NCCS Statement on CBO Report of Revised American Health Care Act
NCCS today issued the following statement following the release of the Congressional Budget Office (CBO) report on the updated American Health Care Act. “Today’s CBO report shows what we already knew—that the American Health Care Act (AHCA) would be devastating for cancer patients, survivors, and their families,” said NCCS CEO Shelley Fuld Nasso. “The revised AHCA that was passed by the House […]
NCCS Sends Letter to Sen. Hatch on Health Care Reform Priorities
(NCCS) sent a letter to Sen. Orrin Hatch (R-UT), Chairman of the Senate Finance Committee, in response to his office’s request for input from stakeholders regarding health care reform. “As the Senate continues to discuss health care reform, and in light of the destructive American Health Care Act passed by the House, we must continue conveying the priorities of cancer patients and survivors,” said NCCS CEO Shelley Fuld Nasso. […]
What Caught Our Eye: AHCA Analysis, Medicaid Caps, Obamacare Helped Early Detection, ESPN’s Holly Rowe, Counseling Improves Care Planning
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. In the Spotlight – Via Modern Healthcare: “Up to 6.3 million people could end up paying substantially higher premiums if a bill similar to the House’s Obamacare replacement becomes law, according to the Kaiser Family Foundation.” […]
ACA Update | May 19, 2017: Senate Negotiates their Version of the AHCA, Waits for New CBO Score
This week, NCCS and other patient advocacy organizations met with Senate offices regarding health care reform. The groups explained that the American Health Care Act (AHCA) as passed by the House is a serious threat, and does not in fact protect individuals with pre-existing conditions such as cancer. As we reported recently, the MacArthur Amendment guts protections for pre-existing conditions by allowing states to opt out […]
Young Adult Cancer Survivors Worry What the AHCA Would Mean for Them
Last month, I had the honor of speaking at CancerCon, an incredible gathering of 650 adolescent and young adult (AYA) cancer survivors, their caregivers, and health care providers and advocates from across the country. Along with Kelsey Nepote, NCCS Advocacy Manager, and Kate Houghton, CEO of Critical Mass, we presented “From Patient to Advocate – Using Your Voice to Make Change.” We talked about the journey from […]
What Caught Our Eye: GOP Lawmakers Face AHCA Backlash at Home, A Profile on New FDA Chief Scott Gottlieb, and Survivorship Care Planning
What Caught Our Eye (WCOE), May 12, 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. – “According to the nonpartisan Center on Budget and Policy Priorities, at the highest point of all, the 400 households with annual incomes exceeding $300 million apiece, the tax cut would be worth an estimated $7 million.” […]
ACA Update | May 5, 2017: AHCA Passes in House, Now Faces Major Obstacles in Senate
Yesterday, the House of Representatives passed the American Health Care Act (AHCA), including an amendment authored by Congressman Tom MacArthur (R-NJ) and brokered with members of the Freedom Caucus, which would allow states to opt out of providing essential health benefits and community rating. Essential health benefits (EHBs) are ten services the ACA requires insurers to include in all plans, such as hospitalization […]
What Caught Our Eye: House Passes ACA Repeal, Faces Senate Hurdles; Risky Prostate Cancer Treatment; Medical Debt; ‘Right to Try’; Rx Pricing
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. “House Republicans approved their plan to replace the Affordable Care Act on Thursday. Here’s a rundown of key provisions in the American Health Care Act and what would happen if the Senate approves them and the bill becomes law.” […]
NCCS Joins Cancer Organizations to Express Opposition to the American Health Care Act
NCCS joined with patient advocacy organizations in the Cancer Leadership Council (CLC) in submitting a letter to Congressional leaders regarding the American Health Care Act (AHCA): CANCER LEADERSHIP COUNCIL A PATIENT-CENTERED FORUM OF NATIONAL ADVOCACY ORGANIZATIONS ADDRESSING PUBLIC POLICY ISSUES IN CANCER Cancer Organizations Express Opposition to American Health Care Act Washington, May 4, 2017 […]
Poor Amendments Cannot Fix A Bad Bill
By Ben Fishman, NCCS Board Member—Three years ago this week, a specially-trained neurosurgeon opened up my scalp, and for next 12 hours, he delicately resected as much of a golf-ball sized tumor as possible without permanently damaging the area of my brain that controls speech and fine motor skills. The fact that I can type this article on a normal keyboard and read it aloud is a testament to the doctor’s skill. Without him, or the team who supported the procedure […]
ACA Update | April 28, 2017: AHCA 2.0 Is Released (Worse for Patients than the Original Bill)
