WCOE: New CMS Oncology Care Model Offers Hope, End of Life Planning, and ACA Questions Answered
The new #Oncology Care Model offers #cancer patients the hope of better care. @canceradvocacy @CMSinnovates https://t.co/uQA76ALOG3 — Shelley Fuld Nasso (@sfuldnasso) February 13, 2015 "What Does It Mean?" commentary by @drdonsdizon via @ASCO https://t.co/mr83TSTiYe clarity in doctor/patient communication — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) February 12, 2015 #WhatMattersMost – To be able […]
The New Medicare Oncology Care Model Will Improve Quality of Care for Cancer Patients
The National Coalition for Cancer Survivorship (NCCS) applauds the release by the Centers for Medicare and Medicaid Services (CMS) of the Oncology Care Model, a multi-payer program with the goal of providing cancer patients with higher quality, better coordinated care, at a lower cost. The Oncology Care Model builds on the current fee-for-service system for […]
Being Mortal Is Far From Being Morbid: Responding to FRONTLINE’s Profile of Surgeon Atul Gawande and End of Life Care
On public television stations nationwide, the award-winning FRONTLINE series aired a program on February 10th based on the work of noted surgeon and writer, Atul Gawande. In addition to Gawande’s many clinical and surgical talents, he has the rare gift of writing articles and books for all of us, no matter what our level of […]
Revisiting the Second Principle of the Imperatives for Quality Cancer Care—Treating the Whole Person
This month, as part of the 20 Years Later series, we are revisiting the second principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. The second principle states, “Quality cancer care should be available in a health care system whose standards and guidelines are developed in consideration of treating the whole person […]
WCOE: World Cancer Day, “Dying Shouldn’t Be So Brutal,” and More on Precision Medicine
Hard for clinicians to give up old practices, even when new evidence reveals that those practices offer little value: https://t.co/n3vFLx199y — Peter Ubel (@peterubel) February 6, 2015 "Dying Shouldn't Be So Brutal" new @nytopinion series on End-of-Life that I will also be writing for–soon, I hope. https://t.co/xughvb75Lh — TheresaBrown (@TheresaBrown) February 3, 2015 https://twitter.com/LlyOncOnCanvas/status/563019956565331968 We […]
NCCS Policy Comments: FDA’s Framework for Regulatory Oversight of Laboratory Developed Tests (LDTs)
NCCS submitted comments to the Food and Drug Administration (FDA) on the Draft Guidance: Framework for Regulatory Oversight of Laboratory Developed Tests (LDTs). We support the FDA’s efforts to develop a strong regulatory framework for LDTs and commend the agency for the open and transparent process it has pursued in developing the framework and receiving […]
President Obama Announces New Precision Medicine Initiative
I was honored to represent NCCS along with leaders in the health care community at the White House on Friday when President Obama announced his new Precision Medicine Initiative. Introducing the President was 19-year-old Harvard Student Elana Simon, who researched her own liver cancer and helped identify the genetic cause of the rare disease. The […]
The Genetic Information Nondiscrimination Act (GINA)
This post is part of a special blog series: “The Imperatives for Quality Cancer Care: 20 Years Later.” Read more from this series. The first imperative states, “People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, […]
WCOE: Obama takes on Precision Medicine, Palliative Care ≠ Hospice, Quantity and Quality of Life, CLRC News, Medicare Payment Reform, and Breast Cancer Patient Communication
Don't miss President Obama speak on his #PrecisionMedicine Initiative at 11:10am ET → https://t.co/zcSZULoCno — White House OSTP 44 (@WHOSTP44) January 30, 2015 What is President Obama's 'precision medicine' plan, and how might it help you? https://t.co/T8sXHBGWm0 — Shelley Fuld Nasso (@sfuldnasso) January 30, 2015 Beautiful post by @drdonsdizon. Palliative care does not mean hospice […]
Second Anniversary of State Exchanges: Affordable Options for Cancer Patients, But the Devil Remains in the Details
