Mommy, Where’s Your Hair? (And Other Questions I Faced as a Parent with Cancer)
It’s one thing to have cancer, and quite another to have children witness it. At age 37, I was diagnosed with Stage IV inflammatory breast cancer; I had a large tumor in my left breast, and the cancer had spread to lymph nodes and a rib. And I had a 14-month-old son and a 4-year-old daughter. Parenting with cancer is sadly not an uncommon phenomenon; […]
ACA Update | February 13, 2017: More of the Same from Congressional Republicans
The Brookings Institute released a report entitled, “Five-State Study of ACA Marketplace Competition.” The study authors conducted on-the-ground interviews and research in five states, California, Florida, Michigan, North Carolina, and Texas, to see what is and what isn’t working. Our take away is this: of course the ACA is not perfect. But in the states that fully embraced and implemented the law, […]
What Caught Our Eye: ACA Analysis/Debate, Doc/Patient Communication, Universal Cancer Care, Financial Toxicity, Palliative Care Pain Studies
As the repeal and replace debate continues in Washington, the Brookings Institution spearheaded a study to look at what is and isn’t working with the Affordable Care Act. Their look at five states who implemented the ACA in various ways is informative to help inform where we go from here.
What Caught Our Eye: ACA Uncertainty, Coping Post-Treatment, Biden’s New Research Charity, Survivorship Care Plans
A new study by the Associated Press-NORC Center for Public Affairs Research found that only 16% of Americans feel the ACA should be repealed immediately. | Last weekend, Republican members of Congress gathered in Philadelphia, PA for a party retreat to address some of the most pressing topics. However, one topic remains without consensus is how they will approach the repeal and replacement of the Affordable Care Act.
ACA Update | February 3, 2017: Inadequate Replacement Plans
There remains no consensus among Republicans around a replacement plan for the ACA. In fact, more replacement proposals were presented, and after NCCS analyzed these proposals, we found that they do not come close to the level of protections the ACA provides currently and are therefore not adequate for cancer survivors.
What Caught Our Eye: ACA Debate, Thyroid Cancer Late Effects, Long-Term Follow-Up Care, Cervical Cancer Mortality, and Anxiety in Partners of Breast Cancer Survivors
For millions of cancer survivors and their families, Rep. Tom Price’s refusal to promise that no one will lose coverage because of President Trump’s executive order is unnerving to say the least.
ACA Update | January 26, 2017: Watch Our ACA Webinar
President Donald Trump and the Republican leadership in Congress will soon be making good on their campaign promise to repeal the Affordable Care Act (ACA). While replacement plans have been proposed, there is no consensus on an alternative.
ACA Update | January 24, 2017: The Cassidy-Collins Plan & ACA Executive Order
In early January, Congressional Republicans took the first steps toward repealing the ACA. Significant public outcry at the prospect of repealing the ACA without a replacement plan has been effective, as both legislators and the new administration now indicate that a replacement needs to be considered at the same time as repeal efforts.
Ask Your Oncologist About Clinical Drug Trials
If you had asked me in December 2012 if I would ever participate in a clinical drug trial, my answer would have been a resounding, “No.” The very word “trial” scared me off; I didn’t want to be a guinea pig, a test subject. I wanted proven medicine.
What Caught Our Eye: ACA Repeal Debate, the FDA’s Oncology Center of Excellence, and The Caregiver Space
What Caught Our Eye (WCOE), Week of January 16, 2017 What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention. Affordable Care Act Despite recent claims, individual health insurance markets are becoming more stable, not less, according to the Center for Budget […]
What Caught Our Eye: ACA Repeal Debate, the Trump FDA Transition, and Cancer-Related Fatigue
Today we are re-launching our week-in-review What Caught Our Eye blog series, where we recap the cancer policy articles, studies, and stories that caught our attention. Two cancer survivors and friends of NCCS wrote an op-ed in STAT News: “ACA replacement must include affordable insurance for preexisting conditions.”
