NCCS Names Shelley Fuld Nasso as CEO
The National Coalition for Cancer Survivorship (NCCS) announces the appointment of Shelley Fuld Nasso as Chief Executive Officer. Fuld Nasso previously served as Senior Director of Public Policy at NCCS and with her appointment as CEO, will assume responsibility for executing NCCS’ efforts to ensure that improving the quality of cancer care in the United […]
NCCS Joins Patient and Professional Organizations in Urging Congressional Leadership to End the Shutdown
The National Coalition for Cancer Survivorship (NCCS) joined more than 20 patient and professional organizations in the Cancer Leadership Council in sending a letter to Congressional leadership urging the end of the government shutdown. The letter describes the effects of the shutdown on cancer research and cancer patients. “Even the temporary closure of important federal […]
Jessie Gruman’s Prepared Patient Blog on the Accuracy of Health News
In a recent post on the Prepared Patient Blog, Jessie Gruman writes about the demands placed on health journalists, and the impact that this reporting has on public attitudes. She cites a series of interviews conducted by the Center for Advancing Health in 2011 suggesting that journalists are encouraged to avoid ambiguity, make things simple, […]
Amy Berman Discusses Range of Cancer Care Issues
Harold Pollack interviews Amy Berman for a recent post in the Washington Post Wonkblog. Ms. Berman speaks openly about her experiences living with Stage IV breast cancer and her decision to forgo aggressive treatments in favor of palliative care. The interview touches on issues ranging from personal to policy, emphasizes patient-doctor communication, and explores the […]
NCCS Announces Cancer Policy Advisors
Today the National Coalition for Cancer Survivorship (NCCS) announces the appointment of a group of leaders in the oncology field to serve as Cancer Policy Advisors. The slate of advisors includes leading researchers, oncologists, scholars, payers, and cancer center and survivorship program directors, who will provide guidance to NCCS as it represents cancer patients and […]
IOM Report Released Today, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis”
Today, the Institute of Medicine (IOM) released its report, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis.” According to the IOM, the American cancer care system often is not patient-centered, does not provide well-coordinated care, and does not encourage evidence-based treatment decisions. NCCS is a sponsor of the IOM report, […]
NCCS Comments on Proposed Physician Fee Schedule for 2014
NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) on the proposed rule that addresses Medicare Part B payment policies for 2014. In its comments, NCCS commended CMS for its efforts to foster care management, including codes for transitional care management which were implemented in 2013. In the current proposed rule, CMS […]
Presidential Proclamation — National Childhood Cancer Awareness Month
President Obama announced that the month of September will officially be known as National Childhood Cancer Awareness Month. The proclamation, released on August 30th, applauds the advancements that have been made in recent decades while noting that pediatric cancer remains the leading cause of death by disease for American children under 15. All children deserve […]
NCCS Submits Comments in Follow-Up to FDA Patient-Focused Public Meeting
NCCS submitted comments to the Food and Drug Administration (FDA) as a follow-up to the Lung Cancer Patient-Focused Drug Development public meeting on June 28, 2013. The patient-focused drug development program is an initiative mandated by the Food and Drug Administration Safety and Innovation Act (FDASIA) and is intended to provide the agency the advice of patients […]
NCCS Joins Patient Advocate Colleagues in Commenting on FDA Document on Expedited Programs for Serious Conditions
NCCS joined its patient advocate colleagues in the Cancer Leadership Council in comments on a Food and Drug Administration (FDA) document that provides guidance about the use of certain “expedited programs” that may be employed in the review of therapies for serious conditions. The FDA has updated the guidance regarding fast track and priority review […]
NCCS Announces Special Event — How Does the Media Impact Perceptions of Cancer and Cancer Care?
