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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If you have any cancer-related questions or concerns about COVID-19, please reach us at www.canceradvocacy.org/contact.
HEALTH CARE HIGHLIGHTS
Policy Updates
Fourth Relief Package Passed
It’s hard enough to keep up with the day of the week, much less which relief package Congress is currently considering. We’re here to help make sense of what’s happening on Capitol Hill during these unpredictable times. Last week, Congress approved a fourth package totaling $480 billion to help small businesses and hospitals and expand testing for the coronavirus.
Cancer Survivors Have Higher Risks from COVID-19
Early this week, a study that compared cancer and non-cancer patients in China with covid-19 was published and presented at the American Association for Cancer Research (AACR) Virtual Annual Meeting. While the study was small, the findings showed that cancer patients — especially those with blood or lung malignancies, or tumors that have spread throughout the body — have a higher risk of death or other severe complications from COVID-19 compared with those without cancer.
Supreme Court Ruling on Risk Corridor Case
On Monday, the U.S. Supreme Court ruled in favor of insurers in the Affordable Care Act (ACA) risk corridors case. The ACA included so-called risk corridor payments to compensate insurers for the risks that they might bear from participating in the marketplaces without knowing who would purchase coverage. If medical costs exceeded the premiums collected, an insurer would be eligible for payments from the federal government. After Congress refused to appropriate the funds for the risk corridor payments, several insurers sued. Justice Sotomayor, writing for the majority, said that the government was bound by a simple principle of honoring its commitment as spelled out in the ACA. The insurers will receive the payments now. Health experts have already raised questions about how the payments will be distributed among insurers.
WHAT WE’RE LISTENING TO
NCCS Podcast: "Cancer Convos." NCCS CEO Shelley Fuld Nasso interviews Dr. Don Dizon, a medical oncologist who is chronicling his experience on the front lines of oncology during COVID-19 in a series for Medscape entitled COVID-19: Diary of an Oncologist. We talk with Dr. Dizon about the challenges of delivering cancer care and conducting clinical trials during a pandemic.
He shares his advice for cancer patients currently in treatment, as well as for cancer survivors coping with the stress and anxiety of life after cancer. We also talk about how he engages on social media and uses TikTok to create fun, educational messages. He also shares how virtual communities can provide support during challenging times.
Listen and Subscribe to Updates »
Listen to the Episode on SoundCloud »
Bipartisan Health Experts Send Letter to Congress
In an NPR interview, Scott Gottlieb, former head of the FDA, and Andy Slavitt, who led the Centers for Medicare and Medicaid under Obama, talk about their plan to reopen the U.S.
CHART OF THE WEEK
A New Common Cause of Death
Business Insider
Business Insider compiled data from the COVID Tracking Project, the Centers for Disease Control and Prevention, the National Highway Traffic Safety Administration, and the US Census Bureau to show how COVID-19 deaths over time compare with other common causes of death in the US: heart disease, cancer, bad flu seasons, and car crashes.
WHAT WE’RE READING
How to Think About Your Cancer Care
TIME
Dr. Esserman gives advice on what options are available to cancer patients during the COVID-19 pandemic. She said, “Don’t panic…There is time to learn about your options and sort out what is right for you.”
When Disparities Widen: COVID-19 in Minority Patients with Cancer
Cancer Letter
Doctors Olazagasti and Duma discuss disparities in COVID-19 patients with cancer. They say that the popular statement, “we are all on the same boat,” isn’t true for many Americans.
U.S. Medical Testing, Cancer Screenings Plunge During Coronavirus Outbreak
Reuters
More COVID-19 Information
NCCS joined with 28 patient and consumer groups to urge the administration to implement a special enrollment period as the nation fights to protect its citizens from the COVID-19 virus. The Affordable Care Act does allow for people who have lost employer-sponsored health insurance to enroll, which is important to the nearly 10 million people who filed unemployment claims in March.
An excerpt from the statement:
Read the Full Statement
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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.
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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
