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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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        • Make A GiftSupport our mission of quality cancer care for all with a gift to NCCS.
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    • 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.
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        • 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.
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        • 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.

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

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        • Cancer Survival ToolboxA free, award-winning audio program created by leading cancer organizations to help people better meet & understand the challenges of their illness.
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Health Care Roundup: Association Health Plans and ACA Repeal; Benefits of Exercise for Childhood Survivors; NIH Grant System; and More

June 22, 2018/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Financial Toxicity, Health Equity, Pre-Existing Conditions NCCS News

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.

Subscribe to our email list and receive these updates in your email box each week »


HEALTH CARE HIGHLIGHTS

Justifiably, most of the country’s attention has recently focused on a heartbreaking and far more urgent issue.  It was in this media and political whirlwind that several health care developments flew largely under the radar this week that could have widespread consequences for millions of patients.

Association Health Plans Rule Finalized

The association health plans (AHP) rule was finalized by the Labor Department as the Trump administration continues its efforts to strike down the Affordable Care Act (ACA) through regulatory action. While marketed as a way for small businesses and trade groups to sell cheaper coverage, the rule allows plans NOT to cover the ACA’s 10 “essential health benefits.” NCCS joined with the Cancer Leadership Council and other patient advocacy organizations in a statement opposing the rule, saying:

“These plans will result in a segmentation of the insurance market and will leave many cancer survivors – who have a pre-existing condition from the day of diagnosis – scrambling to find affordable and adequate insurance offerings in the individual market.”

Worth highlighting is the Washington Post’s “Health 202”:

“The L.A. Times found in a recent analysis that more than 95 percent of health-care groups that filed comments on the proposed rule expressed serious concern or opposed it. Furthermore, not even one group representing patients or industry submitted comments in support of the association plan rule, the Times found. ’Basically anybody who knows anything about health care is opposed to these proposals,’ Sandy Praeger, Kansas’s Republican former state insurance regulator told the Times. ‘It’s amazing.’”

ACA Repeal Proposal

Conservative groups revealed another proposal in a further attempt to repeal the ACA.  The latest proposal is very similar to the previous ones, especially in the harm it would do to millions of Americans.  As laid out by the Center for Budget and Policy Priorities (CBPP), it would “cause millions to lose health coverage, end Medicaid expansion, and allow states to eliminate or weaken protections for people with pre-existing conditions.” It also would hand more control over health care spending to states, a move endorsed at the press conference to introduce the proposal by Kentucky Governor Matt Bevin and Mississippi Governor Phil Bryant.

However, as Sarah Lueck with CBPP points out, Kentucky ranks 42nd and Mississippi ranks 51st in overall health system performance in a Commonwealth Fund scorecard. While the current consensus is that this has little chance of passing, it is important to know that this is out there and that groups and individuals haven’t given up hope to repeal the ACA.

So when the latest #ACA repeal attempt (Santorum-Heritage) gets a presser tomorrow, the two governors pushing for giving more health care power to states rank 42nd (KY) and 51st (MS) in overall health system performance. Do I have that right? https://t.co/Ef4eYOPlWE

— Sarah Lueck (@sarahL202) June 19, 2018

GOP 2019 Budget Proposal Unveiled

If you believe the phrase “actions speak louder than words,” then the House GOP budget unveiled this week spoke loud and clear. As Bloomberg reported, the budget proposal was meant “to send a message to [House GOP] core supporters that repealing Obamacare, cutting taxes and partially privatizing Medicare remain high on their agenda.” Namely, it gives the same reconciliation authority as last year “to let congressional committees try once again to repeal the Affordable Care Act and enact a new tax law.” Again, this doesn’t have much chance of passing before the mid-term elections, but the budget process could be used in a lame-duck session AFTER the election to pass ACA repeal legislation.


CHART OF THE WEEK

Source: "The big picture: Why health care costs so much", from Axios.com
(Click chart to see full size)
Axios.com created a state-by-state chart of average monthly premiums for ACA marketplace plans over time, 2014-2018.


IMPORTANT READS

For Survivors of Childhood Cancer, Walk

Via New York Times

There are many studies and papers looking at the benefits of low to moderate exercise for cancer patients and survivors. This article highlights the benefits of regular exercise, “such as walking for an hour, improved long-term survival in those who had childhood cancers.” Read More »

Why the Medical Research Grant System Could Be Costing Us Great Ideas

Via New York Times

When we advocate for funding for the National Institutes of Health (NIH), we assume that the peer review system is outstanding and that NIH funds will be used well as a result of this system. We have in the past called NIH peer review the “gold standard” for peer review.

However, this opinion piece about NIH peer review by Aaron Carroll in the New York Times offers a different perspective. He concludes that the system favors low-risk proposals and proposals from older scientists and white men, suggesting that we may be missing out on funding good science because of the biases of the system. He offers some proposed reforms of the peer review system as well.
Read More »

Bipartisan group of governors denounces Trump move on pre-existing conditions

Via The Hill

It is important to point out that not all governors agree with positions stated above by the governors of Kentucky and Mississippi.  A bipartisan group of nine governors issued a statement that “called on the Trump administration to reverse its decision to argue in court that ObamaCare’s pre-existing condition protections should be overturned.”  The statement said in part, “The administration’s disappointing decision to no longer defend this provision of federal law threatens health care coverage for many in our states with pre-existing conditions and adds uncertainty and higher costs for Americans who purchase their own health insurance.” Read More »


Tags: aca update, affordable care act, cancer care, Cancer Survivorship, childhood cancer, financial issues, pre-existing conditions, What Caught Our Eye
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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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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