Affordable Care Act Resources
Prior to the Affordable Care Act (ACA), cancer survivors were at the mercy of the health care system, often forced to pay exorbitant premiums or simply denied coverage altogether. Today, America’s 16 million cancer survivors benefit from the ACA’s patient protections that are critical to providing them with quality, affordable, and accessible health care coverage. NCCS is actively engaged in advocating to ensure this unprecedented access continues.
On this page we provide regular updates on this ongoing debate, what it means for cancer survivors, and how survivors and advocates can make their voices heard.
How Can I Get Involved?
Take Action
Call Your SenatorsMeet Your Members of Congress In Person
Meet with your Members of Congress at district events. Find a town hall meeting near you »
A quick visit to share my healthcare story & thank @RoKhanna for his efforts to #ProtectOurCare w/ @sfuldnasso of @CancerAdvocacy #CPAT17 pic.twitter.com/r0eoqGfurl
— Stacey Tinianov (@coffeemommy) June 27, 2017
Check out our printable PDF tip sheet to help you prepare for calls, meetings, and town hall events. The sheet also contains sample questions to ask your Members of Congress.
NCCS Is Here to Help
We are happy to assist you in these advocacy efforts to support cancer patients and survivors. If you are interested in scheduling a meeting either in your local Congressional office or in Washington DC, please email our Public Policy Manager, Lindsay Houff, at lhouff@canceradvocacy.org.
Another important way you can make your voice heard is through op-eds in local newspapers. NCCS would love to help you draft an op-ed and provide instructions on getting the article published.
Social Media
Engage with Members of Congress on their social media platforms. Comment on their Facebook pages, or tweet directly at them (use the hashtag #ProtectOurCare). They and their staff DO pay attention to these things.
C-Span’s List of Congressional Twitter Handles »
Do you have questions or need assistance? We can help you set up meetings with your Members of Congress.
Please contact Lindsay Houff, Manager of Policy at lhouff@canceradvocacy.org.
ACA Status Updates
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HEALTH CARE HIGHLIGHTS
ACA: The Affordable Care Act Reaches 10-Year Milestone and Will Be Challenged Again
The Supreme Court agreed on Monday to hear a third major challenge to the Affordable Care Act (ACA). The court did not say when it would hear the case, but arguments are likely to begin this fall, with a decision in the spring or summer of 2021.
Read Vox’s primer to learn about the entire case and what is expected to happen next.
The ACA has been the law of the land for ten years now. NCCS celebrated this milestone with other patient advocacy groups by participating in briefings on Capitol Hill yesterday. The ACA has provided health coverage to millions more people through exchanges and expanded Medicaid and allowed young adults to remain on their parents’ health plans until age 26. The ACA’s patient protections are essential to cancer patients, including protections for people with pre-existing conditions, essential health benefits, out-of-pocket maximums, and the elimination of annual and lifetime limits, to name a few.
Coronavirus Emergency Supplemental Now in Effect
The House and Senate both passed emergency funding bills this week, which President Trump signed this morning, to aid in combatting the virus. The total package is approximately $8.3 billion, which is more than three times the original emergency request from the President.
Politico's Caitlin Emma reported about the package:
WHAT WE’RE READING
Half of New Colon and Rectal Cancer Diagnoses Are Now in People Age 66 and Younger, Report Finds
CNN
Colon and rectal cancer cases are rising in young adults, according to the American Cancer Society's new report, "Colorectal Cancer Statistics, 2020."
Scientists are surprised by how fast the rising incidence of colorectal cancer is in younger age groups.
Colorectal cancer is the third leading cause of cancer death among men and women in the United States.
A Young Cancer Patient Found an Exercise Bike Helped Him Endure Chemotherapy. Now He Wants Others to Have the Same Chance.
The Washington Post
Mathew Simon discovered exercising during chemotherapy made him feel less fatigued when he rode a virtual reality bike daily in his hospital room. He felt like he was helping himself stay healthy. That's why he started an organization to place virtual reality bikes on adolescent and young adult oncology floors in hospitals nationwide.
