A New Addition to Our Policy Team: Kelsey Nepote’s First Assignment with Alliance for Childhood Cancer Action Days
On Monday of last week it was with great pleasure that I started in my new position at NCCS as Policy and Advocacy Manager. My first assignment was to attend the Alliance for Childhood Cancer Action Days, which NCCS first reported on in June. This two-day event had significant meaning to me personally as my […]
WCOE: Childhood Cancer Action Day, NCCS Provides Patient Perspective at IOM Workshop, and Pre-Hospice Program Report
In a blog post on The Hill, Stephen Crowley urged Congress to “step up” funding for pediatric cancer research, as more than 250 advocates convened in Washington, D.C. for the Alliance for Childhood Cancer Action Day. NCCS is a member of the Alliance and was pleased to participate in and sponsor the advocacy effort. Crowley […]
NCCS Responds to 21st Century Cures Initiative Call to Action
The United States House of Representatives’ Energy and Commerce Committee released a Call to Action and announced the 21st Century Cures initiative to analyze the discovery, development, and delivery of cures and propose policy solutions. Over the course of the initiative, which officially launched on June 1, 2014, the committee will issue a series of […]
“The Law of Intended Consequences” Article Added to Our Influential Publication Resources
We have recently added another valuable survivorship resource to our Influential Publications, strengthening the evidence base for our advocacy efforts on behalf of all individuals impacted by cancer. “The Law of Intended Consequences: Did the Americans with Disabilities Act Amendments Act Make It Easier for Cancer Survivors to Prove Disability Status?” (reprinted from the New York […]
WCOE: Moving Towards Quality Cancer Care and Remembering an Advocate
This week NCCS CEO Shelley Fuld Nasso and Senior Health Policy Advisor Ellen Stovall presented in separate sessions at the Seventh Biennial Cancer Survivorship Research Conference. Shelley discussed the ways NCCS is working to foster the adoption of cancer care planning, including tools to prepare patients for the conversation, delivery and payment reforms to encourage […]
Take Action: The Alliance for Childhood Cancer “2014 Childhood Cancer Action Days”
A diagnosis of childhood cancer is devastating and impacts families for many years. While we have seen progress in survival for some types of childhood cancer, it remains the number one cause of death by disease for children in our country. Moreover, of the nearly 380,000 survivors of childhood cancer now living in the U.S., […]
Medicare Care Choices Program and Cancer Care Planning for Medicare Beneficiaries
An op-ed authored by NCCS CEO Shelley Fuld Nasso and published in the Santa Barbara Independent today championed hospice care, the Medicare Care Choices Program, and cancer care planning for Medicare beneficiaries. Citing the common view that seeking hospice care is equivalent to “giving up,” Fuld Nasso notes that a flaw in the current system […]
WCOE: Patient-Centered Care, “The Fault in Our Stars” and Genetic Data
Three articles caught our eye at NCCS this week. The one that raises the most questions for us in terms of policy development is from our friend, Amy Abernathy, appearing as a blog post for the June 10th issue of The Hill. Her argument in support of patient-centered care is something we have advocated for […]
Meeting Consumer Expectations and Health Needs in the New Health Insurance Exchanges
Cancer Policy Matters Guest Post by Tanisha Carino, Executive Vice President, Avalere Health The Affordable Care Act provides an unprecedented opportunity for millions to gain coverage through the exchange marketplace by enrolling in a qualified health plan (QHP) that covers essential health benefits and limits financial exposure to excessive out-of-pocket costs. More than 8 million […]
Dr. Patricia Ganz Talks About Common Cancer Survivorship Issues and Founding of NCCS
A recent episode of Take Care, a health care-focused radio show produced by NPR affiliate WRVO, featured an interview with Dr. Patricia Ganz, a medical oncologist and director of the UCLA LIVESTRONG Cancer Survivorship Center of Excellence. In the interview, Dr. Ganz describes a number of issues that can plague cancer survivors after active treatment […]
WCOE: Reactions to ASCO’s Annual Meeting
I am happy to be back in the office, after spending five days in Chicago at the American Society of Clinical Oncology (ASCO) Annual Meeting. It was ASCO’s 50th anniversary, and this year was the highest attendance, with 33,000 people from around the globe. It’s an exciting and exhausting five days, with scientific sessions that […]
Focus on the Care Video: Palliative Care and Living Well with Cancer
Last week we noted two recent articles addressing palliative and end of life care issues, including an article written from the first-hand experience of Amy Berman, who is both a nurse and an individual living with cancer. In Amy Berman’s recent post on the Health Affairs Blog, she describes palliative care as the “best friend of the seriously ill.” […]
WCOE: Amy Berman’s “Less Is More” Approach and End of Life Care