Cancer Policy Matters Guest Post by Tanisha Carino, Executive Vice President, Avalere Health Just one year after the launch of the state exchanges, we have seen a remarkable drop in the number of Americans without health insurance. By the end of 2015, Avalere projects 10.5 million people will be enrolled in the exchanges, which will […]
NCCS Joins Colleagues in Submitting Comments to NIH on the Use of a Single Institutional Review Board for Multi-Site Research
Today, NCCS joined colleagues in the cancer community in submitting comments to the National Institutes of Health (NIH) on the Draft NIH Policy on the Use of a Single Institutional Review Board for Multi-Site Research. We commend the National Institutes of Health (NIH) for taking this step to reduce duplication and inefficiency in the initiation […]
The Impetus for Creating the “Imperatives for Quality Cancer Care”
The impetus for creating an issue paper entitled “Imperatives for Quality Cancer Care” (Imperatives) came from a desire for the National Coalition for Cancer Survivorship (NCCS) to have a snapshot of the state of both the art and science of quality cancer care for people diagnosed with cancer across three domains—psychosocial impacts of the diagnosis; physiological […]
The Affordable Care Act & Cancer Survivorship (INFOGRAPHIC)
The first principle of the Imperatives for Quality Cancer Care states, “People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status.” The Affordable Care Act has impacted these issues more than any other legislation passed in the […]
Chronic Myelogenous Leukemia (CML) Survivor Lisa Gray Talks About Her Experiences with the Affordable Care Act
The Affordable Care Act (ACA) is making great strides in ensuring that, “People with cancer have the right to a system of universal health care in which access is not precluded because of preexisting conditions, genetic or other risks factors, or employment status.” Post by Lisa Gray as part of the “Imperatives for Quality Cancer Care: […]
NCCS CEO Shelley Fuld Nasso Introduces Our New Blog Series
This year, NCCS and a diverse group of guest contributors will revisit the Imperatives for Quality Cancer Care as published in 1995 and evaluate progress made to date in achieving the principles proposed and ensuring that they guide the cancer care experience. Each month, we will review and discuss one of the 12 principles. We […]
Announcing a New Blog Series: “The Imperatives for Quality Cancer Care” 20 Years Later
Read posts from the new blog series: “The Imperatives for Quality Cancer Care” 20 Years Later In 1995, NCCS published Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), the culmination of an inclusive, community-based process. Adopted at the First National Congress on Cancer Survivorship, the Imperatives represented the community’s first look at […]
WCOE: Attention for Precision Medicine, Cancer Statistics, Coming to Terms, and the Challenge of Paying for Drugs
Precision medicine= right treatment, right person, right time. Excited @WhiteHouse is shedding light on this important issue. #SOTU — ACSCAN (@ACSCAN) January 21, 2015 Predictions for 2015 include 1.6 million new cases of cancer, with 589,000 cancer deaths https://t.co/k8GDabuVv6 — Oncology Nursing News (@OncNursingNews) January 22, 2015 https://twitter.com/NikiBarrPhD/status/558255409862279170 Obama's Precision Medicine Initiative: Paying For Drugs […]
NCCS Joins Colleagues in Submitting Comments to HHS Regarding Proposed Rule on Notice of Benefit and Payment Parameters for 2016
In late December 2014, NCCS joined colleagues in the Cancer Leadership Council in submitting comments to the Department of Health and Human Services (HHS) regarding the proposed rule on notice of benefit and payment parameters for 2016. Many cancer survivors have purchased qualified health plans (QHPs) through the health insurance exchanges and their access to […]
NCCS Joins Colleagues in Submitting Comments to National Association of Insurance Commissioners on the Health Benefit Plan Network Access and Adequacy Model Act
