience as an advocate, there are numerous ways you can get involved with NCCS.

        • Join NCCS

        • Cancer Policy and Advocacy Team (CPAT)CPAT is a program for survivors and caregivers to learn about pressing issues that affect quality cancer care, in order to be engaged as advocates in public policy.
        • Elevating SurvivorshipA patient-led initiative — NCCS mentors advocates (Elevate Ambassadors) to fill vital gaps in survivorship care in their community.
        • Survivorship ChampionsAn NCCS program for clinicians and researchers who are interested in improving care for cancer survivors.
        • Advocacy OpportunitiesThis page provides a list of upcoming events, webinars, conferences, and advocacy campaigns from NCCS and other leading cancer organizations.
        • Connect with Us

        • Subscribe to NCCS Updates
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        • Survivor Stories
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        • Make A Gift
        • Ways to Give
        • The 1986 Club
  • Survivorship Survey
        • State of Cancer Survivorship

        • NCCS conducts an annual State of Survivorship Survey, in partnership with Edge Research, to delve into the cancer patient and survivor journey. This study captures a range of perspectives to better understand how NCCS can support its mission to advocate for quality cancer care for all.

        • Reports by Year

        • 2023 Survey ReportThe 2023 Survey explored the caregiver experience for the first time, and features new data on the effect of cancer treatment on employment.
        • 2022 Survey ReportThe 2022 Survey found significant disparities in cancer care that impact people of color, young adults, women, and those with metastatic cancer, at higher rates.
        • 2021 Survey ReportThe 2021 Survey demonstrated that when patients receive quality care, have excellent support, and have financial resources, they are more likely to have positive outcomes.
        • 2020 Survey ReportIn the 2020 Survey, survivors reported that their care team is not helpful at addressing some common side effects of their cancer such as fatigue, anxiety, and depression.
  • Survivorship Checklist
        • Cancer Survivorship Checklist

        • The Cancer Survivorship Checklist is designed to be a simple, straightforward tool patients and caregivers can use as a guide for information critical to their care wherever they are on the cancer care continuum.

        • Start Your Cancer Survivorship Checklist
        • Survivorship Checklist Guide for Clinicians
        • Resources for Cancer Survivors

        • Survivorship ResourcesA collection of resources that provide information about navigating the cancer journey.
        • Cancer RehabilitationA supportive health care service that helps improve a person’s functioning during and after cancer treatment.
        • Integrative OncologyA field that combines traditional cancer treatments with therapies that support a person’s natural healing ability.
  • Resources
        • Resources

        • NCCS provides a wide variety of resources for both patients and caregivers.

        • Resources for Survivors and Caregivers

        • Cancer Survival ToolboxA free, award-winning audio program created by leading cancer organizations to help people better meet & understand the challenges of their illness.
        • Telehealth
        • Care Planning for Cancer Survivors
        • Remaining Hopeful
        • Self Advocacy
        • Talking With Your Doctor
        • Taking Charge of Your Care
        • Order Our Resources
        • Resources for Health Care Professionals

        • Tools For Care Providers
        • Telehealth Project
        • Survivorship Champions Webinars
        • Survivorship Checklist Guide for Clinicians
  • Events
    • Ellen L. Stovall Award
      • 2023 Winners
      • Awardees
      • Reception and Sponsorship
      • Committees
      • Nominations
    • Cancer Policy Roundtable (CPR)
      • Spring 2023 CPR
      • Fall 2022 CPR
      • Spring 2022 CPR
    • 2023 Survivorship Survey
    • Webinars
  • 0

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NCCS Presents The State of Cancer Survivorship: 2023 Survey Results

October 5, 2023/in NCCS News Access to Care, Care Coordination, Care Planning, Disparities in Outcomes, Doctor-Patient Communication, Drug Pricing, Health Equity, Integrative Oncology, Quality Cancer Care, Shared Decision-Making, Survivorship Care NCCS News

The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey, in partnership with Edge Research, to explore the cancer survivor journey. This study captures a range of perspectives to better understand how NCCS can support its mission to advocate for quality cancer care for everyone touched by cancer.

The research was conducted February through June of 2023 and builds upon findings from previous years to help NCCS understand the differences in survivor attitudes, experiences, and needs.

NCCS CEO Shelley Fuld Nasso summarized the new areas explored in the 2023 survey:

“One of the big things that was new this year was that we included caregivers to really understand their perspective and how they align with and differ from patients. We had a few questions that were specific to caregivers, and we also asked caregivers some of the same questions that we ask patients… We also really wanted to understand people’s experience working with cancer—how they continue to maintain their employment while they were either undergoing cancer treatment themselves or while they were caring for a loved one with cancer treatment.