In the May 22nd Health Affairs online blog, “Living My Life My Own Way,” Amy Berman writes about what she knows firsthand and what she has learned from many years of professional experience. And she writes and speaks about it so well, which is one of her many gifts. She was diagnosed with inflammatory breast cancer in October […]
When Talking About the End of Life, Honesty and Words Matter
I attended two different events in Washington, DC this week where the focus was on end-of-life care and the challenges of ensuring that people have quality care and dignity at the end of their life. First was the U.S. Senate Special Committee on Aging roundtable meeting entitled, “Continuing the Conversation: The Role of Health Care Providers […]
WCOE: Dying with Cancer from Patient and Provider Perspectives
In the Health Section of this week’s Washington Post and in greater detail in the Narrative Matters portion of this month’s Health Affairs, Dr. Diane Meier, a noted expert in the field of palliative medicine and a professor of Geriatrics and Palliative Medicine at Mount Sinai in New York, writes about the role of palliative care […]
It Takes a Team – Connecting with Survivors at the Amgen Tour of California
Last week, four members of the NCCS team traveled from our home office outside of DC to join our Breakaway from Cancer partners for eight stages of an outdoor festival at the Amgen Tour of California. Our work with Breakaway from Cancer is an opportunity to get the word out about the many resources that […]
WCOE: Ethics and Discussions about Patient Goals and Preferences, Evidence-Based Medicine
In an essay in The New York Times, Dr. Kent Sepkowitz writes about the value of evidence-based medicine and the Cochrane Collaboration’s process of systematic review to assess the body of evidence on challenging medical questions and offer guidance for clinicians. Dr. Sepkowitz points out that skeptics of evidence-based medicine suggest that the practice of […]
WCOE: Peter Bach’s “The Day I Started Lying to Ruth”
In a series of Well Blogs in The New York Times in early 2011, Dr. Peter Bach wrote about the experiences he and his wife Ruth had when she was diagnosed with breast cancer. Through his honest, but sometimes raw observations about how the medical system and individual oncologists can help us manage a […]
Rep. Lois Capps Speaks on Bill to Improve Cancer Care Planning (Video)
Representative Lois Capps (D-CA) recently spoke about the importance of the Planning Actively for Cancer Treatment (PACT) Act and the need for quality cancer care and care coordination for Medicare beneficiaries. Research has confirmed that coordinated cancer care outlined in a written care plan — care that integrates active treatment and symptom management — improves […]
Why We Care About Physician Payment
Why should patients care about how physicians are paid? Because the way we as a country, and Medicare as the largest payer, compensate physicians directly affects the care patients receive. Our current system is not sustainable for physicians, patients, or taxpayers. The manner in which Medicare currently reimburses for cancer care is unsatisfactory to all, […]
Journey Forward: How Can We Make Survivorship Care Planning a Reality?
I recently attended the American College of Surgeons Commission on Cancer (CoC) Spring Meeting. The CoC membership includes Fellows of the American College of Surgeons, as well as representatives from 52 other member organizations. In 2010, NCCS became one of four patient advocacy organizations to serve as members of the CoC. These groups, worked closely […]
WCOE: Employment Issues, Health Systems, Defining Value in Cancer Care
Long-Term Unemployment Issues for Some Breast Cancer Survivors A recent study led by Dr. Reshma Jagsi of the University of Michigan Health System suggests the need for further discussion surrounding one potential long-term side effect of cancer treatment—unemployment. Employment loss is a concern for many patients in active treatment, however the study found long-term unemployment […]
ACOs and Delivering Care for Older Adults: Two Recent Articles That Caught Our Attention
“What We Can Learn by Listening to Older Adults” Chris Langston, a program director at the John A. Hartford Foundation, penned a recent Prepared Patient Blog post that resides on the Center for Advancing Health (CFAH) website. It refers to what many of us have learned from our work in patient advocacy which points to the dilemmas for the […]
New York Times Article Sheds Light on How the Cost of Treatment May Influence Doctors
Andrew Pollack of The New York Times wrote an interesting article for the Business Section of the paper, shedding light on how the cost of treatment may influence doctors. Quotes from Dr. Lowell Schnipper from the American Society of Clinical Oncology (ASCO) are featured, as are those from leaders at the American College of Cardiology and […]
NCCS Applauds Test of Care Choices for Cancer Patients
The National Coalition for Cancer Survivorship (NCCS) applauds the recent decision by Health and Human Services Secretary Kathleen Sebelius to initiate the Medicare Care Choices Model, a project to evaluate the impact of permitting Medicare patients to receive ongoing curative care while also receiving hospice care. “NCCS has focused its policy efforts on ensuring cancer […]