Last week, NCCS joined colleagues in the Cancer Leadership Council (CLC) in submitting comments to the National Association of Insurance Commissioners (NAIC) on the Health Benefit Plan Network Access and Adequacy Model Act. The groups collectively commend the NAIC Regulatory Framework (B) Task Force for including provisions within the act that would offer patients some […]
WCOE: New IOM Report, Control Issues, Tempting Treatment Options, and Patients ‘Right to Try’ New Drugs
New IOM Report: Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risks https://t.co/neRjKfx8ma #datasharing — NASEM Health (@NASEM_Health) January 14, 2015 "Cancer survivors plagued by lack of personal control" https://t.co/9tRPQrbdzs via @reuters "a wish to return to 'normal'" — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) January 14, 2015 Doing More for Patients Often Does […]
WCOE: FDA News, Medical Debt, the ACA, and Honoring Jessie Gruman
Why The FDA Panel's Nod To Sandoz's Filgrastim (Zarzio) Is Good News For Patients, by @ElaineSchattner – https://t.co/Dle8xM2G9I — Elaine Schattner MD, MA (@ESchattner) January 8, 2015 NEW Policy Insight: High cost sharing can contribute to medical debt. Transparency can help consumers avoid it: https://t.co/p4uh62kkVd — KFF (Kaiser Family Foundation) (@KFF) January 8, 2015 Amid […]
The National Coalition for Cancer Survivorship Establishes the Jessie Gruman Patient Engagement Award
For more than twenty years, the National Coalition for Cancer Survivorship (NCCS) had the privilege of adapting our friend and colleague, Jessie Gruman’s important work into the development of the cancer policy work that we engage in. Jessie’s vision of patient engagement was always ahead of its time, and her books and blogs and participation […]
The Year in Cancer Policy
Thank you for making the first year of our blog a success. To celebrate, we’re looking back at the meaningful cancer and health policy news and stories from 2014. In 2014, we launched the Cancer Policy Matters Blog, a resource for people that are interested in cancer and health policy issues. Featuring guest blogs, videos, […]
WCOE: Warlike Metaphors, a Report out of the San Antonio Breast Cancer Symposium, Discussing Costs, and Other News
The stories that caught our eye this week included an article that points out the use of warlike metaphors to describe one’s experience of cancer as one that may prevent patients from seeking aggressive treatment. Prior research has concluded that warlike metaphors may lead one to feel like a failure or guilty that they didn’t fight […]
WCOE: Cost of Cancer Care, Adopting a Shorter Course of Treatment for Some Breast Cancer Patients, and Lung Cancer Screening
In “The Punishing Cost of Cancer Care,” Dr. Mikkael Sekeres describes the difficult conversations he has with patients regarding the cost of cancer treatments and how reviewing the economic risks of treatment is now a standard part of his informed consent process. In the vignette he provides, one patient considers whether the cost of treatment outweighs the potential […]
Guest Post: Are Right to Try Laws a Good Idea?
Are right to try laws a good idea? During 2014, they began appearing throughout the country, first in Colorado, then in Missouri and Louisiana, and, just recently, in Michigan and Arizona. Similar legislation is now or will soon be under consideration in New Jersey, Delaware, Nevada, Texas, and Wyoming. At first glance, these laws may […]
We’re Going Digital: Last Week to Order Cancer Survival Toolbox – Blood Cancer Programs in Audio CD
TIME’S RUNNING OUT: Cancer Survival Toolbox – Blood Cancer Programs – Free Shipping on Bulk Audio CD Orders The National Coalition for Cancer Survivorship (NCCS) is pleased to announce that the Cancer Survival Toolbox© is going fully digital! If you would like to order any audio CDs of the following blood cancer programs, please do […]
NCCS Policy Comments: Recommending Cancer Survivorship as a Topic for FDA Patient-Focused Drug Development Meetings
Last week, NCCS submitted comments to the U.S. Food and Drug Administration (FDA) regarding the series of patient-focused drug development meetings that have been convened and the list of disease topic meetings scheduled for 2016-2017. In 2013, FDA convened a patient-focused drug development meeting related to lung cancer and has plans to convene a breast […]