Waive Fees for Coronavirus Tests and Treatment, Health Experts Urge
The New York Times
New York is among the first states in the country to waive some costs for people who undergo testing for the coronavirus, as reported by The New York Times. The federal government is also considering paying for care for those affected.
Even though identifying people with the virus in the early stages is critical to preventing a spread of the disease, Dr. Graves said, many people are likely to wait out any symptoms to avoid expensive care.
On behalf of NCCS, we urge you to be vigilant with your health needs.
CHART OF THE WEEK
The Role of Health Care in the 2020 Election
Kaiser Family Foundation
Check out the latest Kaiser Family Foundation Health Tracking Poll, which finds health care among the top issues for all voters, as well as the crucial group of voters who have not yet made up their minds about whom to vote for in 2020.
Related Posts
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HEALTH CARE HIGHLIGHTS
How Should Patients Be Protected From “Surprise” Medical Bills?
The Latest: Democratic and Republican House staffers met with Speaker Pelosi’s office to try to protect patients from getting large “surprise” medical bills. There was no breakthrough, according to The Hill.
The Issue: Patients can receive extremely high medical bills during emergency situations when they are taken to an out-of-network hospital, or from out-of-network providers, even at an in-network facility or hospital. There is consensus about the problem, but not about the solution. Journalist and physician Elisabeth Rosenthal outlines in the New York Times the biggest roadblock: the players in the health care industry are at war over “who gets to keep the fortunes generated each year from patient illness.”
Rosenthal adds:
Meanwhile: "All sides agree that patients should be protected," according to The Hill. Yet, the leaders of the House Energy and Commerce Committee and the House Ways and Means Committee have very different solutions and have put forward rival bipartisan bills.
For now, patients are still unprotected from surprise billing.
Affordable Care Act (ACA) Updates
Enrollment Experiment Yields Increases: California reinstated the individual mandate and expanded the ACA’s insurance subsidies in an experiment to see what happens when policymakers “beef up” the ACA. The result was a 41% increase in new enrollment.
Supreme Court Decisions Expected: Friend of NCCS and ACA expert, Katie Keith from Georgetown University, says the Supreme Court will issue at least two ACA-related decisions before July 2020. The issues — the risk corridors program and the religious or moral exemptions to the contraceptive mandate — could have implications that extend beyond the ACA.
WHAT WE’RE READING
The Emotional Trauma of Fear of Cancer Recurrence
Healthline
NCCS CEO Shelley Fuld Nasso talked to Healthline.com about the fear of cancer recurrence.
NCCS CPAT advocates Jersi Baker and Liza Bernstein each shared their experience of facing multiple recurrences for the article.
Liza Bernstein: “The traumas of everything you go through, surgeries, toxic treatments, your life disrupted, your brain goes to, ‘I could go back to that or worse.'”
Jersi Baker: “My tagline that I always [Tweet] is ‘Live life now’ and I really believe that.”
Young Cancer Survivors Have Higher Risk of Severe Health Problems Later
New York Times
A recent study suggests that people who survive childhood cancers are more likely to experience significant health problems, such as heart disease and recurring or new cancers, and die prematurely. The study’s lead author, Dr. Tara Henderson, director of cancer survivorship at the University of Chicago Comprehensive Cancer Center, said that with improved survival from childhood cancer, there is a need to focus more on long-term side effects of treatment.
Op-Ed: Think You Want to Die at Home? You Might Want to Think Twice About That
LA Times
Dr. Nathan Gray, assistant professor of medicine and palliative care at Duke University School of Medicine, reflects on the burdens of patients dying at home.
WHAT WE’RE WATCHING
Health Care For All: What Does That Mean?
Kaiser Health News Video
Health care is a top issue for many voters and, as Democrats fight over how best to cover more people, voters are worried about the COST of care — and for good reason. U.S. health spending is dramatically higher than other industrialized nations. Kaiser Health News explains health plans in the 2020 elections:
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HEALTH CARE HIGHLIGHTS
NCCS Joins ACA Amicus Brief
NCCS joined with other patient groups in an amicus brief (a friend of the court brief) this week to challenge the administration’s October 2019 proclamation that would prevent immigrants from entering the U.S. if they cannot show they will be covered by approved health insurance within 30 days of entering the U.S. The proclamation would allow ACA-exempt, short-term limited duration insurance plans which, as we have reported, do not provide minimum essential coverage. The brief argues the proclamation undermines domestic health care policy, specifically the ACA and Medicaid programs. Read the entire brief here.