Amy Berman’s Perspective of Palliative Treatment Highlights Issues in “Triple Aim” Approach to Health Care Delivery
If you already know of Amy Berman, have heard her story, or have been fortunate enough to have spent time with her, you will read more about what words like “patient centered” and “choosing wisely” look like when carried out to treat metastatic cancer. And you will also be exposed to issues that deal with the concept […]
NCCS Joins Colleagues in Commending the Work of the Senate Finance Committee on the SGR Repeal
NCCS joined colleagues in the Cancer Leadership Council in commending the work of the Senate Finance Committee on the SGR Repeal and Medicare Provider Payment Modernization Act of 2014. The legislation offers a responsible process for moving the Medicare program away from a system that emphasizes volume of services to one that focuses on quality […]
NCCS Senior Health Policy Advisor Ellen Stovall Responds to Susan Gubar’s “The Cost of Trials”
Susan Gubar’s voice as a woman living with ovarian cancer (The New York Times Well Blog, March 20, 2014) clearly describes the dilemma of how to manage some of the most distressing features facing people who want to participate in a cancer clinical trial—namely access to these trials and the matters associated with payment for the patient […]
NCCS CEO’s Article via CURE “Aiming to Improve Quality of Cancer Care”
In a recent article posted online via CURE Magazine, Shelley Fuld Nasso describes experiences that underscore the need for improved communication between patients and providers, as well as the evidence-base that informs NCCS’ push for cancer care planning. The Institute of Medicine recently proposed a framework for quality cancer care that centers on engaged patients […]
Oncology Times: NCCS-AEI Meeting Emphasizes Putting Cancer Patient First in Physician Payment Reform
A summary and overview of the recent “Putting the Cancer Patient First” meeting was posted via Oncology Times online. The meeting was co-hosted by NCCS and the American Enterprise Institute (AEI) on February 28, 2014 and convened leaders in health care policy to discuss issues that impact cancer patients and survivors. Read the summary >> The full meeting can also be […]
NCCS Joins Alliance for Childhood Cancer in Submitting Comments to FDA
NCCS joined the Alliance for Childhood Cancer in submitting comments to the Food and Drug Administration (FDA) following the January 2014 public workshop on complex issues in developing drug and biological products for rare diseases. The Alliance encouraged the FDA to consider the issues specific to pediatric cancers that may be different from other rare […]
Advocating for Clear Coverage for Clinical Trial Services for Medicare Advantage Enrollees
NCCS joined with 20 patient advocacy groups and professional societies to urge the Centers for Medicare and Medicaid Services (CMS) to correct a long-standing inequity in Medicare coverage by requiring Medicare Advantage plans to provide coverage for clinical trials. Currently, individuals with Medicare Advantage plans must revert to standard fee-for-service Medicare if they wish to […]
NCCS Joins Cancer Leadership Council (CLC) in Comments to CMS Regarding “Protected Classes”
NCCS joined its colleagues in the Cancer Leadership Council in urging the Centers for Medicare & Medicaid Services (CMS) to reconsider the new policy on classes of clinical concern that has been proposed for Medicare Part D beginning in contract year 2015. CMS has proposed removing three classes of drugs from “protected classes” status. In […]
Dr. Ezekiel J Emanuel’s NYT Article “In Health Care, Choice Is Overrated”
In recent months, there has been significant discussion among cancer patients, their physicians and other health care providers, and cancer organizations about the adequacy of the provider networks in their insurance plans. Cancer patients want assurances that they will receive quality care and can seek second opinions from those with expertise in their particular cancer. […]
NCCS Joins Colleagues in the CLC in Submitting Comments on 2015 Letter to Issuers
This week the National Coalition for Cancer Survivorship (NCCS) joined colleagues in the Cancer Leadership Council (CLC)–a coalition that represents cancer patients, health care professionals, and researchers–in submitting comments on several standards for certification of qualified health plans as outlined in the 2015 Letter to Issuers in the Federally-facilitated Marketplace. The letter commends several recent […]
NCCS/AEI Co-Hosted Event to Be Streamed Live
The National Coalition for Cancer Survivorship and the American Enterprise Institute (AEI) will co-host a symposium, “Putting the Cancer Patient First: Payment Reform in an Age of Personalized Cancer Care.” Friday, February 28, from 8:30 a.m. to 12:30 p.m. at the American Enterprise Institute Conference Center in Washington, DC. For those unable to attend, the event will be streamed […]
Empathy in Health Care: Health Affairs Blog Post Highlights Benefits and Obstacles