NCCS Offers Policy Comments: Strategies for Increasing Patient Participation in FDA Review Activities
The Food and Drug Administration Safety and Innovation Act (FDASIA) authorized a patient-focused drug development program, and in the years since enactment, the U.S. Food and Drug Administration (FDA) has implemented certain initiatives of the patient-focused program. In recent weeks, FDA has requested feedback regarding patient-focused activities to date and recommendations about future efforts and […]
WCOE: Comparing Health Plans, Motivating Change in Clinical Practice, the Sunshine Act, and Clinical Trials Protocols
Charles Ornstein, Lena Groeger and Ryann Grochowski Jones from ProPublica analyzed changes in plans under the Affordable Care Act (“Big Changes in Fine Print of Some 2015 Obamacare Plans”), and ProPublica developed an app that allows consumers in 34 states to compare premiums, deductibles, and other costs under 2014 and 2015 plans. If consumers choose […]
Guest Blog: Fighting Cancer Means Fighting for Cancer Data
The second most common cause of death, cancer touches all of us. According to the Institute of Medicine, the numbers are only projected to increase and care costs are skyrocketing.Yet despite its toll, it’s virtually impossible to answer the question, “Who provides high quality cancer care?” This hinders patients, providers, payers, policymakers, and others to […]
NCCS Responds to Two Recent Articles Covering the Complexities of Transparency and Shared Decision-Making Issues
Two stories in last week’s New York Times illustrate the complexities of the changing healthcare marketplace. They both describe discrete issues that beleaguer and hinder the transparency and shared decision-making that we at the National Coalition for Cancer Survivorship (NCCS) call for when patients need to make an informed decision about their care. We comment […]
Guest Post by Peter Bach: Lung Cancer Awareness Month Brings a Long-Awaited Nod to Lung Cancer Screening
Guest post by Peter Bach, MD, MAPP, Director of Memorial Sloan Kettering’s Center for Health Policy and Outcomes. Every November is lung cancer awareness month, but this November is on track to being a pretty special one. Lung cancer physicians and public health professionals breathed a collective sigh of relief when Medicare gave a […]
Speaking to the Needs of Patients Living with Advanced Cancers and Honoring Cancer Stories with Cancerversary
Recently, NCCS had the honor of celebrating the work and advocacy of two amazing individuals. Susan Gubar, the author of The New York Times blog “Living with Cancer,” received the Natalie Davis Spingarn Writer’s Award, and Lillie Shockney was awarded the Catherine Logan Award for Service to Survivorship. We encourage those interested in survivorship issues […]
WCOE: The Burden of Caregiving, Financial Incentives, Unnecessary Services for Medicare Beneficiaries, and Medicaid Reform
In “Seeing the ‘Invisible Patient,’”Jane Gross addresses the burden of caregiving and how often caregivers’ health, both physical and mental, is overlooked. Ms. Gross refers to an article published in the Journal of the American Medical Association (JAMA) that provides recommendations for lessening the burden and provides a list of questions that doctors and other health […]
NCCS to Honor Two Inspiring Advocates at Focus on the Care Event in Washington, DC
While We Hope for a Cure, We Must Focus on the Care. Please join us on Wednesday, November 19, 2014, as we celebrate recent accomplishments and recognize two remarkable people who have made extraordinary contributions to improving the quality of cancer care and to elevating the conversation about living well with cancer. What: Focus on […]
Guest Post: Forgotten Survivors—Supporting the Needs of Patients with Advanced Cancers
Guest post by Lillie D. Shockney, RN, BS, MAS, Director of Johns Hopkins Breast Center and Cancer Survivorship Programs. On November 19, 2014, NCCS will present the Catherine Logan Award for Service to Survivorship to Lillie at the Focus on the Care evening reception in Washington, DC. Though more and more cancer patients are being diagnosed […]