A New Bipartisan Surprise Billing Bill
Today, the House Ways and Means Committee released the legislative text of their bipartisan surprise medical billing proposal, The Consumer Protections Against Surprise Medical Bills Act. After Congress failed to pass surprise billing legislation in 2019, Congressmen Richard Neal (D-MA) and Kevin Brady (R-TX) developed their own version that includes arbitration, where a third-party arbiter would settle disputes over surprise medical bills. This legislation is designed to curb unexpected medical bills from out-of-network specialists during emergency room visits.
HEALTH POLICY QUIZ
"Health Issues and the Election Quiz"
Kaiser Family Foundation
Test your knowledge about health facts, policy issues, and proposals emerging among presidential candidates in a top voter issue: health care!
Take Kaiser Family Foundation's Quiz »
WHAT WE’RE READING
"When the Teenager or Young Adult Has Cancer"
New York Times
Cancer may be known as a disease of the aging but it does not discriminate against adolescent and young adult survivors. This younger population of survivors are often caught in the “no-man’s land” of oncologists who usually have pediatric or senior patients. What about the survivors who may feel out of place sitting in an infusion chair receiving treatment next to a child?
"What to Do When a Coworker Has Cancer"
Fast Company
Fast Company discusses how having cancer can change everything and provides concrete tips for how and what to say to a colleague who has been diagnosed with cancer.
"Immune Cell Which Kills Most Cancers Discovered by Accident by British Scientists in Major Breakthrough"
The Telegraph
Cardiff University researchers discovered a major breakthrough in a new type of immune cell that kills most cancers. “This was a serendipitous finding, nobody knew this cell existed.”
WHAT WE’RE LISTENING TO
"KHN's 'What The Health?': Fact-Checking President Trump's State Of The Union"
Kaiser Health News
During the State of the Union (SOTU) address this week, President Trump had a lot to say about health care, including pre-existing condition protections, Medicare, and Medicaid.
Listen to top health care reporters analyze the SOTU address »
Episode Length: 44 Minutes
Webinar – Redefining Functional Status: A Patient-Led Quality Measurement Effort
NCCS
What would health care measurement look like if it reflected what patients and caregivers say matters most to them? NCCS set out to answer that question. We hosted a webinar yesterday to share the results of our project, “Redefining Functional Status: A Patient-Led Quality Measurement Effort.”
Length: 57 Minutes
Related Posts
“The National Coalition for Cancer Survivorship (NCCS) represents people with all forms of cancer in efforts to ensure access to quality cancer care. NCCS objects to the guidance issued today, which would provide states advice on how to cap the Medicaid expansion program.
“Block grants or caps on Medicaid spending may have several results. States that implement Medicaid block grants will reduce their Medicaid rolls, reduce benefits for those who retain eligibility, increase cost-sharing, or reduce provider payments. Any of these actions, and certainly all of them combined, will eliminate access to care for some and affect the adequacy and quality of care for others. We do not believe that the flexibility of block grants can be utilized without affecting patients negatively.
“The Centers for Medicare & Medicaid Services (CMS) has named its new block grant program the Healthy Adult Opportunity and stated that it will provide states flexibility in providing care to adults under age 65 who are not eligible for Medicaid as a result of disability or in need of long-term care. The name of the program ignores the fact that adults who are on Medicaid expansion are ‘healthy’ only until they receive a cancer diagnosis or other serious diagnosis. At that point, they must have Medicaid benefits that are adequate and comprehensive so that they can receive the treatments they need to survive cancer. Such access may well not be available in a block grant program.
“We oppose the movement to Medicaid block grants, which will compromise access to quality cancer care for many enrolled in Medicaid expansion programs.”
