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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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        • Subscribe to NCCS Updates
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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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FDA Building

NCCS Joins Letter Highlighting Impact of Gov’t Shutdown on FDA’s Work on Behalf of Patients

January 22, 2019/in Cancer News, Cancer Policy Blog, NCCS News Issue Statements, NCCS News
The National Coalition for Cancer Survivorship (NCCS) joined with 46 other patient and provider organizations to call attention to the impact the government shutdown is having on the work of the Food and Drug Administration (FDA).”On behalf of patients across this country, we are greatly concerned that the agency is currently not fully funded, and thousands of vital FDA employees are not working or able to operate at full capacity. While we applaud Commissioner Gottlieb, FDA leadership, and ‘essential staff’ for truly heroic work to keep many aspects of its mission functioning, we fear that this continued shutdown not only puts the current health and safety of Americans at risk, but has begun to put future scientific discovery and innovation in jeopardy.”Read the letter below or download here. (right-click, save as)


January 22, 2019

President Donald J. Trump
The White House
1600 Pennsylvania Ave, NW
Washington, DC 20500

The Honorable Nancy Pelosi
Speaker
U.S. House of Representatives
Washington, DC 20510

The Honorable Kevin McCarthy
Minority Leader
U.S. House of Representatives
Washington, DC 20515

The Honorable Mitch McConnell
Majority Leader
U.S. Senate
Washington, DC 20510

The Honorable Chuck Schumer
Minority Leader
U.S. Senate
Washington, DC 20510

Dear Mr. President, Speaker Pelosi, Leader McConnell, Leader Schumer, and Leader McCarthy,

The undersigned organizations, representing millions of American patients, caregivers, healthcare providers, and researchers write to raise alarm at the continued government shutdown – particularly its impact on the U.S. Food and Drug Administration (FDA). The work of the FDA to protect the health and wellbeing of our nation cannot be overstated. The agency regulates one quarter of the U.S. economy, ensures a safe food supply, protects patients from contaminated and unsafe medical products and, importantly, is the catalyst for expediting lifesaving therapies to patients.

On behalf of patients across this country, we are greatly concerned that the agency is currently not fully funded, and thousands of vital FDA employees are not working or able to operate at full capacity. While we applaud Commissioner Gottlieb, FDA leadership, and “essential staff” for truly heroic work to keep many aspects of its mission functioning, we fear that this continued shutdown not only puts the current health and safety of Americans at risk, but has begun to put future scientific discovery and innovation in jeopardy.

The ongoing government shutdown forces the FDA to make difficult choices regarding to which essential functions its greatly reduced resources are directed. These are decisions that never should have to be made—the health and safety of Americans today should never be weighed against the prospect of new life-saving therapies for patients. Tragically, that is what is happening.

We ask that the President and Congress act immediately to bring the FDA back to its full capacity. Americans’ health and patients’ futures are at stake.

Sincerely,

Acromegaly Community
Addario Lung Cancer Medical Institute
AIM at Melanoma
AliveAndKickn
Alliance for Aging Research
American Academy of Pediatrics
American Society of Clinical Oncology (ASCO)
American Society of Gene & Cell Therapy
Annie Appleseed Project
Association of American Cancer Institutes (AACI)
Bonnie J. Addario Lung Cancer Foundation
Bridge the Gap – SYNGAP Education and Research Foundation
CancerCare
Children’s Cause for Cancer Advocacy
Cutaneous Lymphoma Foundation
Facing Our Risk of Cancer Empowerment (FORCE)
Fight Colorectal Cancer
Friends of Cancer Research
Institute of Clinical Bioethics, Saint Joseph’s University
Kidney Cancer Action Network (KCAN)
Leukemia & Lymphoma Society
Living Beyond Breast Cancer
Lung Cancer Alliance
LUNGevity Foundation
Lupus and Allied Diseases Association, Inc
Lymphoma Research Foundation
Melanoma Research Foundation (MRF)
Men’s Health Network
National Alliance on Mental Illness
National Coalition for Cancer Survivorship (NCCS)
National Consumers League
National Multiple Sclerosis Society
National Organization for Rare Diseases (NORD)
National Osteoporosis Foundation
National Patient Advocate Foundation
NTM Info & Research, Inc.
Ovarian Cancer Research Alliance
Pancreatic Cancer Action Network
Patients for Affordable Drugs
Personalized Medicine Coalition
Prevent Cancer Foundation
Research Advocacy Network
Research!America
St. Baldrick’s Foundation
Stand Up To Cancer
Swifty Foundation


Related Posts

https://canceradvocacy.org/blog/nccs-expresses-reservations-effectiveness-cms-drug-pricing-proposal/

https://canceradvocacy.org/blog/nccs-joins-clc-letter-hhs-drug-pricing-blueprint-american-patients-first/

Tags: cancer care, FDA, issue statement
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Latest News

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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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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…
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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…
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Link to: Cancer Policy and Advocacy Team (CPAT)

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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