CPAT Members’ Op-ed: ACA Replacement Must Include Affordable Insurance for Preexisting Conditions
NCCS’ Cancer Policy & Advocacy Team (CPAT) members Jen Campisano and Ben Fishman wrote a powerful op-ed for STAT News. Both diagnosed with cancer in their early thirties, they each have endured well over a million dollars in surgeries, radiation, and chemotherapy to treat their illness. Without the preexisting conditions and lifetime limit protections in […]
So Many Reasons to Save the Affordable Care Act
For six years now, the Affordable Care Act (ACA) continues to successfully improve health care in America. It provided coverage to 20 million people, allowed young adults to stay on their parents’ insurance until 26, emphasized preventative care, and sought to address inequalities in care, especially for women. For cancer patients and survivors, the impact […]
NCCS Joins Letter to Congressional Leaders Regarding the Affordable Care Act
NCCS joined with patient advocacy organizations in the Cancer Leadership Council (CLC) in submitting a letter to Congressional leaders regarding the Affordable Care Act (ACA). In our letter, we urge Congress not to repeal the ACA until specific proposals are identified to replace the ACA. Representing cancer patients, caregivers, and numerous other stakeholders, the letter […]
NCCS Statement on Signing Into Law of 21st Century Cures Act
The National Coalition for Cancer Survivorship (NCCS) applauds Congress passing and President Obama signing the 21st Century Cures Act. Cancer survivors and others dealing with serious illness are encouraged to see Congress and the President end 2016 on a positive note by providing a boost in funding for important biomedical research priorities.
Research Priorities for the Growing Population of Childhood Cancer Survivors
In the aftermath of this year’s historic Presidential election, one fact remains unchanged: cancer continues to be a devastating array of diseases that has touched or will touch the lives of virtually every American. As a 25-year survivor of childhood cancer, I want to insure that the health challenges faced by patients like me are emphasized as research priorities for the coming years are established.
Guest Post: I Must Advocate for Improved Quality of Life for Cancer Survivors
Guest Post by Virgie Townsend Advocate, Caregiver, and NCCS CPAT MemberI am the mother and caregiver for my son who was diagnosed with biphenotypic leukemia in March of 2011. Being there for my son gave me a first hand look at what cancer survivors go through. I think most of us have been touched by cancer […]
Share Your ACA Story
We at NCCS are carefully monitoring the transition to the Trump administration and what it means for cancer survivors, patients, and families. We need YOUR help to identify stories of cancer survivors who have benefited from the ACA, so we can share these with policymakers and protect the important provisions of the ACA that help cancer survivors.
Webinar Video: “Cancer Moonshot – Symptom Management and Funding”
This week, NCCS hosted the latest CPAT webinar, Cancer Moonshot: Symptom Management and Funding. The featured presenters were Deborah K. Mayer, PhD, RN, AOCN, FAAN; and MK Holohan, JD. Dr. Mayer is the Director of Cancer Survivorship at the UNC Lineberger Cancer Center and a member of the Cancer Moonshot Blue Ribbon Panel. Ms. Holohan […]
Guest Post: Mesothelioma Awareness and the Danger of Asbestos Exposure
Ten years ago, I was just another woman, wife, and mom-to-be. I was anxiously and happily awaiting the birth of my daughter when I began experiencing symptoms that seemed over the top for pregnancy. Just 3 ½ months after she was born, I found out the truth—that cancer had been growing inside my body for decades, and I had no idea.
NCCS Marks 30 Years of Cancer Survivorship Advocacy
On October 13, 2016, the National Coalition for Cancer Survivorship (NCCS) recognized its 30th anniversary of advocating to improve cancer care. Current and past NCCS staff and board members, cancer survivors, caregivers, and representatives from throughout the cancer community attended to commemorate this milestone. Today as the nation’s oldest survivor-led advocacy organization, the event highlighted […]
NCCS’ Paper on Oncologist-Patient Communication Published in Evidence-Based Oncology Journal
Earlier this year, the National Coalition for Cancer Survivorship (NCCS) conducted focus groups with patients and oncologists to gain insight into this critical relationship, hear what patients and physicians consider good communication, and determine what strategies could improve effective communication. An article describing the learnings from the focus groups was published in the October 2016 […]
NCCS Presents the Inaugural Ellen Stovall Award to Douglas W. Blayney, MD, FACP (Video)