The media — broadcast, social media, print, or blogs — can have a transformative influence on how cancer patients and their families receive information about their disease, navigate difficult choices about treatment, and make decisions about their lives after cancer. This year, NCCS will host a special panel discussion about how cancer is covered in media and entertainment, […]
IOM Releases “Partnering with Patients” Meeting Summary
The Institute of Medicine released a meeting summary today of a workshop that took place in February, “Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvements.” A short video capturing the key messages of the workshop, and including the voice of patients, has also been released. In an efficient health care system, […]
JAMA Opinion Piece: The Short and Long Term Implications of Myriad Decision
On June 13, 2013, the Supreme Court ruled in Association for Molecular Pathology v. Myriad Genetics that a human gene removed from the body and unchanged from its natural form cannot be patented. Cancer advocates greeted the ruling with enthusiasm and also hoped that the ruling would have the impact of creating more competition for […]
Jessie Gruman’s New York Times Blog Describes Patient’s Post-Discharge Experience
Jessie Gruman offers her fellow cancer survivors and their caregivers specific advice for improving the discussion that occurs between cancer patient and care team at the time of discharge from the hospital. Ms. Gruman shares the experience she had when she was discharged from the hospital after removal of her stomach, the treatment for gastric […]
The Definition of “Cancer”: JAMA Opinion Piece Triggers Medical, Scientific, and Policy Debate
With the online publication of an opinion piece in the Journal of the American Medical Association, Drs. Laura J. Esserman, Ian M. Thompson, and Brian Reid have triggered a medical, scientific, and policy debate about the definition of “cancer” and strategies for diagnosis and treating cancer. The authors wrote for a working group that was […]
NCCS Comments on Quality Measures for PPS-Exempt Cancer Hospitals
NCCS filed comments in support of proposed cancer care quality measures that will be utilized to assess the cancer care provided by the prospective payment system (PPS)-exempt cancer hospitals. In its comments, NCCS focused on the outcome measure that will assess the performance of PPS-exempt institutions in preventing inpatient admission or emergency department care for […]
Washington Post Wonkblog Discusses Myriad and BRCA Tests
The United States Supreme Court ruled unanimously on June 13, 2013, that human genes cannot be patented. In the case of Association for Molecular Pathology v. Myriad Genetics, Inc., the Court found that Myriad had not created anything when it isolated the BRCA genes. However, the Court also ruled that patents might be available for […]
Clinical Trials System Evaluation and IOM Workshop Summary
In the Sunday, July 14, New York Times, Clifton Leaf offered a critical evaluation of clinical trials. In letters to the editor published in the Times on July 18, 2013, several writers rebutted Leaf and defended the clinical trials enterprise. John LaMattina writes in Forbes that Leaf has resorted to negativism in his review of […]
The ACA: Health Affairs Explains Upcoming Implementation and Exchanges
October 1, 2013 is rapidly approaching. That’s the beginning of open enrollment for insurance through state exchanges created to satisfy the Affordable Care Act (ACA). The new health policy brief from Health Affairs explains the different models for exchanges, including both state-based and federally affiliated. It also lays out upcoming implementation activities and challenges facing […]
Clifton Leaf Opinion Piece in NY Times “Do Clinical Trials Work?”
Clifton Leaf, a cancer survivor and the author of “The Truth in Small Doses: Why We’re Losing the War on Cancer – and How to Win It”, writes in The New York Times about the challenges that exist in human drug trials and the impact of biological diversity on outcomes. Researchers are coming to understand […]
NIH Appropriations: Senate Bill Includes an Increase in Funding Above FY 2013
The Senate Appropriations Committee approved a fiscal year 2014 funding bill by a party-line vote of 16 to 14 on July 11, 2013. In his opening statement at subcommittee markup, Subcommittee Chair Tom Harkin explained the importance of increasing funding for the National Institutes of Health (NIH). The Senate bill includes $30.955 billion for NIH, […]
Shelley Fuld Nasso of NCCS Is Panelist at FDA Lung Cancer Meeting
Shelley Fuld Nasso, NCCS Senior Director of Policy, was a panelist at the June 28, 2013, Food and Drug Administration (FDA) meeting on patient-focused lung cancer drug development. Ms. Fuld Nasso offered advice to FDA about strategies for incorporating patient needs and preferences in lung cancer drug development. She concentrated her remarks on the need […]
Dr. Nancy Snyderman’s “My Patient, My Teacher”
In an article in the AARP Magazine, Dr. Nancy Snyderman, Chief Medical Editor for NBC News, describes her experience treating Lindsay Nohr, a patient with tongue cancer, describing Lindsay as “my patient, my teacher.” Dr. Snyderman writes, “We can’t know then what we will come to realize later in life — that our professors are […]
Alexander Nazaryan’s “World War Cancer” Evaluates Persistent Cancer Challenges
Alexander Nazaryan writes about “World War Cancer” in The New Yorker. Nazaryan’s blog post is a review of a forthcoming book by Clifton Leaf, “The Truth in Small Doses: Why We’re Losing the War on Cancer,” but it also references several recent articles that assess progress in the war on cancer. Nazaryan offers an honest […]
Bipartisan Bill to Improve Cancer Care is Introduced in House by Representatives Capps and Boustany
Washington, D.C. – Congresswoman Lois Capps (D-CA) and Congressman Charles Boustany, Jr., M.D., (R-LA) today introduced the Planning Actively for Cancer Treatment (PACT) Act (H.R. 2477), which would significantly improve the quality and coordination of care for Medicare patients with cancer. The bill is the top federal policy priority of the National Coalition for Cancer […]
NCCS endorses the Carolyn Pryce Conquer Childhood Cancer Reauthorization Act
NCCS is a member of the Alliance for Childhood Cancer and joined with the Alliance to support the introduction of the Carolyn Pryce Conquer Childhood Cancer Reauthorization Act. This legislation would make important progress to expand child, adolescent, and young adult cancer research, improve the tracking of cancer incidences, and identify opportunities to expand the […]
Association for Molecular Pathology v. Myriad Genetics, Inc.