As we previously reported, the American Health Care Act (AHCA) – the effort to replace the Affordable Care Act – was not even brought to a vote in the House of Representatives before the spring Congressional recess. Members of Congress confirm that advocates who opposed the AHCA were key to the failure of the original bill. Earlier this week, the full text of an amendment to the AHCA was published and is now being considered […]
What Caught Our Eye: A Story of Two Survivors’ Enduring Friendship; GOP Still at Odds on Healthcare; Living with an Ostomy; The Perils of Hype in Cancer
What Caught Our Eye is our week-in-review blog series.“This is a story of survivors — of patients who were expected to die more than two decades ago but didn’t.” STAT News’ Bob Tedeschi provides an in-depth look Dr. Brian Druker and three of his patients, including Doralee Mortensen and Judy Orem, who became best friends after meeting in the clinical trials for the cancer drug Gleevec in the late 1990s.
Pre-Existing Conditions and High Risk Pools: A Cancer Survivor’s Experience Purchasing Insurance Before the ACA
My story began ten years ago in April when I was diagnosed with Stage III colon cancer. The treatments were successful in that the cancer cells were eliminated, but my liver was damaged by the toxic effects of the chemotherapy and the radiation. My company was very supportive and I continued to work through my long recovery period. But after several years I found that the travel demands of my job were taking too great […]
ACA Update | April 21, 2017: House GOP Readies a Revised Health Care Bill
“Healthcare is not dead, we’re still working on it.” – Paul Ryan | During recess this week and last, Members of Congress continued to hear from constituents at town hall events where a major focus has been on health care and backlash against efforts to repeal the Affordable Care Act. Meanwhile, the conservative House Freedom Caucus has been working with moderate Republicans to come up with an amendment to add to the […]
What Caught Our Eye: A New GOP Health Plan, Looming Uncertainty for Insurers, Sharing Genetic Cancer Risks with Children, and More
Trumpcare is back. And worse than ever. — Via Vox.com — “House Republicans are floating a new amendment to their health care bill — one that would likely cause even more Americans to lose coverage than the last version. Leaders of the staunchly conservative Freedom Caucus and the more moderate Tuesday Group have reportedly hashed out a proposal that would let some states ditch key Obamacare policies, such as the […]
ACA Update | April 14, 2017: Town Hall Headlines, Cost-Sharing Subsidies, the “Death Spiral”, and Trump’s Final “Market Stabilization” Rule
Although Members of Congress are on recess this week and next, talks of ACA and its future continue. Grassroots support of the ACA has made headlines again at town hall events across the U.S. during this recess. CBS News reports on several town hall meetings, where Republican lawmakers faced intense criticism for their position the American Health Care Act (AHCA). The Hill reports that some Members of Congress are […]
What Caught Our Eye: Costs of Care in a For-Profit System; New ACA Reporting; Precision Medicine; PSA Testing; End of Life Care
What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles that caught our attention. Published this week, Elisabeth Rosenthal’s An American Sickness: How Healthcare became Big Business and How You Can Take it Back describes the business of health care and how it fails patients. See her interview with Terry Gross on Fresh Air, as well as her tips for consumers to avoid unnecessary costs. […]
ACA Update | April 10, 2017: New GOP Proposal Would Undermine Pre-Existing Condition Protections
As talks of repeal and replace quickly resurfaced after the downfall of the American Health Care Act (AHCA), Republican’s newest proposals are even more devastating for cancer patients than the AHCA would’ve been. The newest Republican health care proposals would eliminate even more patient protections, including the essential health benefits that require insurers to cover services such as chemotherapy, hospital visits, […]
What Caught Our Eye: Next Steps for the ACA; Gottlieb’s Confirmation; ASCO Statement on Right-to-Try; Gene Mutations in Childhood Survivors
Some key findings of the most recent Kaiser tracking poll: the public thinks it’s a “good thing” that the AHCA failed, believes President Trump and the Republican party are responsible for problems with the ACA going forward, and want to see the Trump administration make the ACA work for consumers. “Despite divided views towards the 2010 health law, three-fourths of the public think President Trump and his administration […]
What Caught Our Eye: A Cancer Survivor’s Comic, ACA Repeal Back on GOP Agenda, New Susan Gubar Piece, Past NCI Chief on Trump’s NIH Cuts
Andy Slavitt, former acting director of CMS, argues that the failure of Trumpcare last week presents the opportunity to end the divisiveness that hampered the Obamacare era and move forward in a bipartisan direction that focuses not on destructive rhetoric, but squarely on reducing premiums and expanding access for all Americans. […]
ACA Update | March 31, 2017: The Fight to Protect the ACA Is Far From Over.