At the National Coalition for Cancer Survivorship’s (NCCS) 30th Anniversary Reception on October 13, 2016, NCCS presented the inaugural Ellen Stovall Award for Leadership in Patient-Centered Care. The award was created to honor former NCCS CEO Ellen Stovall, who led the organization for more than twenty years and passed away in January 2016 from complications […]
Cancer Moonshot Blue Ribbon Panel Recommends Research to Minimize Debilitating Side Effects of Cancer Treatment
Today, the Cancer Moonshot Blue Ribbon Panel released ten recommendations to accelerate progress in cancer research. One recommendation is for symptom management research to minimize the debilitating side effects of cancer treatment. The recognition of the toll cancer treatment takes on survivors, during treatment and for the rest of their lives, is significant, and we […]
NCCS Comments on CMS’s Proposed Revisions to the 2017 Physician Fee Schedule
NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) on the proposed revisions to the 2017 Physician Fee Schedule. Our comments noted our support for the Oncology Care Model, but acknowledged that only a minority of cancer care providers and cancer patients will be part of this model. Therefore, changes to the […]
NCCS Comments on the FDA’s PDUFA Proposed Commitment Letter
NCCS submitted comments to the Food and Drug Administration (FDA) on the letter representing the agreement between FDA and regulated industry on goals for the re-authorization of the Prescription Drug User Fee Act (PDUFA VI). NCCS participated in the PDUFA stakeholder meetings held over the last year, and we support the role […]
Highlights from the 2016 CPAT Symposium and Hill Day
In June, over 50 patient advocates gathered in Washington, D.C. to take part in the NCCS 2016 Cancer Policy & Advocacy Team (CPAT) Symposium and Hill Day. Days One and Two Attendees heard and participated in a number of informational presentations, including “Current Issues in Cancer Care: The Economics of the Cancer Care System,” “Communications […]
Guest Post: For the Love of a Friend
My dear friend Avery[1], a woman I’ve known since we were 10 years old (in 5th grade together) was diagnosed with inflammatory breast cancer (IBC) in 2006. Having observed my mother’s battle with breast cancer in the 1980s, I considered myself a veteran of the struggle. Times change. Diseases evolve. The intervening years—from the 80s […]
Guest Blog: Example of a Case Impacted by the Help-Hurt Tool
Ms. M is an 81-year-old woman with Stage IV Pancreatic Cancer. She had remained in great health until her recent diagnosis, after which her energy had plummeted and she was spending over half the day in bed. Overwhelmed with the sight of their loved one losing her strength with each passing day, her family had […]
Guest Blog: Improving How Doctors and Patients Have Difficult Conversations
Having cancer is terrifying. Period. Often, well-intended doctors find themselves unable to mitigate this panic. As humans we are challenged with this disease as old as our chromosomes, struck at the core of our identity, of our body, of our sense of self. We are removed from work, from a normal agenda, from our families, […]
NCCS Comments on Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) Proposed Rule
NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) on the proposed rule on the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). Our comments focus on the role of consumers in identification, development, and endorsement of quality measures. As health care delivery and payment transition from a volume-based system, it […]
NCCS Joins Letter to Reagan-Udall Foundation Regarding the Expanded Access Navigator Program
NCCS joined with patient advocacy organizations in the Cancer Leadership Council (CLC) in submitting comments to the Reagan-Udall Foundation regarding the Draft Project Proposal for the Expanded Access Navigator for Individual Patient Access. In our letter, we commend the revisions to guidance documents, FDA educational materials, and the FDA website related to expanded access and […]
News You Didn’t Hear From ASCO’s Annual Meeting
We are nearing the end of the 2016 ASCO Annual Meeting in Chicago and looking forward to Vice President Joe Biden’s address on the National Cancer Moonshot Initiative this afternoon. The ASCO Annual Meeting provides updates on treatment advances and is followed by patients, physicians, biotech companies, and investors. Immuno-oncology is once again the hot […]
CPAT Webinar Available Online: “A Conversation Around Shared Decision-Making and A Patient Revolution—and The Role of the PACT Act”
“Let me introduce you to Maria Lisa. Maria Lisa is a patient from Peru, like I am, and she lives in Alaska. I would like to spend a few seconds here looking closely at her face and her situation. …Maria Lisa looks overwhelmed and tired. This is in part because Maria Lisa lives with multiple […]
Guest Post: Important To Weigh In On Survivorship Issues For Moonshot