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HEALTH CARE HIGHLIGHTS
Supreme Court Will Not Consider ACA Lawsuit Until After 2020 Election
The Supreme Court announced on January 21 that it would not consider the ACA lawsuit on an expedited basis before the 2020 election. NCCS is disappointed in this decision but remains hopeful the Supreme Court will hear the case later this year. NCCS recently joined with other patient groups in an amicus brief to the Court asking them to fast-track consideration of whether the individual mandate’s removal rendered the law unconstitutional. Read more about the decision »
Administration Prepares to Allow Medicaid Block Grants
The Trump administration is reportedly planning to allow states to convert Medicaid funding to block grants. Medicaid is currently funded by the federal government matching what a state spends on health care for low income Americans. A block grant would cap the amount of money provided to a state and provide the state flexibility in how to spend it. The cap may force states to cut costs and could jeopardize health care benefits. States that seek waivers likely would not have to adhere to health benefit standards, potentially leaving individuals without comprehensive health care.
CHART OF THE WEEK
Block-Granting Medicaid Jeopardizes Funding Flexibility
Center on Budget and Policy Priorities
The Center on Budget and Policy Priorities says that block-granting Medicaid would “strip away the federal commitment to help vulnerable individuals and families who are eligible for these programs when they need them.” Fixed funding, such as a block grant, would not provide access to increased needs, including economic downturns, natural disasters, and higher costs. The financial inability to provide for spikes like these could leave Medicaid beneficiaries more vulnerable.
WHAT WE’RE READING
Cancer’s Emotional Isolation
CURE Today
"Cancer’s Emotional Isolation," by patient advocate Barbara Tako, highlights the isolation cancer survivors can feel, even from their own family members who do not understand the experience of living with cancer. Tako admits the struggle in turning each day’s emotions into a positive — another challenge only others on similar paths would understand. And yet, she reminds us to be gentle with ourselves when moments of isolation happen.
The Nursing Shortage is Threatening Our Care
New York Times
A first-hand account by a patient reveals the dangers of the nursing shortage, which places undue strain on overburdened nurses:
The shortage is expected to increase:
Insurance Status Helps Explain Racial Disparities in Cancer Diagnosis
National Institutes of Health (NIH) Director's Blog
Dr. Francis Collins, Director of the National Institutes of Health, writes that nearly half of racial disparities in late-stage breast cancer diagnoses are due to differences in health insurance coverage.
WHAT WE’RE LISTENING TO
'What the Health?' Podcast: SCOTUS Punts on ACA Case – For Now
Kaiser Health News
Four health news reporters discuss the Supreme Court’s decision to decline hearing the ACA lawsuit right now. Tune in to hear what that may mean for the future of the law. Listen Here »
Episode Length: 49 Minutes
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HEALTH CARE HIGHLIGHTS
Affordable Care Act (ACA) Lawsuit Update
Before Christmas, the Fifth Circuit announced its ruling in the ACA lawsuit, Texas v. US. The Fifth Circuit Court of Appeals, in a 2-1 opinion, upheld the District Court ruling that the individual mandate is unconstitutional. However, the Fifth Circuit remanded the case back to the District Court for a more careful consideration of the issue of severability. In effect, the Fifth Circuit directed the District Court judge to analyze each provision (including pre-existing condition protections) of the Affordable Care Act and determine whether it can stand, even if the individual mandate is considered unconstitutional. The District Court had previously ruled that the individual mandate was not severable from the ACA, so the entire ACA would be considered unconstitutional.
On January 3, a coalition of 20 Democratic Attorneys General filed a legal brief requesting that the Supreme Court immediately take up a challenge to the ACA, calling on the justices to decide the law’s fate on an expedited basis, before the presidential election in November.
NCCS joined with 24 patient groups in a statement endorsing the expedited Supreme Court review of the ACA case. View the statement »
Health Policy Experts Wary of Drug Importation Plan
In mid-December, the Trump Administration announced a plan to allow the importation of prescription drugs from Canada in an effort to reduce the cost of these medications.
Health policy experts are unconvinced that this strategy will help lower drug costs, or that it is even possible. Kaiser Health News reports that the plan is unlikely to work because Canada doesn't produce enough drugs, nor does it seem to be on board with exporting the ones it does have to America. Beyond that, experts say the president's plan will have little to no impact on what consumers pay for drugs. Politico outlines why importation is not the answer.
