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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.
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        • 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.
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    • 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.
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        • 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
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  • Events
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What Caught Our Eye: Cassidy-Graham Repeal Plan; Bipartisan ACA Hearings; Financial Issues for Childhood Survivors; IBM’s Watson Not Living Up to Expectations; and More

September 8, 2017/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Financial Toxicity, Health Equity NCCS News
What Caught Our Eye (WCOE), September 8, 2017
What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.

Affordable Care Act

“Cassidy-Graham: the Obamacare repeal plan McCain is supporting, explained”

https://twitter.com/sarahkliff/status/905525308241178624

By Sarah Kliff, Vox.com — The senator who cast the final vote to kill Obamacare repeal is unexpectedly helping to revive that effort from the dead. Sen. John McCain told the Hill Wednesday that he would support a plan offered by Sens. Lindsey Graham (R-SC) and Bill Cassidy (R-LA) to repeal the Affordable Care Act. And McCain later released a statement clarifying that he supports the bill in concept, but hasn’t seen a final product.
Read More »

“Lawmakers Debate How Much Wiggle Room To Give States In Health Care”

Just how much flexibility should states have to experiment with different ways to pay for and deliver health care? https://t.co/If4Y5be2Ra

— Kaiser Health News (@KHNews) September 7, 2017

By Julie Rovner, Kaiser Health News — One of the few things that Republicans and Democrats broadly agree on is that states should have some flexibility to experiment with different ways to pay for and deliver health care. But they disagree—strongly—on how much. In fact, Republicans don’t agree with one another on this, and that dissent helped sink efforts this summer to “repeal and replace” the Affordable Care Act. Bridging these divides will help determine the success of a bipartisan effort in the Senate this month to help shore up the individual health insurance market.
Read More »

“The Health 202: ‘Fix and Fine-Tune’ could be the new GOP Obamacare slogan”

The Health 202: "Fix and Fine-Tune" could be the new GOP Obamacare slogan https://t.co/3xJmnqVQId

— The Washington Post (@washingtonpost) September 7, 2017

By Sean Sullivan, Washington Post — Repeal and replace, meet Fix and Fine-Tune.

After spending months trying — and failing — to undo major parts of the Affordable Care Act, a growing number of Senate Republicans have turned their attention to a new goal: shoring up the insurance marketplaces under the law the GOP spent seven years fighting tooth and nail.

The effort convened in earnest yesterday when Senate Health, Education, Labor and Pensions Committee Chairman Lamar Alexander (R-Tenn.) kicked off the first of four bipartisan hearings on the subject. His goal: Strike a bipartisan deal by the end of next week.
Read More »


Coping With Cancer

“Healthy, but Still Hurting: Challenges of Cancer Survivorship”

Being cured isn't the end for cancer survivors; long-term challenges can make it difficult to move forwardhttps://t.co/EOTjBG5VSJ pic.twitter.com/jEZbTzQ99W

— AJMC (@AJMC_Journal) September 5, 2017

By Laura Joszt, AJMC.com — The assumption in the United States is that once someone with cancer is cured, done with treatment, and healthy, that they are now okay. However, the reality is that survivors contend with lingering challenges that aren’t visible and make it difficult for them to ask for help or admit they need it.

Samantha Watson, the CEO and founder of The Samfund, was diagnosed first with Ewing’s sarcoma in 1999 and subsequently with myelodysplastic syndrome, and during her treatment it was clear that she was sick.
Read More »

“Survivors of Childhood Cancer More Likely to Experience Financial Burden”

Survivors of Childhood Cancer More Likely to Experience Financial Burden https://t.co/KhPsZLg2jl

— CURE Magazine (@cure_magazine) September 5, 2017

By Brielle Urciuoli, CureToday.com — Many survivors of childhood cancer face financial hardships after moving into adulthood, according to a recent study published in the Journal of Clinical Oncology.

Data was gathered from the Childhood Cancer Study and an age-stratified random sample of 580 survivors of childhood cancer was compared with a control group of 173 siblings of cancer survivors. The survivors were more likely to have out of pocket medical costs that added up to be 10 percent or more of their annual household income.
Read More »


Cancer News

“IBM pitched its Watson supercomputer as a revolution in cancer care. It’s nowhere close”

IBM wanted Watson to beat cancer. But is the supercomputer up to the challenge? https://t.co/RUKbwZUI2B #artificialintelligence pic.twitter.com/ondaAG3Hu4

— STAT (@statnews) September 6, 2017

By Casey Ross & Ike Swetlitz, STAT News — Breathlessly promoting its signature brand—Watson—IBM sought to capture the world’s imagination, and it quickly zeroed in on a high-profile target: cancer.

But three years after IBM began selling Watson to recommend the best cancer treatments to doctors around the world, a STAT investigation has found that the supercomputer isn’t living up to the lofty expectations IBM created for it. It is still struggling with the basic step of learning about different forms of cancer. Only a few dozen hospitals have adopted the system, which is a long way from IBM’s goal of establishing dominance in a multibillion-dollar market. And at foreign hospitals, physicians complained its advice is biased toward American patients and methods of care.
Read More »


More From “What Caught Our Eye” »

Follow us on Twitter: @CancerAdvocacy


Tags: affordable care act, cancer care, Cancer Survivorship, childhood cancer, data collection, exchange plans, financial issues, financial toxicity, repeal and replace, What Caught Our Eye
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Latest News

Advocate Spotlight: Mary Glen, with photo of Mary.

The Not-So-Good Cancer: Mary Glen’s Inspiring Advocacy Journey

November 8, 2023
Advocate Spotlight: Mary Glen Mary Glen was serving as an active-duty Army officer, deployed to South Korea in August 2020. Just…
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Mary McCabe and Phuong Gallagher, Stovall Award winners, with NCCS CEO Shelley Fuld Nasso

NCCS Presents 8th Annual Ellen L. Stovall Awards to Phuong Gallagher and Mary McCabe, RN for Their Innovation and Dedication to Cancer Survivors

October 30, 2023
FOR IMMEDIATE RELEASE  October 30, 2023 Washington, D.C. – The National Coalition for Cancer Survivorship (NCCS) presented the…
Read more
https://canceradvocacy.org/wp-content/uploads/Mary-McCabe-Shelley-Fuld-Nasso-Phuong-Gallagher-Stovall-Awards-2023-web.jpg 628 1200 Kara Kenan https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png Kara Kenan2023-10-30 09:31:232023-10-30 12:35:48NCCS Presents 8th Annual Ellen L. Stovall Awards to Phuong Gallagher and Mary McCabe, RN for Their Innovation and Dedication to Cancer Survivors
picture of National Institutes of Health building in Bethesda, MD

NCCS, Cancer Leadership Council Express Strong Support for NIH Director Nominee Monica Bertagnolli

October 18, 2023
The National Coalition for Cancer Survivorship (NCCS) strongly supports the nomination of Dr. Monica Bertagnolli to be the Director…
Read more
https://canceradvocacy.org/wp-content/uploads/National-Institutes-of-Health-NIH-1200px.jpg 628 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-10-18 11:54:422023-10-18 11:57:58NCCS, Cancer Leadership Council Express Strong Support for NIH Director Nominee Monica Bertagnolli

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.

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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.

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Link to: Survivor Stories

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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.

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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