“For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all.” With these words, President Obama launched his vision for the National Cancer Moonshot Initiative during his 2016 State of the Union address, which Vice President Joe Biden is leading. […]
Join the NCCS Cancer Policy & Advocacy Team: Empowering Those Touched by Cancer to Change Cancer Care
If you have ever wanted to use your cancer journey—either as a survivor or as a caregiver—to make a difference, you are invited to join the NCCS Cancer Policy & Advocacy Team (CPAT)! Driven by the energy and experiences of the CPAT Steering Committee, CPAT provides cancer survivors and caregivers with tools and training that […]
A Voice for Cancer Survivors in the PDUFA Stakeholder Meetings
In 1992, Congress passed the first Prescription Drug User Fee Act (PDUFA), a law that allows the Food and Drug Administration (FDA) to collect fees from drug companies that apply to the FDA for approval to market their drugs for specific medical conditions, e.g., a chemotherapy drug for ALK-positive lung cancer. All drugs that treat […]
NCCS Joins Patient Advocates in Proposing Alternative Approach to CMS’ Part B Drug Payment Demonstration
NCCS joined with patient advocacy organizations in the Cancer Leadership Council (CLC) in submitting comments to the Centers for Medicare and Medicaid Services (CMS) on its proposed Part B drug payment demonstration project. Over many years, the CLC has advocated reforms in Medicare reimbursement for cancer care, to support the delivery of evidence-based care that […]
CMS’ Hospital Compare Star Ratings a Valuable Tool for Cancer Survivors to Make Informed Decisions About Their Care
The Centers for Medicare and Medicaid Services (CMS) announced that they are postponing the release of their Hospital Compare Star Ratings. This is an unfortunate delay, as these ratings will serve as a valuable tool for cancer survivors and their families to have the information necessary to make informed decisions about where they receive care. […]
WCOE: Traveling for Treatment, Bipartisan Cancer Policy, Some Tumors Evade Targeted Therapy, Treatment vs Hype, Clinical Trials Info
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. From @cure_magazine On the Road to Recovery: Traveling for #Cancer Treatment https://t.co/TFFijL2dpT #survivorship — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) March 9, 2016 Via @RollCall: #Cancer Experiences Could Help Forge Bipartisan Policy https://t.co/aBxTEO1UiX […]
Watch the Complete Video Recording of the Ellen Stovall Tribute Service
On February 24, 2016, a tribute to celebrate the life and legacy of Ellen Stovall was held at the Carnegie Institution for Science in Washington, D.C. Family, friends, and colleagues shared their touching memories about a woman who was dedicated to her family, a three-time cancer survivor, and a tireless advocate on behalf of all […]
WCOE: Financial Issues Increase Pain, Ovarian Cancer Overlooked, Helping Patients Sleep, Colon Cancer Facts, and Missing Radiation Sessions
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. Sad (terrible!) and true, evidently: For Cancer Patients, Pain May Rise as Finances Dwindle – https://t.co/aORJocqABQ via @phillyhealthsci — Elaine Schattner MD, MA (@ESchattner) March 1, 2016 Experts find that #OvarianCancer still gets less medical […]
Vice President Joe Biden’s Tribute to Ellen Stovall’s Legacy
At yesterday’s moving tribute to Ellen Stovall, the following letter from Vice President Joe Biden was read to those in attendance. We wanted to be sure to share it with all of you. Dear Friends: It is with great sadness that I join you today in mourning the loss of Ellen Stovall—a beloved mother, spouse, […]
WCOE: Effects of Financial Toxicity, Patient Database Helps Researchers Nationally, New CLRC Handbook for Survivors, Metastatic Cancer and Employment
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. #FinancialToxicity and high #costs of care create an undue physical & emotional burden on #cancer #survivors: https://t.co/5TecXglJjC — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) February 17, 2016 Ohio State-led patient database fills national […]
Guest Post: For the Love of My Mother
In 1983, my mother was diagnosed with breast cancer. I was in college at the time and flew home to be by her side when she awoke from a radical mastectomy. My mother was fearless in the face of a disease that few spoke about outside of very private spaces. As a 22 year old, […]
WCOE: Peter Ubel Explores Healthcare Spending, Surgery Volume & Care Quality, Dr. Dizon Says “I Don’t Know,” and The Survivor Running Biden’s Moonshot
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. "Time to de-vilify healthcare debates…All these folks are responding to systemic incentives." @peterubel https://t.co/KbIXvlHf0m — Shelley Fuld Nasso (@sfuldnasso) February 12, 2016 How does receiving #cancer #surgery in high-volume #California hospitals affect quality? https://t.co/gkaZw9cp9G — […]
WCOE: Genetic Testing for Cancer Survivors, Survivorship as a ‘Chronic Condition,’ Post-Treatment Neuropathy, Moonshot Funding