CHART OF THE WEEK
Progress On Lung Cancer Drives Historic Drop In U.S. Cancer Death Rate
National Public Radio (NPR)
The American Cancer Society released their annual Cancer Statistics report. The study found overall cancer mortality dropped 2.2% from 2016 to 2017—the largest drop ever recorded in one year—thanks in large part to improvements in certain lung cancer and melanoma treatments. However, progress against other cancers has slowed, mainly due to obesity and persistent economic, geographic, and racial disparities in cancer care.
American Cancer Society: "Cancer Facts and Figures 2020" »
WHAT WE’RE READING
Op-Ed: Immunotherapy, precision medicine in lung cancer drive sharp decline in cancer mortality overall
The Cancer Letter
Dr. Otis Brawley discusses the recent drop in cancer mortality described in the American Cancer Society report, attributing the decline to immunotherapy and precision medicine advancements in lung cancer.
A.I. Comes to the Operating Room
New York Times
Brain surgeons are using artificial intelligence (AI) to diagnose tumors accurately and much faster, according to a report in the journal Nature Medicine. "The new approach streamlines the standard practice of analyzing tissue samples while the patient is still on the operating table, to help guide brain surgery and later treatment."
My 92-Year-Old Father Didn’t Need More Medical Care
The Atlantic
Health policy expert Zeke Emanuel describes a hospital episode where his father received unnecessary interventions without taking the patient's or family's preferences into consideration.
New Kansas proposal breaks impasse on expanding Medicaid
Washington Post
Kansas Gov. Laura Kelly and state Senate Majority Leader Jim Denning announced Thursday that they have struck a bipartisan deal to bring Medicaid expansion to Kansas.
The expansion would make more than 100,000 Kansans eligible for health coverage through Medicaid. The plan does not include work requirements, but it does mandate a $25 a month premium for new enrollees—a detail that will require approval from federal regulators. Gov. Kelly’s goal is to pass the plan through the legislature this year so that new enrollees can begin coverage in January 2021.
WHAT WE’RE LISTENING TO
A renewed focus on health care in 2020
Detroit Today, WDET Radio
Julie Rovner of Kaiser Health News was interviewed by “Detroit Today” about how health care is playing out in the 2020 presidential campaign and concerns over changes brought by the ACA. The conversation included focusing on rising health plan deductibles, Democratic candidates’ battle over a “Medicare for All” plan and the growing concerns about surprise medical bills.
Related Posts
In a 2-1 opinion, the Fifth Circuit upheld the decision of the District Court for the Northern District of Texas that found the ACA individual mandate unconstitutional. However, the appellate court remanded the case to the District Court for additional analysis regarding whether other parts of the ACA can stand without the individual mandate.
NCCS would first like to offer assurances to those Americans who are insured by health insurance plans purchased through the ACA marketplaces, those who are enrolled in Medicaid authorized by ACA, and many others who enjoy the pre-existing condition protections and other protections of the ACA. You will continue to benefit from the important programs and protections of the ACA while the litigation continues and the courts proceed with consideration of the ACA challenge.
At the same time, NCCS is disappointed that a cloud of uncertainty hangs over the ACA, a cloud that causes worry for individual consumers and that affects the implementation and administration of the law. We will continue to press lawmakers to reassert their support for the patient protections of the ACA, for the subsidies that make insurance affordable for many Americans, and for access to Medicaid. We have evidence that the ACA has improved access to cancer care for many vulnerable Americans, and we are not satisfied to see that progress reversed.
We understand that the state attorneys general who are defending the ACA will ask the Supreme Court to review Texas v. United States without delay and before the District Court reviews the case again on remand. Because this request may be the fastest path to resolution of the legal questions surrounding the ACA, we support this effort.
Coalition Statement
NCCS also joined with 28 patient groups in a statement voicing concerns with the recent ruling in the ACA lawsuit. Read the statement below or view in a new browser tab.
Previous NCCS Coverage of Texas v. United States
17 Patient Groups Urge Appeals Court to Uphold Health Care Law