The Supreme Court ruled unanimously on June 13, 2013, that isolated human genes may not be patented. The opinion, written by Justice Clarence Thomas for the unanimous Court, stated: “Had Myriad created an innovative method of manipulating genes while searching for the BRCA1 and BRCA2 genes, it could possibly have sought a method patent. But […]
Journey Forward™ Program Is Finalist in the Crowds Care 4 Cancer Challenge
We are pleased to announce that Journey Forward’s My Care Plan is one of three finalists in the Crowds Care 4 Cancer Challenge supported by the Office of the National Coordinator for Health Information Technology (ONC), in conjunction with the National Cancer Institute (NCI), to drive health innovation forward. Journey Forward is a combined effort of the National Coalition for Cancer Survivorship (NCCS), WellPoint, […]
Shelley Fuld Nasso Joins NCCS as Director of Public Policy
Shelley Fuld Nasso has joined the National Coalition for Cancer Survivorship (NCCS) as Senior Director of Policy, with responsibility for leading public policy activities, patient education, and other programs. Ms. Fuld Nasso previously served as Director of Public Policy and Director of Public and Medical Affairs at Susan G. Komen for the Cure. She brings […]
Can Human Genes Be Patented?
The Supreme Court considered the question, “Can human genes be patented?” when it heard oral arguments in the case of Association for Molecular Pathology v. Myriad Genetics, Inc. Case materials, legal commentary, and reports of the oral arguments are available on www.scotusblog.com. The Washington Post reported after the oral arguments, “The Supreme Court on Monday […]
Announcements at the American Urological Association Address Screening and Management of Prostate Cancer
Several announcements at the American Urological Association (AUA) annual meeting addressed screening and management of prostate cancer. The AUA has narrowed the age range in which it advises that there be informed decision-making about prostate cancer. The professional society now recommends that men between 55 and 70 receive PSA tests. According to the AUA, such […]
“Our Feel-Good War on Breast Cancer”
The New York Times Magazine of April 28, 2013, features a story by cancer survivor Peggy Orenstein entitled “Our Feel-Good War on Breast Cancer.” The cover story is available online in advance of its publication in the magazine. Orenstein concludes her lengthy story about breast cancer treatment and research with these strong comments: “The idea […]
Cancer Leadership Council Statement: Reform Medicare Payment for Patient-Focused Care
NCCS joined its colleagues in the Cancer Leadership Council in publishing a statement of principles to guide reform of Medicare payment for cancer care. Major news outlets have suggested that Medicare beneficiaries are not receiving their cancer care due to the 2% cuts in Medicare payments required under the sequestration. NCCS and other cancer advocates […]
NPR Health “As Palliative Care Need Grows, Specialists Are Scarce”
In recent article, Lydia Zuraw reports on the disconnect between the supply of palliative care specialists and the demand for these services. Citing a recent assessment of the shortfall as determined by the American Academy of Hospice and Palliative Medicine, the article notes a need of as many as 18,000 physicians focused on palliative care and hospice care. […]
NCCS Senior Policy Advisor Responds to Opinionator “A Plan to Fix Cancer Care”
NCCS Senior Policy Advisor Ellen Stovall’s advice for immediate reform of cancer care was published in a letter to the editor of the New York Times on April 1, 2013. Letters from Ms. Stovall and four other writers commented on an opinion piece by Dr. Ezekiel J. Emanuel and others, published in the Times on […]
NY Times Opinionator: A Plan To Fix Cancer Care
In a recent New York Times Opinionator essay, Ezekiel J. Emanuel is joined by more than 20 prominent members of the oncology community in outlining five major changes to be made to the health care system to ensure sustainability of care. This year, more than 1.6 million Americans — 0.5 percent of the population — will receive […]