Last week at a press conference after the American Health Care Act (AHCA) was pulled from the House floor, Paul Ryan said, “The ACA is the law of the land for the foreseeable future.” But this week lawmakers signaled that the fight is far from over. Republican leadership vowed to restart negotiations for repealing the ACA. While Republicans might try to resurrect repeal and replace, they could in the meantime focus on […]
ACA Update | March 24, 2017: Speaker Ryan Withdraws the AHCA
Today, Speaker of the House Paul Ryan withdrew the American Health Care Act (AHCA) when it became clear that he did not have the votes to pass it. In his press conference, he said that the Affordable Care Act (ACA) is the “law of the land for the foreseeable future.” The National Coalition for Cancer Survivorship (NCCS) strongly opposed the AHCA, which would have harmed millions of Americans, including cancer patients and […]
The AHCA’s 52 Million Uninsured Is Not “Freedom”
Throughout the repeal and replace debate, NCCS has been meeting with Congressional offices to share our concerns from the cancer patient perspective. During one of those visits, we simply asked, “At the end of the day, what do you hope [the AHCA] accomplishes since there will be millions left uninsured?” Without hesitation, the staffer replied, “People will have the choice to go without insurance if they want to. It’s about freedom.” […]
87 Organizations Call on Congress to Protect Medicaid
Bethesda, MD – 87 organizations issued a letter today calling on Congress to take a hard look at the likely significant and life-threatening consequences of the American Health Care Act on millions of patients. The organizations represent Americans with complex health needs who rely on Medicaid for access to care, prevention and treatment.For example, Medicaid […]
What Caught Our Eye: AHCA Analysis; Trump Proposes Huge Cuts to NIH; Young People & Colon Cancer; Rx Sticker Shock
What Caught Our Eye – March 17, 2017 | “It was strange circumstances Obama found himself in. He was leaving office an unusually popular president, with approval numbers nearing 60 percent. But his most important domestic achievement was imperiled. Republicans had spent years slamming Obamacare for high premiums, high deductibles, high copays, and daunting complexity. Donald Trump had won the […]
ACA Update | March 17, 2017: The AHCA CBO Score, a Cancer Survivor’s Question for Tom Price, and New Polling
This week’s news was dominated by the nonpartisan CBO issuing its long-awaited analysis of the AHCA. The scathing report was worse than many had predicted, estimating that 24 million more individuals would be uninsured in comparison to if the Affordable Care Act (ACA) remained in place. That would total 52 million Americans without health insurance by 2026, the highest uninsured rate in the nation’s history. […]
NCCS Statement on Nomination of Dr. Scott Gottlieb for FDA Commissioner
NCCS applauds the nomination of Dr. Scott Gottlieb for commissioner of the FDA. Dr. Gottlieb’s experience as a physician, a policymaker, and a patient uniquely qualifies him to lead the FDA at this important time. The agency confronts a rich pipeline of new products for cancer and other illnesses, and these products raise complicated scientific and clinical issues. FDA must also implement the provisions of the 21st Century Cures […]
NCCS Statement on CBO Score of the American Health Care Act (AHCA)
The Congressional Budget Office (CBO) analysis of the AHCA provides further evidence that this legislation would be devastating for cancer patients. The CBO estimates that compared to the ACA, 14 million more people would be uninsured in 2018. Health care coverage is a leading indicator for cancer outcomes. […]
What Caught Our Eye: ACA Replacement Bill Analysis; Cancer Care Reality in an “Ocean of Hype;” a Highly Effective CML Drug
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. The American Health Care Act (AHCA) was introduced in the House earlier this week. A great deal has been written analyzing this legislation. STAT News has an honest and sobering article about the need to “do better in communicating the reality of cancer care to patients.” […]
