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 […]
WCOE: Paying Doctors to Talk About End-of-Life Care
In The New York Times article, “Coverage for End-of-Life Talks Gaining Ground,” Pam Belluck writes about efforts to reimburse physicians for having difficult but critically important discussions with patients about the kind of care they wish to receive at the end of life. “Five years after it exploded into a political conflagration over ‘death panels,’ […]
WCOE: Patient Empowerment in Discussing End-of-Life Care
In Elana Gordon’s segment with NPR titled, “Hello, May I Help You Plan Your Final Months?” she reports on the work of Vital Decisions, a company that provides counseling via phone to beneficiaries of participating insurance companies in efforts to facilitate discussions about end-of-life care. Counselors often cold-call patients after attempts to reach them via postal […]
WCOE: Challenges of Care Coordination in a Fragmented Health Care System
Several articles caught our eye this week about the complexities of our reimbursement system and the lack of incentives in our current system for the kind of care patients value and need – time with their physicians and help in coordinating their care among providers in a fragmented system. Coordinating care for people with cancer and […]
NCCS Invites Washington, DC Residents to Create a Community Art Mural to Honor Those Touched by Cancer
“When a picture of a butterfly appeared… On my mom’s hospital room door, I knew. The next day, My mom, a never-smoker, Passed away from lung cancer. Months later, I became a runner. I ran away from the grief. One day, I ran through a path that released butterflies. From that moment, I started running […]
Focus on the Care Video: Emily Lee Discusses Emerging Payment Models in Cancer Care
Emily Lee, a policy analyst at the Center for American Progress (CAP), spoke to us at the NCCS Cancer Policy Roundtable in April of 2014. Lee was a speaker on a panel titled “Bundles or Episodes of Care: Are These Payment Models Workable for Cancer Care?” which discussed the development of models for cancer care […]
The Difficult Question of When to Stop Treatment
Yesterday, I stumbled across the Twitter chat #whentostop, hosted by the Oncology Nursing Society (ONS), addressing one of the most difficult questions anyone with cancer has to face: when is it time to stop treatment? I am new to Twitter chats, though I have lurked during the Healthcare Leader (#hcldr) and the Breast Cancer Social Media (#bcsm) chats and have been impressed […]
WCOE: Different Treatment Options Require Consideration of Patient Preferences, and What We Can Learn from Price Transparency in Veterinary Medicine
In “Breast Cancer Chemotherapy Varies Widely: Study Raises Questions About Early Treatment Choices,” Dr. Elaine Schattner, contributor to Forbes, directs readers to a recently released study that compares the risk of hospitalization between patients with early-stage breast cancer who received different chemotherapy regimens. The study also presented that the six most commonly administered chemotherapy regimens […]
Addressing the Gaps in Treatment Planning and Coordination with the PACT Act (H.R. 2477)
Recently we were reminded of the importance of the Planning Actively for Cancer Treatment (PACT) Act, H.R. 2477 as we participated in the Lymphoma Research Foundation’s (LRF) Lymphoma Education and Advocacy Partners (LEAP) webinar focused on survivorship and care coordination. NCCS has identified the PACT Act as one of our primary public policy priorities as […]
WCOE: Making Hard Choices and the Impact of Price Transparency
In “Living with Cancer: Difficult Choices,” another installment in her series in The New York Times, Susan Gubar writes about the difficulty of deciding between treatment options when there is no obvious answer. Even patients who have a strong understanding of their disease may lack the expertise to evaluate different options, particularly when the options […]
Exploring Access to Unapproved Therapies
In a series entitled, “When Unapproved Drugs Are the Only Hope,” Meg Tirrell of CNBC takes an in-depth look into the complicated issue of patient access to drugs that have not yet been approved by the FDA, also known as “compassionate use” or expanded access programs (EAPs). She presents the story of 15-year-old Nathalie Traller, […]
WCOE: Improving Quality for Patients by Delivering and Paying for Care Differently
In two America Tonight segments entitled, “Is America treating cancer the wrong way?” Michael Okwu of Al Jazeera America delves into the cost of cancer care and an experiment in delivering care differently to reduce costs and improve quality for patients. Okwu interviews Dr. Arnie Milstein, director of the Stanford Clinical Excellence Research Center (CERC) […]
Balancing Patient Protections and Innovation: NCCS Applauds FDA Action to Regulate Laboratory-Developed Tests
The National Coalition for Cancer Survivorship (NCCS) commends the Food and Drug Administration (FDA) for taking critical steps to ensure that the promise of personalized cancer medicine is realized and that cancer patients can rest assured that they are receiving treatments consistent with their diagnoses. Today, FDA notified Congress that it will issue a draft […]
WCOE: Planning for Hospice, Difficult Conversations, and Second Opinions
As avid followers of Susan Gubar’s series in The New York Times on living with cancer, we read her most recent installment, “Living with Cancer: A Tour of Hospice” with interest. She described her fear of the pain, anxiety, and dementia that can accompany dying and her desire to avoid excessive treatment at the end of life. […]
Defining Cancer Survivorship
Living with, through, and beyond a cancer diagnosis– In 1986, the founders of NCCS saw a need for language that truly told the story of life after a cancer diagnosis. At the time, there were a growing number of people living beyond their cancer diagnosis and treatment. Many of them were experiencing an array of […]
WCOE: UnitedHealthcare’s Expanded Participation and Consumer Understanding of Insurance Basics
In “Biggest Insurer Drops Caution, Embraces Obamacare,” Jay Hancock of Kaiser Health News reported on UnitedHealthcare’s decision to offer plans on the exchanges in 24 states next year, up from four states this year. Hancock writes, “The move represents a major acceleration for the company and a bet that government-subsidized insurance, sold online without regard […]
Mourning the Loss of Patient Advocate Jessie Gruman
We are very sad to hear of the passing of Jessie Gruman, the Founder and CEO of the Center for Advancing Health. Jessie was an inspiring and passionate advocate for patients, and her work has touched many facing the challenges of a chronic illness. We were recently honored to celebrate Jessie’s work at the 2013 […]
New Deadline for 2014 Lilly Oncology On Canvas Art Competition Announced
The Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition and Exhibition competition was created by Lilly Oncology and presented in partnership with the National Coalition for Cancer Survivorship (NCCS) to help people affected by cancer cope with the emotional side of the disease. We are pleased to announce that we have extended the […]
WCOE: Discussions About the Costs of Care and How We Pay for Cancer Treatment
Discussions about the costs of cancer treatment and how we pay for cancer care dominated many of the cancer policy stories that caught our eye this week. In a Washington Post article from the Wonkblog, Jason Millman outlines some of the troubling statistics that project a significant increase in the costs of cancer care, as […]
Reinventing Patient-Centered Cancer Care Brookings Institute “MEDTalk”
On Wednesday, as part of the Merkin Series on Innovation in Care Delivery, the Brookings Institute held an event in their new MEDTalk format titled, Reinventing Patient-Centered Cancer Care. The MEDTalk event follows the popular TED Talk format, and it was designed to feature several short presentations that considered the challenges of delivering oncology care while enhancing the patient experience, […]
WCOE: Pediatric Cancer Survivorship Challenges and an ACA Progress Report
A PBS Newshour segment, “Pediatric Cancer Survivors Face a Lifetime of Health Challenges,” discusses the late effects and potential secondary cancers that survivors of pediatric cancers face. The piece puts a human face on the challenges with its profiles of Laura Allaire, an adult survivor of pediatric cancer, and eleven-year-old Samantha Schwarz, who is being […]