The National Cancer Legal Services Network Discusses How to Address Legal Needs of Survivors
Attorneys from the National Cancer Legal Services Network (NCLSN) met in New York on November 6-7, 2014 to discuss how to address the legal needs of cancer survivors. The NCLSN was established and is coordinated by LegalHealth, a division of the New York Legal Assistance Group. NCCS has been an instrumental partner in the NCLSN, which […]
WCOE: Medicare’s Draft Decision for Lung Cancer Screenings, Immunotherapy, Breast Cancer Screening
Several items in the news this past week are of interest to NCCS. The article by Sabrina Tavernise in The New York Times reporting on Medicare’s draft decision to pay for lung cancer screenings for older, long-time smokers up to age 74 is likely to continue to spark some controversy. This proposal will be open […]
WCOE: Brittany Maynard’s Death with Dignity, Election Results and the ACA, and Susan Gubar’s “Not Talking About Medical Mistakes”
Brittany Maynard, a 29-year-old woman with brain cancer who became an advocate for the “death with dignity” movement took her life this week. Marcia Angell wrote about “The Brittany Maynard effect: How she is changing the debate on assisted dying” in The Washington Post, as did Sarah Kliff in “Brittany Maynard and the debate about […]
WCOE: Brookings Event Examines Cost and Value, the ACA, and Accounting Practices in Medical Billing
In “Adult Conversation on High-Priced Drugs? Don’t Hold Your Breath (But Hang in There)…,” Rob Cunningham provided a summary of a recent event held by the Brookings Institution that examined the cost and value of biomedical innovation. The event focused predominately on the controversial price of Sovaldi, a drug that has a cure rate of over 90% […]
Guest Post: Arizona Republic Article Shows Self-referral Abuse Persists
A recent Arizona Republic article, “Medical ‘self-referral’ practice raises conflict of interest questions”, exposes serious concerns about self-referral abuse in prostate cancer treatment in Phoenix and across the country. It tells a particularly troubling story about an elderly prostate cancer patient with poor vision whose urologist steered him unnecessarily to make long drives to the […]
A Tribute to Survivorship and a Happy Cancerversary to Our Friend and Colleague
Many of us who are cancer survivors mark our calendars with days, months, and fortunately for some of us, with years. We at NCCS have used the word “Cancerversary” to acknowledge these passages of time, i.e., the day of diagnosis; the last day of treatment; the first month, the first year, and decade(s). One such […]
An Updated Survivorship Care Planning Template and Identifying Barriers to Implementation
Recently, the American Society of Clinical Oncology (ASCO) released an updated cancer survivorship care planning (SCP) template—news that was captured by several medical online news outlets including Healio, Medscape, and Cancer.net. Survivorship care planning is a process of cancer care delivery that NCCS has advocated for over the last 20 years. In follow-up to a […]
WCOE: ACA Open Enrollment, Drug Prices and Innovation, Breast Cancer Awareness and More
This week, several articles caught our eye: Amy Berman shared her own experience “Choosing Wisely” when she opted for a single dose of radiation therapy to alleviate pain from bone metastases, instead of a course of 10 treatments. The Kaiser Family Foundation reported that 89% of uninsured individuals polled are not aware that the next open […]
Guest Post: Timing, Tools, Evaluation, and Documentation: Implementing Screening Programs for Psychosocial Distress
Guest Blog by Carole McCue, RN, MS, CNE According to a recent study, 75 percent of cancer patients with depression are not treated. The integration of psychosocial care into the routine care of all patients with cancer is now being recognized as a new standard of care and the National Comprehensive Cancer Network, (NCCN) developed […]
WCOE: Matthew Herper Asks the Question “What Is This Worth to You?”