ACA Update | March 10, 2017: GOP Repeal Plan, the AHCA, Moves Forward in the House
The AHCA, the long-awaited Republican bill to repeal and replace the Affordable Care Act (ACA), was unveiled earlier this week. NCCS released a statement, explaining that this legislation would be devastating for older, sicker, and poorer Americans, let alone those facing a cancer diagnosis. The AHCA hurts older Americans the most by allowing insurance companies to charge up to five times as much for premiums […]
NCCS Statement on the American Health Care Act
The AHCA seeks to repeal and replace significant portions of the current health care law, the Affordable Care Act (ACA). Even upon initial review, there is no question that the American Health Care Act (AHCA) is a significant step backward from the ACA’s affordability and patient protections, and will hurt millions of Americans, including cancer patients and survivors. […]
What Caught Our Eye: High-Risk Pools, “Trumpcare,” Childhood Cancer Survivors, Medicaid Spending, Trump’s FDA Deregulation
What Caught Our Eye (WCOE), March 3, 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 “States Be Warned: High-Risk Pools Offer Little Help At A High Cost” Do high-risk pools offer little help at a high […]
ACA Update | March 2, 2017: GOP Tax Credits, Medicaid Proposals, and a ‘Secret’ Replacement Bill
In his address to a joint session of Congress this week, President Trump shared his priorities for the replacement of the Affordable Care Act (ACA). David Nather of Axios wrote, “It wasn’t detailed enough to be called a proposal, but Trump outlined enough principles to give a general idea of what he wants. He got more specific on some issues than he has in the past […]
NCCS Submits Comments on CMS Proposed ACA Market Stabilization Rule
NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) on the proposed rule that is intended to “help stabilize the individual and small group markets.” The Affordable Care Act (ACA) has provided health insurance coverage—and therefore access to health care—for many cancer survivors who were previously denied insurance coverage due to their […]
ACA Update | February 24, 2017: The Leaked Draft ACA Replacement Bill
A draft reconciliation bill that outlines the GOP Obamacare replacement was leaked by Politico earlier today. The 106-page draft bill confirms many of our concerns that a Republican replacement plan will be catastrophic for cancer patients. Sarah Kliff from Vox.com outlines what this bill would do and what it would mean for sick individuals. […]
What Caught Our Eye: ACA Support at All-Time High, Kasich: ACA Repeal is ‘Very Bad Idea,’ Cancer’s Financial Burden, and Your Cancer Genome
What Caught Our Eye is our week-in-review blog series. Ohio Gov. John Kasich says he won’t “sit silent” and watch the Affordable Care Act’s Medicaid expansion get “ripped out” as Republicans work to repeal the law. | High-risk pools are at the center of most of the Republican plans to replace the ACA.
What Caught Our Eye: GOP ACA Talking Points Analysis, Right to Try Op-Ed, “Worry, Scan, Treat, Repeat”
Kaiser Health News’ Julie Rovner analyzes key Republican talking points on the ACA. One concern consumers have is high out-of-pocket costs. But, Rovner writes, “Republicans’ most popular proposals for replacing current individual insurance plans — cutting back on required benefits and giving more people access to tax-preferred health savings accounts — would likely increase […]
ACA Update | February 17, 2017: GOP Outlines Replacement, Congress Goes Home for District Work Period
On Thursday, House Speaker Paul Ryan (R-WI) announced that Republicans plan to introduce repeal and replace legislation the week of February 27. This followed a Republican caucus meeting where the elements of the legislation were outlined. The Hill summarized the plan saying, “the GOP bill will include tax credits, an expansion of Health Savings Accounts, money for […]
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 […]
