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 […]
Cancer Leadership Council Comments on Essential Health Benefits
On December 26, 2012 the Cancer Leadership Council, a patient-centered forum of national advocacy organizations addressing public policy issues in cancer, filed comments on Essential Health Benefits. The National Coalition for Cancer Survivorship was one of 16 organizations representing cancer patients, physicians, researchers, and caregivers signing on to the comments. The comments on the proposed rule setting […]
Cancer Patients Should Be Wary of Needless Tests and Treatments
When the diagnosis is cancer, many people understandably want to pull out all the stops to treat it. But some tests, treatments and procedures not only are unnecessary but also can be harmful. “Sometimes less really is more,” says Lowell E. Schnipper, chief of hematology-oncology at Beth Israel Deaconess Medical Center in Boston and clinical […]
Department of Health and Human Services Releases Proposed Rules for Affordable Care Act, NCCS to Analyze
On Tuesday, November 20, 2012, the Department of Health and Human Services released proposed rules on several key elements of the Affordable Care Act. The proposed rules address: 1) the operation of the health insurance exchanges and the definition of essential health benefits to be included in plans offered through the exchanges, 2) the implementation […]
When Treating Cancer Is Not an Option
When my husband learned he had advanced lung cancer, he didn’t even want to speak to an oncologist about chemotherapy. He saw no point in treatment that could not cure him and might make him feel worse. Not so, though, for a majority of patients diagnosed with cancers of the lung or colon that have spread […]
Some cancers under-represented in survivorship research, study finds
A recent study from the Ohio State University Comprehensive Cancer Center found that certain cancer types are disproportionately under-represented when researching survivorship. The study revealed that 40 percent of current research focuses on breast cancer survivors, with breast cancer survivors accounting for 22 percent of the entire survivor population. In contrast, prostate cancer survivors make […]
Breast Cancer Survivor Awarded Top Prize In 2012 Oncology On Canvas ℠ Art Competition
Breast Cancer Survivor Awarded Top Prize In 2012 Oncology On Canvas ℠ Art Competition INDIANAPOLIS, Nov. 12, 2012 /PRNewswire/ — Quilts are made for dozens of reasons – for warmth, decoration and remembrance – but for a college professor from Utah, quilting became a form of healing. It was something Judy Elsley, Ph.D., had enjoyed doing for years, but it […]
NCCS comments on FDA’s draft guidance for in vitro companion diagnostic devices
NCCS filed comments on the Food and Drug Administration’s Draft Guidance for Industry and Food and Drug Administration Staff: In Vitro Companion Diagnostic Devices on October 12, 2011. The Draft sets out a proposed framework for drug and test makers to use in developing targeted treatments and new tests to help identify patients most likely to benefit […]
Journey Forward recognized for extraordinary contribution with Health Impact Award
Journey Forward has received the Wellsphere’s Health Impact Award for its extraordinary contributions to cancer survivors. The award acknowledges that the program has increased progress in areas such as health research, understanding, empathy, inspiration, awareness, accessibility, and networking. Journey Forward is an innovative nationwide program to promote the use of Survivorship Care Plans that will help […]
NCCS adds care planning to Teamwork resource
NCCS has revised and updated Teamwork: the Cancer Patient’s Guide to Talking with Your Doctor booklet to include a sample treatment plan with a map to appropriate questions for each component to ensure the patient remains an active team member and decision maker in their care. A treatment summary template and sample survivorship care plan have also […]
NCCS receives Cardinal Health Foundation grant to improve patient safety
The National Coalition for Cancer Survivorship was selected by the Cardinal Health Foundation as one of 42 grant recipients to fund organizational programs that help U.S. hospitals, health systems and community health organizations improve the effectiveness, efficiency and excellence of patient care. The grant will help support NCCS’s efforts in using technology and mobile applications […]
NCCS updates two long-standing publications; begins offering Cancer Survival Toolbox End of Life program as a standalone
NCCS has recently updated two of its long-standing publications: one that addresses employment rights as a cancer survivor and the other that helps cancer patients understand and define their health insurance options and rights. The organization has also recognized that during the final stage of survivorship, having important discussions and making deliberate decisions can help patients […]
NCCS sponsors IOM study to demographic issues in quality of cancer care
NCCS, along with 11 other organizations sponsored an Institute of Medicine (IOM) consensus study: Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population. On May 21, 2012, the committee began to examine issues in the quality of cancer care with a specific focus on the demographic changes that will rapidly accelerate the […]