NCCS and Colleagues Comment on FDA Strategies Regarding Drug Shortages
NCCS joined colleagues in the cancer patient and provider community in providing advice to the Food and Drug Administration (FDA) regarding strategies to anticipate, mitigate, and report shortages of drugs and biologicals. In the last several years, cancer patients and many others with serious and life-threatening illnesses have experienced disruptions in supply for a number […]
Free-floating DNA from Tumor Could Provide Early Warning
In an article in the USA Today of March 13, 2013, reporter Liz Szabo directs attention to a study published in the New England Journal of Medicine. Szabo says that the small study suggests that doctors can measure circulating tumor DNA in women with advanced breast cancer in order to refine treatment. This measurement may […]
Widespread Flaws Found in Ovarian Cancer Treatment
Denise Grady reports in the New York Times regarding a study of the gaps in ovarian cancer care that was presented at the recent annual meeting of the Society of Gynecologic Oncology. The research study found that many women with ovarian cancer receive treatment that is not consistent with recommended standards for care. A number […]
Cancer Community Mourns the Loss of Survivorship Advocate Zora Brown
The National Coalition for Cancer Survivorship joins the American Association for Cancer Research (AACR) and our colleagues in the cancer advocacy community as we note the sad passing of Zora Brown, a pioneering advocate of research and awareness. Ms. Brown’s survivorship marked more than two decades with breast cancer and then ovarian cancer and, through […]
NCCS Joins Colleagues in Offering Comments on an Alternative Approval Pathway
NCCS joined its colleagues in the patient advocate and cancer care provider community in offering comments to the Food and Drug Administration (FDA) on an alternative approval pathway for drugs to treat certain diseases where there is an unmet medical need. FDA requested public comment on a proposal that was developed by the President’s Council […]
“Making Cancer Drugs Less Expensive” Linking Clinical Value to Price
In an opinion piece in the Washington Post, Hagop Kantarjian, Leonard Zwelling, and Tito Fojo offer a perspective on cancer drug prices as well as advice on how to reduce prices. In his book “Justum Pretium,” Aristotle discusses the relationship between price and worth, a topic continued 16 centuries later by Albert the Great and […]
Cancer Leadership Council Submits Comments on the Proposed Rule on Medicaid Cost-Sharing and Other Issues
NCCS joined colleagues in the cancer advocacy community in submitting comments regarding proposed standards for the expanded Medicaid program that was established by the Affordable Care Act. The rules that have been proposed by the Centers for Medicare & Medicaid Services would grant a state great flexibility in the design of its Medicaid program, if […]
NCCS Resources Included in eHealth Initiative’s Health IT Cancer Resource Guide
The National Coalition for Cancer Survivorship is pleased to announce that the eHealth Initiative has included three of NCCS’s patient resources in the recently launched Health IT Cancer Resource Guide. The eHealth Initiative is a non-profit organization whose mission is to drive improvement in the quality, safety, and efficiency of healthcare through information and technology. The national organization […]
NIH study finds increases in risk of certain leukemias related to treatment
On February 14, 2013, the National Cancer Institute (NCI) announced research that found that adults treated with chemotherapy for non-Hodgkin’s lymphoma and other forms of cancer have an increased risk of acute myeloid leukemia (AML). The study, completed by researchers at NCI and colleagues, describes a pattern of risk for those treated with chemotherapy for […]
Do Oncologists Lie to Their Patients About Their Prognoses?