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. Insurer's approval of genetic testing for some cancers raises questions https://t.co/zxk1j3y7EG via @usatoday — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) February 3, 2016 Important question: Is Cancer Survivorship a 'Complex Chronic Condition'? https://t.co/KxBYz3kAaS […]
NCCS Submits Comments to the Senate Finance Committee’s Bipartisan Chronic Care Working Group
NCCS recently submitted comments on the Senate Finance Committee’s “Bipartisan Chronic Care Working Group Policy Options Document” in response to the working group’s request for comments on possible policy options outlined in its report. Formed in May 2015, the working group is seeking ideas on how Medicare can improve the care of beneficiaries with multiple, […]
Join NCCS to Celebrate the Life and Legacy of Ellen Lewis Stovall
The National Coalition for Cancer Survivorship invites you to celebrate the life and legacy of Ellen Lewis Stovall. The tribute will be held on Wednesday, February 24, 2016 at the Carnegie Institution for Science in Washington, DC at 3:00pm. The address for the Carnegie Institution for Science: 1530 P Street NW Washington, DC 20005 Valet […]
WCOE: NCCS Moonshot Op-Ed, ACA Enrollment Deadline, Susan Gubar, BRCA Gene and Family, Poor Treatment Outcomes for Minorities
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. NCCS CEO @sfuldnasso op-ed in @TheHill on #CancerMoonshot: Three questions @VP Biden's team needs to answer. https://t.co/3NAGYoyfHQ — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) January 28, 2016 Still need health ins. for 2016? […]
WCOE: Childhood Survivor Study on Cost, Dr. Gawande talks Care Quality, Lilly’s Tribute to Ellen, Smita Bhatia in Cure Magazine
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. Serious issue for survivors of childhood cancer. Childhood Cancer Survivors Forgo Care Because of Cost https://t.co/wpsMkuCI6D — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) January 22, 2016 "Death is not an inherent failure. Neglect […]
WCOE: ASCO Cancer Survivorship Symposium, Honoring Ellen Stovall at #SurvOnc16
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. ASCO Announces Creation of Ellen L. Stovall Award @canceradvocacy https://t.co/fRA0EncZHj #SurvOnc16 — NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) January 15, 2016 Mary McCabe, RN, MA ends presentation with future cancer survivorship research needs. […]
ASCO Announces Creation of Ellen L. Stovall Award
The American Society of Clinical Oncology (ASCO) today announced the creation of the Ellen L. Stovall Award and Lecture for Advancement of Cancer Survivorship Care, intended to recognize and promote the work of pioneers and leaders in the growing field of survivorship. The annual award will honor Ellen’s contributions to the cancer survivorship movement and […]
Honoring Ellen Stovall, a Hero in Cancer Advocacy
A note from NCCS CEO Shelley Fuld Nasso: Dear Friends, I write to you with the devastating news that the cancer community lost a hero this week. Our dear friend and colleague, Ellen Stovall, passed away on January 5th due to cardiac complications related to her cancer treatments. A 44-year survivor of three cancer diagnoses, […]
Remembering Ellen Stovall: Arrangements Announcement
To all of Ellen’s friends and family, here are the plans for the coming week. Funeral services for Ellen Stovall will be livestreamed at 1 PM on Sunday, January 10 from Congregation Beth Israel in Honesdale, PA. This is the synagogue where Ellen was named, confirmed, and married. She is going home. Click this link LIVESTREAM, […]
Ellen Stovall: One Person Can Make a Difference
From 1992 to 2008, Ellen Stovall was the president and CEO of NCCS, the oldest survivor-led organization advocating for quality cancer care for all Americans. This video, filmed and produced in 2008, features interviews from NCCS co-founders Dr. Patti Ganz and Dr. Fitzhugh Mullan, Dr. Julia Rowland, Dr. Zeke Emanuel, the late General H. Norman […]
Remembering Ellen Stovall: A Message from Sandy Welton, Chairman of the Board of NCCS
20 Years Later Series Wrap-Up: Julia Rowland Shares a History of the Imperatives and the Current Challenges in Survivorship
This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and […]
Guest Video: Meghan Gutierrez of LRF Discusses Progress in Lymphoma Treatment and Advocacy
This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and […]
WCOE: Current Status of State Medicaid Expansion, Diversity of Clinical Trials, ACA Enrollment Deadline Extended
What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention. UPDATED #MedicaidExpansion map: Includes status changes for #Virginia & #Utah https://t.co/03PuV7IlHO pic.twitter.com/bAtfVjd1vs — KFF (Kaiser Family Foundation) (@KFF) December 17, 2015 Via @NPR: Clinical Trials Still Don't Reflect The Diversity Of America https://t.co/wfziapU5Xu — NCCS […]