In a recent post published on the Health Affairs Blog, patient advocate Aubrey Hill writes about the impact of empathy in improving health outcomes. Hill, who draws on her experiences with the Colorado Coalition for the Medically Underserved, explores social and environmental factors that affect health and care, and suggests that the use of empathy in the […]
Medicare Payment Reform: A Chance to Advance Patient-Centered Cancer Care
NCCS is following two important policy developments that will impact Medicare payments for physician services. Congress is making early steps to reform Medicare payments for physician services, and the Center for Medicare & Medicaid Innovation (CMMI) is seeking public input on refinements in Medicare payments to physician specialists. These steps to improve the Medicare payment […]
Study Raises Questions & Choices for Women Screening for Breast Cancer
Several articles published on Tuesday, February 11, reported on a study in the British Medical Journal which finds death rates from breast cancer from all causes were the same in women who got mammograms and those who did not. The articles points out that the screening also had consequential effects when mammograms detected cancers that were too small […]
New York Times Opinion Piece Describes Common Disparities in Communication and Comprehension
On February 8, a New York Times opinion piece published online describes a common situation where the disparities in communication and comprehension of clinical information from doctor to patient may have adverse consequences for patients. The author, Theresa Brown is an an oncology nurse, and she points out that not only can the miscommunication between a health […]
NCCS Responds to Dr. Don Dizon’s “The Awakening of the e-Patient” Commentary
In his ASCO Connection commentary, “ The Awakening of the e-Patient: Are We Prepared to Engage?” Dr. Don Dizon confirms from the provider perspective what we at NCCS know to be true: patients want to be engaged in decision-making about their care, especially for a serious diagnosis like cancer. Dr. Dizon writes of the emergence […]
New Rule Announced by HHS Secretary Kathleen Sebelius Aims to Empower Patients
The empowered patient is a phrase that is often used to suggest a variety of activities that patients can engage in to allow their sense of access and control in certain situations to emerge. This sometimes overused phrase seems particularly interesting to people with cancer who often report that waiting for lab results is a […]
Report Released to Coincide with World Cancer Day Brings Awareness to Global Survivorship Issues
Today’s World Cancer Day calls attention to the fact that there are nearly 14 million people living in the United States today who have had a diagnosis of cancer. For the past 27 years, the National Coalition for Cancer Survivorship (NCCS) has advocated for issues related to the access, quality, and coverage of cancer related […]
NCCS Responds to Recent Data on Childhood Cancer Survivorship Issues
A recent edition of the Journal of Clinical Oncology (JCO) has attracted our attention for the disturbing statistics it revealed about the issues related to the acceleration of aging among adult survivors of childhood cancer. For 27 years, the National Coalition for Cancer Survivorship (NCCS) has focused on patient-centered policy matters dealing with basic, clinical, […]
“We Are Giving Ourselves Cancer” Op Ed: Consequences of Radiation from Medical Imaging
In a January 31st New York Times Op Ed, Drs. Rita Redberg and Rebecca Smith-Bindman of UCSF Medical Center report on how the increased uses of medical technologies for diagnosing, treating, and monitoring diseases like cancer, are contributing to unprecedented exposures to radiation. The consequences of these exposures is well documented, particularly for people diagnosed […]
Doctors: Too Few Cancer Patients Enroll in Studies
In an article published on January 28th, Marilynn Marchione, Associated Press Chief Medical Writer, explores the issue of enrollment in clinical trials and the impact of patient enrollment in testing new treatments. The article cites the recent analysis of thousands of experiments registered on clinicaltrials.gov lead by Dr. Matthew Galsky of the Icahn School of […]
Announcing the Launch of the 2014 Lilly Oncology On Canvas Art Competition and Exhibition
Today Lilly Oncology and the National Coalition for Cancer Survivorship (NCCS) announced the launch of the 2014 Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition and Exhibition. The biennial competition invites individuals from the United States and Puerto Rico, who were diagnosed with any type of cancer — as well as their families, friends, […]
“Why Everyone Seems to Have Cancer” Considers Inevitability of Cancer
In a recent article in The New York Times, George Johnson, the author of “The Cancer Chronicles,” analyzes the state of the current “standoff” with cancer. While noting advances in science and prevention that have improved childhood cancer survival rates and reduced the prevalence of some cancers, Johnson describes the biological patterns that increase the likelihood […]
JAMA Article: Incorporating Patient Preferences in Practice Guidelines