This week, in an article by science and medicine reporter Matthew Herper titled “A Drug Regrew a Little Girl’s Missing Bones. How Much Should That Cost?” from Forbes caught our eye. Evie Elsaesser was born with a rare, life-threatening genetic disease causing low levels of hypophophatasia— a chemical important for bone hardening—in her blood. Although […]
Ellen Stovall Presents the Patient Perspective on Overtreatment at the ASCO Quality Care Symposium in Boston
On October 17th, NCCS Senior Health Policy Advisor Ellen Stovall will be presenting the patient perspective on overtreatment at the ASCO Quality Care Symposium in Boston. Ellen will be discussing the Choosing Wisely® campaign, an initiative of the ABIM Foundation intended to help physicians and patients engage in conversations to reduce overuse of tests and […]
WCOE: Elevating the Discussion on Living Well Until the End of Life
What caught our eye this week was extensive coverage of Dr. Atul Gawande’s new book, Being Mortal: Medicine and what Matters in the End. In it, he examines end-of-life care in our country, and he weaves in personal stories from his own family and his patients, as well as interviews of hundreds of patients, families, […]
Turning the Tide Against Cancer: NCCS CEO Presents Survivor Perspective on Incentive Structures and Innovation
We have a lot of bad incentives built into our system, says @sfuldnasso at #T3Cancer — ThinkWellPoint (@ThinkWellPoint) “We need truth telling so patients understand the full influences on their care” Shelley Fuld Nasso @CancerAdvocacy #T3Cancer — CancerSupportCm (@CancerSupportCm) We need to ask patients what’s important to them in order to match their goals & […]
Two Free Apps Help Manage Cancer Symptoms and Coordinate Care
Two new free mobile apps help people facing cancer to better manage the disease by learning how to deal with certain symptoms, and coordinate their care after cancer treatment has ended. Self-Care During Cancer Treatment is an app provided by Empowerment and Action for Cancer Care, an alliance between WellPoint and Genentech. This app provides […]
Celebrating Hope and Community at the Dempsey Challenge in Lewiston, Maine
Two weeks ago I was able to represent NCCS at the Dempsey Challenge with the Amgen Breakaway from Cancer partners. Breakaway from Cancer (BFC) is a national initiative founded in 2005 by Amgen which seeks to increase awareness of the important resources available to people affected by cancer—from prevention to education and support to financial […]
WCOE: The Open Payments Data Release
This week, coverage of the release of data on payments by drug and device manufacturers to physicians caught our eye. The Centers for Medicare and Medicaid Services (CMS) released the first round of Open Payments data as mandated by the Physician Payments Sunshine Act provisions of the Affordable Care Act in 2010. The Sunshine Act […]
Incremental Improvements Are Not Enough
Two years ago, the world lost an extraordinary person, my dear friend Dr. Brent Whitworth. He was a few days shy of his 42nd birthday when he learned of his diagnosis – stage IV kidney cancer – and he was devastated. He had surgery at a major cancer hospital and then entered a clinical trial […]
WCOE: Over-Diagnosis, Over-Treatment, and a Broader View of Health
In a Health Affairs blog post entitled, “Reconceptualizing Health and Health Care: Why Our Cancer Care Delivery System Is In Crisis,” Carolyn Payne and William Dale suggest that the health care system should look at patients more holistically, rather than focus on a single disease such as cancer. They cite last year’s report by the […]
Guest Post: Study Reports Nurse Navigators Make a Difference
As a cancer survivor and nurse educator, I am always interested in how we can advocate for the care of cancer patients and recommend policy changes. Recently, I had the occasion to experience the impact a nurse navigator can have in assisting patients. Patient navigation is a program designed to provide patients with a map […]
WCOE: “Why I Hope to Die at 75” and a New IOM Report on Quality and End of Life Preferences
Are we finally ready to address the repeated recommendations in these series of reports and to make it possible for our healthcare system, providers of care, and our religious leaders to be more ready to assist people in making difficult decisions about how to die well? One of the articles that caught our eye this […]
NCCS Offers Comments to the Centers for Medicare and Medicaid Innovation on their proposed Oncology Care Model
Click here to view all of NCCS’ policy comments. Recently, NCCS submitted comments to the Center for Medicare and Medicaid Innovation on its proposed Oncology Care Model (OCM), an episode-based payment model that emphasizes care planning and coordination and cancer care system transformation. The OCM represents an important step forward in encouraging patient-centered cancer care, […]
WCOE: Dr. Susan Love Discusses the Pros and Cons of BRCA Screening
There are as many questions as there are differences of opinion about what constitutes the best evidence when it comes to appropriate cancer screening and then appropriate treatment once a diagnosis of cancer is made. Patients who read about current research findings face the dilemma of sorting through these differences of opinion and considering how […]
NCCS and CLC Policy Comments: 2015 Physician Fee Schedule
Recently, NCCS joined colleagues in the Cancer Leadership Council (CLC) in submitting comments to the Centers for Medicare and Medicaid Services (CMS) on the 2015 Physician Fee Schedule, which governs payments to physicians for services provided to Medicare patients. NCCS and the CLC have applauded efforts by CMS to strengthen care planning and coordination through […]