NCCS participates in roundtable meeting to discuss future of Health IT
NCCS was recently invited to participate in a roundtable discussion on the potential role of Health Information Technology in cancer care and care coordination. Senior Health Policy Advisor Ellen Stovall attended the June 7th meeting organized by the National Cancer Institute at NIH, the eHealth Initiative, and Dr. Farzad Mostashari, the National Coordinator for Health […]
NCCS applauds the Supreme Court decision upholding the Affordable Care Act
The National Coalition for Cancer Survivorship (NCCS), a national organization representing survivors of all types of cancer, commends the Supreme Court for affirming the constitutionality of the primary provisions of the Affordable Care Act. “Many cancer survivors struggle to get timely, high-quality care that they can afford, and the Affordable Care Act will help them […]
Band-aids for the health law
White House officials say they are confident the Supreme Court will uphold the health-care law, but they also are preparing for a range of outcomes, including pressing ahead with what remains of the law if the court strikes down only part of it. Republicans, meanwhile, are preparing a two-step approach if the court doesn’t void […]
Surviving cancer: It’s complicated
Cancer is complicated. And being a survivor can be complicated, too — confounding, confronting, and confusing. Even starting with the word itself. It can be confusing to know exactly what is meant by cancer survivor. So for the first time in the 18 years of my own survival, I looked up the definition on the […]
US cancer survivors to rise by a third by 2022, report says
The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a report released on Th ursday by the American Cancer Society and the National Cancer Institute. Researchers found that even though the incidence rates of cancer are decreasing, the number of cancer survivors is […]
ASCO Announces CancerLinQ, an Initiative to Transform Cancer Care
ASCO is embarking on CancerLinQ, a multi-phase initiative that promises to change the way cancer is understood and treated. This “rapid learning system” will harness technological advances to connect oncology practices, measure quality and performance, and provide physicians with decision support in real time. Cancer science and information technology are advancing rapidly, but the way […]
House passes FDA’s $6.4 billion fee plan for drug reviews
The $6.4 billion accord that Teva Pharmaceutical Industries Inc. (TEVA), Johnson & Johnson (JNJ) (JNJ) and other companies reached with U.S. regulators to fund new medicine and device reviews through 2017 passed the House of Representatives. The House voted late yesterday 387-5 in favor of the legislation, which is similar to a measure approved by […]
Many US cancer survivors still lost in transition
A 2005 US Institute of Medicine report championed care plans for people who survive cancer. But, as Bob Kirsch reports, many survivors are still missing out on the close follow-up that they need. This June, when she chairs the session—Optimizing Efficient and Effective Care of Cancer Survivors—at the annual meeting of the American Society of […]
There’s a medical app for that—or not
Mobile software is part of the most important movement in health care. Will government regulators suffocate it? Even the most ideologically opposed politicians agree: Health care is choking on paperwork, and medicine is prone to errors of handwriting, lost information and guesswork. That’s why the promotion of health information technology is one of the only […]
Primary care doctors don’t know long-term effects of chemo
Many primary care doctors don’t know the long-term side effects of the chemotherapy treatments that cancer survivors under their care may have been given, a new survey found. On the other hand, most oncologists — though not all — are familiar with the side effects of four common treatments used to treat breast and colon […]
Some doctors unaware of long-term side effects of cancer care
Doctors need to be better educated about the significant long-term side effects of chemotherapy that may affect their cancer survivor patients, according to new research published Wednesday in advance of the 47th annual meeting of the American Society of Clinical Oncology (ASCO). Currently there are at least 12 million cancer survivors in the United States. […]
Infection causes 1 in 6 cancers worldwide
One in six cancers worldwide is caused by preventable or treatable infections, a new study finds. Infections cause about 2 million cancer cases a year, and 80 percent of those cases occur in less developed areas of the world, according to the study, which was published online May 8 in The Lancet Oncology. Of the […]
It takes a team to Breakaway from Cancer
What an incredible tour it’s been for us! We’ve had the opportunity to meet some really amazing survivors, caregivers and loved ones, and hear many inspiring stories of survivorship along the way. It truly does take a team to Breakaway from Cancer – and NCCS is privileged to be a part of Amgen’s initiative to connect […]
Comments on Medication Adherence to Office of Surgeon General