“We know that the Inflation Reduction Act has some provisions in it that will affect people with Medicare and their prescription drugs, and one of those is a provision to spread the payments out over the year instead of having them all upfront earlier in the year. We asked people’s interest in that, we also asked for their perspectives on advertising for cancer treatment. We also worked with our our colleagues at the Society for Integrative Oncology (SIO) on some questions about the use of integrative oncology modalities.”

On October 3, NCCS hosted a web briefing to present the findings from the 2023 survey. Pam Loeb, Principal of Edge Research, and Shelley Fuld Nasso discussed the results in detail and took questions from an audience of survivors, health care professionals, researchers, and more.

Watch the full briefing below or watch it on YouTube.

Read the 2023 State of Survivorship Survey Report

Briefing Recording Sections
00:00 Intro, Objectives
03:34 Methodology, Key Findings
08:34 Patient & Caregiver Mindset
18:02 Cancer Care Experiences
34:35 Working with Cancer
39:47 Integrative Oncology
41:44 Q&A Session

Download the Survey Report Materials

NCCS has made the full presentation slide deck (containing more slides than are featured in this briefing), along with the narrative 2023 State of Survivorship Survey Report available for download.

Download the Survey Report.

# # #

About the Speakers

Pam Loeb
Pam LoebPam provides trusted counsel and custom marketing research for clients big and small. As a Principal at Edge, she works regularly with marquee brands to design studies and provide insights that drive their business. While Pam enjoys working with corporations on their branding, messaging, advertising, and new product development, she is also passionate about helping non-profits with their unique challenges. Over the last 20 years, she has managed hundreds of studies for NGOs and professional associations to improve their communications and public awareness efforts.

Shelley Fuld Nasso
Shelley Fuld NassoAs Chief Executive Officer, Shelley Fuld Nasso leads the public policy activities of NCCS at a time of rapid and fundamental health care system change. Prior to joining NCCS, Shelley served in leadership roles at Susan G. Komen, where she leveraged Komen’s grassroots network in Washington, D.C., and in state capitals. 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.

About National Coalition for Cancer Survivorship (NCCS)
National Coalition for Cancer Survivorship is the nation’s oldest survivor-led cancer advocacy organization advocating for quality cancer care for all people touched by cancer. Established in 1986 by 23 leaders with expertise in cancer research, community-based support programs, cancer information services and cancer advocacy, NCCS represents the more than 18.1 million Americans with a history of cancer by:

  • working with legislators and policy makers to improve cancer patient and survivor quality of care and quality of life after diagnosis,
  • advocating for changes in how our nation researches, regulates, finances, and delivers quality cancer care
  • empowering cancer survivors through publications and programs which provide tools for self-advocacy, and
  • convening other cancer organizations to address nationwide public policy issues affecting cancer survivors.
Tags: cancer care, Cancer Survivorship, caregivers, Decision-Making, survey, Survivorship Survey, webinar
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Take Action

Link to: Survivorship Champions

Become a Survivorship Champion

Survivorship Champions is a program for all clinicians and researchers, both oncology and primary care, who are interested in improving survivorship care and primary care’s role in caring for cancer survivors.

Learn More and Join »
Link to: Cancer Policy and Advocacy Team (CPAT)

Join CPAT

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

Learn More and Join »
Link to: Survivor Stories

Share Your Story

NCCS represents the millions of Americans who share a common experience – living with, through and beyond a cancer diagnosis. By sharing your story of how you have been touched by cancer, you are supporting the national cancer survivorship movement.

Share Your Story »

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  • About
    • Our Mission
    • What is Advocacy?
    • Our History
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    • Financial Information
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    • Contact Us
    • Make A Gift
    • The 1986 Club
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  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Comprehensive Cancer Survivorship Act (CCSA)
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    • DIEP Flap Access
    • Policy Comments
    • Issue Statements
    • Quality Measurement Research
  • Get Involved
    • Cancer Policy and Advocacy Team (CPAT)
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  • Survivorship Survey
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  • Survivorship Checklist
    • Start Your Cancer Survivorship Checklist
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    • Survivorship Checklist Guide for Clinicians
  • Resources
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    • Telehealth
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    • Remaining Hopeful
    • Self Advocacy
    • Talking With Your Doctor
    • Taking Charge of Your Care
    • Order Our Resources
    • Tools For Care Providers
    • Telehealth Project
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  • Events
    • Ellen L. Stovall Award
      • 2023 Winners
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      • Reception and Sponsorship
      • Committees
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    • Cancer Policy Roundtable (CPR)
      • Spring 2023 CPR
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      • Spring 2022 CPR
    • 2023 Survivorship Survey
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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute