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
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
Related Posts
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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
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HEALTH CARE HIGHLIGHTS
House Members Solicit Public Input on "Cures 2.0" Bill
Representatives Fred Upton (R-MI) and Diana DeGette (D-CO) released a request for public input on a potential new bill they are calling “Cures 2.0” which would build on the 21st Century Cures Act. The duo says this legislation would focus on improving patients' access to digital health products and new medical therapies. The bill would speed up insurance coverage by Medicare, Medicaid, and private payers for new FDA-approved drugs and devices, and would increase the use of real-world evidence in FDA’s regulatory approval process. The proposed legislation also aims to improve family caregivers’ health literacy. They requested input on the bill by December 16, 2019.
Oncologist Stephen Hahn Confirmed as FDA Chief
Yesterday, the Senate voted 72-18 to confirm Stephen Hahn, MD, as the new Commissioner of the U.S. Food and Drug Administration (FDA). E-cigarettes were a focus of his confirmation hearings last month. Hahn’s background is in radiation oncology, with specializations in treating lung cancer and sarcoma. He most recently served as MD Anderson Cancer Center’s chief medical officer.
Congress Reaches Deal on "Surprise Billing" Bill
On Sunday evening, leaders of several key health care committees announced they had come to an agreement on “Surprise Billing” legislation. As Vox reports, the legislation may be included in the end-of-year government spending bill that must pass before December 20. Now that the committees have hashed out a deal, it falls on House and Senate leaders to figure out the path forward. However, just yesterday, the House Ways and Means Committee on Wednesday put out its own, “rival” proposal to protect patients from surprise medical bills. This proposal could throw a wrench into a speedy passage of the deal struck last weekend. The measure from Ways and Means would take a different approach in that it would first let insurers and doctors try to work out payment on their own, and if they cannot come to agreement, an arbitration process would begin. Full text was not yet available. As The Hill reports, the Energy and Commerce proposal, in contrast, relies in large part on essentially setting a payment rate based on the average price for that service in the geographic area.
House Passes Drug Pricing Bill, H.R. 3
Yesterday, the House of Representatives passed H.R. 3, the Democrats’ drug pricing legislation. The bill was passed largely along party lines. The legislation would allow the government to directly negotiate drug prices for Medicare recipients as well as others purchasing drugs. However, the debate is far from over, with the Senate still considering a separate drug pricing package and President Trump vowing to veto H.R. 3 if it makes it to his desk.
CHART OF THE WEEK
Potential Impact of Texas v. U.S. Decision on Key Provisions of the Affordable Care Act
Kaiser Family Foundation
The 5th Circuit Court of Appeals is expected to rule on the ACA lawsuit any day now. If the court confirms the decision to invalidate the ACA, the entire law — including pre-existing conditions protections — would be struck down. Kaiser Family Foundation recently released an analysis showing that rolling back the ACA would affect nearly everyone. Check out their chart to see how it could impact you.
IMPORTANT READS
M.R.I.s Can Better Detect Cancer in Women with Dense Breasts, Study Finds
New York Times
A large study found that MRIs detected tumors missed by mammograms, cutting interval cancers by half or more. Just under half of women over the age of 40 have dense breasts, which means they have more connective and fibrous tissue.
From the Ground Up
CURE Today
Cancer survivor Dana Stewart shares how she rebuilt her life after a breast cancer diagnosis nine years ago.
“The decent news is that you can pick yourself up off the ground and change the view. It’s tough and scary and frustrating and so on and so on. It is, however, possible. I took the approach of letting my cancer diagnosis change my viewpoint. Granted, this happened after lots of crying, screaming and angry tears.”
Depression Affects One-Third of Lung Cancer Patients
Ohio State News
Roughly one-third of patients diagnosed with lung cancer have moderate to severe symptoms of depression, a new study suggests. The lead author of the study says, “Some oncologists may have a mindset that ‘of course, you’re depressed, you have lung cancer.’ This may show an under-appreciation of the breadth of depressive symptoms and other difficulties which accompany it.”
Surprise Billing Legislation Explained
Vox
There have been quite a few surprises with the "surprise billing" legislation. First, it seemed like it couldn’t be done with hospitals and doctors lobbying hard against the legislation. Then, lawmakers struck a bipartisan deal over the weekend, and now a new “rival” proposal to adds to the surprises.
Related Posts
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HEALTH CARE HIGHLIGHTS
Congress Passes Spending Bill
Yesterday, Congress approved a stopgap spending bill that would avert a government shutdown, but only until December 20. Until then, funding will be available for all federal government departments and agencies, as well as a number of health care community programs. The divide in Congress remains around the border wall, the same issue that led to last year’s government shutdown.
ACA Open Enrollment, "Junk" Insurance Plans
Open enrollment for the Affordable Care Act’s (ACA) Healthcare.gov marketplace is in full swing. After major technical glitches, in addition to cuts to enrollment marketing and assistance, the number of enrollees is down this year from past years. As the Washington Post reports, the administration is also redirecting some Healthcare.gov users to private insurance exchanges that sell “junk” health plans — short-term limited duration plans that do not include the ACA’s patient protections such as requiring coverage for pre-existing conditions.
From the Washington Post:
NCCS opposed the expansion of short-term limited duration plans. Read more about why these plans are harmful for patients. »
Ban on Flavored E-Cigarettes
President Trump will meet with vaping industry executives and public health advocates today to discuss a ban on non-tobacco flavored e-cigarettes. The administration has wavered in its support for a ban on flavored e-cigarettes, but with recent reports and mounting evidence that they lead to vaping-related lung illnesses, the President has called a meeting with key stakeholders to address the problem.
Vaping was also a focus during the Senate confirmation hearing this week for Dr. Stephen Hahn, Trump’s nominee to lead the FDA. Dr. Hahn, a radiation oncologist and chief medical executive of MD Anderson Cancer Center, addressed the issue of vaping at the hearing on Wednesday. He pledged to take bold action to address the crisis but did not commit to a full ban on e-cigarettes. Dr. Hahn responded, "I think it’s a serious issue. And I think it requires bold action to keep these out of the hands of kids.”
CHART OF THE WEEK
Insurer Participation on ACA Marketplaces, 2014-2020
Kaiser Family Foundation
ACA experts report that insurers are entering new states and expanding their footprints. Despite repeal of the individual mandate penalty, premiums are dropping. The ACA continues to be resilient. Read more »
IMPORTANT READS
Open Enrollment: What you need to know
Kaiser Health News
With a lot of unknowns around the ACA lawsuit, the marketplace is still strong and experts agree that not a lot will change for 2020, so sign up for your health coverage now!
FDA wants stronger warning on breast implants about risks
STAT News
The Food and Drug Administration (FDA) issued new guidance on communication with patients about the risks of breast implants, including a proposed requirement for a boxed warning and a patient decision checklist, proposed to assist patients in making decisions regarding breast implants.
Integrative Oncology
Cancer Today Magazine
Cancer Today Magazine featured NCCS CPAT Member Betsy Glosik in an informative article about the growing trend of cancer patients using complementary therapies — such as yoga, acupuncture, and tai chi — while taking conventional treatment. Glosik said, “I was looking for something else that wasn’t going to be another drug that was going to tear my body down.”
Related Posts
NCCS Statement on HHS Final Rule for Short-Term, Limited Duration Health Plans
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HEALTH CARE HIGHLIGHTS
House Drug Pricing Bill Advances Out of Committee
The biggest health care news this week was the approval by the House Ways and Means Committee of H.R. 3, the Lower Drug Costs Now Act — Speaker Pelosi's drug pricing bill. The bill advanced along party lines, with opponents citing a recent report from the Congressional Budget Office (CBO) that said the plan would harm drug innovation and reduce the number of new drugs coming to the market. To address this concern, some Democrats are considering investing savings from H.R. 3 into the National Institutes of Health (NIH) to fund drug research. However, pharmaceutical industry lobbyists argue that NIH cannot replace private sector research and development.
The CBO score also showed that the plan would save Medicare $345 billion over the next decade, as a result of a provision that would allow the government to directly negotiate lower drug prices with private companies in Medicare’s Part D drug program. The bill will now head to the full House floor for a vote in the coming weeks. President Trump has not indicated whether he would support the bill, and Paige Winfield Cunningham of the Washington Post reports that Speaker Pelosi and President Trump are still working on a drug pricing deal. She writes, “Were the pair to arrive at any agreement on drug prices, it would be in the face of enormous odds.”
Meanwhile, on the Senate side, Senators Grassley (R-IA) and Wyden (D-OR) have introduced their own drug pricing plan — this one bipartisan. Their legislation would impose an out-of-pocket cap for beneficiaries and cap drug price increases at the rate of inflation. The Grassley-Wyden bill has the support of the President and has been described as “middle ground” by lawmakers. With the government funding deadline coming up in just a few weeks, this fall is sure to be busy in Washington.
CHART OF THE WEEK
With the ACA’s open enrollment starting November 1, Kaiser Family Foundation has a helpful fact sheet outlining health plan options and what’s covered through the ACA.
Thanks to the financial help that nearly 9 out of 10 HealthCare.gov customers receive, 1 out of 3 marketplace customers will have a plan available in 2020 with a premium of less than $10 per month, according to new data released this week by the Centers for Medicare and Medicaid Services (CMS). The vast majority will have a plan available for less than $100 per month. However, many consumers are not aware their premium costs could be that low.
Get America Covered created a chart outlining a knowledge gap among consumers between what they consider an affordable premium and what they expect coverage to actually cost:
IMPORTANT READS
Growing tumors in a dish, scientists try to personalize pancreatic cancer treatment
STAT News
Dr. Joseph Grossman is leading a study where pancreatic cancer cells are grown in lab dishes and are each dosed with different drugs in order to identify personalized treatment options for one of the deadliest cancers.
State Border Splits Neighbors Into Medicaid Haves And Have-Nots
National Public Radio (NPR)
This article paints a personal picture of a national issue by illustrating the stories of people in neighboring states, one that chose to expand Medicaid and one that did not. A recent University of Michigan study found Medicaid expansion substantially reduced mortality rates from 2014 to 2017.
Opinion: Blame rising cancer overdiagnosis on ‘irrational exuberance’ for early detection
STAT News Opinion
Even though overall mortality from cancer is falling, the overall incidence is rising. In this opinion piece, Dr. H. Gilbert Welch blames overdiagnosis — the diagnosis of cancers not destined to cause symptoms or death.
Trump Is Trying Hard To Thwart Obamacare. How's That Going?
National Public Radio (NPR)
NPR outlines the five biggest changes made to the ACA during the Trump Administration, including the repeal of the individual mandate and attempts to repeal the entire law. Despite all these efforts, the ACA is still the law of the land and provides critical health coverage to millions of Americans.
Related Posts
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HEALTH CARE HIGHLIGHTS
Ads Offering Bare-Bones Coverage are Everywhere
This Axios article highlights the growing trend of plans being advertised across the internet as “Trumpcare” plans. The problem? “Trumpcare doesn’t exist, and many of these advertised plans offer bare-bones coverage.”
"It's impossible to expect consumers to discern between the good guys and the con artists," said Sabrina Corlette, a health insurance researcher at Georgetown University. "And it's not the good guys that pop up on the first page of your Google search results."
As we’ve mentioned in recent Roundups, more stories are coming to light of people facing large medical bills because the comprehensive insurance they thought they were purchasing turned out to be “junk health insurance.”
California’s Surprise Billing Law
While progress on surprise billing legislation crept along in Congress, California moved forward with its own version. In the New York Times, Sarah Kliff and Margot Sanger-Katz reported on the implementation of the California law. Kliff and Sanger-Katz conclude that the law is providing protections to patients, pointing to data from two new studies. However, physicians strongly oppose the law and are warning Congress not to follow the example of California by adopting a benchmarking approach to surprise billing. With surprise billing increasingly in the news, this article provides a good overview of the topic and includes a look at the issues raised by surprise billing fixes.
CHART OF THE WEEK
Nearly two in five adults lacked confidence in affording health care if they became very sick.
Commonwealth Fund
There is increasing focus in the cancer community on “financial toxicity,” the term used to describe anxiety and other problems some patients face due to the high cost of health care. This graph, from the Commonwealth Fund, succinctly shows how respondents feel about their ability to afford the care they need if they became seriously ill. Even with some type of insurance, 38 percent of respondents reported little or no confidence in being able to afford care.
Read the full Commonwealth Fund survey report here »
IMPORTANT READS
Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention
Time Magazine
In an excerpt published by Time Magazine from her new book Radical: The Science, Culture, and History of Breast Cancer in America, breast cancer survivor Kate Pickert helps raise awareness about how little funding goes to metastatic breast cancer research.
She writes, “…some 40,000 American women still die from breast cancer every year. Despite the billions of dollars collected and spent on breast-cancer research over the past half-century, relatively little has been devoted to studying metastatic-breast-cancer patients or their particular forms of the disease.”
With the Affordable Care Act’s future in doubt, evidence grows that it has saved lives
Washington Post
Many believe the 5th Circuit Court of Appeals’ decision on whether or not to invalidate the Affordable Care Act (ACA) could happen any day. As the nation awaits the decision, more evidence is showing the ACA’s impact on the health of Americans. As the Washington Post writes, “[There is] an emerging mosaic of evidence that, nearly a decade after it became one of the most polarizing health-care laws in U.S. history, the ACA is making some Americans healthier — and less likely to die.”
Workplace Accommodations Would Ease the Burden for Patients With Cancer
OncLive (Free registration required, no paywall)
There are so many factors when it comes to receiving treatment for cancer. Access to quality, affordable health care is one, while appropriate workplace accommodations are another, as Victoria Blinder, MD, MSc, points out in this article. “Workplace accommodations are necessary because financial toxicity during treatment may impair a patient’s ability to successfully fight cancer and retain employment over the long term.” If all patients are to receive high quality cancer care, regardless of race or socioeconomic status, then employers need to provide necessary accommodations for cancer patients.
He disclosed his 2-year-old’s cancer in a TED Talk. Liver donors lined up to help.
Washington Post
Wajahat Ali, a contributor to the New York Times and CNN, shared the cancer diagnosis of his two-year-old daughter during a TED talk. This moving article shares his experience and how over 500 people, mostly strangers, volunteered to be liver donors.