Department of Health and Human Services Office of the Surgeon General Room 710-H 200 Independence Avenue, SW Washington, DC 20201 Filed via email at medadhere@hhs.gov The National Coalition for Cancer Survivorship (NCCS) is dedicated to improving access to quality cancer care. NCCS provides educational tools and materials to assist cancer survivors in the management of […]
Four Californians selected as Breakaway from Cancer Champions to be honored during Amgen Tour of California
Four individuals who have made a difference for others affected by cancer in their communities have been selected as Breakaway from Cancer® Champions. They will be honored at the seventh consecutive edition of the Amgen Tour of California as part of Amgen’s Breakaway from Cancer initiative. The Amgen Tour of California is America’s largest and […]
2012 Extraordinary Healer Award for oncology nursing finalists announced
CURE magazine, the nation’s largest magazine for people with cancer, has announced the three finalists for the 2012 Extraordinary Healer Award for Oncology Nursing. The contest, made possible with financial support from Amgen Oncology and Breakaway from Cancer®, invited patients and their families to submit a 700-1,000 word essay describing the compassion, expertise and helpfulness […]
Focus on quality of life may cut health-care costs
A new focus on patient well being and quality-of-life issues could improve health-care outcomes and reduce costs, as WSJ explains in today’s special report on innovation in health care. Well-being and quality of life may seem like fairly vague concepts for doctors, compared to say, blood-pressure readings and cholesterol levels. But researchers are finding links […]
NCCS Pocket Cancer Care Guide mobile app selected as an Official Honoree of the 16th Annual Webby Awards
The National Coalition for Cancer Survivorship (NCCS) Pocket Cancer Care Guide mobile app has been selected as an Official Honoree of the 16th Annual Webby Awards. The mobile app, designed for cancer survivors and caregivers, allows users to quickly and easily build lists of practical questions to guide conversations with their doctors and nurses. This […]
The challenges facing young people with cancer
Being diagnosed with cancer at any age is a terrifying thing, but for young people, a cancer diagnosis can mean falling into a unique treatment limbo. Young adults are often faced with receiving treatment among children in pediatric wards, or with elderly patients in more traditional oncology wards – and neither option addresses the specific […]
IOM workshop summary on “The Role of Obesity in Cancer Survival and Recurrence” now available
Given the increasing rate of obesity and an aging population more susceptible to cancer, there is mounting concern about obesity’s role in fueling tumor growth. Recent research suggests that excess weight and obesity can influence cancer survival and recurrence. Additionally, there is interest in exploring ways to break the obesity-cancer link, especially in patients already […]
Three days of hearings yield five take-aways
It is notoriously hard to predict how the Supreme Court will rule on a case based on justices’ questioning of attorneys. But with this week’s health-care arguments having wrapped up, here is what we know: The Court Won’t Wait The centerpiece of the case is the health-care law’s requirement that individuals purchase insurance or pay […]
NCCS continues support of the minimum coverage provisions of the Affordable Care Act
Today, the U.S. Supreme Court began three days of arguments in the historic case on the constitutionality of the national health reform legislation, the Patient Protection and Affordable Care Act—often referred to as the Affordable Care Act (ACA). Just over two years after being signed into law by President Obama, the next three days—and the […]
Cancer survivor says her life changed completely with the Affordable Care Act
Gail O’Brien, a cancer patient who had been denied health insurance coverage due to her preexisting health condition, is just one of many cancer survivors that have benefited from the changes in health care coverage through the implementation of the Affordable Care Act (ACA), introduced two years ago, today. Gail’s story is like so many […]
White House Highlights Affordable Care Act “Champions of Change”
On March 21, the White House honored ten Champions of Change who are dedicated to improving access to health care. These individuals are helping others in their community understand the impact and opportunities from the health care law, the Affordable Care Act. “The President’s health law gives hard working, middle-class families the security they deserve. […]
Virginia Cancer Institute is chosen for patient education effort
Richmond-based Virginia Cancer Institute is the only medical practice in the United States engaged in this phase of this project. Lessons learned here will shape the Toolbox’s national launch. Under this program, the Virginia Cancer Institute is providing the Toolbox free of charge to its patients. This comprehensive kit consists of a resources booklet and […]
What effects the health care law has had and what’s to come
Two years after President Obama signed the Patient Protection and Affordable Care Act, some provisions have taken effect, while others still have two years to wait. In a recent poll by the non-partisan Kaiser Family Foundation, two in three Americans said they have not been affected by the law yet. Only 14% said they have […]