An article published in the current issue of the Journal of the American Medical Association (JAMA) cites several challenges to the incorporation of patient preferences in decision-making and guideline-directed care. In The Optimal Practice of Evidence-Based Medicine: Incorporating Patient Preferences in Practice Guidelines, the Mayo Clinic-affiliated authors also discuss the complexity of patient preferences, and offer […]
NCCS 2013 Quality Cancer Care Timeline of Accomplishments
In 2013, the National Coalition for Cancer Survivorship (NCCS) represented the patient perspective in national meetings, convened policy experts and thought leaders, submitted comments on federal policies, developed tools to address gaps in cancer care planning, advocated for quality cancer care, and championed legislation that would give Medicare beneficiaries access to cancer care planning and coordination. NCCS […]
Wall Street Journal Article Highlights Two of NCCS’ Policy Priorities
The Journey Forward program and H.R. 2477, the Planning Actively for Cancer Treatment (PACT) Act, two of NCCS’ top priorities, are highlighted in a recent article in the Wall Street Journal. The Journey Forward program is a combined effort of NCCS, WellPoint, Inc., the UCLA Cancer Survivorship Center, Oncology Nursing Society (ONS) and Genentech, that promotes the […]
Medicare Payment Update for 2014
As Congress deliberates significant reforms of Medicare payments for physicians, the Centers for Medicare & Medicaid Services (CMS) has released the final fee schedule for calendar year 2014. In the final schedule, CMS abandoned a payment revision that would have significantly reduced rates of pay for certain cancer diagnostic tests and radiation oncology services. At […]
Reforming Payments to Physicians Caring for Medicare Beneficiaries
By the first quarter of 2014, the National Coalition for Cancer Survivorship (NCCS) and its colleagues in the cancer advocacy community may see substantial progress toward a Medicare payment system that rewards quality and focuses on care planning and coordination. These core principles have been advanced by NCCS and its colleagues through their emphasis on […]
End-of-Session Activities in Congress: The Race to a Budget Deal
The 113th Congress, which is ending its first session in a matter of days, has been criticized for being the least productive Congress in recent memory. In the race to adjourn for the year, Congress is seeking to complete action on a budget deal and to take initial steps toward reforming Medicare payments for services provided […]
New York Times Opinion Piece “No, There Won’t Be a Doctor Shortage”
An opinion piece recently published in the New York Times challenges concerns of a pending doctor shortage and offers suggestions for innovations that could improve the health care system. Some have predicted a shortage of physicians and health care resources caused by a shift in demographics due to the aging American population and the inclusion of millions […]
Simple Ways to Give This #GivingTuesday
This December 3rd we are partnering with hundreds of other charitable organizations to promote #GivingTuesday as a day when ordinary people come together to achieve extraordinary things. Just as together we have the power to change the quality of cancer care in the United States, we can make a big impact this holiday season by finding creative […]
Call to Action: Contact Congress and Support the 2013 PACT Act
Earlier this month, the House Ways & Means and Senate Finance Committees unveiled a Medicare reform package that transitions the physician payment system to one that rewards physicians for the quality of care they provide instead of the volume of services they provide. These changes in Medicare, which will be implemented over a decade, hold […]
The Hill Online “Physician Payment Reform Matters to Cancer Patients”
Proposed Reforms Could Improve Quality of Care NCCS advocates for recommendations that could benefit cancer patients and the Medicare program As advocates for quality cancer care, we at NCCS have urged changes to the Medicare payment system to improve the care of Medicare beneficiaries with cancer. A bipartisan proposal developed by committees in the House […]
NCCS Policy Comments: Rewarding Quality of Care Among Other Measures in SGR Legislative Proposal
NCCS submitted comments to the Senate Finance Committee and the House Ways & Means Committee on a draft proposal to repeal the sustainable growth rate (SGR) formula and reform Medicare physician payment system. NCCS commended the committees on developing a bipartisan, bicameral approach that would reward quality of care instead of volume of services. In […]
NCCS Joins Colleagues in Offering Advice Regarding Standards for Sharing Patient-Specific Clinical Trials Data
The National Coalition for Cancer Survivorship joined colleagues in the cancer advocacy community in offering advice to the Food and Drug Administration (FDA) regarding the standards for sharing patient-specific clinical trials data with researchers. FDA has proposed that such data be made available to researchers, in hopes that such uses will advance knowledge about drugs, […]