In a blog in Forbes, Peter Ubel asks, “Do Oncologists Lie to Their Patients About Their Prognoses?” Ubel shares a case study in which an oncologist gave a patient a false and overly optimistic estimate of his chance for remission. He says of the doctor’s action, “The oncologist’s behavior that day, the sudden switch from […]
JAMA Study on End-of-Life Care Shows Increase in Hospice Use and Aggressive Care
A study published today in the Journal of the American Medical Association examined changes in end-of-life care for Medicare beneficiaries from 2000 to 2009. The study authors reported an increase in the use of hospice care, particularly for cancer patients, but also an increase in ICU usage, health care transitions in the last 90 days […]
States Need “Navigators” for Insurance Exchanges — Difficult Task Ahead
The Washington Post reports on the daunting task of enrolling 30 million Americans through the health insurance exchanges that will be in place in 2014. During the enrollment period from October 1, 2013, through March 2014, states will have to enroll thousands of people each day. States are hiring navigators and assisters to help with […]
Dr. Ezekiel J. Emanuel Opinion Piece “We Can Be Healthy and Rich”
In an online “Opinionator” piece in the New York Times, Ezekiel J. Emanuel makes a case for bending the health care cost curve to spur economic growth. Dr. Emanuel reminds the reader the bending the cost curve means preventing the day when health care spending reaches $4 trillion annually, compared to $2.8 trillion last year, […]
PolitiFact Evaluates Obama-Biden Promise to Increase Participation in Cancer-Related Clinical Trials
In 2008, Barack Obama promised to increase patients’ access to clinical trials for new drugs by requiring coverage of patient clinical trial costs in the new public and private plans offered through the National Health Insurance Exchange. PolitiFact spoke with several patient advocates, including Shelley Fuld Nasso, a health policy consultant for NCCS, to determine if […]
Protons for Prostate Cancer: the Dream Versus the Reality
In an editorial published in the January 2, 2013, issue of the Journal of the National Cancer Institute, Theodore Lawrence and Mary Feng discuss a recent study that compared proton radiotherapy and photon radiotherapy for treatment of prostate cancer in Medicare patients. Lawrence and Feng identify the shortcomings of the retrospective, population-based study of the […]
Deciding About Breast Cancer Chemotherapy
To make truly informed decisions, patients must understand the potential risks and benefits of their treatment options. In this Forbes article, Peter Ubel describes his research on how to present complicated medical information in a way that patients can comprehend. As if being diagnosed with breast cancer wasn’t bad enough, many women with this diagnosis […]
When the Patient Knows Best
Oncology nurse Theresa Brown shares Amy Berman’s decision to forego aggressive treatment for her Stage 4 inflammatory breast cancer diagnosis in favor of palliative care aided by a health care team who respected her individual values and needs to receive care on her own terms. Recognizing the importance of the patient’s perspective, Brown encourages all […]
Article Reports Tendency of Investigators to Underreport Side Effects of Chemo in Clinical Trials
In an article in the Annals of Oncology, Ian Tannock and colleagues from Princess Margaret Hospital in Toronto report on the tendency of investigators to underreport the side effects of chemotherapy in randomized clinical trials in breast cancer with positive results. The authors also note the tendency of investigators to emphasize secondary endpoints when a […]
Readers Respond to Ezekial Emanuel’s Op Ed Piece on the Cost of Care at End-of-Life
Writers offered a range of interesting perspectives on Dr. Ezekiel Emanuel’s opinion piece on the cost of care at the end of life, “Better, If Not Cheaper, Care,” published in the New York Times of January 4, 2013. Ezekiel J. Emanuel, in “Better, if Not Cheaper, Care” (Op-Ed, Jan. 4), does well to note that end-of-life […]
The American Society of Clinical Oncology (ASCO)’s Plans for Improving Cancer Survivorship Care
In a statement published in the Journal of Clinical Oncology on January 7, 2013, the American Society of Clinical Oncology (ASCO) detailed its recommendations for achieving high-quality cancer survivorship care. Notably, ASCO stressed the need for policy and advocacy on issues that impact cancer survivors, and it endorsed the Comprehensive Cancer Care Improvement Act, a key priority […]
Better, if Not Cheaper, Care
IT is conventional wisdom that end-of-life care is an increasingly huge proportion of health care spending. I’ve often heard it said that people spend more on health care in the year before they die than they do in the entire rest of their lives. If we don’t address these costs, the story goes, we can […]
Shared Decision Making to Improve Care and Reduce Costs
In a New England Journal of Medicine January 3, 2013 article, Emily Oshima Lee and Dr. Ezekiel J. Emanuel discuss the potential for shared decision making to improve the quality of care patients receive and potentially reduce costs. The authors suggest that a provision of the Affordable Care Act (ACA) should be implemented fully to […]
New England Journal of Medicine Article — The Impact of Drug Shortages on Children with Cancer
The December 27, 2012, New England Journal of Medicine includes an important research article on the impact of drug shortages on children with cancer. The study, conducted by Drs. Monika Metzger, Amy Billett, and Michael Link, evaluated the impact of shortages of mechlorethamine for treatment of intermediate-risk Hodgkin’s lymphoma in children. The authors found that […]
NCCS Files Comments on Proposed Rule Setting Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation
The Honorable Kathleen Sebelius Secretary Department of Health and Human Services 200 Independence Avenue, S.W. Washington, D.C. 20201 Re: CMS-9980-P, Patient Protection and Affordable Care Act; Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation Dear Secretary Sebelius: The National Coalition for Cancer Survivorship (NCCS) appreciates the opportunity to comment on the proposed rule […]
